I hope her world makes sense again

Posted on July 25, 2014 by A Journey With Mom

It’s 2:30 in the morning, and I am wide awake. Sleep eludes me. It’s been a crappy day. A long crappy day.

Mom had two appointments scheduled for today: Follow up with cardiologist and the long-awaited dementia evaluation. She knew about both appointments, but I know she did not fully comprehend what the evaluation entailed. In fact, I’m pretty sure she didn’t remember the evaluation was even on the calendar. We talked about it several weeks ago when it was first lined up, but her loss of memory has become a sore point so I don’t ‘go there’ any more than necessary.

The day just started out bad. We have over an hour drive to the doctor’s location, and Mom was cranky and irritable the whole way. I was practically biting my tongue in half by the time we arrived. Once at the office, the nurse, doctor, and receptionist all got a dose of cranky-pants. My sister and I tried to cover for her, and Mom says, ‘ my children are too nice’. I don’t think that was meant as a compliment.

At lunch, Mom didn’t like the size of the salad, and barely touched her soup. She seemed bored with the conversation, and frankly, tired of us. I could be mad, and yes, I was somewhat, but mostly, I was just sad. Six months ago, Mom would relish an outing with her two daughters. She would devour her lunch and steal every conversation. Who is this woman?

I was gearing up to confront her behavior, but after lunch, we relaxed at my sister’s house between appointments, and Mom settled down and seemed less frustrated with life. Ok. Good. I hate conflict.

Before we left for the appointment, I reminded her that we were going to talk about her memory issues with this new doctor. But once there, I know she still felt ambushed. Betrayed.

The doctor was wonderful. He was kind, gentle, and extremely tactful. He treated us all with respect, and I was very impressed with him. The evaluation lasted an hour and a half with questions directed mostly to Mom, but some to me as well. Mom didn’t fail miserably. But she did fail. That’s probably a bad way to express it. As a failure. But today, the test was about living independently and driving again.

He said no to both in the end.

There. Now. We. Know.

My sister got to get in her car and drive away after the appointment. I wasn’t so lucky. The car ride home was a bit tense. Mom had a few things to say in the first few minutes then sulked most of the way home. Ok. I’ll give her that. It stinks. I don’t blame her. I’d be mad too.

Five miles from home, I told her that I have to be gone for most of the day tomorrow, but she can stay back and relax. My youngest daughter will be there to keep her company. Mom says, ‘I can just go home’. Her comment surprises me. What? ‘Mom, the doctor said you cannot live alone right now’. ‘He did not! He said my memory was fine’. Sigh.

We toss that convo back and forth for while, and I finally decide some tough love is overdue. ‘Mom…

…we all enter phases of life not of our own choosing. ie. the empty nest, the loss of a spouse. THIS is just another phase of your life. You may not like it; we don’t either. We want you to go home. But that is not an option. You can be mad about the change. You can be mad about being sick. But that doesn’t alter the facts. This new phase doesn’t mean you don’t have a life. You just have a new life. And you have embraced change before. You can choose to find the best things in this new phase or you can sulk. The choice is yours’.

Is she sulking? Is she mad? Discouraged? Depressed? Sad? Yes. Absolutely yes.

Me too.

I think she needs time to grieve. Maybe we both do. She has lost the life she knew, and I have lost the mother I knew.

A new phase for both of us.

May we both embrace the change and find the best parts of this new life.

I hope she can find joy, and peace, and contentment. I hope her world will make sense again and she can find her rightful place. I hope she shines again.

But for right now — it still feels like just a long crappy day.

Lord, more than ever, we need your wisdom and discernment. We need patience and kindness. The next few days and weeks may be very difficult as we make hard decisions. Please direct us. May we do what is best for Mom. May we shower her with love, and comfort her as she enters a new phase of life. May she know that she is loved. Prepare her; and may she be willing to explore some new exciting options. Lord, we need your strengthen and compassion. Please guide us.

Its Not About Me And Yet…

Posted on July 18, 2014 by A Journey With Mom

Mom just fixed her breakfast. She has been fixing her own breakfast for about a week now. She brought her laundry out to the mud room yesterday — rolled it on her walker. I was already in that room, so I loaded the washer for her and later transferred it over to the dryer. Once it was done, I took it to Mom, and she folded it. This is good progress. For months, she has not had the health or energy to do any of these things. We ran a few errands earlier this week, and Mom seemed to enjoy that day. She got in and out of the car several times and did fine. She bought some new clothes at a local shop — much needed items as her own clothing hangs on her now 60-pounds-less frail body.

All that progress, but still, I sit here looking up Movers and Self-storage Units. She wants to go back to her apartment. She loves that apartment. It is sad. Heartbreaking. Melancholy: a gloomy state of mind. Sigh

Even since our “family meeting” on Sunday, where we talked very frankly to Mom about her physical and mental health and explained why she cannot go back to her apartment, she tells everyone she is going home next week. And seriously, I do not believe she is being stubborn; I think she does not remember most of that Sunday conversation, and in her mind, she intends to go home.

And that is why she cannot.

She is still too confused to live alone.

Her physical body is healing and gaining strength. Her clarity has improved dramatically over the last 3 weeks, but her mental state seems to have stabilized about a week ago. She is almost “there” but not quite. We cannot, in good conscience, allow her to go back to an apartment building to live alone. Would she forget to turn off the stove? She never has. But what if?

My Mom is in a hard place. She has had so much taken away from her in a short period of time. Even though she just celebrated her 84th birthday, and by anyone’s standards, that is an old age, she was on the golf course 9 months ago. She took a road trip with a friend out West just a couple of years ago. This is not the average 84 year old woman.

I have been a little uptight and anxious the last few weeks. I have been too quick to complain and see the negative. Her half well/half sick state challenges me on many levels. Shame on me. I can do this better. I will never have another chance to do this. I want to do it right.

This is my Mom’s story. It’s not about me, but yet, do I have some control on how we all walk down this road? My attitude and mental state affect not only me, but they affect my Mom and my children and grandchildren. It IS my story in that sense. How do I want to do this? Who do I want to be in this? When I look back…

Lord, I need discernment, wisdom, kindness and strength. Help me to do this better. I want no regrets. Help me to do this right.

If She Passes “the Test”, Does She Get To Call the Shots?

Posted on July 8, 2014 by A Journey With Mom

Mom is holding her own. It is rather incredible, and we are happy that she appears to be doing better. We had another big weekend with lots of family. She participated in the outing and it was fun to see her interact with many of the great-grandchildren.

There are a couple of concerns: she continues to lose weight, and has dropped 9 pounds since she came home from the hospital 12 days ago. Due to the congestive heart failure, I have all the instructions on what to do if she gains weight: No more than 2 pounds in a day; no more than 5 pounds in a week. But what do I do about her losing weight? Her appetite is good — she eats 3 meals a day plus a small snack in between each meal. She is always excited about a dish of ice cream after supper; cookies in the middle of the night (some habits die hard, I guess). We have gone through her supply of Ensure — guess I’ll restock that cupboard.

The other concern is her desire to go home. Here we go again. She tells everyone that she is going home in a few days. Besides myself, three other family members have told her that she is not going home. Her apartment lease is up this month. We have made plans to pack and store. Her lease has not been renewed. I have already canceled some of her utilities. Sigh

She has stated three times today, ‘do not let anyone take anything out of my apartment’. And three times she has asked me, ‘what would they do with all my stuff?’, if they did. And yes, three times I have told her, ‘pack and store’. So there is that. The repeating. So in circles we go. Round and round. Over and over.

This. is. exhausting.

Can I just be honest? She is much easier to take care of when she is really sick. That sounds harsh, and I don’t mean to say I want her to be sick. I don’t. I just mean to say this is challenging. This half-sick/half-well is really hard.

Taking care of an aging parent is more difficult than I expected. There are layers of crisis. Just when we think we have a plan, the situation turns another direction. Two weeks ago, we sincerely thought Mom was on her death bed, and now, here we are fighting about her returning home again. What a roller coaster ride.

It. is. just. plain. hard.

I have talked with my sisters briefly today, and they know we might have a “situation” on our hands. I suggested that we have Mom evaluated by a Neuropsychologist. That was actually our plan a few weeks back — before she ended up staying over 20 days in two different hospitals. The main reason she couldn’t go home was due to the dementia. But hey, she is pretty darn lucid these days. And we are concerned about her allergies, and how they tend be extremely irritated in that apartment. But, if she passes THE test, then I guess she is an adult, and she gets to call the shots. (There will be no complaining about the watery eyes, headaches or numerous sneezes. Well, at least, there will not be a lot of sympathy extended).

I have raised 4 daughters, and yes, there were challenges. There are still challenges. However, this taking care of a parent tests me in different ways. This changing of roles. Every day, we are jockeying for our positions. I never know if I will have a passive opponent or an active, dominant one. And when my mother is my mother, she is dominant (that is a nice way of saying she is stubborn).

I guess I’ll call the apartment complex in the morning. Hopefully, they haven’t leased her apartment to a new renter. If that is the case, I may be in big big trouble.

But, you know, I’m just thinking out loud here. I don’t really know what will happen. I don’t know what I’ll do. We will most likely have another family meeting. I will probably not call the apartment.

This may get ugly before it gets done. There is a vocal, sick parent, 4 siblings and several very involved in-laws trying to make the best decisions. Anxiety on steroids. Oh Lord, help us…. again.

Who Are You, and What Did You Do With My Mother?

Posted on July 2, 2014 by A Journey With Mom

Who are you, and what did you do with my mother?

That is the question I just asked my 84 year old Mom as she sits painting her fingernails in my living room. She smiles as she kicks her legs out and asks me if I think she got all the hair. What? She says she shaved her legs this morning. Who is this woman?

She came home from the hospital last Thursday evening. If you’ve read my previous posts, you know she has been one very sick woman, and quite frankly, we thought she wasn’t long for this earth. As the doctors talked about releasing her, I was very concerned about my ability to take care of her this time around — she was so sick in the hospital. All day Friday, Saturday, and Sunday morning, she was weary, weak and had absolutely no energy. I intended to “make her comfortable” and hope for the best, but expect the worst.

But Sunday afternoon, she rallied, and we are shocked. We don’t know what to think. Is it the new thyroid meds? Is it my sister visiting from out of state (adrenaline)? Weren’t they just chasing a “last stage, incurable cancer last week? (we have heard nothing more out of the oncologists) Wow.

She doesn’t look like the same woman!

She went with my sister to their rented lake cottage on Sunday afternoon, out to lunch with us on Monday, and back to the cottage this afternoon. Amazing.

I don’t know what this means.

Yes, she is weak and certainly, still frail. But her energy level is up, and her appetite is good — very good. Even her dementia is barely noticeable; she seems pretty lucid.

This could just be a fluke. Maybe she is just having a couple of really good days. I don’t know. Time will tell.

But for today, we’ll take it, and be grateful for it. Thank you, Lord.

Old Meds, New Meds, Discontinued Meds, but No Diagnosis

Posted on June 27, 2014 by A Journey With Mom

Mom came home last night! She didn’t get home until after 9 p.m. — long long day. My sister-in-law volunteered to stay with Mom yesterday at the hospital and wait as things progressed toward discharge. The process was agonizingly long, and she gets major points for hanging in there. When they finally arrived, Mom, exhausted, collapsed in her chair.

It took several attempts and 7 pillows to get Mom comfortable in bed. Once we had the pillows and elbows and knees in just the right place, she fell asleep quickly. I make a mental note to check on hospital bed rentals in the morning. At 3 a.m., I hear Mom yell out — almost scream. I sit straight up in bed, and say, ‘what was that’? My husband mumbles something as I run to Mom’s door. I can hear her breathing from the hall, nice and even. I listen for a few minutes and then go back to bed since she is obviously sleeping soundly. As I pour my morning coffee, I ask my husband about the scream. He heard nothing. It is then that I realize Mom didn’t yell at all — well, only in my dream. I don’t usually dream. I hate to dream. Gosh, get a grip.

Mom is up at 7 a.m., and is showered, dressed and fed by 9. Showered. Yes. First one in eight days. Why don’t hospitals give showers anymore??

I call the pharmacy and then the hospital to track down some help for a prescription that was wrong. I attempt to call several doctors for post-hospital appointments, but never actually get that done. I have my grandson again today, we had the first visit from Home Care to register Mom, and the day was just too busy to get to everything on my list. That’s okay; Tomorrow is another day.

I feed Mom goulash with macaroni for lunch. I know! I know! Goulash should not have macaroni, but that is how she made it when I was a child so goulash-mac it is. I also decided to make cherry jello with fruit cocktail (Blech). Does anyone make jello anymore? But I thought she might take comfort in some of these old-fashioned staples. I smile as she eats every bite with compliments. She is easy to please.

So here we go again, one day at a time. Mom has had a fairly good day — better than I expected actually. She ate well, watched two Doris Day/Rock Hudson movies, watched more news than is probably good for her (she does enjoy her Fox), and worked on a crossword puzzle. She had a phone call or two, and wanted to hold the baby for a bit. That is a good day.

We still don’t have a clear-cut diagnosis/prognosis from any of the numerous doctors she has seen in the last month. We have new meds, old meds, and discontinued meds. But still no diagnosis. I can’t think about it. We are just going to feed her well, keep her as comfortable as possible, help her to get as much “exercise” as she can tolerate, and pray that she gets better.

I don’t know if she will get better. No one does — that is abundantly clear after over 20 days in the hospital in the last calendar month!

Only God knows what Mom will face tomorrow. I’m choosing to trust Him, and try not to worry about it, because He loves her even more than I do.

We’re Haunted by the Shadows – enough already.

Posted on June 25, 2014 by A Journey With Mom

The not knowing; the not naming; that is the hard part. It causes anxiety and worry. It makes us weary and hopeless.

“God’s good. Just naming it… Just naming it. When you don’t have the name for something, you’re haunted by shadows. It ages you.” That is a quote from Ann Voskamp’s book, One Thousand Gifts.

We are to that point. Just tell us what is wrong with Mom. I think we could handle any news now. Good or Bad. We just need to know. We need to plan. We need to act. This waiting is wearing on us. And it’s wearing on Mom.

She looks old and feeble and just plain tired. I am sad. She looks beaten. Apathetic.

Don’t give up, Mom. You’re a fighter.

Maybe she sees despair in us. Maybe she’s feeding off our weariness. Maybe we have given up. It’s the not knowing. It drains the life. Day after day. No action. We don’t know what to do.

This has to stop.

I’m going to lobby to get Mom home today. Enough tests. Seven hospital stays. Dozens of tests. Too many doctors to even count anymore. Let’s treat what we can name. And forget what remains elusive. A cancer won’t be treatable anyways. To quote a famous first lady, ‘what difference, at this point, does it make’? Let’s get her home. Let’s give her some life. Enough already.

Mom is wasting away in a dreary hospital. I don’t want her days to be like this. I want her to have some joy and happiness. Surely at home, we can find ways to brighten her days.

Time to reassess our goals.

Lord, I want to see her smile. I ask that You give the doctors wisdom and insight. I pray that she regains her health. If she does not, please allow her days to be good and joyful. Give all of us hope and help us to encourage her. I pray that I can continue to care for her here in my home. Give me patience and kindness. Give me wisdom and discernment. Thank you, Lord. I trust You with her. I know You know the future even if we do not. Help us not to fail her.

Who Would Ever Think the Dementia Could Be a Blessing?

Posted on June 23, 2014 by A Journey With Mom

I told myself I should journal over the weekend. A little voice kept telling me to post the good news. But I was reluctant to go down yet another “illness” path. We have chased after a few diagnosis lately. Was this really the answer? It was almost too good to be true. And sure enough, with a phone call today, everything has changed once again.

On Friday, after the cardiologists were at a loss, they were going to release Mom from the hospital. However, since her thyroid numbers were off, they decided to call in an Endocrinologist to see what he could make of Mom’s symptoms. It didn’t take him long at all: hyperthyroidism. It’s been known to cause Afib. Was it the cause of her’s? Did they miss it last December? Was this the “we’ve missed something” her doctor was talking about? Wow.

Good news. Bad news.

It is treatable. Yay. It should have been caught 8 months ago. Boo.

Can treating her thyroid reverse all her symptoms? She has lost so much, I don’t think she’ll ever get back to her baseline. But she still might improve and get “healthy” again.

It was the best news we had had in months. Treatable. Curable. Reversible.

Over the weekend, a heaviness lifted, as I thought about Mom’s returning life. Would she stay with us? Should we cancel her apartment lease after all? Could she putt a couple more rounds before fall’s end? I looked again at the website of the retirement village that faded into the background as Mom’s health declined. Relief. Hope. Joy even.

I thought she’d be released from the hospital today. I got a call from the pharmacy that a prescription was ready for pickup. I thought, ‘ok, that must be the thyroid medicine’. I was waiting on the call from the hospital. But the call came from my sister.

“She isn’t being released today”.

“Cardio doctor concerned about shortness of breath”.

“Cancer markers are very high again”.

“Calling in the oncologists …. again”.

Big Sigh. Big Fat Excruciating Sigh. Seriously?

Several hours later, I receive another call — this time from the oncologist. I am the first one on Mom’s family list, so I often get the call from the hospital. I have a bit of trouble understanding her, but we do our best to communicate. She says, ‘This is a very difficult case. We have found nothing, but when we do, it will be in the advanced stages and it will be incurable.” The boldness of that statement catches my breath mid-lung. I stop multitasking and sit, grab a pen, and begin to write as she continues to talk.

We’ve been down this road before. She knows that. She has all the reports from Mom’s stay 3 weeks ago at another, neighboring hospital. However, she insists that ‘another set of eyes’ reviewing those reports will reveal the cancer source. This oncologist is just as convinced as the previous oncologist was that my mother has cancer.

Would she. Could she. Should she. No, probably not.

It is now 3 p.m. I live over an hour from the hospital and I am caring for my 6 month old grandson today until 5:30. I pick up the phone and call my mother. I need to hear her voice. I need to know what she has comprehended from all this medical speak. Her voice is strong. She is just getting back from “some test”, xrays, she thinks. I talk to her about the high markers, and yes, she knows they are looking for cancer again. She remains positive as she says, ‘well, they didn’t find it last time’. Yay — good for you, Mom. We talk a few more minutes, and I tell her I will be down early in the morning.

The first post in this blog started with the diagnosis of my mother’s dementia. I thought that was our journey. And even though her memory loss has been apparent throughout the last several months, it has definitely not been the focal point of our daily walk. Mom has been fighting for her life. I guess dementia has played its biggest role in keeping my mother from that realization. She didn’t know/understand/comprehend that these could be her last days.

Who would ever think that dementia could be a blessing?

I don’t know what to say. I don’t know what to think. I don’t even know what to feel anymore.

Another Doctor. Another Hospital. Stay Number 7

Posted on June 18, 2014 by A Journey With Mom

My sister did some research and found a cardiologist who specializes in Pulmonary Arterial Hypertension. Mom got an appointment within 4 days!

The office is over an hour from my home. We have to leave at 6 a.m. to make the appointment. Oh my. That is not too early for me as I enjoy getting up with the chickens, but wow, the crack of dawn is a wee bit early for Mom. But we prepare the night before, and plan the best we can.

Mom goes to bed early, but doesn’t stay down. ‘I feel like I’m drowning when I lie down’. What? She has never said that before. Oh, Mom, please just hold on one more night. The ER lights flash before my eyes. She sits for a while in her chair, watches some TV, and gets sleepy. Her next attempt for bed is a success. She falls asleep quickly.

She does get up several times to use the bathroom. This is routine, and doesn’t alarm me. However, at 3 a.m., I hear her going in and out of the bathroom several times. I get up to check on her. Her stomach is upset. She feels the urge to “lose her cookies”. I get her something to settle her stomach — her old standby med. She goes back to bed and sleeps. I wonder if the med helped her stomach — or her mind. Funny how that works.

As we get ready to leave in the morning, I pack a few extra things for Mom: her phone, her charger, extra hearing aide batteries along with a few other personal items. I just have a feeling…

I love this doctor. He is not only kind and gentle, but he is thorough in his physical exam of Mom, in asking questions to her and to me, and in reading all the reports sent from the other facilities. He is with us a long time and then he asks to be excused to do further study of the reports.

When he returns, he lobbies for Mom’s admittance to the hospital. I think of the bag tucked in the car, and obviously this is no surprise to me. I know she is more ill than she has ever been. He IS the specialist. He wants to run his own tests. He, too, feels as though something has been missed.

Hospital Stay Number Seven since December. Big Fat Sigh.

By the time we get across the street to the hospital, it’s 10 a.m. I get her registered, but we have to wait for a room so I take her to the cafeteria to get her some toast and coffee. I even buy her a small piece of pie. Pumpkin pie is ok for breakfast — it’s a vegetable, right? (smile)

We get Mom settled into a bed, and a few exams are already on the docket. After several hours and a few bedside tests, the CT scan is still delayed. They are holding her lunch until after the scan. By this point, the toast and pie are forgotten and Mom is cranky. “I want some food”. She expresses this to every nurse, tech and doctor who walks into the room. Oh my. I have “felt her pain” and not eaten myself. I don’t want to miss anything going on in the room and I certainly do not want to eat in front of her. (This doesn’t occur to Mom as she never mentions me going for food. I think that in itself might be worthy of another post another time.)

They finally come to take her for the scan. When she leaves, I order her (now) supper and hope it arrives in the room upon her return. I also ask the nurse for a carton of milk and fruit cup. At least if supper takes longer than expected, she’ll have something to snack on while she waits for her turkey and potatoes.

I take my leave as she begins to eat her much anticipated meal. She probably won’t eat half of it. But the food was her issue today. That’s what I see with the dementia. Each day has it’s own issue. The thing that she dwells on. The thing that consumes her thoughts. One day it could be the pain in her legs. The next day it might be her allergies and how they are the cause of all this illness. And today it was the food.

Again, I am hopeful as I drive home. This doctor appears to know what he is doing — like the right tests will reveal the right answers. I don’t know. Really? Doubts.

No, let’s not go there.

Another doctor.

Another hospital.

Maybe this time, we’ll get the answers and Mom will begin the road to recovery.

I pray this is true. Dear God…

Doctor’s words: I think We Missed Something

Posted on June 18, 2014 by A Journey With Mom

The doctor’s office didn’t call back that day. Sigh. When they did return my call, I was standing in line at the grocery store, and just allowed their message to go to voicemail. Who wants to talk about intimate details of your mother’s health amongst tabloid magazines and inquisitive strangers?

When I got back to my car and listened to the message, the nurse had apologized for not getting back to me sooner. It has been 36 hours since I called and it is now 6:15 p.m. The doctors office is closed. ‘I’m sorry, your message got lost in the shuffle. I see she has an appointment for tomorrow, but if your mother worsens during the night, you can always take her to the ER.’ Seriously? The ER? Again? That is exactly what I was trying to avoid. No. Mom is having trouble, but she is stable.

I will wait until the appointment.

I pray we can wait for the appointment.

The doctor is rather shocked at Mom’s condition. At one point during the appointment, he looks at me and quietly asks, ‘are you sure you can take care of her at home?’

He actually says, I think we’ve missed something. Her physical state does not match her clinical report. Something is wrong.

Ah, yes. Something is wrong. That is what we have been saying for months. Finally. He gets it. This isn’t just Afib or congestive heart failure. This isn’t just dementia. There is something else they have missed. Her rapid downward spiral is happening right before our eyes. Before his eyes.

He changes her meds again. We schedule an appointment with the cardiologist for his “next available”, and we head home. I am disappointed. I don’t know what I expected him to do for her. Mom is weak and frail and so sick. I help her into her chair and make her comfortable.

The ‘next available’ seems like a long way off.

Could Someone Please Just Help

Posted on June 9, 2014 by A Journey With Mom

Mom came home from the hospital on Friday evening. She has been through so much in the last couple of weeks, and she looks it. Frail and weak, and just plain miserable. Two hospitals, multiple tests, xrays, scans, a laparoscopic surgery, 8 doctors, and too many nurses/techs to count have left her in no better shape than when I took her to the ER two weeks ago. She may be in worse shape. Hindsight is 20/20, and I wish they had never transferred her to the big city hospital.

After pursing a non-existent cancer for a week, the hospital was ready to release her last Wednesday. My sister tracked down the doctors and insisted that they call in a cardiologist. Hello? Um, yes, she has Afib and a congestive heart failure illness. Why wasn’t a cardio guy called in from the get-go? After two more days of testing, the doctors have now said the diagnosis is Pulmonary Arterial Hypertension. And yes, that is a grave diagnosis, and we will need to get educated on it, and possibly identify the “event” that caused this illness. But it is so frustrating that we have come full circle, and after two excruciating weeks, they say, “it’s the heart and lungs”. Yes. We know. We’ve been dealing with the heart and lungs since December. Sigh.

And I’ll take this moment to say, yes, I know I have been “all over the map” on Mom’s illness and diagnosis, however, that is kind of where we have been — the doctors are puzzled, and they are searching for answers. And since this blog is about the journey, and specifically, my perception of the journey, we are bound to travel down roads and then turn around again to backtrack. It’s a daily trek. I hope you stay with me.

Mom can’t grasp the severity of her condition. And that is ok. The dementia may be a blessing. I don’t care if she never understands that her health is so fragile. We will just take it one day at a time. She wants to feel better today. So we will hope for a better day today, and then tomorrow, we will hope for a better day. We will just continue to hope each day. Because that is what is important to her. She can’t think beyond the immediate discomfort.

That said, today, here and now, she is very uncomfortable. And that is what I need to fix. Between the incisions (from the surgery that wasn’t even necessary where they removed her ovaries and fallopian tubes), and the rash on her tummy from the adhesive tape, the sore tail bone from her position in bed for two weeks, and the STILL present water retention, she is fidgety and extremely uncomfortable. She asks for pain meds several times during the day here whereas she wouldn’t even take them while hospitalized. I try to make her comfortable. I’ve applied creams and ointments and helped her with a much-needed shower, and still she is miserable. It is hard. And it is sad.

I am waiting for the doctor’s office to open this morning. The “Hospitalist” sent her home on a fraction of the water pill that she has been on over the last several months. I was concerned about that dosage and called the hospital twice over the weekend to ask if there had been an error in the discharge papers. No one could really answer that question. Seriously? Last night when I helped Mom get ready for bed, I saw that her legs were swollen. They look better this morning, but still, we may be spending some time in the waiting room again today.

Help. Someone, please, just help.

It Doesnt Matter, We Have Bigger Fish To Fry

Posted on June 5, 2014 by A Journey With Mom

I have a little reprieve from the hospital today. The “big” hospital is over an hour from my home, but my sister only lives about 15 minutes from the front entrance. She is tracking down doctors and trying to get some answers.

I decided I would use this little respite to add a couple of sagas of Mom’s journey. These two stories have caused confusion, contention, and laughter. We are just beginning to understand that Mom has moments of complete lucidity and moments of complete confusion — and those two moments can change places in an instant and without warning.

The first story involves her infamous walker. On her fourth visit to the hospital this year, her strength and endurance were low, and the physical therapy department decided Mom could benefit from a walker. Mom was not a fan. She did not agree with the therapist and fought the walker the whole time she was in the hospital. Medicare approved it, and a new walker was fitted to Mom, wrapped in plastic and set up against the wall outside her hospital room — waiting for her release. Mom continued to use the hospital’s walker on her daily walks at the hospital for a day or two longer.

When she came back to my house, that new walker was packed in the trunk and followed her into my house. If you have read previous posts, you know that Mom continued to fight the walker until the Home Care physical therapist and I had a few confrontations with her.

It was surprising then, a few days later, to hear Mom telling a friend over the phone that she and I went to the local hardware store to purchase the walker. I heard her say, ‘I looked at that walker and told my daughter, I’m doing pretty good right now, but I bet my legs will be the next thing to go. So I’m going to buy that walker!’ I found her story highly amusing. She has since embellished that story to the point of attaching a date of purchase and price — it was evidently on sale. She has also stated that it was wrapped in plastic and leaning against the wall (that part is true).

Yes, indeed, there is a learning curve because I thought if I just reminded Mom of how she obtained the walker, she would remember. Ha! Um, no, that is not how it works. No matter how many times we went over the event, she would tell whoever would listen that she bought that walker herself (which is kind of funny since she hated the walker so much). She even became passive aggressive towards me about it — and that isn’t really like my Mom. I had told her she was a very very sick woman that time in the hospital, and possibly she had a vivid dream. From then on, when she talked about the walker, she would begin her story, sarcastically, with ‘in my dream…’. ouch.

I do not correct her anymore about the walker. What difference does it make? But I laughed out loud yesterday when she called me from the hospital. ‘Would you do me a favor? Would you call the hardware and see if they will exchange that walker for me? The one here has wheels, and I like it.’ ‘Sure, Mom, I’ll take care of it’.

The other incident that has gotten skewed in her mind concerns her favorite chair. After Mom had been living in our home for about a week, I told her that we were going to get her chair from her apartment. I do not own a recliner, and my couch was just too big for her. Mom would be all slouched down and look very uncomfortable within minutes of sitting down on that sofa. One afternoon when Mom and I were at one of her doctor appointments, my husband called and said he had time to stop and pick up her chair. I said, ‘perfect, we are done here, and we’ll meet you there’. He already had the chair loaded into his red pick-up truck and was headed out the drive by the time we arrived. We turned around and followed him home. Simple enough. End of story, right? Not quite.

A couple of days later, I hear Mom telling a friend that she appreciated my husband getting her chair. ‘He went and got it a month before I came here’. What? She went on and on about how she saw her chair in a white pick-up going down the street. She evidently was with her friend (not me) and they had been out shopping (not at the doctor). Seriously? So, Mom, just what did you sit on for that month while you were at your apartment?

Again, (I am a slow learner) I explain the actual event. Mom listens, but doesn’t agree. When telling the story again and again to friends and family, she even tells them that we don’t agree on how the chair got here. One day, at lunch, she asked me to tell her again about the chair. I was sick that day, and run down, and just plain weary. ‘Oh, Mom, please, I don’t want to talk about the chair anymore. It doesn’t matter’. ‘No, tell me, because I just see it going down the road in a white truck…’. So I tell her again: 10 days in; you and me; doctor appointment; red pick-up. Two hours later, she is on the phone with a friend, ‘do you know that he got my chair a month before I came…’.

I just smile. It doesn’t matter. Not one little bit.

As the saying goes, we have bigger fish to fry.

She will most likely be released from the hospital today and come back here to my home. There will be some confusion — two hospitals, multiple tests and more doctors and nurses than I can even remember. It’s challenging to know when, or if, events need to be clarified for her. Do I just go with the flow? Do I attempt to set things straight? What is already completely “set” in her mind — no matter how many times she is told otherwise?

It seems sad to allow her to live in a fantasy world, like we’re giving up. I want to fight this disease.

I want her to remember. I want my mother back.

“The Pathology Report Is Back”

Posted on June 3, 2014 by A Journey With Mom

Day 12 in the hospital and still no pathology report. It has been 6 days since the procedure. I got to the hospital at 8 a.m. in hopes of not missing the doctor. Mom was sitting up in bed having the same meal she has had for the last 5 days. Yuck. But she looks good, considering, and she smiles when I walk into her room. I give her a kiss and take up my station on the couch by the window, and we begin the wait. And we wait. And wait.

The only thing that breaks the monotony of the day is Mom’s jaunts into the bathroom — every 40 minutes. I shouldn’t really call them jaunts as her trips into that room are hard to watch. She is skin and bones and very weak. She can hardly put her legs over the edge of the bed without help. She requires help from the tech to stand and then needs the walker. She spends 10 minutes in there every time. Bless her heart. What is going on? Between the daily heavy dose of water pills, the fluid filling her tummy (still don’t know exactly why), and her liquid diet, she might was well sit on the bedside commode. I think it would be less taxing.

She no more than gets back into her bed — again with much help and quite a bit of struggle — then she rings that bell again. I would help her myself except the nursing staff has said we should not. I specifically asked that question when I got there this morning. “She isn’t hooked up to anything, can I just help her into the bathroom?” “Oh, no, please ring the bell, we need to help her.” Probably a liability since in bold letters on Mom’s white board it states “high fall risk”. “Well, ok, but she will most likely need you every 30 minutes.” “That’s ok, we understand.” But the nurse/tech are over-worked and have too many patients so the wait is way too long, and Mom is almost frantic every time before they get back to her. And we do this over and over throughout the day.

At 4:30, I learn that the surgeon charted, but did not come into the room. Seriously? I’ve waited all day to talk with him. I guess he didn’t have the report, and nothing new to say. Sigh. Urr. Sigh. We are at their mercy.

The nurse tells me that Mom’s diet has been upgraded to regular food. Yay. Mom looks over the menu and decides on a few comfort foods. I place the order and add the stand-by broth and some applesauce to her meal as I’m just not sure how much “real” food she will be able to tolerate.

As she rings the bell for the “bathroom guard”, I tell her that I am going to head home. It’s earlier than I normally leave, but I have over an hour drive; it’s rainy with threats of storms, and I’m just simply antsy.

When I get home, I crash on the couch, stare at the ceiling, and I wonder about my mother’s eminent release from the hospital. Can I take care of her here in my home? Can I physically do this? Can I give her the care that she needs? The good, quality care that she deserves.

I don’t know.

I sincerely don’t know.

It is now 8:30 a.m. the next morning. I have made the decision to stay home today and prepare for Mom. Her room needs to be cleaned; her sheets need to be washed; I want to get some groceries. My sister is standing vigil at the hospital. I am just ready to make out my to-do list when the phone rings. “The pathology report is back. She doesn’t have cancer”. I am stunned. The doctors were convinced. Absolutely sure. I stutter my relief in words that do not form complete sentences. A million questions fill my mind. What then? Now what?

We don’t know. The doctors don’t know. But our prayers have been answered, and we did indeed get a miracle. My mother does not have cancer. She is still a very sick woman, and yes, her health is very precarious. Her heart is failing. We have known that for months. And we were dealing with that awful disease. And will continue to do so.

But today is a good day.

No cancer.

No surgery.

No chemo.

Thank you Dear God.

And So We Wait…

Posted on June 1, 2014 by A Journey With Mom

Another long day at the hospital. Another day with no answers. At least no official answers. My sister and I keep making small talk in the hospital room as Mom huddles down in her bed. Only her tiny head is visible under all those blankets. After sitting up in a chair to drink her liquid lunch, Mom was shivering and cold, and asked to go back to bed. I’m not surprised she is cold as she doesn’t have an ounce of fat on her body anymore, and even though it is 85 degrees outside today, even my sister and I are bundled up in sweaters ourselves as the hospital room is indeed cold.

We are talking about everything except the elephant. Because even though the doctors have basically told us she has cancer, the pathology report isn’t back yet; it is not uploaded onto Mom’s records. When Mom is distracted by a tech or a nurse, we have whispered how we’d like to talk about important things with her. My mother loves to talk. She always has something to say, but seldom do those words reveal her deepest feelings. Or let’s be honest, any feelings at all. That is not her way.

So we wait.

Mom’s health was fragile even before this cancer bombshell. But, of course, now I know the cancer was the source of the ill health all along. The weight of that is heavy. All this time, we should have been treating the cancer. Why did they not see it? She has had every test possible, yet it stayed hidden and disguised as something else.

Mom is a woman of faith. I sincerely believe she isn’t afraid to die. But she loves life. She loves her children and grandchildren. She loves her friends. She is moaning about being in bed instead of on the golf course. At 84 years old, Mom feels young, and she doesn’t want to die. She wants to live.

With the dementia, she hasn’t comprehended her current health issues. She doesn’t seem to be aware that the game has changed dramatically this week. The doctors have not been shy about saying the “C” word, but Mom doesn’t grasp it. Is it the dementia? Is it denial? We don’t know, but my sister and I cannot bring ourselves to talk about it with her — yet.

So we wait.

And even though we do not say it out loud…

We are hoping for a miracle.

I Think Tomorrow Will Be a Really Hard Day

Posted on May 31, 2014 by A Journey With Mom

I arrived home from the hospital today to find flowers from my husband, and numerous birthday wishes on my facebook page. I needed to hear those sweet words from dear friends. Not because it is my birthday, but because it has just been a hard day, and those words were like salve on an open wound. God has blessed me with many dear friends, and I am so grateful for all of them tonight.

Mom was transferred to the “bigger, better, city” hospital on Monday afternoon. She has undergone more testing and a laparoscopic surgery. The doctor removed her ovaries and fallopian tubes and a sample of the peritoneal lining. Although they have found no cancer yet, the doctors are so sure of that diagnosis, they continue to search for the source.

Mom looked weary and tired today; so very tired. And discouraged. She is sick and tired of being sick and tired. She hears the doctors’ reports and repeats some of it back to them, but she isn’t grasping the probable diagnosis. Once the doctor leaves the hospital room, Mom reverts back to talk about a bowel blockage and surgery. Surgery isn’t even on the table anymore. Her bowels are working and they have started her back on a liquid diet. Mom never mentions the word cancer to any of us. At first I thought maybe she just didn’t want to talk about it, but I’m not sure any more. I pretty sure she does not have the capability, any more, to grasp much of what the doctor says. It is confusing! I have to ask many questions myself to clarify his medical lingo. And even though Mom definitely knows what a cancer diagnosis means, it just doesn’t seem to “stick”.

And for now, that is a blessing.

I think tomorrow is going to be a really hard day. My sister wanted me to stay home tomorrow and not make the hour-long trip to the hospital. The city hospital is in her hometown, and now she is the “boots on the ground” — the one stopping by the hospital and checking in with Mom on a daily/hourly basis. But I think I have to go. It will be 48 hours since the surgery: I’m fairly certain we will get the results back tomorrow. I am prepared for bad news. Words that the doctors have thrown around this week are spinning in my head. Malignancy. Studded. Metastasized. Chemo. These are not words that are said lightly. Doctors don’t use those words in passing.

I think it is going to be a really hard day.

This kind of cancer — peritoneal — is usually found in the later stages. This cancer could account for all of Mom’s symptoms over the last several months. The symptoms we have attributed to AFib and Congestive Heart Failure. The weight loss, no appetite, abdominal pain, indigestion… the list goes on. The pieces are fitting together like a puzzle. This kind of cancer will not require surgery. It will require Chemotherapy. Mom already looks like someone who has had chemotherapy. I don’t know how her frail weak body can take the poison.

I said in an earlier post that I wouldn’t borrow worry. I know that is exactly what I have done here. We have no clear-cut diagnosis. Mom has defied the odds many times over the years, and escaped cancer diagnosis. But I am worried. And I will go to the hospital tomorrow. There is nothing here more important. Nothing. That is where I need to be.

I’m not sure what her reaction will be — the dementia comes and goes. I’m having trouble knowing exactly what she is comprehending. But if the doctor comes in with a concrete diagnosis and treatment plan, I want to be there to help her “think” it through. I know my sister will be there, and my brother too, yet I feel compelled to be there as well. She needs us now. Tomorrow may be the hardest day of her life. Mine too.

I Resolve Not To Worry Today

Posted on May 25, 2014 by A Journey With Mom

I only spent a few hours at the hospital with Mom yesterday. She is stable and receiving great care. She has had a lot of visitors as well. I decided to take a few days and get caught up here at home. I feel a little guilty about taking any pleasure in her hospitalization, but knowing others are tending to her gives me the opportunity to do some cleaning, yard work and grocery shopping.

I got a few things done outside yesterday, and this morning I had tackled my bedroom and was just heading to the bathroom to give it a thorough cleaning when I decided to call the hospital and check in with Mom. She sounded a little agitated or discouraged or… I can’t quite put my finger on it. She says her tummy is still bloated and tender. I tell her I’m going to call the nurses station to get the update from the doctor. My assumption is that once they allowed Mom to have “food” (liquid diet only), her bowels acted up again.

After being admitted to the hospital on Thursday, the doctors decided to run more tests and do everything possible to avoid surgery. At first, they said her bowel had a blockage, but have since back off that diagnosis. There is unexplained fluid in her tummy. Even though its a holiday weekend, Mom is getting xrays, ultrasounds, and physical exams.

When I call the nurses station and talk with Mom’s nurse, I am prepared for her to tell me that they took Mom’s diet away and she is back on ice chips only. I am prepared for them to talk about a bowel blockage. I am not prepared for the word I hear: cancer. What? Some of the testing that has been done has shown a high probability of cancer. Another doctor is being called in this afternoon to do a physical exam. The nurse assures me that the doctor explained thoroughly to Mom that they were testing her for cancer.

I drop my dust cloth and do not even bother to put my sweeper or cleaning supplies away before I change my clothes and head to the hospital after all. It’s one thing for Mom to watch TV and rest while waiting for test results, but it’s quite another thing to be alone in the hospital as you ponder a cancer diagnosis.

When I get to her room, she appears relaxed. She doesn’t seem upset at all. I guess that is the blessing of dementia. Your short term memory isn’t worth a hoot. So even though the doctor and nurse explained that the fluid could be caused by cancer, Mom doesn’t seem to remember that conversation. I decide not to “go there”. Why borrow worry? There will be plenty of time to talk and worry and plan if or when that diagnosis becomes a reality.

We make small talk for awhile and then her liquid lunch arrives. Mom seems very unimpressed with the choices on her tray. I agree.

I haven’t even let myself think about the cancer today. I can’t think about it yet. If I wait a day or two, maybe I won’t have to think about it ever. The test results are not back yet. I am going to wait to worry.

Was it just Wednesday that I was thinking, ‘we are managing the AFib and Congestive Heart Failure pretty well. We are dealing with the dementia and trying to get educated about that disease. Mom can’t live alone, but she could live in an assisted living apartment, and still have a lot of independence’. I thought most of the really hard questions were out of the way. Then Bam! Cancer. Wow. I wasn’t expecting that.

Does that mean chemo? Radiation? Or not. She is almost 84 years old and has been a very sick woman for several months. She has begun to gain some strength back, but is still 45 pounds lighter than she was six months ago. She is weak. She is frail.

What does a cancer diagnosis mean for her?

Now that I have sat down from a busy day, and begun to relax, I realize “not thinking about it” may be impossible. Yes, it will probably fill my mind for the next several days as we wait for the holiday to be done, and the full hospital staff to return to their duties.

This is a long and winding road: This taking care of an elderly mother. Just when you think you “got it” and things settle into a routine, a new challenge slaps us in the face. Isn’t AFib, CHF, and dementia enough? Don’t we have enough to ~~worry~~ think about? Cancer. No. I envisioned a heart attack. I almost expected a fall and broken hip. I even thought the dementia could actually be Alzheimers. But not cancer. It wasn’t on my radar.

As I finish up this post, I hope to end my train of thought about the cancer. Yes, she may have cancer. But maybe she does not. She has defied the odds many times before.

I will not borrow trouble for today.

I resolve not to worry.

And I pray that Mom does not have cancer.

What Matters Today is that She Lives Period

Posted on May 22, 2014 by A Journey With Mom

I am sitting in the ER watching my mother attempt to sleep. The nurse just gave her pain meds, and they are just kicking in. When she walked into my kitchen this morning, I said, ‘Mom, let me feel your tummy’, and sure enough, it was just as solid as a woman who’s six months pregnant. ‘Oh, Mom, get your shoes on. We need to go to the ER’.

This isn’t the congestive heart failure tummy. This is not water retention. We are waiting for X-rays, but if I had to make a guess, I’d say her bowel is twisted — again. This poor woman. This is exactly where we were a year ago. Twisted bowel. Surgery. Two weeks in hospital. Complications. And since December, she has been in out of the hospital with Afib and congestive heart failure. She has lost 45 pounds in the last 5 months.

How much more can her body take?

How will this affect her dementia progression?

What am I saying? Can she even survive another operation?

As she finally rests, I think how insignificant the decisions of the past few days have actually been. Does it matter where she lives? No it does not.

What matters today is that she just lives.

I Don’t Blame Her — It Stinks

Posted on May 21, 2014 by A Journey With Mom

Yay for Mom! She left on her golf outing this morning at about 7:45. I think she putted on the green of the first three holes and just rode in the cart and observed her friends the rest of the day, however, she isn’t sure about the details; she says maybe she only putted on one hole. She went out with her golf buddies for lunch, and returned to the house at about 3:00. She used the bathroom and hobbled to her chair where she crashed for two hours. She has been reading the paper and watching the news for the last 2 hours, only wanted a bowl of cereal for supper, and now at 8 p.m., she is heading to bed. I think she’ll sleep well tonight.

The retirement village tour has been canceled for the immediate future. We need to figure out if Mom can live independently or if she needs assisted living. She has several doctor appointments coming up, and we are hoping to glean some valuable info from the doctors. I talked extensively to the Directors at the village today, and I think it’s time for a family meeting — with Mom included this time. Tomorrow is the day.

We are going to use the “D” word. We are going to be frank. We are not going to argue or be unkind. But we have been tip-toeing around this ~~confusion~~ dementia diagnosis long enough. I’m not looking forward to it. It will be a hard, heart-breaking meeting because we have to explain that she isn’t going back to her apartment. We have a couple of options for her, but she won’t be a happy camper. I don’t blame her. It stinks.

Today: Hands Down No

Posted on May 19, 2014 by A Journey With Mom

The meeting with my siblings was productive. We threw out 10 options for Mom’s care. Although some of them were just flippant, like: we can send her to her best friend’s house to live. She loves her best. Not really, but we were just trying to inject some humor into our conversation.

I think we came away with 2 viable options. Either we get her into the nice retirement village that is relatively close or she stays here with me. There really are no other choices.

Everyone was really excited about this village. Mom would live independently, however the apartment is set up for seniors with extra care options for a little more money above the rent each month. Sounds perfect. I have an appointment to go see these homes on Wednesday morning. If they indeed look suitable, we were going to present this option to Mom at the end of the week.

But today Mom is having a bad day. Both strength and memory seem to have failed her today. I had a day planned to visit a couple of local shops, lunch out, and then pick up some fresh flowers from the nursery before heading home. All things that she can do and enjoy — no walker or “exercise” involved. Shopping, lunch and flowers — sounds like a fun day to me.

Before we left the house, she asked me 5 different times where we were going. (sigh) I parked the car at the curb between the two shops I knew she would enjoy. Maybe 20 steps to each one. She struggled. After those two stops, we headed to the cafe’ across the street. Again, just a short distance, yet it was all she could do to get to the door. It was exhausting for both of us.

After lunch, we decided to at least try the nursery as she could push the flower cart. However, after the first few minutes, she opted to go back to the car to wait for me.

We did go get our nails done as she had 2 gift certificates that were about to expire (from Mother’s Day a year ago). I decided that was a safe option as she only had to sit there. Whew.

She has even decided she may not go to her golf outing tomorrow morning. ‘I think I’ll just wait a week. If I go, I’ll just want to play.’ She knows how much work today was for her and for me. I wish I could see inside her head and know what she is thinking.

My sister called just minutes after we got home. Mom said we got our hair cut and went out to lunch. (sigh) She couldn’t remember anything else we’d done, although, later in the conversation, she did remember that I had gotten some flowers.

This was a discouraging day. If I had only this day to judge whether she could live alone: Hands down: no.

Hopefully, the tour at the retirement village will lend some light on our situation. I have high hopes that I can get some guidance about Mom’s future.

She has asked me 4 times today when she gets to go home. How long can I put her off before we tell her, ‘never’. I can give her so much, yet I cannot give her the one thing she wants. It’s so sad, and I just want to cry.

The Day of Decision

Posted on May 18, 2014 by A Journey With Mom

It’s early Sunday morning, and everyone is still asleep, but I am restless. This is a day of decision for my Mom. My brother, sisters and I are going to meet for supper and discuss Mom’s care. She is determined she is going home. We thought it best to brainstorm first with each other, and then sit down later with her and talk about the options. My daughter is going to distract “Gramma” with an invitation to watch a movie.

This is the closest thing to a “date night” that my husband and I have had in months.

I have very mixed emotions about my mother (ha! no surprise there.) Yes, there has been a total disruption of my life since she came to live with us. Every decision I make every day involves her. Can she go with me? Can she stay here alone? Will she be able to sit that long? Will she be able to stand that long? Where are the restrooms? Can someone come here to be with her while I slip away for a few hours? My mom is at the top of the list every day.

However, there has been peace and comfort in this arrangement. I know she is eating well. I know she isn’t driving. I can manage the congestive heart failure easier. I know when she remembers.

And I know when her stories are a jumbled mess.

I am often amazed when I hear her talking on the phone to family and friends. Her recollection of any given day can be totally accurate or it can be a combination of things she has done over the past week or two. Does that matter? I don’t know.

If she goes home, will she eat right? No, I’m pretty certain she will not. Does that matter? The right answer to that is, yes of course, as it affects her health. She has congestive heart failure — diet is crucial in managing it. However, I think Mom would rather live the way she wants to live — and be happy for whatever time that allows — than change her ways and be miserable as she lives out her days.

If she goes home, can she organize her day? Her dementia plays out in confusion and distraction. She depends on me for everything right now. But am I helping her or hurting her? Would she be better if she had to do more herself? I don’t know.

So we usually leave for church shortly after 9 am. At 7:50, Mom still isn’t up, and I knock on her door, ‘Mom, are you going to church? We’ll leave in an hour or so”. I continue to get ready, but Mom doesn’t get up until 8:45. Really? Seriously? My knee-jerk reaction is irritation with her. How do I say this? Church hasn’t ever been her favorite… church isn’t something she looks forward … Well, let’s go this route: Church is something I look forward to each week. Church is a place where I worship my God and see many of my friends each week. It is important to me, and I was looking forward to going this morning. So I am a little honked off that she couldn’t get up. She has been up at 7:15 every day this week.

She will probably not sleep too late on Tuesday morning when her friend is expected at 8 a.m. to take her for their first golf outing of the season (she just plans to ride the cart and possibly putt a couple of holes). I express my frustration to my husband. (Yes, he sees the real, ugly me.) And he replies, ‘she probably doesn’t even know it’s Sunday’. Well, yes, there is that. And even though every day this week, she has talked about going home on Saturday or Sunday, and counted down the days. And even though we talked about going to church just before she went to bed, she may indeed not remember that it is Sunday. Or she might. I don’t know.

Do I go to church? Do I stay home with her? Hard to believe this might be a day of decision when there is so much indecision.

The one – and only — time I’ve left her alone for 2 hours, she packed up everything she owns. She had her suitcase full and her shoes in a bag. The dresser was wiped clean, and all her personal jewelry, perfume and lipstick was packed in her purse.

So when in doubt? Don’t.

I apologize to my husband for being cranky, and I change into some casual-stay-at-home clothes. I grab another cup of coffee and walk into the living room to ask my mother, ‘would you like yogurt or toast with your coffee this morning?’

How Much Dementia is Too Much Dementia to Live Alone — and Who Gets To Decide?

Posted on May 16, 2014 by A Journey With Mom

Home Care Physical Therapy released mom from the walker today. If you’ve read my earlier posts, you know that Mom hates the walker. She has complained about the walker. She has rolled her eyes about using the walker. And she has said she would not go out in public with the walker. And yet this evening, she is still using the walker. I’m not sure I will ever understand my mother.

She made plans with a friend to golf on Tuesday. She told her that she expected to go home Saturday or Sunday. So here we go…

Mom is getting stronger. She is taking care of all her personal needs such as bathing and dressing. She is capable of getting her own water, coffee and snacks, although, she much prefers for me to do that for her. She hasn’t fixed her own meal since living here, and I know she wouldn’t fix much when living alone either. I asked her this morning, ‘Mom, do you want breakfast before you get dressed or after?’ Her reply was, ‘oh just a cookie or two; something light’. Just for the record, I have never fed her cookies for breakfast. But still, if asked, that is her first choice. Cookies for breakfast and lemon pie for lunch — no wonder she had gotten weak earlier this spring when she was living alone.

But her strength isn’t the issue. It’s the dementia. Now that I am closely tied to her daily life, I see the confusion. My siblings see the confusion. And now, her friends even see the confusion. But Mom does not. And to be fair, she probably is just as well as she was for the last six months she lived alone. But should she have been living alone? Probably not. So how much dementia is too much dementia to live alone? And who gets to decide?

I Just Need To Live My Life

Posted on May 15, 2014 by A Journey With Mom

My keys have been quiet for a couple of weeks. “If you don’t have anything nice to say, then don’t say anything”. I decided I best be quiet. I am trying to balance being honest and transparent and yet not saying things that I’ll regret one day.

There is definitely a learning curve involved when your mother moves into your home. There is a time to “push buttons” and time to “let it go”. I have decided if some buttons need to be pushed, then let my siblings push them — I have to live with this woman!

We did hit our first rough patch about 10 days ago. Mom got a little passive aggressive and sarcastic in her communications with me and my sister. She was taking pot shots at me. And under normal circumstances, when she is healthy, that is not like Mom. She may take pot shots at others, but she never criticizes her own kids or her grandkids. Ever. She is our biggest cheerleader. I told myself that over and over, but still, it hurt. I am not a crier, and my emotional state is usually well-hidden, but I was kind of a wreck by the end of the week. Whew. I need to get a grip — this may be a long and winding road, and we are only at the gate.

Thankfully, I was needed elsewhere for a few days (retrieving a college-age daughter from campus 700 miles south), so Mom was going to my brother’s home for a few days. I think the timing was perfect as we both needed a little reprieve.

As the trip was going to take about three days, my husband suggested I take one of our nieces along with me. She is in high school, and this college is on her list to visit. I said, ‘what? No, not this time. No. I don’t want to talk to anyone. I don’t want to take care of anyone. I don’t want worry about anyone. Not this time”.

I took my time driving down, stopping at a couple of places of interest. Before leaving, I had downloaded an audiobook, and thoroughly enjoyed listening to that story. I stopped early in the evening and sought out a nail salon to get a manicure. Then I ordered a salad from Applebees and loved every bite in the quietness of my hotel room. Refreshed, early the next morning, I drove over the mountain to finish the last trek onto campus. After we loaded up her belongings and lunched with her fiance’, my daughter and I headed north. We took our time coming home as well, finding a couple of shopping areas and staying another night at a Holiday Inn. I was in no hurry to get home.

Mom must have needed a break just as much because she has come back into my home and settled down into a routine. She still talks about going home — a lot, but at least she isn’t mad or mean about it. She just wants to go home. She says, ‘I just need to live my life’. And I know she does, but I wonder if that life still exists. I don’t think she can ever go home and live alone. We’ll need to talk about this soon. The lease in her apartment is up mid-summer. Hard facts will have to faced, and decisions will need to be made.

Who gets to make those decisions?

Who has to make those decisions?

No Enemies Here Continued…

Posted on April 30, 2014 by A Journey With Mom

Update from yesterday: I had stepped out of the room for a few minutes, but when I returned, Mom’s chair is empty (no Mom in sight) and the walker still stands there beside it. Oh Mom. She has gone to use the bathroom. I stand there, hesitating about what to do when I hear her come out and rather than head back to sit down, she walks further into her bedroom. Ok, here we go… I wheel the walker to the bedroom, and say, ‘Here, Mom, you forgot something’. She shakes her head, rolls her eyes, and chuckles a bit as she takes hold of the handles and walks back to her chair. At supper she tells my husband that the nurse told her she has to use that thing. ‘I guess you’re going to be stuck with me for awhile’. My husband says, ‘Oh Mom, don’t say it that way’.

I know she worries about imposing on us. And I guess that is understandable. My husband has been great. So great. His compassion and tenderness have always been his strong traits. He is almost better with her than I am. That was evident with my first posting of yesterday’s blog.

Lesson learned: do not blog immediately following any incident. Think first. Write second. Do not do both at the same time.

Mom is just getting up for the day. Here she comes pushing that thing in front of her. “Good morning, Mom… how about a cup of coffee?”

There Are No Enemies Here

Posted on April 29, 2014 by A Journey With Mom

The Home Health Nurse was here to see Mom this morning. I stepped out of the room to answer the phone while she busied herself with Mom’s vitals and some small talk with Mom. This small talk is designed to see how much clarity Mom has, although Mom doesn’t know she is being tested. When I come back, the nurse says, ‘your mom says she’s going home this weekend. Is that right?’ (sigh) ‘Mom, I don’t think you’re quite ready just yet’. ‘I agree’, the nurse quickly replies. Almost too quickly. Then she tells mom that she is too confused to go home. Mom has enough clarity to be embarrassed by this. My heart goes out to her. It is sad. She replies with her typical response , ‘well, I’m 83 years old! And all my friends are confused too’. This almost makes me giggle.

Halfway through the day, the Physical Therapist arrives. She hasn’t seen Mom in over two weeks due to Mom’s hospitalization. The PT asks mom about the walker. Mom explains that she hasn’t been using it. ‘I’m weaning myself off’. So I listen for the next ten minutes while the PT goes over and over why it’s important for Mom to use the walker. Then she takes Mom into the kitchen to do a few leg exercises. When they are finished, Mom begins to walk back into the room without her walker. The PT reminds her to take it, and as Mom turns away from her and looks my way, she rolls her eyes. (Mom!! Stop it!) Then Mom says, ‘so I’m suppose to use the walker?’ Bless the Physical Therapist’s heart as she spends another 10 minutes going over it again. Mom finally admits she will ‘not go out in public’ with that walker. By this time, I’ve had enough. I step in and say, ‘Mom, the experts at the hospital said to use your walker; I said to use your walker; your PT says to use your walker. Can you just trust us and put your pride away for now? If you fall, I’ll be planning your funeral most likely’. This is the first time I’ve shown any exasperation with her, and I feel badly about it, but her pride is seriously going to be the death of her!

Mom has a justification for everything. I can’t walk because my legs hurt; I can’t do that exercise because I had knee surgery; I hang my head and don’t stand up straight because my head is full from allergies. I AM walking around the circle 3 or 4 times (um, no you are not. Is that a lie? Or do you really believe you are?). Please just accept what they say and let the professionals help you. Stop making excuses! Everyone wants you to get better. The nurse. The PT. Me. We’re all on your side! Stop being so stubborn.

She hasn’t been out of the chair since the PT left. It will be very interesting to see if she grabs that walker. If not, I WILL be reminding her every single time. I hate conflict. I really do. But I think I am going to have to prepare for some battles. And that’s okay because we need to win this war. Mom, we’re all on your side — there are no enemies here.

It’s a New Ballgame, And I Might Be In Trouble

Posted on April 28, 2014 by A Journey With Mom

This was a hard weekend, and I’m not even sure why. I have so many conflicting emotions right now. Mom appears to be getting better — both mentally and physically. And that is wonderful. She has clarity on most issues. Evidently she had some vivid dreams while that drug was too high in her system, and on those “stories” she is adamant about what happened. Even though we have tried to explain what really transpired, she won’t relent. One particular event has become an area of contention between us so I am no longer going to talk about it at all. Another lesson learned. “Don’t you remember…” can no longer come out of my mouth. Ever.

She is talking about going home. She says she will stay here another week. This is a new development. She has been so weak and frail that going home wasn’t an option. Also, mentally, she wasn’t able to sort things out in her mind, and I think she knew that — and it scared her. But now, she is gaining strength and her mind is working at least as well as it was 3 months ago. So now I have a dilemma. I am no longer caring for a submissive sick woman. Caring for her now is a bit more challenging. I have to be on my toes and ready to play some mind games now. In her mind, she is strong and capable of taking care of herself. And she could for a day or two, but right now, she doesn’t have the endurance to keep on taking care of herself. Before long, meals would become a pre-made-store-bought pudding cup and cookies; not because that is what she wants to eat, but because it is easy and quick and she’ll not have the energy to prepare a good meal for herself. That is clearly what was happening earlier this year.

I also see a shift in her countenance — she is willing to do what we ask, but she is rebelling on the inside. This, I must admit, brings a smile to my face. We do go backwards at some point — “The Curious Case of Benjamin Buttons” playing out before my own eyes. She doesn’t seek out any privacy when she talks on the phone to her friends, and occasionally, she lets slip what she really thinks. ouch. I think I might be in trouble here. My siblings and I emailed back and forth yesterday. I am going to need some hefty reinforcements soon. They are somewhat divided on whether Mom will ever go back to her home. Uh oh. I guess I should have seen that coming too.

There are so many things to consider when she wants to go home. We are not only considering recent health issues, but her apartment lease is up in 3 months. What then? And to be frank, we don’t really want her to go back to that apartment. She has lived there for 3 years, and has had major allergy issues ever since she signed the lease. And even though I am taking 2 different allergy meds myself this week due to the tree/grass pollens, she appears to be doing fine; she hasn’t sneezed once in 4 weeks! ‘Mom, how are your allergies? Do you have a headache or scratchy throat?’ ‘No, I’m doing fine’. Hmm…. makes us wonder if the allergies were due to mold or something within those 4 walls. But she loves that apartment. I think I might be in trouble.

So as I begin week 4 of Mom here in my home, I realize it is a new ball game. We had gotten accustomed to one another and had settled into a routine, but the rules have changed. So did I want Mom to get better? Isn’t that what I prayed for? Absolutely!! But her “better” may never be better enough for her to actually go back home. Her better may be just enough to make her miserable. And I’m not sure what I’m going to do.

I think I might be in trouble here.

Lord, I need wisdom here. I need discernment. I need patience. Help me today to make the right decisions in caring for Mom.. Help my sisters, brother and me to make the right decisions for our Mom for her future. Help us to love and honor her in all these decisions. I pray that she is content and happy. I pray that she has a peace about it. Oh Lord, we need help!

I’m weary, but I’m Ok

Posted on April 26, 2014 by A Journey With Mom

I’m weary and tired today. Mom has annoyed me a little bit. It’s all fine, or will be. But she can be a very stubborn woman. At times it’s like hitting my head against a brick wall. She has like 15 people – professional and family — telling her what she has to do to get better. But she can’t seem to get the connection between exercising her body and getting well. She thinks if she rests in the chair, she will get better. One day she is just miraculously going to stand up and be healthy again.

I started this blog as a journal for me as I care for my mom. I know some family members are now reading my posts, and that has caused me to edit some of what I might write. But sometimes I just need to say what’s really in my head and on my heart. Some days I might just need to express a little frustration. And that doesn’t mean that you need to help or be concerned. I’m ok. We’re ok. I just need to write it down.

And today I’m just weary.

There’s Still Fight Left In Her

Posted on April 26, 2014 by A Journey With Mom

Mom has been off the Dilatin for over a week, and there is much improvement in many areas. She is no longer having trouble with double vision. She does not shuffle her feet when she walks, and for the most part, holds her head up straighter. Her words are no longer garbled and hard to understand. The “wobbly” painful legs are improving every day. And her mental clarity has been noticeably better.

She has been running a very low fever this week; hardly even. You and I wouldn’t even consider it a fever, but with the sick elderly, even a slight fever is noted. She has not complained about anything, and the home care nurse asked specific, personal questions. ‘No, everything is okay’.

Yesterday wasn’t a great day. We had two doctor appointments: Hearing Aid check-up and Post-hospital check-up. Mom asked me 4 times before we left the house, ‘where are we going?’ Seriously? This hasn’t happened all week. She has remembered almost everything (except the funny story she keeps embellishing about how she obtained her new walker — dream?). But yesterday, she was confused. And she looked weary. This saddened me because she has had a pretty great week, and she has looked more like herself than she has for a very long time. Note to self: when conversing with a person with dementia, stop using the phrase, ‘don’t you remember…’ It only causes both of you to be frustrated in the end. It is what it is. Period. Her version. My version.

At the doctor appointment, she struggled to converse with the doctor. She pointed to me so I did most of the talking, and it’s a challenge to be honest with the doctor, and not “throw Mom under the bus”. Her perception of her exercise and eating is different than mine. She is also holding firmly onto some drugs she has taken for years, and possibly no longer needs. I’m not talking addiction, but rather, security. Mom had a few seizures 40 years ago, and she is terrified of having another one. She says it’s embarrassing. The doctor is more concerned about her life and death issues, and not so concerned about her pride. He would like to wean her off and determine if she is seizure-free at this point. He doesn’t want her on drugs she doesn’t need. Mom is adamant that she will not go off the drugs. So I tried to disappear into the corner, and let the two of them duke it out. After all, I have to live with this woman. And to be honest, she is a grown woman, who has most of her mental faculties. The decision is her’s. We have a seizure prescription in our hand when we leave the office. Round 1: Mom

Mom almost didn’t make it to the bathroom yesterday — a couple of times. Ok, let’s add this up: low-grade fever; confusion; frequent bathroom stops. Sounds like a UTI to me. Of course, it is Saturday, so I call the home health nurse (what a blessing she has been on a couple of weekends now) and tell her Mom’s symptoms. She agrees that a urinary tract infection is probable. She places a call to the doctor, and an antibiotic is waiting at the pharmacy. Hopefully, the confusion will improve in a day or two.

My sister came to visit today. I sent the two of them out of the house. Mom says, ‘aren’t you coming with us?’ I felt slightly guilty, but replied, ‘no, I am not’. There is laundry to do, weeds to pull, floors to clean. And a blog post to be written! There are just normal, everyday chores that need to be done. And to be honest, I am enjoying a little bit of solitude. I know Mom would probably like some solitude too. I have been pondering putting a chair and TV in her bedroom for that very reason. However, I don’t want her to feel like I am banishing her from our living room. I just thought she might like some privacy. I also don’t want to take away her hope of going home. The more I make my house look like her permanent residence, the more I worry about her losing hope. I think she needs goals. She needs to look forward to going back to her home. That may happen, and it may not. Today, I’ll leave that extra chair out of her bedroom because for now, I’m choosing to give her hope.

ps — Mom and my sister just returned from their outing. It’s probably a good thing that Mom lives with me — I think the two of them just might kill each other!

Lord, thank you for the progress Mom has made this week. Thank you for giving the doctor’s wisdom in treating her. Please help Mom and I to continue to be kind and gracious to one another. May our days be sweet. Thank you for helping her to get better this week. Thank you for that answered prayer.

Philippians 4:6 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

Almost 84 Years And Given a New Name

Posted on April 20, 2014 by A Journey With Mom

It’s Easter morning. I didn’t go to church today. I only remember missing one Easter service in the last 35 years. It was the day my first child was born — an Easter baby. We are going to celebrate her birthday this afternoon after our Easter celebrations.

I am grateful that my Mom is here with us to celebrate (she came here after hospitalization after all). She is feeling better. Not perfect, but better. She has so much more clarity. I can hear her talking on the phone with friends and family members, and she is making sense — and most of the details are accurate.

My grandchildren will be here today, and they will be excited to see that GG is home from the hospital. GG is what they began calling her when she came here to live with me. They struggled with a Gramma and a Great Gramma, and it all got a bit confusing. The 5 year old boy finally landed on GG — and it has stuck. I think it’s cute and endearing. Mom is almost 84 years old and she has been given a new name! Last week when she wasn’t here, my grandchildren were disappointed.

It is so sweet to watch their interaction. I know the days get a bit long for Mom with 3 or 4 children undertow. Sometimes the noise level gets a bit high, but she is getting to know those children as I know them. She is making an impression into their young lives that they will remember. I love that.

Welcome home, GG, the kids will be very excited that you are here. So Am I.

Toxic Levels

Posted on April 17, 2014 by A Journey With Mom

At 2 a.m. my phone rings — again. I sit straight up in bed, and I answer it by the second ring. Since that episode last month, my phone is charged in our bedroom so I can hear it — no longer out in the kitchen. I won’t make that mistake again.

It is Mom this time. She says my name tentatively then, “where am I?”

“You’re in the hospital, Mom”

“Why”

“Because you were having some trouble. Your legs weren’t working”

“Am I going to stay here?”

“No. You are better. I am coming to get you later.”

“Where am I?” I tell her again and I say the name of the town as well. I assure her she is better and that she will come home today. There is a long pause and then she says my name again ,

“do I need to be put away?”

“Oh Mom, no. No no no. You are okay. You will come here. Mom, everything is fine. I want you to come here.

“Ok. That’s good. Ok, I understand. That’s good”

“Mom, you’re going to come to my house later today. I am coming to get you”

“Ok, ok that’s good”

We talked for a few more minutes, and once I thought she had settled, we said our good-byes and our ‘I love yous’, and I hung up. Wow. Do I go back to bed? Do I go to the hospital? This is a first. She sounded really tired. Bad dream? She has never had trouble sleeping before. I’m fairly certain she has fallen back asleep already.

At 8 a.m. as I am getting around to head to the hospital, another call from Mom. ‘where am I? Where are you? Why am I here?’

Oh my, something is wrong. I finish getting around and head to the hospital as fast as I can. She is agitated when I get there. She points to the white marker board, and in bold letters it says, HOLD DILATIN. This is a med she has been on for over forty years. She is afraid to go off due to a few seizures she had over forty years ago. I cringe when I read the sign, and I know exactly why she is upset. When she woke up — both during the night and this morning — she read that sign. Her hearing may be awful, but her eyesight is good. Her focus has been on that marker board. She is upset, mad and afraid, and very confused. I take a few minutes to calm her down and leave her in the care of a technician while I head to the nurses’ station.

As I go, I smile because I know we may have finally landed on “the problem”. Yay! And sure enough, the doctor explains to Mom that she has toxic levels of that med in her system. It takes awhile, but we finally make it clear to her that the poison of this med is much worse than the benefit right now. We need to deal with that first and handle seizures, if necessary, with other meds. I text my siblings to bring them up to date. A bit later, my sister calls me and says, “have you read the list of symptoms of toxic levels of that drug?” The list is lengthy and many of Mom’s problems are on the list. We are encouraged.

They begin the process of flushing this med out of her body and now we wait — and hope.

She Just Listened For Our Cries

Posted on April 14, 2014 by A Journey With Mom

I was born in a small town hospital and lived in an old white farmhouse for my first four years. I hardly remember anything about that house. There are a couple of snapshots in my head, but that’s about all. I had two older sisters and one older brother; he was still a baby himself when I came into this world. I know my Mom was busy with all those kids. Another sister was born three years later. It’s a wonder she got any sleep at all. They didn’t have baby monitors back then. She just listened for our cries.

I had four babies of my own. For the first three, I too just listened during the night. I didn’t sleep soundly in those days. The least little whimper from those kiddos, and I was wide awake. I spent many nights in a comfy recliner, rocking babies and making promises to God if He would only make them sleep. By the time our fourth and last baby was born, I had a baby monitor system. I don’t know that we really needed it. After all, I had never slept through a baby’s cry. And the monitor only intensified every single burp and gurgle. I think I got less sleep with that contraption.

Funny how life circles back around. I’m lying in bed listening to my mom over a recently installed monitor. I can hear her trying to get settled; a few grunts and several deep sighs. I just tucked her into bed and turned off the light. I don’t “tuck her in” every night. She has been pretty independent, however, she is struggling right now. Her legs are like noodles; not sure why. As she was getting ready for bed, she dropped her hearing aid. After bending or squatting to get it, she couldn’t get back up. Thankfully, I was keeping watch in the hallway. “Mom, you okay? Do you need help?” My husband and I easily stood her back up. I know she hates this. She hates being weak and dependent on anyone.

After she was done in the bathroom, I walked her back into the bedroom, and helped her into bed. “Mom, please call me if you need to get up during the night. Your legs are a little wobbly today. Please let me help you. I don’t mind getting up”. I know she hates that too. She doesn’t want to be a burden. And she is not — no more than I was when I lived in her home and I needed her.

So as I listen over this monitor, waiting for her to fall asleep, emotion overtakes me and I begin to cry. I let the tears freely fall and grieve for my Mom. I’m worried about her.

I won’t sleep soundly tonight. And that’s okay.

Lord, help me to enrich my Mom’s life. I don’t want the days to just slip by. I don’t want to get so caught up in the daily care of her body that I forget to nurture her spirit as well. Lord, I love my Mom. Help me to bless her.

Ephesians 4:29 Let no unwholesome word proceed from your mouth, but only such a word as is good for edification according to the need of the moment, that it may give grace to those who hear.

Good Luck, PT

Posted on April 13, 2014 by A Journey With Mom

So Mom has been very lethargic and weak the last two days. It may be that Physical Therapy did too much with her on Friday. That would normally irritate me because they are the experts and they should know what they are doing. And Mom, who has been rolling her eyes at me about physical therapy said, ‘see? enough of that!’

However, when I look at the choices of what could be wrong — PT messing up is the best option. Because as I watch Mom, and do some reading about her symptoms, I think she has a lot of Parkinson’s Disease symptoms. A lot. I actually mentioned this to her new doctor last week, but he didn’t think so (after 10 minutes in the room with us!). I also told him that she fell a couple of years ago — fell over backwards off a friend’s porch and hit her head. I don’t think she ever went to the doctor for that accident. Anyways, I must have said enough because he did order a CT scan. She will have that done tomorrow. So if I have the choice between PT over-doing it or Parkinson’s. I choose PT screwing up.

But I will be shocked is it isn’t Parkinson’s.

By the way, PT is scheduled again for tomorrow morning. Yeh, good luck with that. I think you may see some eye rolling and attitude yourself from my Mom. … just sayin

Lord, we need some help here. Please give the doctors wisdom. Help them discover what is going on. We need some answers. Mom is not getting better. She should be getting better. I want her to get better…

No Spunk Today

Posted on April 13, 2014 by A Journey With Mom

The house is quiet. Everyone, that is Mom and my husband, has gone to bed. I know I should go to bed too. It’s late, and I will hate myself in the morning for not getting enough sleep. But I revel in this quiet. This time that is all mine. And it’s not like Mom is even much trouble; really she is not. But it’s just I need some moments when I am not responsible for anyone. Here. Now.

Earlier this week, when my husband got home from work, he stayed with Mom and I went to CVS . I told him I was going to pick up a prescription, and I was going to take my time. The drugstore, for pete’s sake, but we live in a small town where everything closes down with the sunset.

Yesterday, my sister-in-law invited my mother to her house for the day. After I dropped Mom off, I was like a kid in a candy store. What should I do? What should I do? Truth be told, there were not enough hours remaining in the day to get done all I wanted to get done.

This sounds like I am complaining, and I don’t mean to be. Seriously. It’s just being responsible for another human being is a little daunting…. again. It’s like bringing home that first baby. No one can prepare you. No matter how many times you hear “just wait ” you still don’t understand the constantness of parenthood until that baby is living with you 24/7. It’s like that.

In some ways this is good discipline for me. I can’t just drop everything and run to a store. I have to prioritize and plan errands. And that is a good thing. Thank goodness, I am a homebody by nature. Even so…

Today wasn’t a good day for Mom. And I am feeling very melancholy. She was so weak and frail, and I guess, sad. And that is hard to see. She is spunky by nature. No spunk today. I wonder if I’ll ever see the spunk again.

Lord, I love my Mom. Give her rest tonight. Help her sleep peacefully. Help her to have a better day tomorrow. Give her back some of that spunk that I use to grumble about… and Lord, forgive me for that.

I Don’t Know What To Do

Posted on April 12, 2014 by A Journey With Mom

Well, two days ago, I would have said Mom is improving. After crashing on Monday when out-of-town family left, she rallied and has had a good week. However, yesterday, she was just so confused all day. She spent the day with my sister-in-law, and on the way to her home, she asked me three times in the car, ‘where are we going?’. Her home health nurse and physical therapist went there to see her. But she didn’t seem to recognize them or understand why they were there. Last night when my brother brought her home, she looked totally exhausted.

When she came out this morning, she was dressed — complete with shoes and earrings. I thought that was a great start to the day. But as we talked over a cup of coffee, and she fidgeted with her hearing aids (replacing the batteries again!), she just didn’t seem herself. I was hoping to get the name of her hearing-aid company so we could once again order batteries from them. Recently, I’ve been picking them up at the local drugstore, and they just don’t last as long. But Mom couldn’t remember the company or the fact that she had always gotten the batteries from them. She was just confused by the conversation; so I dropped it.

After breakfast, she headed to her chair, and has slept the morning away. I have banged pots and pans and dishes as I emptied the dishwasher. I even used my cellphone to call the house phone so the ringing would wake her up. I put on an old movie — she loves old movies. I turned the volume up really really loud , and made a mental note to pick up some ear plugs for myself. “Mom, here’s a movie coming on. Cary Grant and Grace Kelly”. She roused and said, “oh, that’ll be good”. I think she may have seen bits and pieces, but she still slept through most of it.

I woke her again; fixed her lunch. She is cold. I helped her into her fleece sweater; checked her temperature. She says she feels fine, but she is just tired today. So sad. This is not my mom.

Usually I insist that she walks more; lets get that blood pumping. I often have her “walk the circle” in my house a couple of times when she gets up to use the bathroom. She is usually reading the paper or doing a crossword puzzle. She loves to watch the news. But not today…

I put a Julia Roberts movie on because Julia is one of her favorite actresses. But she is sleeping again. She hasn’t done this before — slept the day away. I’m not sure what to do. Will this disrupt her sleep tonight? Is she sick? She ate a good lunch. She just can’t keep her eyes open today.

I don’t know what to do.

Lord, I need wisdom and clarity today. These are the days that I get overwhelmed with this task. I don’t know what I am doing. Please help me to give her the best care. Help me to know what to do and when to do it. Please give Mom strength today. Her body is so tired and frail. I don’t know what to do…

Why Can’t I Just Go Home?

Posted on April 5, 2014 by A Journey With Mom

It’s been a little over two weeks since Mom came to live with us. She was so incredibly weak when she arrived. What did they do to her in that hospital? She was better before she went in! How can “taking water off” her body leave her so emancipated? She looks like she has aged 10 years.

We have tried to settle into a routine, but life has been a little crazy. Home Health Care is coming for awhile to help with rehabilitation. There was one nurse who came for two and half hours just to ask questions. There was a physical therapist who came for about an hour and half and evaluated Mom’s legs — walking, balance, etc. The next day, an occupational therapist came to check on her arm strength and cognitive skills. Then the next week, actual therapy began.

Mom isn’t a happy camper about therapy. She rolls her eyes at me (kinda funny — is this payback time, Mom?). She thinks once she is back on the golf course, she will get strong. “Golfing will make me strong”. I think I may have to take her into the backyard myself and let her attempt to swing that club. I think she is a kinetic learner. Once she actually sees that she cannot golf, physical therapy may not seem so silly to her.

So in the last two weeks, I think we have had a total of seven different professionals here. Those who evaluate, those who actually train, and those who fill in for those who train when they go on vacation. What a zoo! And on top of all that, we had a big milestone birthday bash for my husband here — planned months ago. I felt sorry for Mom. So many people here and such a long evening for her. She did great, but she was exhausted.

The next weekend, she went to my sister’s. My husband and I had a short getaway planned to Chicago to complete his birthday celebrations. Again, Mom, I’m sorry. I know routine is your friend. Life has been anything but routine. She is confused about why she has to go there. ‘Why can’t I just go home?’

I’m getting that question a lot. I don’t blame her. I try to make things as easy for her as I can. I try to give her plenty of “space” to do what she wants. I haven’t made any extra demands on her about eating or exercising. She is eating well and walking. I’m trying to give her as much freedom as possible. But I know she just wants to be in her home. I get that. And it makes me really sad. I wish I could give her that; and it breaks my heart that I can’t.

Lord, Show me how to make Mom as comfortable as possible. Help her adjust to our home. Make it her home. Give her peace and contentment. Please don’t her friends forget she is here. Help me to be creative in getting them together.

The Days Need To Be Sweet

Posted on March 16, 2014 by A Journey With Mom

The whole saga about the memory patch seems like ancient history so much has happened this week. I still don’t know if Mom took the patch off or not…. one phone call, yes; the next phone call, no. It doesn’t even matter anymore.

Mom’s in the hospital — again. Third time in as many months. The nurses know her by name as her bed is wheeled into place. She gained 20 pounds this week; all water. I have called her every day, but I didn’t make it over there. How can things change so quickly? She gave no indication that she was retaining water. The Cardiologist had just given her a stable report. But here we go again…. Her heart won’t go out of AFIB…. And she is so confused; hard to hold a coherent conversation with her. She is still trying to cover, and if I didn’t know the truth, she would be somewhat believable. And that’s the hitch. She isn’t doing well physically, and she is very confused — but tries to cover. I don’t think she’ll be going back home alone. I should have been better prepared. We knew it would come to this, but it’s come much faster than we anticipated.

If she is sick, she’ll be willing to come here, but once she is a little better, she will be wanting to go home. I don’t blame her. It stinks. Everyone wants to live in their own home. So sad.

I need to get some books — I need to get educated on this. I need to get prayed up!

God, please give us all the grace we need in the days ahead. Help my siblings and I make these days loving and nurturing and sweet. May my Mom feel loved and cherished. We’re going to need your help. And even as I write this, I feel a peace about it. I know you will give all the grace we need to walk this road. You have been faithful in the past … I can trust the days ahead to you. And that is comforting.

A Phone Call at 2 a.m.

Posted on March 12, 2014 by A Journey With Mom

It’s been a crazy week. A solemn week. A phone call at 2 a.m. I’m half asleep, but I think I hear the last few chimes on my cell phone. My first thought is: Mom! But no, it’s not Mom, and it takes me a few seconds to change gears. But I hear my daughter’s fiance’ saying things like, ’emergency room, sedated, intubated’. And I physically feel his words in every pore of my body. As I try to make sense of what he is saying, I scribble as fast I can on the pad by the phone. He hands the phone to the ER nurse and she relates, more calmly, exactly what I’ve already been told with the addition that they are transferring her to the “bigger, better” hospital. The weight of that sinks in.

I wake her dad, as I start throwing things into an overnight bag. Why does she have to live 5 hours away?! Dear God…. Dear God…. Dear God…. I pray the whole way there.

The better hospital has her stable when I arrive. No mother ever wants to see her child like this — tubes and wires everywhere. So much equipment in the room. A machine is breathing for her. Her eyelids, face and neck are very swollen. I run my fingers through her hair (she always loved that) stroking her and telling her, ‘you’re okay; it’s going to be okay; I love you’. At one point, later in the day, as I am holding her hand and whispering to her, she squeezes back. Thank you Lord Jesus. Thank you.

Anaphylaxis. I was barely familiar with the word. A few more minutes and we would have lost her. Severe, life threatening, allergic reaction. To what? We’re still not completely sure. And that’s the scary part. Dear God…

While at the hospital, over the last few days, I have touched base with Mom every day on the phone. She is doing fine. She sounds good. I know my sister has been there to visit. I’m not worried about her.

When I arrive home, the adrenaline has left my body (I’m great in a crisis), and I crash on the couch for a complete day. I’m worried and sad and scared and…

On Monday, after checking in with Mom, I go shopping. Enough said. I just can’t be in this house doing normal things. I have been thanking God constantly, but now I just need a distraction.

On Tuesday, I’m scheduled to pick my 8 year old granddaughter up from school. I am “in charge” of her while her Mom and baby brother go to Riley Children’s Hospital for a somewhat minor consultation. While waiting for the school children to be released, I call Mom. It takes her quite awhile to answer the phone. She says, ‘bathroom emergency’. Evidently this has been going on for a few days. “I’m not taking my meds anymore. They are making me sick. I can’t live this way.” Sigh. As I convince her that she must take her pills; she has no choice, I also allow her to remove the “memory” patch. Throw it away. Don’t put on another one. Let’s wait a few days, and see if that helps. She accepts this and says she’ll take her pills. We talk for a few more minutes, and I am confident she understands. Pills must be taken.

I call the doctor’s office just to let them know what’s going on. Since our last appointment, we have gone for blood work and had the scheduled mammogram. I cancelled the stress test — the Cardiologist, after all, gave her a “stable” status and isn’t seeing her again for six months. Let’s not fix what’s not broken right now. We are awaiting more blood work, bone density, and physical therapy. I think that’s all.

I need to check my notes. Having a daughter get sick has muddled my brain. My whole life was held in balance there for a few days. I haven’t even processed what “take the memory patch off” entails…. I can’t think about it right now.

One day at a time. One crisis at a time.

Mom, daughter, granddaughter… I hug the 8 year old a little tighter; a little longer.

Lord, thank you. I am so grateful….so very grateful.

What Are Those Pills For?

Posted on February 27, 2014 by A Journey With Mom

I think I am seeing some improvement in Mom remembering details and the sequence of events. Just little things here and there. I don’t know if the new “memory” medicine is helping or if she is just recovering from being so sick in December, and things have settled back into a routine.

We had two doctor appointments today. The first one was with her Cardiologist. He was pleased with her progress. Blood pressure, oxygen levels, pulse, and heart rate all passed with flying colors. He declared her ‘stable’. Yay! In fact, he doesn’t need to see her for six months. Good news. Really good news, and we are feeling great when we leave and head to lunch.

Mom doesn’t want to eat. She doesn’t even want to see a menu. She just orders the soup of the day, not even caring what the “soup of the day” is. She forces it down — no crackers, no bread. This has been going on for a month now. No appetite at all. And bouts of diarrhea. She has been elated with her weight loss, however, I am not. Even though, yes, she could stand to lose a few pounds, I know her loss of appetite is not a good thing.

It is also while we are eating that Mom shows signs of the disease again. I answer several questions 2 or 3 times each. She has already forgotten that we have another doctor appointment today. ‘Where are we going?’ And she tells me a story that I have already heard a dozen times.

Mixed emotions. Oh, Mom….

I keep my grandchildren 2 days a week while my daughter works. I love knowing them intimately and taking care of their needs. I want to remember that these two care-giving relationships are not the same. I want to help nurture and train these sweet babies. But with Mom, while I want to help and care for her, I don’t want to patronize her and “talk down” to her. I want to respect her. I want to keep learning from her … everything I can. And I want to be patient and kind. Please don’t let me be short with her. Help me to listen intently to every story every time.

We get settled into the little cubicle at the Internist, and we wait …. and wait and wait and wait. Argh. When he finally arrives, he takes his time, and is sincerely interested — and it is hard to stay irritated.

And I am right; the loss of appetite and upset GI tract mean that she cannot stay on the new medicine. We cannot trade one problem for a set of others. He wants to try a patch instead. It needs to be changed daily. I cringed at that — I wish it was a monthly or even a weekly patch. I am pondering that as he goes on… ‘I think she should have a bone density test, a mammogram, blood work, physical therapy, a stress test and…’. What? Huh? Oh, yes, of course. It takes us way too long to “check out”, and as we leave, I have a stack of papers in my hand: prescription, blood work forms, doctor appointment reminders. And I am a bit overwhelmed, and I am no longer feeling “great”.

One day at a time.

I settle Mom back into her apartment. I tell her I’m going to fix her pill box and take out all those little memory pills. I also take the prescription bottle out of the medicine cabinet. I tuck it into my purse as fleeting thoughts of taking them myself float across my brain… helps with memory and weight loss… hmm….

Mom brings me back to reality and says, ‘what are those pills for?’ And I can’t help but smile.

Lord, I feel so inadequate to take care of her. At times, it feels overwhelming — not that she is hard to take care of or difficult in any way — but the responsibility of it scares me sometimes. What if she falls? What if she has a heart attack while she is here? What if? Lord, protect her. Give me wisdom and insight and discernment.

You Look Familiar

Posted on February 12, 2014 by A Journey With Mom

Ok, so among all this turmoil, there has to be some humor. I don’t want to make fun of or dishonor my Mom in any way, but this is kinda cute…. just part of the journey.

Two weeks ago, we were at the pharmacy yet again, waiting for prescriptions to be filled. This was our second trip that week. The place was busy… people standing and sitting everywhere, waiting for their meds.

I was in line; my Mom was sitting across the aisle from me, chatting with another elderly lady. This lady was a stranger, so they were just talking about the weather and the busyness of the store. Mom decided she needed a few other items so she got up and went to retrieve them. A few minutes later she was back and sat down again. She looked at this elderly woman, and said, ‘you look familiar; you were here the other night when I was waiting too’. Seriously, I almost laughed out loud. Oh Mom…. I didn’t say it, but no, Mom, she looks familiar because you were just talking to her 5 minutes ago.

But the icing on the cake was when the other elderly woman said, “I was? hmm, I don’t remember being here the other night’. Oh, God love ’em.

Lord, If I don’t find some humor on this path, I just might get swallowed up by my grief. But I ask that you help us to find joy and laughter together. I don’t want laughter at her expense. Bring joy into Mom’s life.

A joyful heart is good medicine, but a crushed spirit dries up the bones. Proverbs 17:22

How About A New “doo”?

Posted on February 12, 2014 by A Journey With Mom

One of the challenging things with Mom right now is determining what ailment is causing what symptoms. Her eyes are watering, her head feels “full”. Is this the congestive heart failure? Is it a side-effect of some med? Or is it allergies? She has always suffered from allergies, but the last couple of years have been a bit more severe. She moved into an apartment just about that time. We are wondering if she is allergic to something in her home. Oh my, what a mess that will be…. another move? Can her memory deal with all her belongings being in yet a another new closet, new cupboard? Oh Dear God….

She wanted to take me out to lunch on Monday. We ate at a local eatery, then made our weekly visit to the pharmacy. Afterwards, I hated to take her home so soon. The weather here has been bitter this winter, forcing her to stay inside most days. We live in a small community — not much to do on a very cold winter day, but I suggested we stop by a hair salon. “How about a new doo, Mom?” It had been months — years maybe — since a stylist cut her hair. Mom is kind of a “do it yourself” woman. The plumbing below her kitchen sink can attest to that! Anyways, after a couple of stops, we found a salon that could take her immediately. The young, heavily tatooed, fuchia-hair-colored beautician was the perfect fit for mom. She was kind and gentle and very patient. I took a few pictures, but I only feel comfortable, at this point, posting one. Some day I may add the rest. Look at that head — hardly a gray hair! She has never colored it. I think I have more gray hair than she does. It was a fun, normal thing to do. I love my Mom.

I have not noticed any major memory lapses this week. However, I do think the pharmacy has decided it is their mission to test her. I have asked them to text and call me now. Let me deal with all that confusion. Seriously, there is just a lot of communication with so many drugs involved. I made that decision when they ran short of a couple of her meds and wanted to only fill half the bottles. Good grief.

We’ve had a communication problem with the new cardiologist. Some very important drug dosage info was left off the paperwork — and oh my — their paperwork is their gospel. I can’t seem to get the nurse “hotline” to understand what actually transpired. These are the kinds of things that drive me crazy. But lessons are being learned. I will never walk out of a doctor’s office again without the paperwork being accurate.

During one of our conversations this week, Mom mentioned my brother’s upcoming trip.

She remembered.

Not only did she remember he was leaving, but she remembered when he was going. I said, ‘do you remember where he is going?’ Yes, she did….

That, my dear friend, is progress. I am hopeful.

Lord, hope keeps us going. Thank you for the little things that bring hope.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal,” 2 Corinthians 4:16-18

The Pill Box

Posted on February 6, 2014 by A Journey With Mom

I need to head to Mom’s today. Her pill box needs attention. We had a little bump in the road last week. The doctors have changed her meds several times over the last month. I’ve taken away all pills that she no longer needs. I don’t want her to take any by accident.

Her pill regiment had been the same for years, but last month, after she got really sick, the doctor stopped two of those meds. He put her on a different regiment. It was confusing — even to me. As we sat there, figuring out the dosages and dropping them into her new pill box, I knew she wouldn’t “get it”. So I took one of each of the two pills that were stopped and actually taped them onto her hospital discharge papers. ‘See, Mom, these two pills — you are no longer taking them. I am going to write that here underneath them’. DOCTOR STOPPED THESE TWO MEDS — I TOOK THEM WITH ME and I signed my name.

The next morning, she called, ‘did you take some of my pills? I can’t find them. They are not here’.

Last week, after she was feeling short of breath for several days, we realized that she had set one prescription bottle up high in the medicine cabinet, thinking she wasn’t suppose to be taking those pills. I hadn’t filled the box that last time. Things had settled down a bit. She had been on the same pills for a couple weeks. She told me she could do it — by doing it before the boxes got completely empty. She would just follow suit. Well, that didn’t work. Lesson learned.

It’s hard to tell right now how much of this is forgetfulness or just not listening or the “confusion” . I just know that I have to do the pill box. It is important. She is taking meds for three different “ailments”, two of them are life-threatening.

And I pray to God every day that the pills themselves cause no harm.

God, help me help her. Amen

Remember, Mom

Posted on February 5, 2014 by A Journey With Mom

My mother is sick. She is very sick, and it has consumed me. She has always been a strong woman — emotionally and physically. But this illness is taking its toll. She will turn 84 years old this summer, and she is worried her health will affect her golf game! Yes, that kind of strong. She may fully recover and be able to play golf this summer — that is our goal, however, seeing her frail and weak makes me sad. This is new territory for both of us. I don’t want to be morbid, but it has been hard to watch her face her mortality. I see something in her eyes that has not been there before. And it grieves me.

The physical illness is acute right now, and is wrecking havoc on her body. My sibs and I are concerned about her heart and her lungs. But something else is going on, something friends and even doctors haven’t noticed yet. She can’t remember.

Mom has always loved to talk. She commands a room. And she frequently forgets what she has said to whom, and so repeats herself. She may tell me something 5 times — or forget to tell me at all. That is Mom; who she has always been. But this is different. She covers well, but I am with her often enough now, I know the truth. I know the details of her life, the sequence of events. She is confused. She can’t remember. And its scaring me.

I was raised in a family with 4 girls (and a boy), and I have four daughters of my own. I know first-hand that mother-daughter relationships can be tricky. My mom and I have always been on good terms. No major upsets. We have done fine. But we have lacked some common ground and some depth to our relationship. I have yearned for something more, and I have always kind of blamed her for the lack. But something has happened lately. Through doctor appointments, trips to the pharmacy, “pill box” dates, and frequent luncheons, Mom and I are together — a lot. We’ve finally ventured beyond the weather and Fox News. We’ve had some important talks. We’ve talked about life: her childhood, my Dad and us kids. We’ve even talked about death. I didn’t want to put extra worry on her (she has lost so much lately), but one conversation gently circled around her memory or lack thereof. I prodded softly, wanting her to open up and share what she thought was happening.

My Gramma forgot too. Not the alzheimer-kind of forget, but the “D” kind. We aren’t really saying it yet. Like if we don’t say the “D” word, it won’t happen. We are just talking about remembering and forgetting for now. There have been advances since Gramma walked this road. And Mom is already 10 years older than her mother was when her memory failed. I asked Mom permission to talk to the doctor about it at her next visit. I said, ‘He can’t help if he doesn’t know’.

We’ve since had the appointment. Yes. There it is. Now we know. I already feel the loss.

We are just beginning our journey with this new diagnosis. The meds haven’t kicked in yet. She is still confused, but I feel hope that Mom can be helped … that we can ward off this disease for as long as possible.

Our roles are kind of reversed now. I am watching over her. I’m checking in and calling. I am the caregiver. I feel an urgency to know her. To learn all I can. I want to stop the clock. This is how I have always felt about my children, but now…

There is a new depth to our relationship. Has it been me all along?

Lord, I don’t know what the days ahead hold for my Mom. But I know you have it under control. Psalm 139: 16 says, “You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” May we trust you fully each and every day.

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Philippians 4:6 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

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