My Mother May Never Speak To Me Again

Roughest two weeks of my life.  Mom just continued in her anger.  We are not sure exactly what is going on.  Is it a medicine side-effect?  Is she just plain mad at us for not allowing her to go home?  Is it dementia?  So hard to know.   I have never seen my mother exhibit anger like this toward her children.  It is heart-breaking.

Last Tuesday evening, she was scheduled to go out to eat with my niece and her family.  At about 3:00, Mom walked into my kitchen and demanded to go home.  “Home” of course, does not even exist anymore, but Mom does not remember that.   I calmly reminded her that she had dinner plans.  She then stated she would be going home from dinner then:  ‘I am not coming back!’  Sigh   I did not answer her; no reason to pick a fight.  But shortly after that conversation, she began to pack up every single thing she owns.  She folded clothes into laundry baskets and put shoes into grocery bags.  It didn’t take her long, and before I could actually think of a plan B, she had emptied every drawer and closet.

She was practically giddy for the last 30 minutes while we waited for her dinner date.  Wow — such a personality change.  Hmm, so she can control it.  In the midst of all this activity, I had received texts from my siblings that Mom would stay the night with my brother (niece’s dad) and then head to my sister’s for a few days.  She left happy as a lark and I was bawling like a baby.   She thought she was going home, and I knew she was headed to yet another kid’s home.  Seemed like the ultimate betrayal.

A little side story from over the weekend:  For those of you who have read previous posts, you know my Mom lives to golf.  That was her ultimate health goal: To be able to get back on the golf course.   My sister’s husband is a golfer, and since Mom wasn’t mad at him, he offered to take her golfing.  They played nine holes.  Nine holes!!  And she beat him.  Are you kidding me?  I know my mother is a strong woman — and a stubborn woman — but she had something to prove that day.  But, wow.  Nine holes!   Thank goodness my bro-in-law is a good sport!

Mom was angry for the four days she was at my sister’s home — barely talking to my sister.  It is extremely challenging for anyone to live in that kind of environment.  Enough said about that.  We can talk about “why” forever, and still never know.  We’ll just blame the disease and give Mom the benefit of the doubt.  Who is this woman?  How many times have I said that during this journey?

A week has passed since she left my home.  And in that time, we have moved Mom into an Assisted Living apartment 3 blocks from my sister’s home.  My sister had already laid all the ground work for the facility; Mom’s insistence on leaving my home only accelerated the move.  Sunday was the hardest day of my life.  I may write more about that some time, but for now the emotions are too fresh, and raw, and too close to the surface to blog about it.  Some day, maybe.

The apartment is in an amazing facility.  There is much offered and people actually want to live there.  It is not “home” yet.  And Mom is still very mad at her children.  However, she is talking and engaging with the staff.  Not so much with residents yet (baby steps are okay).  My sister found out she signed up for a water-color class.  Seriously?  Wow.  So we are 2 days into this dramatic move, and I see a glimmer of hope.

However, I’m not sure my mother will ever talk to me again.   When I kissed her good-bye on Sunday, her last words to me were, ‘I didn’t think you’d ever do this to me’.

I hope she finds her place.  I hope she continues to get healthy.  I hope she thrives.  And I hope she forgives me.

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Its Not About Me And Yet…

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?

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.

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Who Would Ever Think the Dementia Could Be a Blessing?

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.index

 

Another Doctor. Another Hospital. Stay Number 7

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…

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Could Someone Please Just Help

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.

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That Would Be Terminal For You

The good news is the CT scan was normal.  The bad news is Mom is back in the hospital.  I just want to cry.  I tried so hard to avoid her going back in, but some things are just out of my control.  It isn’t her heart or her congestive heart failure.  Blood work showed that she has improved in two weeks.  But her legs just won’t work.  And the doctors all agree that something isn’t quite right;  she is a fall risk.  The ER doctor bluntly said, ‘you can’t go home because you might fall and break your hip, and that would be terminal for you’.   Ouch.  But it was what Mom needed to hear.  It was what I needed to hear because I wasn’t so sure I was going to leave her there.

I am here at home today caring for my three grandsons.  The distraction is good.  My sister-in-law is at the hospital texting me periodically with updates:  ‘waiting for MRI…   gone for MRI…. will take about an hour…  Doctor just in…. He is coming up with nothing’.  Great.  Not what I wanted to hear, but I guess I don’t know what I want to hear.  I’m not sure there are any good scenarios here.

So I wait.   Hard to be here and not there.

I don’t think she’ll be coming back here for awhile.  I think they will try to do rehab somewhere.   That “somewhere” will most likely be the local nursing home.  And that makes me want to cry too.   I know Mom doesn’t want to go there.  I told her I would do everything I could to keep her here.  I just pray to God if she has to go there, it will only be temporary.   I don’t want her last days to be in a nursing home.

I fear she won’t come out.