I hope her world makes sense again

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.images

 

 

 

 

 

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

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.

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

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.

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We’re Haunted by the Shadows – enough already.

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.

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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