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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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

 

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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“The Pathology Report Is Back”

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…

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.