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

 

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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Doctor’s words: I think We Missed Something

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.

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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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It Doesnt Matter, We Have Bigger Fish To Fry

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.