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

 

“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.

 

 

 

I Think Tomorrow Will Be a Really Hard Day

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

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

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

And for now, that is a blessing.

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

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

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

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

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