My Mother May Never Speak To Me Again

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

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

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

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

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

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

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

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

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

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Just a Pat on the Hand

I was not at my best yesterday.  Four hours of sleep and the stress of getting Mom’s apartment ready to pack evidently were not a good combination.  And unfortunately, I let my guard down.

Mom and I had our first big confrontation yesterday.  We were both upset and mad and didn’t speak the rest of the evening.  I take the blame for the argument.  I am not the one who is sick and tired.  I am not the one with a dementia diagnosis.

She went to bed first — without eating any supper.  I followed shortly after.  Lying in bed, I knew I would never sleep.  What am I doing?   Over the monitor, I could hear Mom’s restlessness as well.

I slipped into the kitchen, took a plate from the cupboard.   And with a few hardy snacks, I tiptoed into her bedroom.   I knelt by her bed, ‘Mom, I’m sorry I got mad.  I love you.  I brought you a few snacks’.

She was drowsy, but as she patted my hand, she said, ‘I love you too.  It’s okay.  But I’m healing…I’m healing’.   I don’t think I ever remember my mother patting my hand.  Emotions run deep.  Why do mother/daughter relationships have to be so complicated?

I kissed her cheek and gave her a hug then headed back to my own bed.  Big deep breath.

Lord, forgive me.  I blew it.  I cannot control anyone else.  I can only change my behavior — and only with Your help.  May I be kinder and gentler.  And may I have patience.

I pray for contentment and peace for Mom.  This is so hard on her.   Help us know what to do.  We just don’t know what to do…

 

 

 

 

 

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

 

 

 

 

 

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.

Sometimes There Is No Air

Graves Disease.  Hyperthyroidism.  Both very treatable.  Both easily identifiable.  Both missed.  Wow.  My mother has been sick for months, really really sick, like the close-to-death kind of sick.  And the whole time, it was something that they missed.  I don’t even know what to say.  How does that happen?   And the doctors are shocked as well.  They are being open and honest with us, saying things like, ‘we missed it’, ‘checking thyroid is standard procedure’, ‘I feel like an idiot’.  Yes, a doctor actually said that.   This was all avoidable.  Her thyroid numbers were off as far back as May 2013, and no one followed through with that report.  14 months.  Wow.

So the good news is, Mom is going to get better.  She is already so much better.  That is wonderful and we feel blessed.  We sincerely thought we’d be burying her before summer’s end.  All signs point to another chance.  She has been given more time.

The bad news is she won’t be content here.  We’ve been through this before.  Every time her health improves.  Same story.  And I don’t blame her.  She had an active life she loved.  She wants her life back.  And who knows, maybe she’ll get it back… time will tell.

I called my sibs together today for another family meeting.  Mom was so sick 6 weeks ago when we met, she doesn’t even recall that conversation or any of the decisions made during the meeting.  Her lease is up at the end of the month.  We need to move ahead packing and storing, and I need some reinforcements before I forge ahead.  Even though Mom seems to be on the path to recovery, she will not be able to live alone for months.  She has already paid five months rent for an apartment that no one is living in.  The lease is up, the apartment has to go.

We talked in circles — the dementia rearing its ugly head — but she did, in the end, agree about the apartment.  I will get supplies and begin packing evenings this week.  I wonder how much of the conversation she’ll remember, and how much of it will be twisted and repeated incorrectly.   She has already had one phone call from a friend — 10 minutes after everyone left — and many details were skewed already.  It is sad.

And so I’m struggling right now.  Feeling sorry for myself.  My sibs have left — all to their different Sunday evening activities, and I’m here at home — with Mom.  Even my husband and daughter flew the coop.  (After the tense afternoon meeting, my husband decided it was a good time to power wash the house — anything to get outside).

Mom is mobile, and we can get out.  But frankly, we’re kind of tired of each other.  We’re both well-mannered enough to remain cool, calm and collected.   We’re both kind and considerate to each other.  But I want out of the house to do something else.  And so does she.

I did go out to eat with my husband earlier today, well, my husband…. and my mom.  My mother is always here.  Around every corner.   And I know some day, I will not be able to say that.  She will be gone.  Guilt.  But it’s like a new mother with that toddler.  She loves him more than life itself, but he is always there.  No escape.  The days are long and monotonous.  I’m sure that is exactly how my mom feels too.  I am always here.  She never has any privacy.  She never has a minute to herself.  We just need air.  Sometimes there is no air.

We are buggy.

We need a break.

I am reading a book on listing good things.  Remembering and counting.  Practice.  Practice thankfulness.

I am thankful for the time I’ve had with my mother.  I am thankful for the lessons being learned as I care for her.  I’m thankful for the relationship she has developed with my grandchildren, and the fact that they will remember GG.  I’m thankful for a husband who has been kind and generous to his mother-in-law.  I’m thankful for Mom’s second chance at life.  I am thankful for the health, strength and time I have to invest in my mother.

I am feeling a little blue,  sorry for me, but I know God is faithful.  I know He is good.  And He is working all this out to His glory.

Today is just a bump in the road on this journey with my mom.

Tomorrow we will be fine.

It’s all good, and we will be okay.

Everyone has moments, or days, when they just feel overwhelmed with what’s on their plate, right?  Practice. Practice.

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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

 

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…

iStock_000015062038XSmall_DisappointmentValley-sjh

 

 

 

 

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.

puzzle-pieces

 

 

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.

 

“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.

 

Why Can’t I Just Go Home?

It’s been a little over two weeks since Mom came to live with us.  She was so incredibly weak when she arrived.   What did they do to her in that hospital?  She was better before she went in!  How can “taking water off” her body leave her so emancipated?  She looks like she has aged 10 years.

We have tried to settle into a routine, but life has been a little crazy.  Home Health Care is coming for awhile to help with rehabilitation.  There was one nurse who came for two and half hours just to ask questions.  There was a physical therapist who came for about an hour and half and evaluated Mom’s legs — walking, balance, etc.  The next day, an occupational therapist came to check on her arm strength and cognitive skills.  Then the next week, actual therapy began.

Mom isn’t a happy camper about therapy.  She rolls her eyes at me (kinda funny — is this payback time, Mom?).   She thinks once she is back on the golf course, she will get strong.  “Golfing will make me strong”.    I think I may have to take her into the backyard myself and let her attempt to swing that club.  I think she is a kinetic learner.  Once she actually sees that she cannot golf, physical therapy may not seem so silly to her.

So in the last two weeks, I think we have had a total of seven different professionals here.  Those who evaluate, those who actually train, and those who fill in for those who train when they go on vacation.  What a zoo!    And on top of all that, we had a big milestone birthday bash for my husband here — planned months ago.  I felt sorry for Mom.  So many people here and such a long evening for her.  She did great, but she was exhausted.

The next weekend, she went to my sister’s.  My husband and I had a short getaway planned to Chicago to complete his birthday celebrations.  Again, Mom, I’m sorry.   I know routine is your friend.  Life has been anything but routine.  She is confused about why she has to go there.  ‘Why can’t I just go home?’

I’m getting that question a lot.  I don’t blame her.   I try to make things as easy for her as I can.  I try to give her plenty of “space” to do what she wants.  I haven’t made any extra demands on her about eating or exercising.  She is eating well and walking.   I’m trying to give her as much freedom as possible.  But I know she just wants to be in her home.  I get that.  And it makes me really sad.  I wish I could give her that; and it breaks my heart that I can’t.

 

Lord, Show me how to make Mom as comfortable as possible.  Help her adjust to our home.  Make it her home.  Give her peace and contentment.  Please don’t her friends forget she is here.  Help me to be creative in getting them together.

 

 

The Pill Box

I need to head to Mom’s today.  Her pill box needs attention.  We had a little bump in the road last week.  The doctors have changed her meds several times over the last month.  I’ve taken away all pills that she no longer needs.  I don’t want her to take any by accident.

Her pill regiment had been the same for years, but last month, after she got really sick, the doctor stopped two of those meds.  He put her on a different regiment.   It was confusing — even to me.  As we sat there, figuring out the dosages and dropping them into her new pill box, I knew she wouldn’t “get it”.  So I took one of each of the two pills that were stopped and actually taped them onto her hospital discharge papers.  ‘See, Mom, these two pills — you are no longer taking them.  I am going to write that here underneath them’.  DOCTOR STOPPED THESE TWO MEDS — I TOOK THEM WITH ME and I signed my name.

The next morning, she called, ‘did you take some of my pills?  I can’t find them.  They are not here’.

Last week, after she was feeling short of breath for several days, we realized that she had set one prescription bottle up high in the  medicine cabinet, thinking she wasn’t suppose to be taking those pills.   I hadn’t filled the box that last time.  Things had settled down a bit.  She had been on the same pills for a couple weeks.    She told me she could do it — by doing it before the boxes got completely empty.  She would just follow suit.  Well, that didn’t work.  Lesson learned.

It’s hard to tell right now how much of this is forgetfulness or just not listening or the “confusion” .  I just know that I have to do the pill box.  It is important.  She is taking meds for three different “ailments”, two of them are life-threatening.

And I pray to God every day that the pills themselves cause no harm.

God, help me help her.  Amen