Good day: The hospice definition

I’ve decided that mom’s condition is what it is.  I’m 99% certain she is not going to rebound.  I have seen her this bad before, but there was a reason and therefore, a fix.  And that fix should bring about improvement.  But this time, she seems to have gone to that place where Alzheimer’s patients go that doesn’t really offer any return service.

Now, knowing mom, I will not say 100%, because if I did, she’d find a way to make me wrong.  And make herself right…it really is one of her favorite things!  And I would be happy to be wrong.  But I am afraid this time she’s going to let me win…

The other thing I’ve decided is that a “hospice” good day is different that one of our old, non-hospice good days.

A hospice good day involves color in her cheeks.  A strong and steady heart beat.  Deep, steady breathing.  Awareness when we talk to her.  An occasional smile.  No new pressure sores.  And even better, pressure sores that are healing!

A good hospice day has only one set of sheets, one nightgown and one towel and washcloth to launder.  On a good hospice day, mom drinks 8-10 ounces of water instead of the 32 ounces I used to strive for.  A good hospice day means a little bit of food is eaten…even if it’s entirely made up of Popsicles and ice cream!

A good hospice day has time for a shower for this sweaty, weary caregiver somewhere in the middle.  It has moments for the kids to spend fussing over mom while they do their homework or listen to music.  A good hospice day means there is someone to help me get mom ready for bed and back into her bed quickly and with as little discomfort for her as possible.

The best hospice day is any day that I get to hold her hand and sing her a song or read to her or tell her about an old favorite memory.  Or take a nap at her side.  Or put her hand on Sophie and see her sort of remember how much she loves that old fluffy dog.  Or pray with her.   I guess what I’m saying is … A good hospice day is any day we get.

It’s a Roller Coaster Ride

I sat down yesterday to rave about the great days mom had over the weekend…well, except for the ear thing…but she was mom again.  Minus her words, but mom.

This rolling geri-chair is the best thing ever!  I rolled her into the kitchen so she could be with me while I made dinner.  I rolled her up to the kitchen table to “have breakfast” with me.  She didn’t eat, but what the heck!?  She sat at the window in the front room and watched the kiddos play and ride bikes.  She watched the cars and neighbors come and go.  She watched the dogs get their daily exercise and smiled at them all.

And then yesterday happened.

She slept funny (why do we say that when the result is never amusing?) and I could tell.  She had a stiff neck.  She was holding her head in this terribly uncomfortable position – because it hurt, which then made her arm stiff and achy and her shoulder kind of out of whack.

She didn’t eat much at all.  She did drink her water and she sat in her chair.  I moved the position every hour or so in the hopes of loosing up that neck and the rest of her person.  Not a bad day, but not one of the great ones either.

Then, last night I noticed her neck was kind of swollen.  I was changing her pain patch and getting her medicine drops and getting ready to get her dressed for bed.  By the time I finished the medications and rolled her chair back into her room, a huge orange-sized thing had appeared on her throat.  Scared the crap out of me.

The hospice nurse – who is lovely and kind and caring and warm and funny- responded immediately to my text and the picture of the giant thing on her neck.  She didn’t panic at all.  She told me what to do, what it probably was and said she would be here early the next day (today).  I got her into bed (thanks to the my big, strong, practical, non-panicky husband) and got her positioned just so.

She did not sleep.  She talked.  All night.  Names, followed by more names.  Followed by sounds and words and parts of words and more names.  It was a long night.  Sometimes it seemed like she was talking in her sleep and sometimes it seemed like she was wide awake.  Who knows?  She didn’t seem to be able to hear or maybe process my responses.  She sounded like she was asking questions, but never really paused for an answer.

Did I mention it was a long night?

I fell asleep somewhere in the night leaning on the rail of her bed and when I woke up, she was still murmuring and Sophie had snuck up onto her bed and was laying right beside her!  She just can’t help herself…she is, after all, a medicine dog!

The kids both came down before school and gave her a squeeze and a kiss on the forehead – because who can tell what will be.  That’s between mom and God now.

By 8:00am, I could tell that the swelling had gone down in her neck – but to me, it looked like it had sort of dispersed itself evenly all around her neck.  And there was a spot by her ear and down onto her neck that was swollen and red (could be from mom holding it all night) that concerned me.

The lovely Tiffany showed up as promised, and told me what she thought it was…I have since forgotten because I haven’t slept in a week…and ordered some antibiotics.  And gave us a pill crusher – which will make my daughter, the budding medical professional, very excited!

I am making some super sweet applesauce to mix the pills in…it would probably be easier to buy applesauce, but I’m solo today and I just bought some beautiful apples at the store over the weekend…and I’m going to use most of them for cinnamon apples to have with dinner tonight…or perhaps, I will sit down with the pan and a giant spoon and eat them for lunch…either way, the house smells wonderful!

Michele came too – and mom told her she wanted to get up, so we got her bathed (mom had lots to say about that!) and dressed and back into the miracle chair.  She changed mom’s bed linens, tidied her room (I cried it was so nice), and rolled mom out to her favorite spot by the big windows in the front room.

She sound asleep now.  I tried laying down, but I’m vibrating from being so tired and so worried and the giant mug of coffee I had this morning.  I will try again once my apples have cooled and a tiny cup of applesauce is ready for the soon-to-arrive antibiotics.

We’ve been up and down and up and down so much lately.  I’m having trouble knowing what day it is and remembering what I am supposed to be doing.  I was checking my daughter’s vocab sheet last night and forgot what I wanted her to correct in the second it took me to hand it across the ottoman to her…I handed it to her and then just stared with my mouth hanging open…we had to start over.  (she spelled sorry with one ‘r’ and needed to fix it)

But for now – we have peace.  And the smell of brown sugar and cinnamon and apples.  Another good moment after some scary moments.  This is so much harder than I thought it would be.  Because for all the KNOWING of how much better off mom will be in heaven… I’m going to be so sad and so lost and so orphaned once she is gone.  Selfish, I know… but I’m just not ready.

 

So Many Changes

Well, I THOUGHT I had mom’s meds figured out.  I guess not.  She has been so zoned out.  And what kind of existence is that?

I worry because when she is that out of it – she can’t open her eyes.  She can’t answer a question.  She doesn’t smile.  The words she knows won’t come out.

I tried what I thought was going to be her ‘regular’ dosage on Thursday and she was really out of it.  But I still gave her the night time ‘regular’.  She seemed more agitated than ever.  And with no hope of communicating what was wrong.  It was so upsetting.

About midnight, after we finally finished up homework and showers and packed backpacks and athletic gear and I thought I had mom down…I went up to take a much-needed shower (lifting a tiny, uncooperative mom is harder than you might think).  I checked some e-mail first and then jumped in – so I was away from her for maybe 45 minutes to an hour.

I heard her crying out as soon as I opened the door.  Not frantic or extra loud, but definitely not just another case of dreaming or mumbling.

When I got downstairs she had worked both her legs THROUGH the bars of her bed rails and gotten stuck.  And gotten tired.  So, there she was, both legs out to the knees.  With the rest of her laid back on her pillow all crooked.  It looked so uncomfortable.

I had to turn the light on to get her back in bed.  That made her mad!  I was actually kind of glad to see some emotion!  Of course her legs had started to swell from hanging down so the one knee that always gives her fits had to be forced back through the rails a bit.  I could see the bruising starting before I got her covered back up.

Needless to say, it was a long night.  I sat up with her until about 4:00am.  Her breathing slowed and steadied and I could tell she was asleep – deep sleep!  So, I laid down on the couch for a couple of hours until it was time to get the kids up and going.

So, yesterday, I stopped giving her any additional medicine beyond her pain patch.  The aide and I got her up, washed, changed into her prettiest nightgown and robe and put her in the geri-chair.  I wheeled her out into the living room and opened all the blinds and windows, so she could get some sunlight and fresh air.

It was a weird day.  She is saying a few names over and over and over.  She still knows the word water and scratch and ow!  She can let me know when she wants me to put her chapstick on or get her an extra blanket.  She doesn’t need to let me know when she is too hot.  She reaches deep down for a bit of strength and flings that blanket off her like a champ!

The good news is, without all the medication, she is drinking a lot of water.  She’s still not eating.  I got her to have a bite of popsicle.  Half a Nilla wafer.  A few sips of root beer.  That’s it.  I’m getting Ensure today.  I hope she’ll have at least a little bit of that each day.

She also didn’t complain of pain or moan and cry out, so the pain patch must be doing it’s duty.  And she didn’t seem too anxious during the daylight.  She started to get tense as the daylight faded.  Darned Sundowners.

So, I gave her the drops about an hour before sunset and got her back into bed.  I baked her a cookie (the break off, frozen kind) and she wouldn’t touch it.  She didn’t want eggs or toast or a french fry.  So bizarre that a couple of weeks ago, I couldn’t keep up with her appetite and these days she isn’t eating what I might consider a snack.

She slept better last night, but still had her moments of crying out.  I went to bed before my family, so I could catch a couple of hours in my bed.  Then I went downstairs to be with mom.  She really only needed me a couple of times.  And she slept on her side for the first time in a couple of weeks.  She’s always been a side-sleeper.  It’s good to know she’s got enough strength back to at least move herself around to stay comfortable.

This morning she was bleeding from her right ear.  The nurse thinks it’s a ruptured eardrum.  She’s showing no signs of extra pain or discomfort.  She’s not pulling at it or trying to reach it.  It was just bleeding.  It freaked us out, but didn’t seem to phase mom.

She’s back in her chair, sitting by the front window.  She’s still sleeping a lot.  Her eyes are cloudier than they used to be.  She is no longer putting in her bottom dentures.  She rarely keeps her glasses on.  The ear hasn’t bled anymore.  She is not complaining of pain.  And a kiss on the forehead will still get me a big smile and an “I love you a lot”.

It’s just so different.  And so unpredictable.  And scary.  But for me, this time, not for mom.  She seems so much more peaceful.  I guess that’s an answered prayer, right there.  But it’s not what we are used to.  I hope she knows that we want only the best for her and that we’re trying.  I’m certain we are getting it wrong – we can no longer decipher what she is saying most of the time.  But we are going to keep on trying for as long as she needs us.  I just don’t feel ready.  Not yet…

Medication Mixologist?

As if hospice wasn’t enough of an adventure – we now have new medications for mom.  I noticed last week that with her decline, she wasn’t having a lot of success taking pills anymore.  Her hands were shaking, which made it hard to get them into her mouth.  Her mind is wandering, so even when she got the pill into her mouth – she might forget it was there and never swallow it.  She was like one of those uber-military guys in movies who fake taking their meds so they can escape and save the world.  I don’t know where she was hiding it, but 30 minutes to an hour later, it would show up stuck to her hand or cheek or on her bed.  Scary!

Anyway, we now have gels and lotion-potions that I rub into her skin and drops that I put under her tongue and a patch that I change every 72 hours.

I wrote it all down. I feel like I asked at least 50 questions.  But there’s just no way to know how your mom is going to react to new meds.

We put the patch on, but kept giving her the regular pain medication for 12 hours because it takes a while to absorb.  Okay – got it!

Stopped all other meds and decided to start on the lowest dosage of the lotion-potion.  WOW!  She was OUT!  I mean, OUT!  23 hours drowsy.  Poor thing.  I’m sure she’s no worse for the wear, but it was awful for me.  She would try and open her eyes and they’d roll back in her head.  She’d try and form a sentence and a mess of sounds would come out….one of the times she was trying to tell me something – no idea what – she made a few sounds and then said “donut” as clear as a bell.  And then she laughed.  That was nice!  She did not want a donut (as far as I could tell), but even she knew that she had chosen the completely wrong word and it cracked her up…or maybe it was just the lotion-potion.

Okay, so next time I’m going to try a 1/2 of the lowest dosage.  NOPE!  It goes on mom’s wrist and she wasn’t letting anyone touch her hands yesterday.  So I decided to go with the drops.

Once again – lowest dose given.  OUT!  But a different kind of out.  A loopy, funny, almost drunken out.  Yesterday afternoon was an adventure!  We got some singing in.  And some rambling.  And some hand-holding.  Her eyes never really opened all the way up, but she did seem to be in a jovial place!  AND, I had to change the pain patch.  Good heavens!

So, today, I am on the 1/2 dose of the lotion-potion and I think I may have it.  She’s still sleeping more than I’m used to.  But she has had good periods of wide-awake.  She had a few sips of broth.  A few bites of ice cream.  A few sips of coffee.  And we had a couple of “conversations”.

The best part of today was when my daughter came in to say goodbye before she left for school.  She is cheering tonight, so she had the full-on cheer hair and bow working and when mom’s eyes opened and saw her she smiled and said “pretty, pretty, pretty, pretty, pretty.”  Not a bad way to start a day, if you ask me!

On a side note – today was Dora’s last day…our beloved aide.  I didn’t sob…I cried.  But I think I held it together pretty well.  She promised to keep in touch and I believe her.  She still has clients in our area and she said if I needed anything, she’d stop by.  I am certain she was sent from heaven 4 years ago..  And I’m going to miss seeing her every week.  A lot.

Hospice is Here

Mom has ‘qualified’ for hospice.  I’m so thankful because I just can’t manage her care all by myself, but I’m so sad because it means she’s declined so badly these past couple of weeks.

A case worker came out.  They asked lots of questions, spent a few minutes with mom and then offered to send the hospice team out for a visit.  I made the appointment for 10:30am.

I thought that would be my best gauge.  Mom is at her happiest in the morning.  She is easier to motivate.  She is more cooperative.  She is less confused.

But that made it harder, as well.  If they had come the night before – no brainer!  I worked for just over an hour to get her undressed and into her nightgown and managed to get her shoes and socks off.  That’s it – just shoes and socks off.  It was a battle.

But morning…

Would I be able to hear what they had to say and accept the fact that mom is not getting better?  If she was having a great morning and it had been relatively easy to get her dressed.  If she had eaten a few bites of her breakfast.  If she had expressed joy at that first sip of strong coffee.  And all of those things were true.

But she was also unable to remember the word for coffee.  Or put her own hands into the sleeves of her shirt.  Or comb her own hair.  Or stand up on her own.  She also had a lot of pain.  A lot.

The arthritis in her hands and the one knee is intense.  There is swelling.  There is heat.  There is an awful grimace when she has to move them or use them at all.  She is still stuck.

So, they came.  And they were very nice.  And so efficient.  And I was amazed at how simple hospice is (once you qualify) compared to home health and rehab and all the other myriad of things that Medicare and other insurance has a say in….too bad!

And we signed papers.  And read information.  And the nurse who specializes in late-stage Alzheimer’s care spent minutes with mom and gave me some great things to watch for and some suggestions to help her not be so uncomfortable.

The pressure ulcers were looked at and recommendations were made.  Medications were discussed.  I don’t ever have to run to the pharmacy again…they DELIVER!!!!  Are you kidding me????  And very-late (translate end-) stage things were covered.

A new hospital bed and geri-chair were ordered and deliveries scheduled.  Things started to arrive that afternoon and medications started coming in that evening.  More medicine came on Saturday along with a nurse to explain how everything works.

Mom tried so hard to be hospitable with her.  But the sentences she was saying, with a wide, beautiful smile, were impossible to understand.  It’s like she remembers the candance of a sentence, but not the words.  So, she uses random sounds in the rhythm of what she is trying to say.  Sometimes I get it, sometimes I don’t.  Most of the time she doesn’t mind.

The only downside to hospice is Dora, mom’s long, long, long-time home health aide cannot stay.  They jumped through a couple of hoops and asked and tried, but the “system” can’t make it work.  So, tomorrow, after 4 years, we have to say goodbye.  Mom won’t even notice.  I feel like someone is ripping my heart out.

It’s funny how things work out.  I started this post on Sunday morning.  It’s now Tuesday.  I’ve been working on a few words here and there for the past couple of days.  But it’s all so new.  It’s all so different.  And hope is a really hard thing to let go of.

Mom got up and walked to the bathroom yesterday.  I had to help her up, but she walked all the way there.  She doesn’t remember it, but she did it.  And that made me hopeful.  For no reason.  Alzheimer’s provides no hope.  There is no cure.  There is no way to ‘turn it around’.  There is just maintenance and decline.  That’s it.  A walk to the bathroom is just a few minutes of a good part of an otherwise bad day.

She was wiped out after that 40-step trip (mind you, it was at least 100 steps for mom – she shuffles now).  It did not lift her spirits.  She just got a whim that she needed to go TO the bathroom.  It never occurred to her that it was a big deal.  As far as she knows, she walks to the bathroom 10 time a day.  She drives a car.  She does her own grocery shopping.  She meets friends for lunch.  She works in her garden.

Alzheimer’s is terrible.  It’s awful.  It’s brutal and cruel and crushing.  But mostly for the families.  Mom has no idea.  Sometimes, she’ll realize she has no idea where she is and she gets scared.  But it’s brief and very easy to distract her back to something silly or cheerful or familiar.

But for me and the kids and my husband it’s everything.  The crying out.  The anger and frustration.  The unreasonable requests.  The anxiety.  The lifting and pulling and sanitizing.  It’s all very real.  And sad.  And hard.  Really hard.

But I’m so glad she’s home with us.  I can’t imagine her being with someone who has no hope of understanding what she is asking for.  Or what her favorite things are.  Or how she like her blanket placed on her lap.  Or how she likes her coffee.  Or who she is talking about when she calls them Laddie or Donny or Larry.

And I’m glad hospice is here.  I am certain they will do a great job with mom and make sure that she is clean and healthy as can be expected and that she won’t be uncomfortable.  It’s a new chapter, but I think we’re better off this way.

 

Five Minute Friday – Care

I have almost exactly 5 minutes…if I’m lucky.  So I hope everyone stopping by will forgive me for not linking and adding buttons, etc…but if ever there was a word I needed to write on… it is CARE.

Just to emphasize how little time I have – I started this 26 hours ago.  And managed a sentence and then life interfered and managed another sentence 8 hours later…etc…etc…

So, 25 hours later, mom is resting, my husband is off work, my daughter is working on a Halloween craft project and my son is playing on his phone…Momma Time!

GO:

Eight years ago, my mom’s second husband passed away and a series of unfortunate things happened.  We knew we had no choice but to move her out here where we lived.  It was what was best for her.  We cared about her safety and her health and her future.  No brainer!

Throughout these past few years, we changed our schedules, lives, priorities and finances to make sure she could maintain her independence and her lifestyle and as much pleasure and enjoyment as was possible for a woman in the middle of Alzheimer’s with limited financial resources.

Then pneumonia.  Then pneumonia #2.  And 3.  And a stroke – the mini version.  And A-fib complications.  And INR disaster.

Her memory declined.  Faded.  Disappeared.

And now she lives in our home.  And the experience has reinforced my belief that you do whatever needs done for those you care about.  For your family and friends.

8 days ago, mom’s Alzheimer’s decided it needed even more of her.  It needed to destroy something vital.  It needed to break that last essential connection.  And she is totally dependent.

She needs help standing.  Dressing.  Brushing her teeth.  Holding a glass of water.  The pills now have to be placed in her mouth, because she can look at them and hold them in her hand and say her version of the word “pills”, but have no idea how to lift them to her mouth and take them.  Not anymore.

She needs total care.  She is now the one thing she has dreaded her entire life.  Dependent on someone else.  She is unable to care for herself.  She is lost in this horrible disease.  She needs medication and hygiene and movement and kindness…but most of all, someone to sit with her.  Almost constantly.  So I do.

Caregiver is my role.  Whatever that means during each stage.  Giving care.  So, I go outside my comfort zone.  I go beyond what I ever dreamed possible to care for my mom.

For as long as the Lord lets her stay with us.  One day I will look back.  Read old posts.  Revisit a memory.  And I will be astounded at what I have been able to do.

There are lots of things that I thought needed to be said and settled and worked out, but God had another idea.  And that’s okay.  He is always wiser than I will ever be.  So, even though I would have preferred to have her care for me…I will care for her as long as she needs me.  Because that’s what you do for your family and friends…

Stuck

I don’t even know where to start. This week has been so awful. So sad. So confusing. And so out of the blue.  Not that I had any right to expect a warming from Alzheimer’s.

But that’s been our history.  The pattern.  The M.O.  Mom gets sick (usually pneumonia), mom declines rapidly.  Mom gets well.  Mom rebounds physically and to a small extent, mentally.  There is always a giant piece of her memory that gets lost, but her ability to function in the moment has always come back strong.  Even after a trip or two to ICU.

But not this time.  This time, no illness, no fall, no trauma, no major life change.  Just one day making her own bed, dressing herself, going to the restroom unassisted.  And the next day, not able to get out of bed.  She sat up.  She got her feet on the floor.  And that’s where she got stuck.

This weekend we’ve been up and down and really down.  She’s spent far more time in bed than out.  But she talks about getting up.  She asks to go sit in her favorite rooms and places.  She wants to join us for dinner (even though I think she thinks it’s a big dining room like at her assisted living facility).  But she hasn’t left her room.

She hasn’t been able to stand alone.  She hasn’t been to the bathroom.  She isn’t eating.  She is frightened.  And I am so worried.

This is so new and I’m not sure how to handle it.  I want to push her, but not hurt her.  I want to encourage her, but not make her feel badly because she can’t do something.   I want to make sure she is taking her medicine, but if she’s not eating…is it still okay to give her full doses?

And, I threw a major fit on Friday with the home health supervisor over an LVN that was coming to see mom…so they have been in my home and VERY attentive.  99% of the folks we have had in our home have been so good with mom.  We just got one that didn’t mesh with me, I guess.  Either way, I think they are not happy with what happened and don’t want to lose our business because of it.  And I don’t want to change either – I think of mom’s home health aide as part of our family.  I adore her PT and the PT supervisor.  I want to make it work.

So, we have a new nurse who specializes in Alzheimer’s and we got a visit from the PT supervisor and the social worker and got the ball rolling on hospice.  We have an egg crate mattress cover coming and 2 giant packs of depends and tubes of barrier cream and some resource numbers on the way.

Which is great…but what about mom.  She’s uncomfortable.  She’s in pain.  She has stopped moving her body because ‘it hurts’.  She is not eating enough to ever get stronger.  And she has lost most of her words.  Top that all off with a big dose of anxiety.

I’m still getting her up and dressed.  I think it helps.  I let her stay in bed on Saturday because I was all alone and it was too hard and I was too unsure.  I thought maybe a day in bed might ease the pain in her wrist and heal whatever else is ailing her.  NOPE!  Bad idea.

So, I get her up.  I get her dressed.  I am no longer asking her to do many things.  It’s too hard.  She can’t do them anymore.  I make her bed.  I cut her food.  I brush her teeth.  I put the denture cream on her dentures.  I tie her shoes.  Today I even had to put the glasses on her face.

Yesterday we found the beginnings of a bed sore.  I am freaking out.  I know how bad those things can get and how painful.  I do not want that for mom.  So, now I have to adjust her sitting positions and her legs and the pillows and how she lays in bed.  But the nurse confirmed that I should get her up and dressed as long as I can.  It does seem to put her in a better mood.  And it will help her not develop any more sores.

She is also favoring one shoulder, one hand, the opposite leg and leaning to one side.  The leaning is new.  The shoulder, hand, leg stuff has been off and on for years…but now it’s all at the same time.  The leaning freaks me out.  The PT thinks it’s in an effort to make all the things that are hurting hurt just a bit less by positioning herself that way.  Who knows.  There are stories all over about Alzheimer’s patients and the leaning.

The worst part of it – she is lost.  Completely lost in her mind.  She is scared.  She is sad.  She cries out continuously for her mom, her brother, me, my daddy, her mahmaw and sometimes just to God to help her.  I can be sitting right beside her and when she cries out.  It’s like she can’t see me or hear me.  She is lost somewhere in her brain and all the jumbled up memories.

No one should have to go through this.  No one.  She tries to talk and the words just don’t come.  Or they do come, but they don’t make sense.  They are strings of words that were never meant to go together in a sentence.  And I can see in her eyes that she is looking for an answer from me.  I’m just relying on instinct to answer the incomprehensible questions.  Thankfully, most of the time she smiles and seems happy.  But maybe she’s already forgotten what she was trying to ask or she’s just happy someone is with her.

And I’m so tired.  I feel physically exhausted, but I think it’s just the stress.  And I ache.  The lifting and pulling and squatting and pushing to get mom up and down and changed and in bed and onto her side is taking it’s toll on this old body.  And oh my goodness – sitting on the floor at mom’s feet so I can be close to her is a chore…when did I get so old.  I just pray that the neighbors aren’t watching me as I try and get back up once I’ve been down on the floor for too long…it’s Monty Python!  I haven’t been able to get to the pool, so I’m trying to think of this as my workouts until I can get back to swimming!

Whatever it is – if I sit down for a minute – I doze off.  And then I pace the house all night worried about mom.  I hear her calling out.  I logically know that she can’t get out of bed or over the rails, but logic seems to have no stronghold on Alzheimer’s…so I worry.

That’s it – that’s where we are.  Stuck.  For no apparent reason.  With no real plan.  And no real hope.  But no real threat of the end.  Just stuck in worry and sadness and frustration and sweat and tears.  It’s part of it.  Part of being a caregiver.  Part of the bargain.  The deal.  The trade-off for having a parent that lives to be a ‘ripe old age’ and is “otherwise healthy” were it not for the Alzheimer’s….stuck.

As always – prayers are so appreciated.

 

What the Heck Happened? Oh yeah…Alzheimer’s

It’s as if someone flipped a switch.  One day she was one way, and the next day, the whole world changed.  But that’s Alzheimer’s, I guess.

About 10 days ago we noticed that mom was staying in her room more.  She used to HATE staying in her room.  She acted as if it was some kind of punishment.  She would get dressed in the morning and get out of there as fast as she could.  And she wouldn’t go back in until it was bedtime.  So that should have been a sign.

But we didn’t see it.  We just moved our lives in there with her – homework, television, reading, snacks, craft projects…we just did them in her room instead of the living room.  That way she didn’t have to be alone.

And then she started sleeping more.  Not a lot more – she’s been dozing off several times a day for the past 2 years.  But more.  But I’ve always heard that as you get older, you sleep more…to be honest…I’ve always kind of looked forward to that!

And then on Thursday, she couldn’t stand unassisted and couldn’t dress herself.  And we can’t figure out why.  No pneumonia. No trip to the hospital.  No falls.  I have suspected that she had a UTI for the past 3 weeks, but getting a urine sample proved to be MUCH more work that it should have been.  I hope that’s not what caused this decline – I asked for a urine sample 3 weeks before we finally got one and then mom’s doctor said that one was contaminated.  I have cried and fought and had to go way outside my comfort zone and “put my foot down” and didn’t enjoy it at all.  So, I hope that wasn’t the hand that flipped the switch.

So, Friday I got her up, but never out of her room.  Saturday, we couldn’t get her out of bed.  She stayed in her nightgown and her bed all day.  But she was finally on antibiotics, so I was hopeful that she was going to ‘bounce back’ somehow.

Yesterday, her morning mood was better, so we got her up.  Got her dressed.  Put on her shoes.  Made her a chocolate chip muffin (which she ate – YAY!) for breakfast.  But she never left the chair.  She wouldn’t talk to me.  She wouldn’t let me rub her back.  She didn’t eat anymore (and I made all her favorite things).  She moaned and cried and mumbled in her sleep.  And when she did wake up, she asked for her husband or her grandmother or for things I couldn’t comprehend.

Her words are leaving her.  She forms random sentences with words that just don’t belong together.  Some of them are just words made up of syllables that I can’t figure out.

And her recall is 100% GONE.  There’s really only one thing that HAS to happen during the day.  When she wets her brief – I need to change it.  And that means she has to stand up or be lifted up briefly so I can get the soiled one off and the clean one on.  I can ask and ask and demand and cajole for hours to try and get her to help me get her up.  And she won’t.  She makes excuses.  She stalls.  She tells me how pretty my hair looks (a bold-faced lie, I might add!).  Anything she can do to avoid moving.  So we pick her up.  And she gets MAD.  No angry or upset or scared…down-right MAD.  She actually growled at me yesterday.  I growled back and that ended that!

The point is – I feel terrible when she gets mad and when her eyes fill with fear.  But we tell her.  We warn her.  We try and work with her.  But she can’t remember from one second to the next.  NOTHING.  It is all gone.  She can forget a sentence in the middle of speaking that sentence.  So we have to swoop in and pick her up and I can see her asking “Why didn’t you just ask me to get up?” in her eyes….

And here we are.

I called the home health agency and her case worker is coming today to evaluate her.  But she is even worse than she was on Friday when I spoke with her.  I am guessing she will more than qualify for hospice.  And I can’t see any point in getting her rehab.  If I can’t get her to work with me – I don’t hold out much hope for a stranger, no matter how qualified.

I don’t know how to care for a bed-ridden person.  I don’t know how much to push her.  To encourage her.  Or to let her go.  I am calling on my deepest instincts and faith and humanity to guide me.  But I am sad.  I am worried.  I can’t believe how quickly she turned this latest corner.

I know she is uncomfortable.  The more she lays still, the stiffer her muscles and joints get – so every movement is so hard for her.  I know she is confused.  She wants to “go home” more than anything – but she has no idea where that is.  I know she is frustrated.  And she gets so mad at me.  And I know she doesn’t mean it.

At this point – I just want to do whatever is best.  Whatever will make her comfortable.  Whatever will take the fear away.  Whatever that is….I just can’t believe it happened so fast.

me and mom collage

Five Minute Friday – NEW

Today is Friday.  Five Minute Friday.  It doesn’t feel like Friday.  It doesn’t feel like any day.  I’ve been in an alternate universe with mom for the past 36 hours or so and I can feel my soul screaming for ‘normal’.  And so, even though I probably should be paying bills or folding laundry or washing towels and bath mats…I’m joining in on FMF – because I need to.

Today Kate Motaung over at Heading Home has given us the word NEW as our Friday inspiration.  An inspiration to write for 5 minute flat without overthinking, overediting, stressing or worrying.  And that seems like a perfect way for me to pick up my ‘normal’ and get back at it!

NEW

I believe we may have started a NEW chapter with mom this week.  Not necessarily better NEW, but NEW.

The experts, the websites, the pamphlets and the internet talk about Alzheimer’s in respect to the “stage” you or your loved one is currently in.  It’s a great theory.  But Alzheimer’s has proven to me that it really doesn’t have to follow anyone’s rules.  So the idea that the identified stages will fall neatly within boundaries is crazy!  REALLY crazy!

My daughter did her GT project last year on Alzheimer’s.  She found it really interesting and I think it brought her a lot of compassion and understanding for her grandma.  But she was so frustrated with the info on the stages.  Because she’s been living right beside it and what my mom/her grandma is going through doesn’t quite fit in any one of the boxes.  It’s as if she’s picked and chosen from a few of the boxes to make up her own 5B6az stage (that’s what we like to call it!)

But a few days ago – we started noticing changes in mom.  Not just her memory.  Her spirit.  And these NEW changes are not welcome.  They are too sad to witness.  They are too impossible to fight.  They are the worst kind of NEW.

Mom is weary.  All the way weary.  She has lost her spunk.  Her fight.  Her will to be independent at all.  Her effort is gone.  She is happy to let the world do everything for her.

And the weirdest part of this NEW is that we would be happy to do everything for her, but we know what that ultimately means.  If we do it all, at her age and with her Alzheimer’s, she will quickly (and I mean within hours) lose her ability to do for herself.  One day without doing her walking or her exercises and she can become nearly bedridden.  It’s awful.

But screaming at her and cheering up and down for her and cajoling and encouraging and motivating and joking and clapping and praising just aren’t doing the trick.

What if we are entering a NEW phase?  No longer in 5B6az, but heading into 7…?  It’s the end of any glimpse of mom as we know her.  It’s a living death.  A prison.  A dark, scary place for all of us.  Praying for God’s hand, as always.  And Wisdom.  And Faith.  And patience and kindness and empathy and heart and serenity and a little bit of moxie to make it all work…

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