A new blog for the journey with Alzheimer's

At the advice of my writing coach to support my efforts to reach more caregivers and those who may become one, I am opening a new blog with a new title:  Pickles and Roses: A sweet and sour journey with an Alzheimer's patient.  http://picklesandroses.blogspot.com.  Please join me there if you will.  The Gypsy's Sketchbook will remain for other thoughts and art work.  Thanks for your support.

A Dear John letter but not what you might think...

Dear John, I apologize.  Yesterday I totally lost it, I did and I don't feel good about it.  There you were grilling in your back yard when this crazy woman next door let loose at her poor demented husband in the drive way.  I hope your 4 yr old son wasn't witness as well.  And I want you to know that I have seldom yelled at my husband in anger in all 56 years of marriage...however I do yell sometimes if he has forgotten to put in his hearing aids.

Okay, it seemed like a simple task for my husband to take the potted plants that had been escaping the freeze out of the garage and back to our patio.  He was insisting that it be done NOW even though I was in the midst of cleaning the refrigerator in the kitchen.  Midway through my task I went out the back door to take out a bag of trash.  He was just standing in the garage and it was obvious he didn't know where to start so I grabbed a big pot, shoved it on the dolly and ran it to the back yard.  He still didn't get it so I did it again.  Finally between us we got all the pots delivered into the sunshine.
Now the next step:  I asked him to water the newly delivered pots, he agreed so I walked back in the house.
An hour or so later of cleaning the kitchen, I realize I haven't seen him on the patio.  I go to the driveway and he is standing with the hose in the garage.  The garage floor is covered with water...water all over the floor of the garage irregardless of whatever may have been sitting on the garage floor like the bag of charcoal, the new box of kitty litter, etc.

This is when I lost it and screamed at him, " You just put water all over the f...king garage floor." in my not-so-nice fishwife voice.  Geezus!!  Of course, he was baffled as in his mind he was cleaning out the leaves that had blown in.  Know what happens to a kitty litter box when it gets wet?  I hope you don't find out.

How many times do I need to get this lesson?  ALZHEIMER'S PATIENTS  can't anticipate consequences of their actions.  Not only do they have short-term memory problems but they have difficulty looking down the road to the future.  So I apologized for yelling at him but he didn't remember that I had.  Now there is the joy of short-term memory loss.

So John, please forgive my language.  I would like to think it won't happen again but I have given up making any promises about my future behavior.

Fondly,
The Crazy Old Woman Next Door Who Lives with a Crazier Old Man

Where is my ???????

Those of you who have ever dealt with an Alzheimer's patient will understand what it is like to just get one out of the house to go somewhere.  No matter how far ahead you plan or how far ahead you tell them that they need to get ready, of course they don't remember any of it.  So it is up to us care partners to monitor the progress step by step and some days all goes well.  And then some days you grit your teeth and wonder if we will ever get in the car after his insistence on checking this and that again and again or missing something.

In our case I have learned to put out the clothes I think he should wear.  This is after a few episodes of 3 shirts with collars layered one on top of the other.  But I haven't been able to dodge the last minute "I can't find...". which usually is his wallet, his calendar, his phone or his keys.  Today it has been his wallet and then his phone.  I located both in the pockets of the pants he wore yesterday.  Thank goodness I can just call his phone to locate it but the wallet has shown up in  a variety of spots around the house...the kitchen, the utility room, his office, the bathroom, etc.  And the phone disappeared twice today reappearing the last time under a pile of newspapers on the breakfast table.  I like for him to carry his phone with him when he walks the grand dog who is visiting for a few days just in case he should get lost or fall.  He has ICE numbers in it as well as wearing a Medic Alert bracelet.  Whether he will remember that he has a phone in his pocket and call has yet to be tested.  But I can call him and sometimes on the third try he will realize that his phone is in his pocket and ringing.
But we made it to our great granddaughter's first birthday party today only a little late and he had a great time.  He enjoys watching babies and little children.  He is shy about holding babies as I think he knows he might not be able to catch them if they wiggle but he loves getting down on the floor with them.  It was a wonderful afternoon seeing him having a good time and eating cake and ice cream.  These joys make all the effort so worthwhile.  I have to remind myself of that when I'm saying for the fifth time, "We are going to Kinsey's birthday party." after he asks  where we are going.

Holidays and Facing Change

Holidays are stressful times for Alzheimer patients and their care partners and ours was no exception.  Whew!  it is with sadness and some relief that I spend the day packing and sorting Christmas decor.  Relief in a way that all the hustle and bustle is over, the visitors are gone back to their homes and hubby's back to his usual activities.  Sadness belongs here as well....sad to see family leave and missing them greatly, sadness knowing that this may be the last Christmas we have on this scale in this house .  I'm sorting out discards in the Christmas decor and have sent bags of family ornaments home with children and packing up the tree and outdoor lights and table decor to set aside for the next church garage sale.

It is getting more certain that we need to get out of this house but where to is uncertain.  Some days it feels like walking on quick sand not knowing what the next step may bring.  I just can't maintain hubby and do an even adequate job of looking after this house.  

While our son and his wife were here, we went and looked at the model of a beautiful new retirement facility beginning construction in a couple of months in our area, The Crossings in League City, a Methodist Retirement facility.  It would be perfect....begin with a small apartment in independent living, then if one of us needed assisted living, memory care or nursing care, we would just advance into another unit.  BUT, and it is a big but, it requires about $300K to just get in (you do get this back if you leave; if you die, it goes to your heirs) plus another $4K a month for the two of us and one cannot get in if already carrying an Alz diagnosis.  Geezus!  It's a great place to spend one's elder years if one can afford it. They can never kick you out of you run out of money....I guess not...they still have your $300K.  Another but:  it won't even be ready for 2 1/2 years.

So I think the alternate solution for now is to get us into an apartment that we can afford even if one of us should need extended care elsewhere.

Onto the next big BUT:  getting rid of 56 years of housekeeping, raising a family, pets, and all that goes with it is no easy task.  I have friends who have done it and know that I can but it is filled with days of decisions....keep this, toss that.  Hubby still has piles of papers, piles and piles of papers and makes very little progress in getting rid of them.  So it looks like son and I will be the culprits and gradually reduce them.  I am afraid to not go through them as there can possibly be some important documents stuck among them.  So I've set a goal of one stack a day...we will see how that goes.

I can't stop laughing...

My son and his family are here from Birmingham for a few days and joined us with my daughter and her partner for the early church service on Sunday led by Rabbi Deborah Schloss (what can I say...we are Unitarians/Universalists) who led us in some wonderful Hebrew songs and liturgy.  I am sure this was all a new experience for my grandchildren but a good one.
After the service we all gathered in the Fellowship Hall for coffee and visiting.  A couple who are members were making a real effort to welcome my son and his family.  We don't know this couple well but appreciated their warm greetings.  My husband was eager to introduce our son to the man and said, "This is my brother.  We are twins but he is 5 minutes older than me which is just great.  It made my path much easier."  The man looked at Ken and my son who just turned 50 with a strange look on his face and said. "Must have been paternal."  My son is still cracking up over this.  I don't know if the man ever realized what was going on.  Maybe he is still pondering the birth of twins 30 years apart.
This happens frequently with Alzheimer's.  The patient can get the category (in this case, a relative) but can't find the right word.  But using the wrong word can bring up a whole other set of memories and they are off and running on another track and it is up to the listener to figure out where they went.  I like to call it a game of sorts.  Any suggestions for a game title?  Hearing is believing?

Down the Rabbit Hole

Well, the Christmas tree is up, thanks to my daughter's good help but hubby hasn't participated in any of the Christmas doings.  You know when you live with someone with Alzheimer's the changes become so gradual that it is difficult at times to evaluate what is the big picture and how the disease is progressing or not progressing.  Throw in some days when the patient seems clear as a bell and it can get a little fuzzy.
     Last week held a series of doc appointments including our primary physician and the geriatric team at UTMB/Galveston.  The primary nodded as I gave a run down and refilled some prescriptions.  But the new resident, Dr. Chala, at UTMB ran him through a battery of memory tests and he pretty much blew it.  It took him a very long time to say what year it is but somehow he knew the day.  As far as remembering the 3 objects she asked him to repeat in five minutes, he had even a hard time repeating them right after she said them.  Wow, 4 months ago he answered nearly all of the questions.  So here we are.  There is no other medication, no increase in meds they said they can offer.  The doc's only suggestion was to give him coconut milk and turmeric which I'm doing.  So I guess we are just in a wait and see and watch.
     Sometimes life with Alz gets hilariously funny.  The other day he got out of bed at a decent time, got showered and dressed and then ran in to me in the kitchen just frantic.  He said he had lost his hearing aids. OMG...I got more than a little discombobulated as those suckers cost thousands and we had finally got them paid off.  I raced into the bedroom thinking he may have gone to bed with them on or laid them on the night stand.  I tore the bed apart.  Nope, nada.  On to the bathroom where he usually keeps them in a covered container.  I went over it with a fine tooth comb.  No results.  I called my daughter in tears and she offered to come look.  Just then my girlfriend who wears them phoned and went over a list of where she thought he might have left them.  Phone in hand I looked.  Nothing.  Then she said, "See if he is wearing them."  I couldn't find him anywhere in the house.  My daughter arrived and found him in the driveway going through the garbage can looking for them.  She took one look at him and said, "Now really, Dad."  The missing hearing aids were in his ears.  I wonder if he showered with them.  Who knows but oh my, I was relieved.
     He continues to read diligently the Wall St. Journal highlighting it and cut out articles.  He wants to go with me on errands but ends up sitting in the car waiting listening to NPR or reading his paper.  Sunday he went back to bed saying he didn't feel well right after we got home from church and I left him there while I went to a meeting.  He didn't answer the phone when I called to check on him so I left the meeting and came home.  He was up and in the backyard cutting the heck out of the crepe myrtles and had not eaten any of the food I had left for him in the fridge.  He complains of being tired frequently.  It has been explained to me that patients are tired, that it takes a tremendous amount of energy just trying to keep their world together in something they understand.  I can accept that.
    The next day he seemed confused when I woke him at 11 am.  He wanted to go with me to the post office and the bank but stayed in the car.  As we were driving, I watched him staring blankly out of the window with that kinda glazed look that I have seen on too many nursing home occupants.  It felt to me like he was "going down the rabbit hole" and it made me really sad.  Sad and thinking we are closer to needing some help and sooner than I anticipated.
   But today he was great.  He woke up, got dressed and wanted to know when we were going to go for batteries for his hearing aids and he has been fine nearly all day...hallelujah.  The rabbit was out of the hole, for today anyway.  And his mate is going to bed now.

Another day in paradise

I managed to seen this amazing sunset the other afternoon on one of my mini-escapes to have a cup of peppermint tea at my friend's house.  Geez...what a treat!  Things are getting a bit tense around here with the holidays approaching and granddaughter staying with us for a while.  I am finding it hard to get into the holiday spirit and then get mad at myself for being such a humbug.  Part of me wants to do it up gloriously as this may be the last Christmas in this house and the other part of me is just trying to keep up with doc appointments and getting meals on the table and the laundry done.

Hubby is not having a good day today.  I want him to have as many successes as possible so I try for little tasks around the house like taking out the garbage and the recycle.  But then this morning we spent half an hour going over the schedule for the pick ups of the above which happen on Wednesdays and Saturdays.  The wringer in the schedule is that the recycle must go to the curb on Tuesday night so as not to miss an early pickup on Wednesday morning.  Oh my, even after writing it all down, it was hard for him to get it.  So I guess we will see what happens tonight which is Tuesday.

This morning we went to JSC to renew his badge which went well.  But then he starts in about how is he going to go visit his friends in their offices.  (I'm wondering if at this stage of his illness if they really want him to visit).  I explained and explained the procedure for making it happen but he continues to be very disgruntled. 

He diligently reads the NY Times and the Wall Street Journal and cuts out articles and highlights others.  He came in my office all upset about an article discussing the increasing costs of hospitals and saying that he doesn't want to be taken to a hospital because it will just bankrupt the family....saying that we shouldn't call an ambulance because it will just cost too much and it is a scam, etc.  I tried to assure him that we have excellent coverage through Medicare and our insurance company and that so far hospital visits have not cost us anything.  He would have continued the argument had I let him.  I feel sad that he doesn't have anyone else to argue with about politics, the state of the nation and the world but sometimes he just doesn't make much sense.  The granddog is back and he so enjoys walking her and so far is not lost.  This is great for both of them.

In a few minutes I will go to the library for my volunteer job in the book store.  It is quiet, we are seldom busy and I will continue to read The Book Thief, a great story about Nazi Germany during WWII.  I will come home refreshed and ready to cook dinner for however many folk show up.
And maybe, just maybe there will be another glorious sunset to celebrate another fine day in paradise.  It really is paradise, you know, in spite of tribulations.