Friday, January 31, 2014

Change is inevitable but...

I recall years ago attending a workshop with Stephen Covey who said that the best we could do for our children is teach them to adapt to change.  He went on to point out that in this information age change is happening faster and faster.  I find that to be true on many fronts.  But it doesn't mean it is easy.  Right now it seems damn hard.
The process of clearing out years and years of stuff in our house is going slower than I had hoped.  Much slower.  If I thought it was overwhelming for me, my Alzheimer's spouse is creeping through piles and piles of papers and keeps printing more.  The shadow of the big change coming hangs over us both.

Information and brochures about retirement communities here in the Bay Area of Houston and San Antonio are arriving along with lots of phone calls from representatives marketing them all.  Many of them look inviting with tantalizing pictures of delicious food and heated swimming pools.  Of course few of them tell you what they are charging.  I'm hoping to find an independent living facility that has graduated care including a memory care unit that we can afford.  We are not wealthy but neither are we poor but it is obvious that memory care is expensive.  I had lunch at a local memory care facility which runs around $5000 a month.  Some I understand charge as much as $6100.  It seemed very nice, the patients all clean, well-dressed and it didn't smell like a nursing home.

Interestingly San Antonio has more options for retirement than Houston and we will go there in a couple of weeks to tour some of their facilities.  Our son is living there now which makes it attractive but the thought of giving up friends, family and church here is daunting.  My grief comes in waves...sometimes I can imagine the excitement of starting over in a new place and then other times not so much.  I did have an ah hah! moment the other day though.  Change is happening whether we do anything or not.  It is happening to my friends...they, too, are having to make significant changes in their lives....selling their large houses and moving closer to offspring.  And bless the Internet and Skype...we can all keep in touch.

We are fortunate to have options, one of which is to move into an apartment complex near here with the idea that at some point hubby will transfer into a memory care unit not too far away and I'll stay there.  Another is to find an independent living community with activities and amenities to keep me happy like art, exercise, excursions.
So each day is filled with decisions...what to keep, what to sell, what to throw away...which place to tour, which one to contact, who has been in this one or that one and what did they like, not like.
All this while maintaining what we have and keeping doc appointments, meals and laundry going.

And there is joy in much of it all.  Lots of support from friends and family and hubby is having some very good days.  Last night he attended a foreign policy lecture with friends at our church and had a great time.     Meanwhile, I'm getting support for keeping this blog going.  A good friend said he had no idea the illness had progressed this far and is grateful for the blog to let him know.  Others have said the same as when my husband is in casual conversation, he is great as long as it all stays in the present and demands no recall.  He enjoys being in social situations and I am grateful for that.  Life has been good this week...he got a haircut and beard trim and looks handsome and healthy and totally lovable.

Wednesday, January 22, 2014



I’m losing you slowly, day by day,
moment by moment, word by word.
The memory of what just passed, a conversation,
instructions for your cell phone,
a call from a son or daughter, a news broadcast,
plans for the afternoon-- slip beyond your grasp.
I see you reaching, stuttering, trying to find the word, the thought, 
searching for the file
somewhere in the cabinet of your brain.
The void flies across your face
leaving an emptiness in those sad blue eyes followed by a frown of frustration.
I miss your humor, the laughter
replaced now by furrows between your brows.

You depend on me to hold the facts, to bring the past to light,
to repeat the time, the person, the place so that you may once again be present. 
In a minute you will ask again.
I will answer with a sigh,
remembering with love who you once were, forgetting that you forget.

Kay L. Cox

Monday, January 20, 2014

Such a puzzle...

In my effort to reach more of the Caregiving community, I am shifting to a new blog to follow the journey through this illness.  So from now on dear followers...track me here.

It has been a beautiful day full of sunshine and almost summer like weather.  I was determined to get to the last of the winter sales today.  Life has just not permitted earlier participation.  I wanted some flannel sheets for our bed before they disappeared from the shelves.  We had received some for Christmas and just loved them and wanted more.  My daughter offered to take hubby away for coffee but he insisted on coming with me so off to the Mall we went.
We enjoyed prowling through Macy's and he was tagging along through the linens.  We were out of luck with the flannel sheets.  All gone, nada mas, but we splurged on some thick wonderful towels on sale.  He seemed to be enjoying the excursion and we had a good time.
On reaching the car I suggested lunch out on the way home and we headed to Cracker Barrel as we love their vegetables or at least I do.  Out of the clear blue on the way there hubby began to rail about the unconnected water hose in the back yard.  I assured him that when the yard man came, he would connect it again.  And then he was angry that he had appointments at Johnson Space Center and he would have to be let off at the gate.  He was really going off on it.  I assured him that if he gives me the dates, I would work to get him there.
We sat down to eat and he angrily started in again about not getting to JSC.  I just told him to stop, that I didn't want to hear anymore about it.  He did.
But what I'm struck with is how the Alz brain flips around.  What is it that triggers these thoughts to come roaring forward?  The memories are stashed in there somewhere behind a tiny little door but who or what is it that turns the door knob and opens up the door?  Is it an emotion?  An image?  A word?  It is fascinating to me and a great mystery.  This man is brilliant, kind and generous to a fault and it is like that guy is hiding in there somewhere behind his frustration.

Sunday, January 19, 2014

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.

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.

A disappointment

Yesterday I was excited about the first meeting of the El Lago Seniors at our community center.  I feel it has a lot of potential for seniors to do all kinds of things.  I got hubby out of bed in plenty of time but could tell he was having a hard time tracking what the plans for the day were...Seniors meeting from 10 to 1 with snacks, exercise and lunch and then off to my doc appointment at 1:30. 

We arrived promptly at 10:00 and others began to arrive until there must have been at least 50 in the room.  Wonderful round tables had been set up and a table of snacks against the wall with coffee.  We got our plates and sat down near one gentleman who began to tell us his story and said his wife was going to join us (she never did and he disappeared).  Other senior women joined our table and hubby got more and more disgruntled.  At last one of his NASA buddies showed up with his wife and hubby went and chatted with them for a while.  He came back and sat down and wouldn't join in anything or conversations and wore a big frown on his face.

A darling young woman introduced herself and said she would be leading us in excercises and had chairs all set up with weights.  Everyone but hubby joined in.  He sat pouting in his chair.  It was fun and an exercise class will be offered for free every Tues and Thurs at 11:00.  Then it was lunch time and I could tell he didn't want to eat.  I asked if he wanted to leave and he angrily said "Yes."  So we left.  On the way home I asked why he didn't want to stay for lunch or exercise.  He said, "Because I am so angry about not being able to get in and out of JSC without someone taking me and picking me up."  Sheeessshhh!  So I told to go ahead and be angry about it but to quit blaming me.  I took him home, fed him lunch and was grateful to leave him there while I went to the doctor.  I think we are entering a new stage of the disease and it ain't gonna be fun.  I had hoped that this might be an enjoyable event for him....evidently not.

Anticipation or the lack of...

I don't know what these crazy azaleas are thinking but they have started blooming.  What are they anticipating?  They are ahead of the game while hubby seems to be running a few steps behind.

A couple of years ago a dear friend whose husband recently died with Alzheimer's talked of her frustration with her husband's inability to anticipate, to think ahead of what current actions might have in the future, even 10 minutes down the road.  Well, she was right on with what happens with Alzheimer's.  And I forget that at times and it drives me crazy.

Yesterday we had a very frustrating morning.  Actually it started the day before when hubby bounced out of bed early around 8:30...unusual for him and walked out of the bedroom fully dressed saying "I'm ready to go."  Go where????  He had his days mixed up and we weren't going anywhere.
Back to yesterday...hubby wanted to go to a presentation at NASA in the auditorium on the JSC campus that began at 10:00.  He requested on Monday that I drive him .  This is good and appropriate planning ahead.  I had committed myself to be at a friend's house at the same time but that was fine,  manageable and I do want to support his continued involvement.  It gives him so much pleasure.

I get up and dressed and finally get him up at 8:30 leaving him to bathe and dress.  He comes out at 9:30 wearing 3 shirts, one on top of the other. He said he was cold.  I said he couldn't show up at JSC dressed like that and went in to pick out his clothes.  So he is finally dressed and starts fussing with his usual papers etc. and then says he needs new batteries for his hearing aids and wants to drive to LaPorte to get them before going to JSC.  ARGGgggh!  Okay.  Finally in the car I inform him of the time and ask whether he wants to be late to the presentation to get the batteries.  "No".  So off we go to JSC where I have to leave him at the gate to walk in as security won't let me drive him in even with his badge.  Whew!!!

Finding more meaning with Anne Lamott

Ah, from the front row of the Cathedral...Anne Lamott took my breath away.  Isn't that why we all write?  Paint?  All searching for meaning in our lives?  I think it could be said for all of us in the arts.  It is all about our search for meaning.  For me right now, I write to find some kind of meaning in this life I now have as a Care Partner.  From her book she questioned a friend about the meaning of the Newtown massacre....his answer:  "We don't know yet."  And I don't know yet either about that event, about the Typhoon in the Phillipines, about my small life as a Care Partner, mother, grandmother, great grandmother.

So what do I know?  I am learning patience in a way I never thought I could.  I am learning to find joy in the days when we laugh together, the squirrel eats from my hand, the crazy okra plant hangs on to the longest imaginable stem while putting out sprouts at the bottom, hubby's cheerful greeting every morning saying "I slept so good last night".
And I can seriously let go of  bins of gorgeous papers.  I delivered them to TAACCL yesterday to use in their fundraiser.  Gone but there is still more and I will get to it one drawer, one bin at a time and watch my life change as I find room for something new and wonderful.  And I will find new meaning in what life brings and will try my best to be present and authentic for it all.  That's all God really wants from any of us I believe and so does Anne Lamott.  And I will keep repeating this until I truly believe it.

Caring for the Care Partner

You are wondering why a picture of this book?  It just happens to be by my favorite author whom I am going to greet up close and personal this Wednesday when she arrives in Houston her usual nervous wreck to sign this wonderful book.  I hope to get more copies to give to everyone I know who struggles with life.  And who doesn't?  It life, right?  It doesn't come in neat, tidy little packages, only in moments, just moments, one at a time...sometimes they are tiny, full of joy, sometimes long hours of grief, sadness but Anne's point is that we must be authentic in all of them to find meaning in our lives.  To find meaning in our lives, we must really live into them.  It is what we have to work with so take it by the horns and wrestle and ride.  Damn, that's a big order and I'm not sure I have a saddle.

For me as a Care Partner (notice the capital letters...I deserve a title) of an spouse with Alzheimer's , it means learning to live into the moments of clarity, hold on to them as part of the life we know together.  And it also means fully accepting the feelings of frustration of my partner AND myself when expectations aren't met, communication breaks down.  It means making new priorities in my life, accepting the losses of time, place, energy and finding new ways to find joy...easier said than done.

One of my joys of retirement is the time to pursue long-held interessts with great abandon, mainly art and writing.  But now I find my time is needed in other ways so much so, that I must take a close look at what is most important.  Alzheimer's disease is sneaky.  It eats away slowly at the hours.  First for this Care Partner it was taking over the finances of the household and discovering I probably do a better job than hubby did.  Then is added instructions on how to turn on the TV or dealing with repairmen and so it goes and the clock is ticking.  Priorities, priorities it says.

And so here we are now facing a move.  It is with such mixed feelings letting go of years and years of art supplies and as a mixed media artist that means not only paint, brushes, paper and glue, the bones of collage but all the other stuff like buttons, tickets, maps, game pieces and a hugh collection of rubber stamps.  However, along with the sadness, comes a sense of relief.  I like to think I'm closing this door so that another may open.

But it is the time thing that gets a bit squeamish here.  How much time do I allow myself to do things just for me?  Go to poetry events? How much for hubby?  How much for church, community?  And what of all of that is the highest priority?  And that gets back to Anne Lamott, my first priority for the week.  I am going with a friend, I will get her to sign my book and I will come home elated having met one of my most favorite authors.  Why a favorite?  Because Anne Lamott addresses the realities of life with disconcerting honesty.  She puts out there for all of us to look at those big questions about life that can only be part of the Great Mystery.
So for all you Care Partners out there trying to find meaning in your life.  Read Stitches.  Even if you don't consider yourself a spiritual person, you can dig this.

Sometimes it is the simplest thing

The simple task of putting on a band-aid led to a real epiphany for me.  Our tuxedo cat, Slick, hates, as in really hates the cat carrier and managed to give me a good scratch on my left wrist on his way in for his trip to the vet to get said claws trimmed.  But what was interesting was the follow-up.  I got out the band-aids and asked for help from hubby in getting it on.  Bless his heart...he just couldn't figure it out and finally I managed to pull it open and get it on the wound.
Later it hit me...that I am alone.  We have had each other's backs for over 50 years  and now he can no longer help.  If I fell or became ill, there would be little that he could do to help.  I have no real back up and it is so sad as I know it is his loss as well.  I can still be there for him but he can't do much for me.  Most of our neighbors work during the day and seldom is there anyone home.
So I better stay damn healthy and upright.  It seemed like such a simple thing but it brought home what expectations I have to let go of.

Thank God/Goddess/ Fluffy, whatever for support groups.  I brought this loss up in group and realized that there were several women in the support group who live in my neighborhood and are in similar circumstances.  I made the suggestion that maybe we could form a seniors group in El Lago and immediately group members started naming seniors on there blocks that live alone.  The idea that maybe we could put some system in place where seniors could be checked on if they wanted.
The group facilitator volunteered to go to City Hall where I suggested she talk to the City Secretary.

She called yesterday that she talked with the Secretary who asked her, "Do you believe in Divine Intervention?"  Turns out the city had been talking about this for some time and jumped on the idea.  The city will send out flyers, put it in the local newsletter and follow up with phone calls.  The first meeting is Nov. 21 form 10 to 1 and the city will provide snacks, lunch and entertainment.  Holy moly!  Fabulous!

The potential is exciting.  I read an article about a small community in NY with an aging population who bonded together with an investment of around $200 to keep a resource group on retainer for plumbing, carpentry needs or rides or meals, etc which gave them a discount rate.
I can see potlucks, trips to interesting sites around Houston using the Harris Co buses for seniors.

So my loss could turn into a gain for us and the whole community.  We have a lot of seniors who are still living in the homes they built in the early days of the space program so we have a lot of gray hairs around.

Thank God for humor...

There are some funny things that happen around here with the Alz.  The other day while making our bed, I noticed something near my pillow.  I picked it up to find that it was a dollar bill that had been folded and folded into a tiny square.  I showed it to my husband and said, "Hey, I'm worth more than that!".  He replied, "Yeah, ten dollars."
I have no idea where the bill came from but there it was.

On the road with Alzheimer's

In the works for over a month was a planned visit to our friend, Sandy, in Tyler, TX.  Sandy was ready and wanting company after recovering from a broken hip and losing her husband of nearly 20 years.  The couple had been our neighbors for many years and Sandy and I went to grad school together.  So I began talking it up to hubby the week before and checking to make sure our meds were up to date, laundry done, pets arranged for, car AC fixed, etc.  We were invited to an anniversary celebration in Tyler by a couple we had known through NASA...he worked for hubby years ago and had retired to East Texas.  Hubby remembered his name and was excited about seeing him again.  Those space program threads run deep in his brain and seem to be continually present.
Because we were going to the party I checked his suitcase which he had packed to make sure he had clothes for the planned weekend events.  Oh geez...two pairs of pajamas and two dirty shirts (favorites).  Okay, I started over in the suitcase and had it all packed the night before.  Clothes for the party were on a hanger along with the clothes for him to wear on the drive up.  The departure morning arrives, I load my things in the car and wake him up and point out his clothes.  He heads for the shower and I read the paper and wait and wait and wait.  On checking, he is back fussing over the suitcase again and taking stuff out, then piling more stuff in.  I fold the wadded up shirts back in the suitcase and redirect him back to get his shoes and socks on.  Then he is on to fussing over his piles of papers on the table and making sure he has a highlighter for the newspaper he is bringing.
At last we are on the road an hour later than I had hoped but oh well.  Hubby is grumpy and obviously upset.  I ask why and he said he wanted to pack his suitcase and was confused about it.  I acknowledged his confusion and mentioned the dirty shirts.
We stop for lunch in Lufkin and call Sandy to tell her to go on to her meeting in the afternoon.  We stop at Love Point, a scenic overlook and hubby has lightened up and seems to be enjoying himself.
In Tyler at last Sandy left the door open for us and we had just arrived and unloaded the car when she got home.  She has a young dog who immediately took to Ken and made them both happy.  Sandy fixed a lovely dinner, her son and family joined us and we visited for a while, examined her magnificent garden, and went to bed at a decent hour.
The next day after a late breakfast we headed to the art community of Edom.  Hubby seemed happy to go but complained of being tired.  We reconnected with some artists I knew from way back in my pottery days and had a great lunch which he ate all.  We drove back to Tyler, full and happy.  Then we toured a magnificent old home near downtown that has been restored and maintained.  Hubby enjoyed the video about the history of the house and thanked Sandy for taking us.
Then we went to a local coffee house for a cup of java.  And here began the sundowning.  Hubby brightened up and said he remembered that Sandy's husband had brought him to tour the house and then to the same coffee house.  Well, that never happened.  Bob was not able to drive and never saw the house.  But it does make me wonder if there was an occasion somewhere in some town where hubby had had a similar experience.
     The next morning we let hubby sleep as we were planning to attend the party later.  I helped Sandy with some planning of some stuff she needs to take care of and then dressed for the party.  I woke

hubby to get showered and dressed.  I went back to check on him and there was water all over the floor of the bedroom (?) and he was fussing over his suitcase and had forgotten about the clothes laid out on the bed for him.  He asked over and over again where we were going.  By then it was 11:30 so Sandy suggested we go for brunch before heading for the afternoon event.  Hubby gets terribly confused by menus...bless his heart, he can decide on something but forgets it by the time the waitress asks for his order.  Brunch went well and off we went...again he asks where we are going.
      Our friends were renewing their wedding vows in a small church.  As we sat there, hubby asked over and over again where we were and why were we there.  BUT he did recognize his friend and couldn't wait to greet him after the service.  He seemed a bit confused when the party moved to the couple's home and began to frown and declined any food or drink.  Sandy was so understanding and realizing he had reached his limit, cut the afternoon short to head home.
       The next morning we were to leave and the whole scene was repeated around the suitcase, meds, and so.  On the way home, he commented over and over about what newspapers would be in the front yard waiting...he couldn't wait to read them.
        I know that any change in routine is a challenge for an Alzheimer's patient and he certainly was full of anxiety.  All in all he did well.  I was the frustrated one.  Just trying to get him out the door for most anything is a challenge by the time he compulsively checks and rechecks his stacks of papers on the window sill.  And answering the same questions over and over and over again in a 15 minute time period.  I think there will be a limited number of trips in our future as it is difficult for us both.  We've been home for a day now and he has been angry all day.  He is angry because he can't remember where he put some work he was doing for a book.  I think he thinks I moved it but knows better than to say that.  This disease has to be so, so frustrating for the patient...just imagine if you constantly can't remember where you put anything or can't find the right word to say what you want.   Books lose interest because if you can't read it straight through, you won't remember what you read.  And so it goes on ever turn during the day.  Hopefully one day a successful treatment or prevention will be found.


Living with Alzheimer's is always interesting and full of surprises.  In the process of clearing out and cleaning up, hubby and I came to the conclusion that it was foolish to hang on to a large collections of CDs, most of which we never listened to anymore.   The plan is to let them go and empty the wonderful cabinet they had been occupying for way too many years.  I had not used any of them since I can remember and was content to just see their interesting cases waiting in the cabinet.  So yesterday I assigned my life partner the job of going through the CDs to keep what he wanted in a new basket and put ones to part with in another box...destinations labeled so he couldn't forget.  He did a marvelous job and created a huge stack of CD cases to delete.  
Great!  Then it was my turn to pick out any that I might want to hang on to.  Whoops!  As I checked case after case, they were empty and I tossed them on the floor.  But where did the CDs go that belonged in the cases?  I found a few in the car case but where were the others?  After a diligent search, I found them all stacked in a drawer of another cabinet.  It seems when hubby played a CD, he never put it back in its case.   This must have been going on for years, not that we haven't all done this occasionally but we are talking over a hundred...more evidence that the disease may have been present long before diagnosis.           
Guess what I'll be doing today!              

Taking care of me...

I'm learning it is very important for the care partner of an Alzheimer's patient to get out into the real world on a regular basis and get together with friends.  Last night The Arts Alliance Center of Clear Lake provided that for me with another fundraiser fun time with some friends from my book club.  An evening of Vino and Van Gogh.  TAACCL provides the canvas and paint and collage material and snacks and wine and wonderful fun artist folk to help.  It was great to just sit back and play with paint...this is the 2nd portrait I've done using images from a napkin for the eyes.  This one has sea shell eyes.and tissue paper hair.  I haven't named her yet.
More good news from last night...
       #1.  I met a friend/former colleague whom I hadn't seen in years and we have a lunch date set up (another recommendation for care partners) .
       #2.  I now know where I can donate all the paper scraps and collage material (think a collection of all kinds of paper stuff for 20 years).  The teacher of these mini-workshops has been donating her stash and can use all this crap I've been saving.  Woohooo!
       #3.  I am sure that wherever we go, I will have to have a place however small to make art....whether it is art journaling or canvases, I must create to keep my sanity and health.
       #4.  Hubby with my help managed to contact a friend who picked him up last night and took him to church for dinner and discussion and he had a wonderful time and even remembers some of what went on.  He is a very happy camper, too.

Today's project:  get off the computer and pack up CDs for the church garage sale.

Lonely but never alone...the story of an Alzheimer's care giver

It's early..around 5:30 am..early for this slug-a-bed.  The house is quiet except for a few furry hungry feline faces wandering around my ankles.  And it is cool enough that I'm wearing a sweater.  I remember my dearest Aunt Katrina wrapped in sweaters as she grew old.  And now it's me vacillating between burning up and feeling chilly.
It's daunting and overwhelming, this task of facing the reality of where I am in life's seasons.  No one tells you early in life to be prepared for losses.  You know at some level that some near and dear to you will fade away, that your parents will transition but the gradual losses can be just as big.  My best friend, spouse, lover, partner of 55 years is no longer the companion I'd grown accustomed to as his memory and reasoning is more and more confused.  There is so much loss with Alzheimer's.
We have both lost some of our independence.  The big one for him is his independent mobility when his car keys were taken away.  My loss is in time is fixing his meals, driving him places, finding his missing date book, explaining once again how to use the phone, the remote to the TV.  My independence has declined as he wants to go with me on errands, to shop.  At times I feel like I'm drowning in "togetherness".  I'm lonely but never alone.
 And there are household tasks which each of us have had to give chores like mopping, scrubbing a tub, changing a light bulb in the ceiling.  I love the ad on TV as the husband watches his elderly mate climbing a ladder to dust a high shelf.
The thing I miss the most are the long conversations about books, about relationships, about all kinds of things.  But a bigger loss is in the works.  We need to sell our house.  It is too big for us to care for anymore and I must plan ahead for what is to come with hubby's illness.  Twenty years of crap to get rid of.  Daunting and overwhelming and very sad.  I will be giving up my studio full of art supplies and that potential of canvases and collages that might have been.  The bedrooms and closets and kitchen are easy but letting go of special inks, brushes, paints, print-making tools, art books, exotic papers, glues, rubber stamps, ribbons, tapes, pencils, pastels and on and on is just so hard.  They all have been such a big part of my life for so long, my best friend and lover.  Of course, I will hang on to a small amount of paint and paper and glue but the rest has to go.
What to do with all those journals I created for the last 40 years...the stories of my life that I was going to use as poetry prompts?What to do with all the art work I've created?  Canvases and drawings in closets and flat files?  Sometimes I think it would be much easier to just walk away with a few clothes in a suitcase.  Fly to San Miguel de Allende, Albuquerque, Asheville and never look back?  Talk about a clean start.  But back to reality, it is all about selling this house ASAP and I'm gonna need some help in finding the joy in this adventure

Support groups and paint

Support groups are great...thank goodness I have one...just wish it met more often than once a month.  It is so affirming to know I'm not alone in this care taking.  Hubby has been complaining of being really tired and not wanting to do anything, go any where.  He just wants to sleep all the time.  Since his brother had complained of being tired which turned into a severe heart problem, I was concerned and still am.  But at support group I learned this is typical of the disease.  I will continue to keep a lookout for other symptoms.  But today he seems fine, got up early, has been working on his computer and has a healthy appetite.  He has even been cooperative about cleaning the bathroom which has been a big help as it is hard for me to get down on my knees to do parts of the floor.

Daughter and I are painting the small is a what I hope is a lovely green but until we get the bright pink covered up, it is really hard to tell.  Yikes.  I'm in the mood to paint all the bedrooms and the front bathroom all different heck with the all neutral cream color all over the house.  Bring on the color.  YES!

Alzheimer's and the car keys

Alzheimer's and the car keys

More brain changes
Cross section of healthy and Azlheimer's brainThis entry will surely bore many of you but I am blogging all this to document the progress of the disease for both of us in hopes that someday I may put it all together to help someone else who is struggling as a patient or a caregiver.

  Wow, it has been an interesting.  Hubby got very agitated and upset last night.  Accused me of "shang-hai-ing" his car keys.  He is furious once again about it and questioning who said he can't drive, it doesn't say anything on his license that he can't drive and who told me that he couldn't.  He still isn't speaking this morning which is interesting that he remembers to be mad.  Telling him that three docs have said he shouldn't drive and that if anything happened while he was driving, regardless of whose fault it would be, the insurance wouldn't pay because of all the medications he is on for Alz.  He is blaming it all on me, of course.

So I'm just trying to figure out what triggered all this.  To begin with, Taylor is staying with us and she drives what was essentially his van sometimes.  He has the idea that she is going to take it and use it for a down payment on a car....(not a bad idea in my book but she has never mentioned it...she is embarassed to drive it to school with all its dents, etc.).  He must believe as long as the van shows up in our driveway, he will still have access to it.
Secondly, the whole scene yesterday at JSC when I asked about driving him in and picking him up as he no longer drives, must have thrown a kink into his works about not being able to drive onto the JSC campus by himself.
Thirdly, we started a class at our church last night that meets on Wednesday nights.  He seemed to enjoy it but at the end of the class, I asked if he wanted to attend next week.  He said "yes" and as I will be unable to attend, I asked a friend in the class who lives in our neighborhood if he would mind picking him up.  George agreed, no problem.  But again, this being unable to do it himself remains a terrible loss to him.  I understand completely and will probably fight it when my keys are taken away.  Right now I'm just grateful that one of us can drive.