Losing a "faculty"

It is a week of doctor appointments, check-ups or check-ins.  Hubby has had some very good days and the session with the geriatric team went well.  The new resident speaks better English than the last one which helps though I do occasionally have to repeat her questions for hubby to understand.  After a few back and forth questions and answers, she excused herself to go get her "faculty".  Geez, is hubby not the only one in the room who has lost a "faculty"?  Or where is she going to find one?  I could use a new "faculty".  We both could.
     Alas, she returned with her supervisor, a charming doc full of information that I found enlightening.  One, yes, research is coming up with a vaccine for Alzheimer's and two, researchers have found a marker in blood samples that appear to be able to predict Alz 3 years prior to symptoms but not yet approved for use.  In response to the last, I mentioned something about inheriting the predisposition.    My mother-in-law and all of her 5 siblings have had Alz or some form of dementia.  My husband's older sister (she is now deceased) and older brother suffer Alz.  The doc said that research has proved that if one's parent had Alzheimer's, one has a 50% chance of having it.  Wow!  No wonder the numbers are increasing tremendously.  He also said that once one reaches 80, regardless of the genetics, the chances go up to 40% for the general population.  Yikes, now that is real motivation to do our best to keep a healthy brain.
    I had to think if only when my mother-in-law was diagnosed, we could have had the information we have today and at least the medication to possibly slow the process down.  I feel sad that I knew so little when she was in my supervision in the nursing home.  But hopefully that experience is helping me make this a better experience for both me and my husband.
      Well, the weather has finally warmed up and guess what!  He's watering again....not the garage, thank God, just the backyard.  He can be so child like it is kinda cute.  Yesterday was a beautiful warm day and Tuesday is the afternoon I volunteer in our local library bookstore (believe me, this break is more benefit to me than the library).  So I left hubby with a snack sitting at the breakfast table going over a pile of the many piles of papers he must get rid of to get the house on the market.  When I came home, he was in the backyard looking at the crepe myrtles like he was going to trim them some more.  I walked out to greet him and saw that there was water standing all along the flower beds...a lot of water.  I said, "I wonder where this came from." and followed the swamp to a neighbor's fence.  He said, "Oh, it must have come from the neighbor's."  I had to laugh...yeah, right!  The hose was strung out across the yard but at least the water was turned off and I'm sure the plants loved it.  So here we go again...I will have to pay attention.  I think it is wonderful that on these beautiful days, he wants to be outside and contributing...I hope he can for a long time to come.

Touching poem by Anne Carson

Poem of the Day: Father's Old Blue Cardigan

BY ANNE CARSON

Now it hangs on the back of the kitchen chair   

where I always sit, as it did

on the back of the kitchen chair where he always sat.

I put it on whenever I come in,   

as he did, stamping   

the snow from his boots.

I put it on and sit in the dark.   

He would not have done this.

Coldness comes paring down from the moonbone in the sky.

His laws were a secret.

But I remember the moment at which I knew   

he was going mad inside his laws.

He was standing at the turn of the driveway when I arrived.

He had on the blue cardigan with the buttons done up all the way to the top.

Not only because it was a hot July afternoon

but the look on his face—

as a small child who has been dressed by some aunt early in the morning

for a long trip

on cold trains and windy platforms

will sit very straight at the edge of his seat   

while the shadows like long fingers

over the haystacks that sweep past   

keep shocking him   

because he is riding backwards.

Anne Carson, "Father's Old Blue Cardigan" from Men in the Off Hours. Copyright © 1991 by Anne Carson. Reprinted with the permission of Alfred A. Knopf, a division of Random House, Inc.

Care giving poster child? I don't think so.

I'm trying to think spring but it is another chilly morning here on the Gulf coast and I'm wrapped in my warm robe with socks on.  My poor azaleas are scared to bloom any more since they put out some blossoms earlier only to get zapped.  There is a lovely dove cooing outside my window telling me I should notice the sunshine at last.

This week is filled with care giving stuff and it makes me question what I'm doing.  I don't want this to take over my life completely.  Once a month I go to a support group at a local hospital which really feeds my soul and I look forward to it.  It is a small group of men and women who are caring for someone in all stages of dementia and Alz.  It is so supportive and is so helpful in putting things into perspective and yet looking forward to what is ahead.  That was yesterday morning.

Last night I went to a class called Tools for the Caregiver.  It focused on taking care of the care giver and how to stay positive in this experience.  I needed to hear that as some days are really frustrating.  But I had to laugh...one suggestion was to leave post-it notes with positive messages around the house.  I can only imagine where those might end up as hubby travels from room to room.  Above each one I would have to put another note saying "Leave the note where it is."  And that probably still wouldn't work.  But the class is good with an interesting workbook and each week we are to write out a plan of action to do something for ourselves.  Mine this week is to clear out the hall closet with my sewing stuff so I can go back to sewing some stuff.

Saturday is the Care Partners Conference at another local church.  Holy moly!  This is where I begin to question myself.  My goal is not to become the poster child for caregivers.  I don't want to spend my life talking about it, learning about it.  I want to do a good job because I love this man with all my heart but ...yeah, BUT!  

I know, this is unusual that all this is going on in one week and it will be months before the next conference BUT am I getting burned out on talking about it?  

But in the meantime I'm taking hubby out to lunch and then to Great Decisions group this afternoon to talk about Turkey's challenges.  He enjoys it, doesn't always remember it but so what!  To me, this is real care giving.  

And THEN I'm going to go to Book Lovers Club tonight and talk about The Burgess Boys by Elizabeth Strout and eat some yummy food prepared by someone else and hear the wonderful wisdom of these wise, wise women who went to hear Strout speak on Monday.  I'm going to forget about all the things at home that aren't getting done.  I'm taking care of me.

Ah...garbage and wastebaskets

What is it about garbage?  Hubby is compulsive about emptying the kitchen garbage and wastebaskets around the house.  But he won't just lift up the bag with the kitchen garbage in it...he hauls the can outside to the garbage can and piece by piece takes everything out and puts it in the garbage can including coffee grounds and any other mess that might be in it.  I've explained un til I am blue in the face that I  always keep a stack of clean bags in the bottom of the kitchen can and that we have a large supply of bags but it makes no difference.  I even try building sympathy for the garbage men but to no avail.  But if I see him reach under the sink for the garbage, I leap to my feet to tie the bag up before he hits the door.   

Ken can sleep 12 - 14 hours if I don't get him up.  But today he woke up when the phone rang at 9:30, took a shower, and dressed in the clothes he wore yesterday.  He ate breakfast, took his meds, glanced at the paper, and fussed with his papers for a while.  The next thing I knew he was back in bed sound asleep.  I work him up at 2 and asked him if he wanted to go with me to the grocery store (he loves to go anywhere but especially Starbuck's).

"Yes" and he hopped out of bed.

I assumed he was getting dressed.  Wrong!

He was back in the shower.

"You did this already today."

"Oh, okay"

He finally comes out in the same clothes again.

"Do I need a jacket?"

"I don't think so but step outside and see."

He comes back in and says he needs a jacket.

"Your jacket is on the door of your closet."

10 minutes later he comes out wearing the top to his pajamas.

"You can't go to the store in your pajama top.  Where is the shirt you had on?"

He can't find it and I look and look everywhere and can't find it.

He goes into the bathroom and comes out wearing the shirt we were looking for.

It was underneath the pajama top.  

Sheesh!!!

Meds, time are such a challenge for Alz folk

Great grandchildren have even more appeal.  Is it because we are so much older or just that we love babies?  We don't get to see much of them but so appreciate them when we can.  Hubby seems to respond beautifully to them and finds such joy.  Of course, I think he feels the same way about the granddog when she visits as she is here for a couple of days to enjoy this sunny weather in our back yard vs cooped up in the apartment where she lives.  Of course, granddog Holly would rather spend her time in one of our living room chairs.  Ah well....
Today is Valentine's Day and he has gifted me with a pedicure.  Perfect!  Wonderful and I am thrilled!  Nice treat thanks to my daughter who is so good about reminding her dad.  He has never been one to remember holidays and birthdays or give any thought to gifting.  But he did remember to give me the card this morning which is amazing.  Bless his heart!

Today my beloved has dressed himself in dirty khakis and two collared broadcloth shirts, one on top of the other but is willing to change.   I found more dirty clothes piled by the bed. Hmmm.
Later I found him in the bathroom after missing him for a long time.  Again he was trying to put together his medications in the daily container.  It is so frustrating for him but he insists on doing it.  I don't want to take away any independent activities but this one is so frustrating for him.  I offer to help but find that 3 need to be refilled after filling his day by day container.  I have composed a chart separating morning and evening meds but he has a lot of trouble with the concept that 2 of them are morning and evening.  He then said he wants a new shelf unit for the bathroom that will divide the bottles of meds into morning and evening...like this is going to solve his problem.  At last we moved on and out of the bathroom but both of us were feeling frustrated.

I went on to fix our lunch.  Soup and sandwich.  Just as I was putting his lunch on the table, he comes in saying "Would you come get me on my computer?"  "No," I said.  "Not until you eat your lunch."  He was angry and left for his office.  I ate my lunch and left for a meeting at the church.  The lunch was gone when I got back and I don't know whether he ate it or threw it away.  Getting him to eat is becoming such a challenge as he is so easily distracted.  

A few minutes ago he came out pulling a sweater over his head.  I asked if he was cold.  He said, "A little".  Later he asked "When do we leave?"  This was about 6:30.  It is these kind of conversations that make my head spin.  "Where are we going?" I ask as I had nothing on the calendar.  He thought we were going to the church.  With Alzheirmer's, conversations get all mixed up in their brains.  It must be so hard for Alz folk to keep it all straight.  He wants so much to be with it and on top of things and prepared and it gets all mixed up in his time frame.  Time for Alz folk is a total mystery and unreliable.  I must remember that and be patient.  Now to see if he will be ready tomorrow when we are due to go to a church dinner.  But now I must go see if he has clean clothes to wear.

Good grief...it is good, isn't it?

Sitting in church last Sunday I looked around and thought about how much this BAUUC community has come to mean to me and my husband.  I thought of all the years we wandered through different faiths looking for our spiritual home and then finally, wah-lah, there it was...right there under our noses.  I thought about how comfortable we find ourselves Sunday after Sunday.  And then it hit me...what will all this change  mean or could mean about this experience, what it will mean for my spouse to feel comfortable in a new congregation, what it will take for me to feel supported?  Will we find a way to contribute even with our limitations?  If we make the move out of the area perhaps to San Antonio, will there be a welcoming church community? Will it even matter? Oh my goodness, at this point I had to laugh at myself.  It occurred to me that if we died in SA, there would be no one to come to a memorial service and damn, I have a folder in the file cabinet with instructions for the party complete with music and pictures.  Okay, am I a control freak or what!  How silly! I put a file for each of us together after having my own experience at deaths of family members of trying to put it all together with no direction or little information.

We are both still going through files of papers from our various careers.  As I throw out files of workshop outlines, course syllabuses, ideas for new workshops, I accept that I am letting go of an identity...that all of this is who I was and won't be again. There is still probably a box of client files in our attic.  Since I saw a lot of children, the law says I have to keep records seven years past their age of majority.  I think it is time for those to hit the shredder.  The journals and art work are going slower...I guess my identity as a writer and artist are closer to my chest and I am still hopeful that it will continue.

 And I watch my husband going through piles of paper and realize that he is doing the same, admittedly at a much slower pace than me but I get it.  I do get it and understand at a deep sense that this is his life in front of him in those stacks, all that he got his doctorate for, his whole life focused on the space program and with each email he shreds, he is grieving and letting go.  And I have to laugh again and think at this rate we may still be here next year.

And I take comfort in knowing that he is still able to do this.  I take joy in his "Good morning!" whether it comes at 9:00 am or noon.  I take joy that each day he says "I slept so good last night."  I take joy in that he can't wait to go to the Great Decisions group at our church, that he has decided to back Hillary Clinton for presidency.  Awwh right, awwh right...to quote Matthew McConnaughey.  But arrrggghh! Change is hard.

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.