Thursday, October 31, 2013

Sometimes it's the simple things

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.

Tuesday, October 22, 2013

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.

Monday, October 21, 2013

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.

Friday, October 11, 2013

Surprise!


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!                                                        

Thursday, October 10, 2013

Another collaged portrait

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 today...me, too.

Today's project:  get off the computer and pack up CDs for the church garage sale.https://www.facebook.com/kay.cox

Wednesday, October 09, 2013

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

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...my 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 up...cleaning 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
.

Sunday, October 06, 2013

Let the battle begin...

Woo hoo!  Let the battle begin.  Hundreds of pro-lifers lined Nasa Parkway with signs this afternoon.  A great indication that Sen. Wendy Davis has them scared shitless.  Fabulous!  I can't wait to get a Wendy Davis sign in my front lawn and on my car.  People, we have just come too far to let this battle continue.  We cannot let a small few take us back to the dark ages.  Women should be given a choice!  That's it!  Plain and simple!  No, I'm not crazy about women having abortions but I'm also not crazy about women getting pregnant when they cannot or should not support the life once born.  Women will continue to get abortions somehow, someway possibly in dangerous situations and we, the taxpayers, will end up paying for their trips to emergency rooms or for their subsequent health issues.  Or we will continue to care for those children they can't support through welfare or other subsidies.  This is crazy!  GIVE WOMEN THE CHOICE THEY DESERVE!  This ain't an issue to be determined by any religious belief.  Believe whatever you want but don't impose it on others.
SUPPORT WENDY DAVIS FOR GOVERNOR!
It is our only reasonable choice!