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

I'm NOT SURE WHY THIS POST DOESN'T SHOW UP IN THE ARCHIVES SO HERE GOES:

Tuesday, January 14, 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.

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

Whoa....where did that come from?

Good heavens!  Where did that come from?  Am I nuts?  Is this what grief looks like?  I'm sitting watching some benign show on TV and all of a sudden break out into racking sobs...deep, heavy body shaking racking sobs for several minutes.  I finally get a grip, grab a tissue and then here they come again.  What the hell?  Where did that come from?  For the life of me I can't figure out what triggered this.  The whole episode was over in about fifteen minutes and then it was gone.  I felt a sense of relief when it was all over.  January 22?  Is that an anniversary of some event I can't recall?  Last year on that date I was still in rehab so who knows.  Is this the way grief works?  Wow!!!

The rest of the trip to San Antonio...

For a while I was alone at Gate 14 with a couple of exceptions.  Finally another elderly woman was wheeled up beside me at the gate.  She was headed to San Antonio but was most distressed because she had lost her cell phone somewhere and wanted to know if there were any old fashioned pay phones anywhere in the airport.  Beats me!  When did I last see a pay phone anywhere?  She needed to be able to call her caregiver who was waiting in the cell phone parking lat at the San Antonio airport for her arrival.  I told her she was welcome to use my phone but she couldn’t remember the number.  We chatted a bit as all the seats around us began to fill and about six families with small children and babies gathered for the pre-boarding to Oklahoma City.  And that doesn’t count the three other wheel chair occupants that had gotten in line.  My next chair neighbor had a metal walker hanging on the side of her chair and she got up to search for a phone asking me to make sure that no one took her wheel chair.  So now I’m a wheelchair monitor who is beginning to get really hungry and wants to pee.  The pre-boards go down followed by columns A and B.  This time a good looking pilot comes and offers to wheel me down.  I told him only if he were going to Cabo and buying the drinks.  “I’m not interested in Oklahoma City.”  My next chair neighbor returns and seems a little less distraught.  The surrounding seats are empty again, it’s an hour til my flight and the gate checker person has gone…a good time to sneak off to the restroom leaving my unwheeled wheelchair by the gate in hopes that it will still be there when I get back.  My next chair buddy was gone again.  I made it to the restroom and even risked a trip to the Starbuck’s kiosk for a skinny vanilla latte and a chocolate croissant.  Geezus, but that was the best coffee and croissant ever.  No gate keeper even knew I had escaped on able and willing legs.  And my chair was still there.  My neighbor returned and even offered to throw away my trash on her next trip away from the gate with her walker as long as I saved her chair.

Finally at 2:05 we began boarding for the flight to San Antonio.  I was gratefully rolled down, assisted into the plane and seated.  A completely full flight as I think they all are these days and we were off.  Oh thank God!  Another adventure coming to a close.  Life is indeed a cosmic joke.

The new story....

So now the story is about a recovering caregiver and what to do with one's life post care-giving.

The birthday party went off without a hitch or if there was one, I didn't notice.  Sister-in-law Sue and I greeted friends and relatives at my son's beautiful home.  My daughter-in-law Karen had done a great job of arranging for some great barbecue and a gorgeous birthday cake.  It could only have been better if Ken had been there and I think he was in spirit.  My daughters and granddaughter came from Conroe and friends and family came from all over.  My crazy Artist Way sisters came with pink pussy hats, of course.  I felt honored and celebrated beyond my wildest dreams.  But oh so tired!

Before the party I went back to Watercrest to make new plans.  By now I had an idea of what I could afford and needed a one bedroom apartment.  I located a large one on the top floor with a view and a storage room right down the hall and parking nearby.  Then it was  back to Houston with my in-laws.  We had hoped to get a tour in of Watercrest in San Antonio before I left but no one was available to do it.  Back in Houston I fell into bed and slept for a couple of days.  Marylynne of Comfort Moves came back to meet with me and go over the new floor plan.  It was clear there would be more downsizing!  It was all so overwhelming!  Hard to know where to begin.

As my daughter and I went through Ken's papers we discovered that somehow he had saved all the right stuff, the important papers.  Amazing that he condensed them into one box but he did.  Then it was clearing out more stuff.  The hardest was Ken's closet.  I still miss his smell.  I hated letting go of most of his clothes but at our son's request, saved a few favorites for him.  Out went some furniture, some went on the truck to go to the condo in Austin where my granddaughter will live while at UT, the rest to Watercrest at the Dominion, 10 minutes from my son's house.  I left Comfort Moves in charge and left for San Antonio.  The movers came on the 29th of March, the unpackers the following days and I finally slept in my own bed in my new place on the 31rst of March.

How does one say goodbye?

Obviously the event is a game changer.
First agenda:  Postpone the move!  A call to Watercrest and Comfort Moves takes care of that.
2. Thank God son Chris is staying the week and we make plans for the memorial service at Bay Area Unitarian/Universalist Church and set up a meeting with Bruce Beisner, our minister.  Both of us had set up for our bodies to be donated to UTMB which turned out to be a wonderful service.  They picked up his body at the hospital, will cremate it when done and Chris asked that the ashes be returned to him.  So no casket, etc to deal with which makes planning so much easier.  The service is planned for Saturday March 4 at 2:00 pm.  I asked Tom Diegelman to speak about Ken's career at NASA and he agreed and did a wonderful job.  Chris worked hard on creating a eulogy and did an excellent picture of his dad.  I sent by email word of He-Who's passing to the NASA Alumnae League and put memorial info on Facebook.
I thought I was doing pretty well but Wednesday night about midnight I woke Chris up because my heart was racing again.  Damn!  He called 911 and the EMTs came.  They asked if I wanted to go to the hospital and with one look at Chris, I agreed.  He followed in his car and off we went to St. Luke's ER.  After an EKG and a test on my lungs, the doc gave me a Valium which made me pretty loopy but slowed my heart down.  Sinus tachycardia again!  Finally I was sent home with a prescription for Xanax.  Geez...let's just add a little more drama to the week.
The whole week was a blur but at last it was Saturday.  We borrowed a wheel chair for me to use as between the heart stuff and the recent hip surgery I wasn't steady on my feet.  Embarassing but I did it.  The service was just beautiful and the church packed.  So many people came to tell me how much they cared for Ken, the kind things that he had done for them.  He was a humble kind soul and accomplished so much.  Tom talked about the fact that Ken's program design was what brought the Apollo 13 crew back home safely saving the lives of the crew. Astronaut Fred Haise was at the service.  My unsung hero!  And Chris brought forth the tender caring Dad who loved his kids more than anything.  Bruce included a couple of my poems in the service, one about Alzheimers and one on grief.
It all went way too fast.
The church provided a reception and I was in such a fog by then, I barely remember much about it other than an all too brief greeting with my cousins who came from Dallas and Georgetown.  I was astonished they made the trip and wished we had more time together.
And then it was all over and the family took me home.  Chris had to be exhausted.  He had done so much the previous week contacting the insurance company, the Office of Personnel Management, Fidelity, etc.  The decision was made to go ahead with the big birthday party the following weekend and I packed and went home with Chris to San Antonio where I slept for the first three days and rested.

Thank God for help!

Thank God our daughters came to help go through the kitchen and clean out the pantry.  Anything open, we pitched.  I'm just not sure how much room I will have in the new kitchen.  At least I will have a washer and dryer and a full size refrigerator.
He-Who is beginning to be anxious and asks over and over again when we are leaving.  I'm trying to keep things as normal as possible but not feeling up to snuff...still achy and congested.

In the meantime our daughter-in-law and son are going full steam ahead with birthday party plans at their house.  The invitations are out and lots of friends and family have said they plan to come.  The grandkids are planning to be there...first day of spring break.  The last time we had all the Cox family together was for the twins 85th birthday last year.
I just have to get well...not sleeping well and just can't seem to get my snap back.

Hard earned lessons as a caregiver....

AT this point this proud independent now dependent woman learned to ask for help and accept help when offered.  I am just too ill to do it all .  By now He-Who needs help to turn the TV on and change channels.  I had already put labels on the TV remote and the telephone to distinguish them apart.  On the table under the TV was taped a list of TV channels and their numbers but he has a hard time manipulating the remote.
Thank goodness our Brookdale independent retirement community offers the kind of support I need.  For a price, grant you, but worth it and available.  I hired someone to do our laundry....$11 a load and worth every penny.  He-Who has a laundry basket in his closet but never remembers to put his dirty clothes in it.  When taking off his clothes, he just hangs them back up so I have to go through every few days and try to figure out what he has worn.  He would wear the same thing every day if I don't suggest something different.  But with this help I just have to get the dirty clothes and sheets together..no more limping to laundry room down the hall.
     Amazon Prime is my new best friend.  Since I can't drive, I order lots of stuff online and it is here in a couple of days.  I can order laundry detergent as well as books.  I ordered some new underwear for He-Who as he is beginning to occasionally soil his underwear.  I don't know if it is the medication he is on or he just isn't sensitive to the signs he needs to go or just isn't able to wipe well.  Guess I better check with the doc on this.
     The best help I have discovered from my friend, Rowan, is an apt called Shipt which delivers groceries from HEB, our local store, for a small charge.  The website shows pictures of everything the store offers and details of size and price.  Click on the picture, name the quantity and the time you want your delivery.  My first delivery was by a delightful young woman who called as she was shopping to let me the store didn't have an item and asked if I would like a substitute.  They don't deliver alcohol, darn it, but her pick of the produce was perfect.  I will definitely use this service again and tipped her well.
The only drawback is that He-Who and I miss trolling the aisles of HEB.  With short-term memory and problems with naming and word recall, it is pointless to ask him what he wants ahead of time but he always enjoys picking out cookies, crackers and beer.  Alcohol isn't supposed to be good for Alzheimers patients but he so enjoys a bottle in the evening.  I say "What the hell? He's 85 years old and has so few pleasures."

The tapestry begins to shred

Well, it certainly has been a while, hasn't it!  So I must start back in January when life's tapestry began to shred with threads flying everywhere and as hard as I tried, I couldn't weave them back into the lovely pattern they had been.
Threads began flying back in September when my right hip became so sore and painful that I could no longer drive or walk very far.  No longer could I take He-Who-Sleeps-Alot by the hand for a walk around the community or a trip back to Clear Lake.  My children didn't want me to drive for fear I wouldn't be able to lift my right foot quickly enough.  So there went our mobility.
I went through a series of doctor appointments and shots in my back and hip and a couple of trips to the ER with sinus tachycardia and still the hip hurt and I continued to tell docs it is my HIP, not my back, that has a problem.
Meanwhile He-Who monitored the election with MSNBC going 24-7 and copies of the NY Times and the Wall St. Journal.  But with time I noticed that less and less of the newspaper was being highlighted or even read.
Finally I got a referral to a hip doctor in late December and scheduled a total replacement January 12. Of course with this plan, a plan for He-Who's care had to be put in place.  Our son came from San Antonio and took over his dad while my sister-in-law and my daughter took care of me in the hospital.  I went into a rehab hospital for a couple of weeks determined to be the poster child of hip replacement while He-Who went to his brother's home under their care.  I did the best I could to micromanage it all by phone and they were very good to bring He-Who to see me and to talk to me on the phone.
When the caregiver goes down, life becomes chaotic and disorienting for the Alzheimer's patient which presents a bigger challenge for those in charge of their care.
I was determined to go home after two weeks in rehab instead of the recommended three as I felt I needed to get home and try to get our lives as back to normal as possible whatever that had been.
AND we were still hoping to move to San Antonio SOON.

Blessing in disguise

Well God Bless!  The dumpster diving has turned into a blessing.  Now that He-Who-Sleeps-Alot has found the dumpster, we are making good use of him.  Holidays frequently occur on Mondays, our regular garbage pick up day, so on holidays we get no pick up.  He-Who does a great job now on those days of delivering bags to the dumpster, not just for us but now for neighbors.  It is so great to seem him accomplishing these tasks and he loves the walk.  AND he doesn't bring any of it back home, thank goodness.
Ya just never know, do ya?  Strange incidents can turn into blessings!
I'm reading 10,000 joys and 10,000 sorrows , a book about a caregiver and her spouse with Alz.  Really good...a weird kind of affirming to read that her spouse confuses the fridge and the freezer as well..  A couple of weeks ago I found an exploded beer in the freezer...what a mess!

My task this week is to keep throwing out stuff and filing papers.  Where does all this paper come from?  Mostly insurance and Medicare and why do I feel I need to keep it?  For how long?

Oh my..I didn't see this coming

     Yesterday a dear friend of many years came to visit us.  She now lives in Tyler so we don't get to see each other as often as I would like.  She and her now deceased husband lived five doors down from us for nearly 18 years and she and I went to grad school together many years ago.  As neighbors and friends we got together as couple and visited back and forth and have known each others children and grandchildren.  Good, good friends!
     He-Who was doing his sweeping thing on the porch when she arrived.  I had told him to expect her and she greeted him warmly with a hug and they chatted for a few minutes.  She came into the apartment and we sat down to chat.  In a few minutes He-Who came in, said hello, put away his red broom and went into the bedroom and went to sleep.  She was gone when he woke up and I mentioned how great it was to have the visit.  He had no idea what I was talking about.  He didn't recognize her and just thought she was a friendly resident.  New marker:  some long-term memory is failing.  I was shocked!  Maybe I shouldn't be but I was.  She was almost family a long time and I just didn't see this coming.  She didn't realize he didn't know her until later when I told her.  Wow!  At least he is still the same ol' sweet friendly guy in so many ways.
     Oh and by the way,  the flatware I ordered on Black Wednesday over the Internet from Macy's is really ugly and now I have to recruit my daughter to help carry this heavy box sitting in our living room back to the store where hopefully I will find something better.  Oh well, win a few, lose a few and we can still manage with the old stuff.

Black Wednesday

No Black Friday for me but I did buy us a Christmas present on the Wednesday before.  When entertaining the last couple of weeks, I became aware that after 58 years of use the set of stainless steel flatware that was a wedding present is missing quite a few essentials...mostly spoons.  Now that the grandchildren are grown I don't have to worry that they are hauling them away to play in the dirt.  I figure 58 years is pretty good mileage and it wouldn't be extravagant to indulge in a whole new set of flatware at the pre-Black Friday big discount...Merry Christmas to us!  Now to make sure that He-Who doesn't throw a piece away.

Yesterday He-Who proudly announced he was headed for the dumpster again holding up 4 plastic wrappers with old newspapers in them.  "Great!" I said and off he went.  He returned 30 minutes later with the empty wrappers.  "So what did you do with the contents?" I asked.  "Oh, I put them in the dumpster."
"So why did you bring back the plastic wrappers?"  "Because I will need them."  Well, guess there's no point continuing this conversation as he added his handful of plastic to the pile in the corner of the living room.  It wouldn't do any good to explain that our newspapers arrive in a plastic wrapper every day giving us an endless supply.  I am concerned that he will be reprimanded for not having the newspaper bagged when thrown in the dumpster but will cross that bridge if it happens.  Harmless enough and he's a happy camper accomplishing his mission.
He's not reading the three papers we take as much anymore but spends lots of time rolling sections back up so they will go back into the wrappers they come in.  Seems like an expensive exercise so I may eliminate one of the papers but which one?  The NY Times or the Wall Street Journal?  I don't think he would miss one but who knows???

Rhonda Rollator

Meet Rhonda the Rollator whom I thought was only going to make a short visit but she is still here and working hard some days.  I'm still having a hard time accepting the fact that I need to use one of these suckers but I am better.  I can walk around the apartment all by myself.  Woohoo!Now the challenge is to get my energy back.  Whew!  I haven't driven our car but twice in the last two months and just across the street to pick up prescriptions.  Geezus!!!

New insights into He-Who-Sleeps-Alot....he wants so much to be helpful but when it came to placing Rhonda in the back of the car, he just couldn't figure out the orientation needed.  Spacial perception is all mixed up which makes me wonder what else must be confusing for him.  I know when walking at night, anything painted dark on the cement appears to be a hole to him and to be avoided.  But what else I wonder and how do I anticipate the problem?

Now that the election is over our challenge is how to occupy He-Who.  Again I am so grateful that we live in this community as there is support available.  Home Health comes 3 or 4 days a week to work with He-Who on memory and physical therapy.  He gets on a stationery bike and does balance and stretching exercises and enjoys it all.  He's not crazy about the memory exercises as it really pushes him but the therapist is delightful so he goes along.  I just wish we had started this program a whole lot sooner but there have been some changes in support therapies here at Brookdale which make it now possible.

Last week I was vegging out on a heating pad while He-Who announced he was going for a walk.  "Wonderful" I said.  About 40 minutes later he marches in grinning like a Cheshire Cat and says, "Look what I found!" and holds up a black plastic bag.  "I found it just sitting there full of stuff."  OMG I'm thinking.  "Where?"  "Over there by that big thing".  ????  With more questions I figured out he had been to the dumpster.  OMG, now he is dumpster diving.  "So what did you do with what was in it?"  "Oh, I put it in the thing."  Never a dull moment.  I am surprised he found his way to the dumpster but we had made a trip the week before.  We don't get garbage pickup on the weekend and as we were having company, we made the trip.  I can see some interesting items appearing on the horizon.

I cancelled our Thanksgiving trip to San Antonio.  I just don't want to miss my PT sessions and risk any set backs to my progress by driving there.  I am bummed out about missing a Watercrest event and being with our son and his in-laws but we will have a lovely dinner with our daughters here.
So much to be thankful for this year.  Our move to San Antonio has been moved out again...now the end of January before our apartment will be ready. Hey, what a blessing is that!  I have more time for recovery with the same docs and we don't have to go nuts during the holidays.  We have a roof over our heads, food to eat, great family and friends...so many blessings.

Happy Thanksgiving everyone!

A sexy pirate and a fat Wonder Woman

Looking at this, one might wonder which one of us is demented or maybe both!  Would you believe we won first prize for best costumes!  Ya gotta wonder what the competition was!  But Halloween was fun and He-Who-Sleeps-Alot had a great time and we were among the last to leave when the music stopped.
     Our lives continue to be interesting and definitely requires a sense of humor.  I am still in great pain in my knee and hip, on a walker, but hopeful the next trip to the doc will make it all better.  In the meantime He-Who is trying hard to help out which can get very interesting and at times hilarious.  I hired a helper to do the laundry and was busy when she brought the laundry cart back.  Later I looked in the cart to begin to put things away and it was almost empty with just some folded sheets in the bottom.  What?  I voiced my concern and He-Who cheerfully said "Oh, I put the stuff away except for that."  I complimented him on his industry.  Later I found pillowcases in his underwear drawer, my underwear in his sock drawer and his underwear and socks on the floor of his closet.  :)  Bless his heart!!!
     Good news!  I got him signed up for home health physical and memory therapy.  The intake nurse came this week and spent two hours giving the most thorough interview we have had in years!  And He-Who really liked her!  So therapy begins this coming week.  Yay!
     Our daughter has been a saint to drive in and take us to doctors and get us groceries and my sister-in-law is just an angel covering my early morning doc appointments and including us in other events.  He-Who's twin brother has been picking him up and taking him to a class on politics by Richard Murray at the Women's Institute every Tuesday evening.  He-Who so enjoys this and is excited to go.  Of course, he doesn't remember any of the lecture or dialogue but he has a great time and always comes home talking about how great it was.

And I just thought it was slow going....

Oh my, suddenly I find myself among the disabled, hopefully temporarily but not a good place for a caregiver to be.  Some how in our adventures in San Antonio my back decided to give me fits, mostly in hip and leg.  Not that we didn't have a great time in SA but driving home was difficult.  I could hardly drag myself out from behind the wheel.  So life has been interesting since then...wrestling with the Baylor system of doctors, an MRI which shows ruptured discs in lumbar region and a slight fracture.  So now we have welcomed Folly the Rolly (Rollator to the uninitiated) to our family and I have joined the line up of others on walkers around here which is incredibly humiliating for someone who has been as active as I am.  Geezus!  Of course the next project is to paint Folly...right now she is just adorned with ribbons.

So you can imagine how He-Who-Sleeps-Alot is dealing with this...very confusing at times and frustrating.  I spend a lot of time on ice and heat and not doing much else.  He has such a terrible time with any kind of directions.  I asked him to get an ice pack out of the bottom shelf  of the door of the freezer.  He found the freezer but couldn't grasp the whole idea of the door.  I'm in agony from the pain and he is desperate to help, God love 'im.  But finally we worked it out.

But here is the good news.  I found a series on doctor interviews on a website called Awakening Alzheimer's, excellent and interesting and some supplements were suggested. The website isn't selling them but I ordered them from Vitacost and began giving them to He-Who.  By damn, I think I see a difference!  I think the combination of my needs now and the supplements have lit some kind of fire in him.  He actually volunteered to take a walk by himself the other day and he is trying so hard to help me around the apartment.

And I swear but the Goddess does step in to look after us.  I was so concerned about the potential move the end of November not knowing exactly how this back thing is going to turn out.  I don't want to have to change doctors mid-stream or start all over again with a new team in San Antonio.  Well, folks, Watercrest at the Dominion now says our apartment won't be ready until the first of the year, January!  That certainly takes the pressure off trying to accomplish that event during the holidays.  The whole family is going "whew"!  I can't get upset...we have a roof over our heads and food to eat...lots better off than much of the world, back pain or no back pain.
Daughter has been great driving in to take me to the doctor and get groceries, meds, etc.  I have hired someone to come in and do the laundry once a week.
I have a doc appointment Monday to prepare to get shots in my back...send good thoughts that they work.  I missed Book Club but am reading the book, House Rules by Jodi Picoult, excellent. Life is good and I am grateful for all the good in the world.  Now to just get Hillary elected...Dump the Trump, he is a disaster.

Just know that when the caregiver goes down, everything gets even slower, much slower.

It's gotta be cooler in Montana....

My gypsy soul is having a melt down and I'm trying to revive it.  And why have my recent blogs been kinda sad.  Well, damn it!  This disease is sad, no cure, no remission, just progression and isolation.
     My dear Artist Way sisters are tempting me with a trip to Montana to visit an AW sister.  The thought of mountains and cool air are so tempting as it has been in the 100s here with high humidity.  I mentioned the idea of my going to Bozeman for a few days to He-Who-Sleeps-Alot and he had a fit.  He wants to go somewhere and the idea of my going on "another" all girl trip makes him mad.  And sadder yet I have come to the realization that it is more than I can manage to go through airports with him without some help.  I have a hard enough time getting me through with knee replacements and our last experiences together have been frustrating.  On one trip he carried someone else's bag off the plane...thank God they caught up with us.  On another he couldn't figure out what to do at security and then couldn't find his bag on the belt.  I can't imagine trying to change planes now with him.  All of it very confusing for him.
     I'm not sure I can drive long distances anymore.  San Antonio is just far enough but could I make it to NM?  That's a possibility.  I know He-Who gets so bored and what will he do when the campaign is over?  Is there something called the summer doldrums?  I think so.
    I worry that he doesn't get any exercise.  Yesterday in the pool I tried to get him to just walk back and forth with me but he mostly just sits or stands around picking leaves out of the pool.  I'm sure that is comforting behavior for him as that is what he used to do with our pool in Nassau Bay but I just wish I could get him moving along.
     And I wish a fairy godmother would come along and whisk us both back to San Miguel.  Wheeeee!

Caregiver's Lament

Caregiver’s Lament

The bracelet labels me “Caregiver,”

gives me an ID number

labels me as one who looks after someone with memory loss.

But there are some days now

when I don’t want to “care,”

don’t want to answer the same question for the tenth time,

days when I try to find the courage

to say no to another trip to Starbuck’s,

days when I don’t want to explain which is the phone,

which is the TV remote,

days when I tired of coaxing him to eat,

to take his pills, to brush his teeth,

days when I have ask him not to wear his pajama top to church

even though he calls it a shirt,

days when I’m tired of being angry and frustrated

when I am lonely and miss the brilliant, funny man I knew.

There are days when I want to take off that cloak, that bracelet

and travel to an exotic landscape if only in my mind,

when I want someone to ask me if I would like to go for ice cream

or would I like to watch a movie?

when I wish someone else would take out the trash,

days when it would just be nice to be remembered

days when I wish someone would take care of me.

Communion

We don't often get to church and I so miss our wonderful congregation at the Bay Area Unitarian/Universalist in Clear Lake but I'm finding there are many other opportunities to practice our faith.  One has come up recently with my neighbor.  I will call her Beverly, at least 10 years younger than me and declining rapidly with dementia.  Her sister, Alice, is here for the second time in the last 9 months to look after her. Beverly has been very reclusive since we met her two years ago, seldom eating with others in the dining room and never attending any activities.   The few times I have seen her she wore a "deer-in-the headlights" look.  Alice lives in North Carolina, a retired nurse with an adult son who is autistic.  She has been here now for several weeks getting her sister through a gauntlet of tests.  Alice wants to move Beverly to NC and has located a pleasant assisted living facility not far from Alice's home but Beverly is resistant, of course.  At this point Alice is pulling her hair out trying to deal with it all and has been shut in her sister's apartment helping her dress, etc.
     I ran into Alice taking a walk for a break and invited her to call or come over when she needed a glass of wine or a hug.  And she called!  I had just made a batch of brownies and invited them both over for wine and brownies.  Beverly doesn't drink alcohol any more which is a good thing but was happy with a cold Fresca.  And Alice talked and talked and He-Who so enjoyed the visit.  I did what I could to support Alice and the move going through all the reasons why we are moving to San Antonio.  Beverly sat listening but said little.  Alice calls her by the nickname of "Bev" and when I hugged her goodby, I asked if I, too, could call her Bev.  She smiled and said, "Of course, you are family now."  Mission accomplished!!!
      On reflection I thought we had just had communion shared with love and compassion.  And this is what it is all about.  And it was so good for He-Who to feel that he was helping and contributing.  And he showed them the new book with the dedication to him.
     Later I ran into Alice again and she thanked us once more and said that was the only social event she has had here.  Damn, this disease can be and is so isolating for the victim and the caregiver.

My sweet, always gallant husband...

Alzheimer's may have taken his short term memory but he is still the gallant man who loves to help.  He is the one who charges ahead to open doors for those with walkers or wheel chairs or move a chair in the dining room to assist.
Once again more dining room humor:  A dear 95 yr old woman joined He-Who, another resident and me at a table for four.  She mouthed "I can't hear anything" and pointed to her ears.  Oh dear, the other three of us are thinking.  It seemed she couldn't talk above a whisper if she can't hear...strange.  The more she indicated that she couldn't hear, the more concerned the rest of us, especially He-Who.  She kept mouthing how quiet it was but she managed to order lunch and ate well.  I wrote on a napkin that perhaps she should contact her daughter and that we would help her do that.  "No, no," she mouthed.  "My daughter is coming.  I am fine."  She finished her lunch and left leaving the three of us debating what to do and with questions like "did she have a TIA (mini-stroke), should we go with her, should we contact the nursing staff?"  He-Who insisted we go down and report it so the nurse would go by and check on her.
That evening I went to play Mexican Train Dominoes with friends and mentioned the incident.  "Oh, she does that all the time.  She forgot her hearing aids again."  Whew!  Good grief!
End of story of life on the funny farm.

Clueless....

Yes, they are both black and there is not much I can do about that!  I've just spent a frustrating hour teaching He-Who_Sleeps-Alot how to use the land line telephone and the TV remote.  He wrote everything down and has now forgotten where he put his notes.  His anxiety is mounting over my departing for 4 days in a couple of weeks.  Lesson for me:  don't tell him until a couple of days before.  I made the mistake of taking him with me to arrange for caregivers to come while I was gone.  My thinking was that if he met with them, he would be more comfortable with the idea.  Wrong!  He can't remember the visit but does remember I am leaving but not when.  Is this a sign we are ready for memory care?  I have mounted in big font important phone numbers right by the phone.  He lost his cell phone weeks ago, no idea where it went...I've searched everywhere.  I cancelled his line as it had not been used in 3 months...he never remembered to take it with him and when he did, he couldn't figure out how to answer it.  The good news it has saved us $100 a month on our bill.

I am still wrestling with being depressed and will talk to the doc about it.  We went to Happy Hour yesterday because He-Who enjoys the music.  I don't even want to go anymore.  The music is so damned loud you can't carry on a conversation I guess because half the people there can't hear well anyway.  Nobody says "Hey, come sit with us."  I'm realizing how isolating this damn disease can be.  The women I enjoy are all widows and get together in clutches and the couples get together but because He-Who doesn't interact we are seldom included unless I push for it.  Am I whining???  Probably but I don't care.

I look at some of these residents and have to wonder why and how do they keep going?  Would I want to keep on keeping on when I can no longer care for myself or contribute in any way other than just maintaining myself?  I'm reading Diane Rehm's new book, On My Own, and it brings up so many questions about life and extending it at what cost to the person and the family.

 Right now physically He-Who is in good shape and most would probably not know anything was amiss until he misses a cue.  What do I mean by that?  Alz people don't pick up on what would be obvious to most of us.  For instance:  he orders shrimp salad for lunch everyday and dips his shrimp in the Ranch dressing rather than the cocktail sauce.  He eats dessert first...all this no big deal.  At a Chinese restaurant large plates are placed in front of us to place servings from the platter of food ordered.  He ignores the plate and eats from the platter.  All of this is no big deal and I ignore it though aware that others dining with us note it.  The point is that it is just some of the little cues that are missed that indicate we have a problem here.  Thank God it isn't a huge one and I remain so grateful for that.

And by God, I am looking to find that joyous person I once was.  Good thing I am going to visit a friend in Tyler for a few days.  Whew!

The Gift of Alzheimer's

     Many years ago I read and reread Ram Das's book, Be Here Now, about living in the present, that is really all we have.  Well, such is the gift of Alzheimer's and sometimes I'm jealous.  All there is is what is right in front of you...no future, no past.  This doesn't make it always easy for the caregiver, the one in charge of keeping life together.
     Today was a great illustration.  He-Who and I had an 11:00 am appointment with our dentist for tomorrow.  We have a long-time relationship with our dentist so continue to drive an hour, sometimes more depending on traffic, to his office near our previous home.  About 9:10 this morning the dentist office called and asked if we could come in today at 11:00 as the weather prediction for tomorrow is for severe storms and flooding.  I agreed whole heartedly as I was already concerned about traveling in such conditions.
      But He-Who was still asleep meaning I had to get everything going in high gear.  High gear is almost impossible with an Alz patient but I got him up, explained the circumstances and laid out his clothes while urging him to get into the shower ASAP.  Gratefully he complied while I raced to get showered and dressed as well.  I ran back in the bedroom to check and he was progressing.  Then I got out his medication and a breakfast drink.  He came out and was puzzled about what we were doing.  I explained again about the call from the dentist and wasn't it great that they were squeezing us in today to avoid the drive in the weather tomorrow.  By now it is 9:45 and he's checking his hearing aids...one is dead, of course, and needs a new battery.  He goes through batteries quickly because he forgets to open them when he takes them off.  So okay I change the battery, he grabs a newspaper to read and we are finally out the door and on the freeway.  Again he asks where we are going.  Again I explain.  He is perfectly relaxed and I am white-knuckled on the steering wheel negotiating the traffic.  Note to self: BE HERE NOW!
     The dentist discovered an abcessed tooth in He-Who, consulted me in the other room about it being removed and I agreed.  In a few minutes He-Who comes into see me wondering what I thought about it.  I assured him it was the correct thing to do because of the infection amazed that he was present enough to be concerned about whether to go ahead.  Nice gift here.
     There is a lesson in all of this and a gift.  I'm the one who gets her panties all in a wad when confronted with an urgent change of plans.  I'm the one who was worried about being late for the appointment when looking at bumper-to-bumper traffic.  He-Who was fine and just along for the ride.  I need to breathe deep and let be what will be and at the same time remind him to brush his teeth.  I, too, am just along for the ride.