Saturday, November 8, 2014

Damn this disease!

This courageous post from my young friend, Darryl Estes, breaks my heart.  He is a dear dear friend of my daughter and was much a part of our lives during their high school years and after.  He adopted us years ago and has always kept in touch.  This "child" of mine is 48 years old.  Early on-set of this terrible disease is so especially devastating to the victim, friends and family.  I am grateful that he has a devoted partner to care for him and  I want to encourage him to continue posting his progress while he can as I think it is helpful to others dealing with the illness and those caring for them:

"I am going to apologize for what I may write, say or due in the future. I have Alzheimer's . George and I started this journey 5 months ago. I will be writing about what's going on with me from time to time. There will be a time when I stop posting on facebook and that means I have crossed over to the road of no return. I'm terrified at what the future is going to bring. Just know I love my family and friends. Here's how my day starts, I wake up and I usually do not know where I am and sometimes I don't know who I am. George gets me on track a few hours later . He has me on a routine that has helped me. I've never seen George so patient. I am on medication that is supposed to slow the Alzheimer's. I have good days and not so good. So please be patient with me. Love you all Darryl Estes"

This disease is affecting millions.  If it were ebola, the government would be screaming and doing what it can to stop it.  Why not Alzheimer's?  Please support your local Alzheimer's Association.

Monday, October 27, 2014

He-Who Sleeps a Lot

This is one of those great mornings of no exit deadlines, just some errands to run and a doc appointment.  He-Who is still asleep now at 8 am which is not unusual these days.  He frequently sleeps 10 or 12 hours.  I'm done with worrying about it since I read that having Alzheimer's is exhausting.  It seems it takes a lot of energy just trying to track what is going on around them and keep it straight and try to behave appropriately.  That makes sense to me so I've learned to let him be unless there is a need to get moving.  In that case I get him up at least an hour before we need to leave as it takes him a long time to get ready to go anywhere.  He has to check and recheck lights, wallet, highlighter (he takes one everywhere), keys, hearing aid batteries, etc.

But today is slightly overcast and cool and after putting out the trash, I crawled back in bed for an extra hour.  I seem to always dream vividly when I do that and I so love dreams.  For the past few months they have a recurring them of being on a trip with a group of girl friends.

Today's:  We are at a conference or workshop of some kind or on the way.  Today we are on the way. I'm not driving and we seem to be way out in West Texas somewhere in the mountains and get lost (another recurring theme).  We start down a dirt road and it becomes totally non-negotiable, full of deep cracks and right the edge of the hill..very scary but our driver puts the car in reverse and backs up.  We meet a man who gives us directions to a rustic lodge down another road and off we go.  End of dream.

Hmmm...this seems to be a reflection of where I am in my life right now.  On a strange highway with a lot of girl friends.  Two of my best and oldest friends with whom I went to grade school through UT now have husbands who are having some brain malfunctions...all this just happening since our get-together in San Antonio in August.   Is this what old age is about?  And perhaps the dreaming helps me process all this.

Wednesday, October 22, 2014

Caregiving and isolation

This Alzheimer's crap is just damn isolating for both the patient and the caregiver.  It can be real lonely.  I miss my best friend, the guy who I used to have some great discussions and some greater arguments and at times I feel I just have a roommate, one who is kind, not attentive and pretty needy.  I doubt that he would agree with the description.
True, I have some marvelous, wonderful friends who give a lot of support but they are mostly in Clear Lake, an hour's drive away.  And it doesn't help that major construction is going on all around us which has created chaos with the traffic to the point that we have to sneak around the back of a restaurant to get home and an ordeal for anyone coming here.
       But I always have to figure out  what is needed here before I make a commitment and that is not always predictable.  Before the move and after, my concern and focus was on what was going to work best to care for He-Who with very little thought as to what to do if I became ill.  And darn, if that isn't where the weak spot was in my thinking.  Sure enough, I'm the one who ended up on the ER with vertigo from a serious sinus infection.  Thank Goddess for an angel of a sister-in-law who took me and I find I'm leaning on her more than I want as she already has some folk she is looking after.  But now we are a long way from our daughter and 3 and a half hours from our son.  And I'm the one who is having some minor surgery in a couple of weeks with a month of recovery with no driving.  This time daughter is coming to stay with He-Who and me for a couple of nights until we get a routine going.  Thank goodness, we made the move here so there is no worry about meals and housekeeping but He-Who has yet to get to the dining hall by himself.  Food is a non-issue for him.  He forgets to eat unless the plate is right in front of him and even then if there is a lot conversation at the table, he forgets it.
     Physically he is in great shape.  We both should get more exercise and have missed opportunities here to do so.  He won't go without me to the classes and I will be laid up for a while.  Ah well.....
And I've noticed that because I have a husband, I'm sorta excluded from the table of widows and there are a lot of them....a lot more of them than couples.  Maybe I exclude myself in some ways because I'm concerned with what He-Who is up to.  And maybe that will change as time goes on.
     I'm taking a poetry class from Sarah Cortez which is a life line from this Island to the Mainland for me.  She is a great teacher and the class is really challenging with some homework assignments that make me sit up straight and dig.  I didn't get very far at trying to organize a Wendy Davis support gathering here but our T-shirts should arrive soon.  I'm checking to make sure everyone who wants a mail ballot has sent off their requests.
     And I feel incredibly grateful I'm not facing bigger challenges.  I checked with other friends today who are facing much more serious challenges with health and loss and feel damn lucky.  One thing I hate about getting old is that my friends are aging, too and facing the losses that come with it.  I hate seeing them suffer but it does make me so appreciate my own health with only minor problems and I will answer He-Who's questions repeated for the 5th time with a smile, maybe a grin, as I answer him.





Sunday, October 19, 2014

Whoa...tempus fugit

Oh dear, where has the time gone?  Here it is already the middle of October and I was going to be a consistent blogger.  Oh well, it is not the first time I've screwed up.  So where are we now?
Holding our own I guess we can say...some days better than others and yet I see signs of the disease progressing.  Nothing dramatic, just  small stuff but it is there.

Alzheimer's patients as the disease progress have difficulty with perception at times.  We have run into that on a few occasions recently.  At the Museum of Fine Arts Houston there is an installation that serves as a varied light hallway that goes from one building to another.  Hubby was terrified to walk through it though I was holding on to him tightly.  He kept trying to balance himself and hold on to the walls.  Last week as we were walking out of our granddaughter's high school, a small area in the parking lot was painted black near the curb.  He kept trying to walk around it as it was clear he thought it was a hole.  I know some caregivers have used this to an advantage with wandering patients by painting an area black in front of the door.

But sometimes behavior can be just down right funny.  He-Who loves to go anywhere and wants to go everywhere with me..it's called "shadowing" and I'm sure it comes from the insecurity felt when the caregiver is out of sight.  I try to plan excursions often and to take advantage of the planned excursions our new community offers.  He-Who loves going and course, everything is a new experience for him which is kinda delightful.  This week we joined the group on a Precinct bus to go to the Woodlands Waterway and then to lunch on Lake Houston at Cedar Landing.

For months now I have been doing all the ordering when we eat out.  He can choose something on the menu but by the time the waiter arrives, he can't remember what he wanted.  So on the outing we joined two of our neighbors at a table and He-Who said he would like ice tea so I ordered ice tea for the both of us.  Our table mate ordered a beer and was so looking forward to it as she excused herself for the restroom.  We were brought big glasses of ice tea and the beer was delivered on her return with a chilled mug.  She poured some beer from the bottle into the mug and sat back as I conversed with our other table mate.  Suddenly she said with alarm, "Ken is drinking my beer!! Well, that was a first.   All was solved as another beer was brought to the neighbor but now I have to keep an eye on what is happening when we eat with others? But we all had a great time, the food was great and He-Who talked and talked about what a good time he had.  As we got off the bus after a wonderful day out, he said, "Now, where do we pick up our luggage?"  I love it...he felt we had been on a long trip and we never left the city limits.   Now that is a gift, huh!

Sunday, August 31, 2014

Is the Alz progressing or is it just a bad day?

How does one hang in there when He-Who asks the same question 5 times in 20 minutes?  One smiles and answers and hopes it won't be asked again for a little while.  I can't imagine what it must be like in his head wanting so much to be prepared for what may come next in the day or the plans for the next day.  I can tell he wants so much to be with it and participate and be prepared without having to be coached and coached again.  And I can't even imagine the frustration when all that info fades as quickly as it came in.  How does this man continue to be the sweet, kind person I have always loved!  It must take a lot of energy.  No wonder he sleeps a lot.
My neighbors comment on how friendly and pleasant he is.  For that I am grateful but they don't see and may never the guy who can't find the microwave in the kitchen or figure out how to turn on the TV much less change channels.  It is clear that without guidance and preparation he will not fix any food for himself and no amount of instruction is going to change that.  So at what point do we start thinking about additional help and how do I approach it with him?  There are days when I think he could find his way to the dining hall but would he remember to do so?
This afternoon our oldest granddaughter is coming with her boyfriend for all of us to go see the Shark Exhibit at the Museum of Natural Science of Houston.  She has been fascinated by sharks since she was 6 years old so this should be fun.  It will be interesting to see how He-Who reacts and if he enjoys the outing.  I sure hope so and hopefully it won't be packed with so many that we can't see the exhibits.  I am looking forward to an afternoon off Isle de Cabello Azul and back on the Mainland.  Maybe I'll have pictures.

Wednesday, August 27, 2014

Leaving Mother Earth

There are days when I feel like we have landed on another planet.  Maybe we have and when we fly off the planet to Mother Earth, I know I have changed.  For those of you who have ever been hospitalized, you may recognize the feelings of being dependent and find that those feelings of dependency don't necessarily go away when you return home.  Well, I don't know what to label these feelings I experience but I think they are related.  He-Who has a difficult time with language, calls things by odd names, etc., maybe gets the category but not the thing so some of our dialogue is spent with me trying to interpret what he is aiming for.  This adds to the other planet feeling along with being surrounded by folk using various forms of mechanical devices to get around.  Aliens would feel right at home here or maybe we are the aliens.

But my concern is that now when I leave here and drive out the gate, my confidence level seems to have dropped a peg or two.  Is it the traffic of a very busy city or living in this sheltered community where it could be very simple to just drop out?  Or both?  He-Who seems quite content to watch MSNBC and read the paper but is always ready to hop in the car when necessary.  This is a woman who has driven all over the country and Mexico but now is anxious about finding the new doctor's office a few miles away.  Maybe part of it is living with Alzheimer's which can be like standing on quicksand but how to deal with that?  My life seems to melt away some days dealing with doctor appointments and the pharmacy and I still have to make sure He-Who eats regularly.  Yes, it is a huge help that we get one big meal, sometimes two, prepared for us and a huge help that someone else vacuums and cleans the kitchen and bathrooms. God bless, sweet Rosa. Even Walgreen's delivers to our door...amazing!  I'm not complaining as I am so very grateful that we can live here with this support.  But I want to make sure that we/I  return to Mother Earth regularly.  Maybe tomorrow we will get to a movie.  Next project is shopping for a new car....do I take He-Who with me?  Hmmmm.....

Friday, August 22, 2014

From Isle del Cabello Azul

 
Geez, it has been a while since I've written mostly because I was in chaos.  I have definitely slipped as the Poster Child of Caregivers and really lost it the other night.  The stress of moving has taken a toll on both of us I think and we are working our way out of it, some days better than others.  I had had a difficult day this week with the diverticulitis kicking in, a sinus infection and a trip to a new doc who let me know that I need surgery to fix the bladder problem...there is a poem in here somewhere resembling The Vagina Monologues.  When my innards are acting up, I want comfort food like a baked potato with maybe a salad from Wendy's.  So off we went to Wendy's and picked up two baked potatoes and two salads and brought them home.  I plopped in front of the TV with my salad after taking everything out of the bag leaving He-Who-Can't-Remember-Shit to pick up his and join me.  He-Who chose a baked potato and joined me.  I was pretty relaxed finally and looking forward to my baked potato but when I went to pick mine up off the dining room table, it was gone.  He-Who's salad was still there but no baked potato.  He-Who had eaten them both.  I burst into tears and sobbed...sobbed for the disappointment of no potato when that was what I so wanted but I think really sobbed because of his loss of not realizing what he was doing.  There has been a lot of that around here since the move.  He-Who went on to his salad and I went to bed but he did apologize later.  I think I needed that good cry.


Okay so She-Who-Pees-A-Lot and He-Who-Can't-Remember-Shit have moved into an independent living facility that has a lot of Depend-ent living going on.  Geez but it takes a lot of getting used to.  Don't get me wrong...everyone is really nice, lovely actually but there are just a lot of really old people here on a lot of walkers and scooters.  And some days in the dining hall I look around and get really sad thinking that I might live the rest of my life in here...holy moly.  But I have a delightful neighbor in her 80s who moved in a few months before us who said to me, "I was really depressed for a few months and then told myself..this is as good as it gets so get over it." Very wise woman...I love her.  So I'm working on dealing with it.  I knew the move would set He-Who back some and I suppose he is doing as well as can be expected, maybe better.  It was difficult at first as Comcast couldn't get our TV hooked up for a month and I was so busy getting settled, changing banks, pharmacy, etc. that I couldn't take him much of anywhere. He read the newspapers over and over. He still doesn't venture out of the apartment without me to go to any of the programs offered here and I'm hoping that will change.  His brother comes sometimes and takes him out for breakfast or lunch which helps but He-Who doesn't reach out to the other guys who live here.  Maybe that is a guy thing but I realize he didn't do any of that before we moved.  I'm still trying to get his computer working.

And there is humor in all of this, a lot of humor if I watch for it.
While at the front desk one morning to ask a question of the receptionist, a tiny little ancient lady dressed to the nines was in dialogue with the receptionist about some issue.
Receptionist:  "Just use your cell phone."
TLAL: "Honey, I don't do cell phones.  I don't even remember how to do sex.  I'm 100 years old."

Below us on the 1rst floor is another ancient one who only comes out at night as far as I can tell.  There is all this pigeon poop outside her door all over the walk and some planters which is really disgusting to walk through to get to our car. There is a rule here to not feed any critters, birds included. Obviously the old one downstairs is feeding the pigeons and occasionally I see a little plastic up of food put out her door for them.   Occasionally the staff gets on her about it and she quits for a while.  Well, when she does, the pigeons move upstairs to our floor and porch and start pecking around the plants.  A neighbor down the walkway sits on our porch with a giant water rifle and spends her afternoon shooting at them.  I wish I had a picture...crazy war on pigeons.

There's more but that is for another time.  Please don't give up on me...I will try to get going again on a more regular schedule.  Haven't found a support group, trying to start one but did start a book club and that is going well and I joined a writers' group.  One step at a time...amen.

Thursday, June 19, 2014

Taking a break from the reality of our lives

I have been so negligent with this blog but our lives have been in turmoil with the sale of the house and planning for the big move.  I feel like I had been running fast and furious for the last few weeks.  I continue to be amazed at how the fairy dust keeps falling on us and how everything seems to be coming together with no big glitches so far (knock on wood).

It seemed crazy when we took off for Colorado in the midst of the chaos of selling the house and moving but the plans had been made long ago.  We received 5 offers on our house in the one day it was on the market...3 over the asking price and of course, we took the highest bidder.  The dreaded inspector came and fortunately found nothing serious wrong but of course, some minor stuff that needed to be taken care of.  The last three weeks have been really hard for hubby and very confusing as different repairmen have been in and out of the house.  It has meant moving him and his stuff around and that upsets him. 

He has a difficult time with directions to do anything.  Is this a "guy" thing or Alzheimer's? I try to give him just one very specific one at a time but there have been days when I haven't been too patient with him while juggling three repairmen in the house at once.  I will say something like "Put this in the freezer."  He will make it to the kitchen and then stand there.  I have to think about all the jokes about the elderly forgetting what they came into a room for.  He can find the room but not the freezer.  One day it was the microwave even though he was standing facing it.  He just couldn't make the connection.

We have found a place to land...not on the beach as we originally thought but in Houston...a Brookdale Plaza facility for independent living.  It is the only place that hubby has said he would like to live there...bigger selection of food on the menu and there are quite a few men.  Many of the other places seemed to be predominantly old ladies on walkers.  And a plus for me is that my oldest and dearest friend has recently moved in there and loves it.  So off we go to a 2 bedroom, 2  bath apartment and we have two weeks to get ready to do it when we return.  It is not a continuing care facility but I decided we will just have to cross that bridge when we come to it.

This trip to CO with hubby's twin and wife has been wonderful for hubby.  He and his brother can talk for hours pouring over the NY Times with coffee and he has adapted pretty well to the routine.  We are spending a week at the YMCA camp at their invitation and relaxing.  We took a day trip to Nederland, CO to see this magnificent carousel...a beautiful thing with all the animals hand carved by a local sculptor...rides are $1...can't beat that and he had a great time riding his zebra.  Then an awesome lunch of Indian and Napalese food at Katmandu restaurant.  A fun day for all. 
I had no idea how badly I needed this but evidently my sister-in-law did...God bless her.

Tuesday, June 3, 2014

Oh My...the fairy dust keeps falling...

I always thought if I could just relax about this move, the Universe would provide as long as I did my part to make it happen.  SO finally after weeks of sorting, giving away, packing I felt we were getting really close.  And many thanks to some dear friends who spent days with me going through all kinds of shit and helping me make decisions.  Oh and one painted the front bedroom and bath.  The repairs are done and I hired a cleaning lady to come in for two days and scrub.  Then the realtor brought in a "stager" who moved a few things around (we are still looking for some) and we were ready to go. 

We signed the listing contract and put the sign in the yard on Friday.  Saturday morning the phone started ringing to arrange showings.  We were gone all day as 6 different parties came through the house.  Another came on Sunday.  By Monday we had 5 offers on the table.  HOLY MOLY!  And most over our asking price!  We picked the one that is $10K over and that would take a couple of our cats (we can't take them all with us).  But we will continue to show the house until the 7 day grace period is over,,,who knows, maybe an even better offer will happen but I am thrilled to have this one.

Needless to say this has been very discombobulating for the Alzheimer's patient.  Bless his heart!  He has done pretty well but having his stuff moved has so confused him.  And yet he is excited in a good way about finding a place.  He is "sundowning' earlier....getting confused and tired now around 4:00 in the afternoon.  He still wants to go everywhere with me but frequently sits in the car and listens to the radio if I'm not gone too long. He has lost interest in the computer and spends a lot of time reading the newspaper.  The good news is that he has made great progress going through his piles of printed emails and eliminated much of it.

Every now and then he clouds over and is angry.  When questioned, he rails on and on again about not being able to drive.  He looks at me furiously and says "You took away my keys.  This is all your doing."  No amount of explaining it being the doctor's recommendation as well makes any difference.  But I just acknowledge his feelings and redirect the conversation and he eventually calms down.

I am sure that this move is going to be difficult for him but I think once we get into a routine, he will be fine with it.  I'm hoping to get him interested in some activities and socializing with others.  It is so tiring for me to be his only social life.  He doesn't want me to call his friends to come by...I think he is embarrassed.  He enjoys going to church and talking with the guys there and Saturday we went to our great granddaughter's 3rd birthday party where he had a good time.  And next weekend our son will be here for a party at his brother's house with the family around which is good company for him. 

But for now...it is onward through the fog.  The adventure is unfolding just the way it should so far.  Next step is to find a place to park ourselves and our much fewer goods.

Tuesday, May 13, 2014

After the getaway...

I so recommend that every caregiver arrange somehow to take a few days away from caregiving to restore one's soul.  It is so beneficial in many ways but mostly, at least to me, it helps to put everything in perspective and to distance oneself from the stressful situation.  I spent a weekend in Colorado with my sister-in-law under the pampering of my niece and her partner while my daughter and her partner moved in my home to care for my husband.
     I came home so much more relaxed and feeling better than when I left...a weekend of great sleep and food and wonderful conversations.  All this plus a visit to one of the greatest shoe stores in Ft. Collins...retail therapy. 
In the meantime at home my daughter was getting a real hands on picture of what my life is like.  She was tired when she picked me up at the airport.  She did a great job of keeping tabs on her father, monitoring his medication and took him to church on top of keeping tabs on her teenage daughter.   She said to me as she left, "Mom, I don't know how you do it."  I often don't know either.
       For me, getting away and coming back allowed me to see along with my daughter that my husband's Alzheimer's is getting worse.  He is struggling more to track conversations and find words to complete his thoughts.  We went to pick up his prescription and after returning to the car, he insisted that he needed Scotch tape, lots more tape.  "I am so far behind in my work since you were gone.," he said.  So I went back in and bought 4 more rolls of tape knowing that there was still tape at home but if it makes him happy, not a big deal.  He has created more piles of paper on the breakfast table and spends the day reading old emails and cutting up the parts he wants and tapes them to other sheets of paper (?).  I honestly don't know what he would do without this project as he works at it almost all day with some breaks to sweep the garage.  But we can't show the house with all this going on.  Hmmmmm...
      I am beginning to have a little concern that he may need a memory care unit soon which would change our plans to move into independent living but will cross that road when we come to it.  I am taking one day at a time, sometimes one hour at a time.

Saturday, May 10, 2014

What if??????

I think it must go through every caregiver's mind at least once the question, "What if something should happen to me?"  But do we really give it careful consideration?  For me it was only a fleeting thought UNTIL...I got sick, really ill.  Three trips to the ER with abdominal pain at first and then a crazy heart rate of 180 at the last one which put me in the hospital for a week.  Lots of tests to tell me my heart is fine, I was dehydrated, along with an awful round of antibiotics that made me sicker and broke me out in hives.  But I'm good now and that's not the point of the story.
After the first trip to the ER in my daughter's car I began to think ahead of how would hubby be cared for if by chance I would have to be hospitalized.  Daughter was ready to get on board and we managed pretty well as long as I was home to give directions.  But as I wasn't getting better, I called my sister-in-law and asked if needed, she and my brother-in-law could take hubby for a few days if needed.  She agreed...whew!  I had back-up while hoping I wouldn't ever need it.
Well, wishful thinking!  A week later my heart woke me up at 4 am pounding like it wanted to leave my chest.  I got  dressed, got hubby up and called 911 after telling hubby to unlock the front door. Shortly there was a knock on the front door and  he escorted two big policemen in who immediately took my BP and kept an eye on me until the ambulance arrived and the EMTs came in.  They looked at my pale face and noted a heart rate of 180 and asked if I wanted to go to the hospital.  DUH!  They loaded me on the gurney and into the ambulance and put hubby in the front seat.  I could tell he was excited, not just over my distress but that he was going to ride in the front seat of an ambulance.
In the ER he stayed by my side and held my hand and followed me to a room once the doc decided I needed to stay.  He really managed well at the hospital and kept asking me if I needed anything.  About 8:30 we called my daughter and she came and after checking on my condition took him home to feed him breakfast.
This is where the story gets funny.  The following afternoon my daughter brought hubby back to the hospital.  On the way, he turns to her and says: "You should have seen those big guys last night.  There was a bunch of them and they just came in and took over.  And they really knew what to do...wasn't that nice of them!  And they just loaded Mom up into the big hook and ladder."
"Dad, it was an ambulance."
"No, it was a hook and ladder."
"No, Dad, it was an ambulance that takes people to the hospital."
"Well, it was a long one."

A little later...
"You know what I want to do!  You know those great guys that came last night.  I want to go to each one of their houses and give them each a $20 bill."
"Dad, that is their job.  That is what they are trained to do."
"Well, whatever.  They were good."

My in-laws picked him up at the hospital and entertained him for a few days.  My church members went into action with support.  Thank you all.  I didn't have to worry about anything but getting well.  I am fine now after a round of unagreed on non-life-threatening colon something.

My message is there is always humor to be found in the most stressful situations.  You just have to smile and wait for it to appear.  And always have a plan, a plan A and a plan B just in case.  We are all vulnerable to all kinds of unexpected events.  My plan B is in effect right now.  A weekend away from it all in Colorado with my niece and sister-in-law for Mother's Day.  Very restful and cool and wonderful long naps.  Daughter is staying with hubby and all is well.

Tuesday, March 25, 2014

Hanging on by my toes.....

Well, this job of getting us out of this house and into something smaller is just plain overwhelming.  Everyday I throw out more, put more into boxes and then look around and see more and more that just can't go with us into any of the places we have looked at. Sunday I was just flat freaking out, today I'm a little better.

The Meridian on the Seawall in Galveston looks like the best option so far.  I've had some serious discussions with my son about the possibility of San Antonio and it just doesn't seem like the best choice for now.  He is so stressed struggling with the new job and trying to get his family situated that together we just don't see how he or his wife, Karen, can be of any real support for a year or so.  His family is on spring break in SA right now checking out schools and houses and I'm hoping they find something this week.  Their house in Birmingham goes on the market April 1.  

The Meridian has a nice apt on the 4th floor that is being renovated.  Renovation is going on on the 2nd floor to convert it to assisted living and memory care so if and when Ken needs it, I can just go downstairs.  My daughter and I are going down this morning for her to take a look and to put down a deposit which we can get back if we don't get the house sold by the time renovation of the apt is finished.  The mission now is to get this house on the market and get rid of 2/3 of what is in it...going from 2800 sq ft to 998 sq ft...ouch!  But the good news is Ken's doc is at UTMB, we have attended the UU church there and I have a lot of friends in Galveston.  Whether all this falls into place depends on when we sell the house...a big if, I know, but I'm laying it all on the Universe to provide in all good time.  I have a contractor who is putting together a bid...another is supposed to be...I will have to negotiate a loan to do all the repairs and pray that it will all pay off in the long run.  In the meantime, I feel like I'm trying to stand on quick sand.  And we aren't ruling out SA at some later date but having downsized, that move should be a piece of cake.

Daughter Karen and I cleared out the attic Monday and I am working on the kitchen today trying to get as much of the little junk in boxes for the church garage sale which we can start delivery on Sunday.  I threw away a big stack of art work but there is so much more!  I'm waking up at 4:00 am with thoughts of some other closet or drawer that needs flushing.  The realtor says eliminate all the clutter, pack away anything personal...whew!  The mask collection has to be packed, the flat file is going to a new home and the list goes on and on.  Thank God for my dear, wonderful friend, Susan, who spends one day a week with me helping to sort.  She is coming this week to help pack the art work I want to keep.  The plan is to get rid of the junky stuff via the garage sale, make repairs, paint, stage the house, sell it, move out and then have an estate sale.  Wish us luck and fortitude and hopefully we won't kill each other in the process.

Ken's progress on getting rid of his stuff is going SO slowly.  He sits at the breakfast table and reads every single paper in the pile he is going through and he has thousands of papers that he has printed off the Internet.  While he is sleeping, Karen and I grab a pile of papers from his office, put them in a bag and into her car.  She will take them home and go through them.  The other day our original wedding certificate in a binder from the church showed up.  Sunday it was the original mortgage papers with the survey so we have to go through each pile of Internet printouts to make sure there is nothing else of importance in them.  Talk about crazy-making!  And we haven't even started on the garage!  

I know I can live with a lot less...I lived out of two suitcases in Australia for 6 months but all this stuff was still there to come home to.  This is different and means going through everything and making a decision about it.  At least I have the memories, at least for now, though there are days when I question even that.  
Support group meets tomorrow, thank God.
Okay, that's it for now...I've been up since 4:30, cleaned out one file drawer and read emails.

Tuesday, March 18, 2014

Here we go again....



Oooh, my back is sore but I have planted tomatoes, squash, marigolds in the vegetable patch and impatiens in the front and red geraniums on the patio.  I just dare winter to make another comeback.  Curb appeal, curb appeal and the tomatoes just because that's what I do.

In the process I discovered that the potted plumeria that I had nurtured for a few years now that my friend gave me was killed by hubby, cut down to the top of the soil in the pot (if it doesn't have leaves, he considers it dead...damn..it was about 4 feet tall......no matter the many times I have told him that it loses its leaves in the winter, to just leave it alone, it will come back...well, not any more.)  Ouch!  When he gets the clippers in his hand, he just goes bananas.  I pray the crepe myrtles will recover.   Sheesh!  I've tried hiding the clippers and he finds them (when he could drive, he would just buy more).  I am sure a psychologist could go crazy with the obsession with the water hose and clippers. I am sad about the plant and can see it as a symbol of the loss of all the hopes and dreams of what we thought our lives might be at this stage, the future we had hoped for now gone.  Now to accept the reality of what is and isn't possible and find joy in it and gratitude for what we are able to do and be with each other.

More reason to get out of here though I wonder what form his compulsive behavior might turn to if we move into independent living...emptying the sugar packets on the table because they clutter????  I pray we find something to keep him really busy while he can still do some things.  In the meantime I praise him for his efforts to clean the flower beds and try to keep my cool and remain grateful that he is still the sweet, kind man I married in many ways.

Hubby is going through the piles and piles of paper in his office but it is slow going as he reads everything and highlights and then cuts them into little pieces almost like confetti.  I can't convince him to put the little pieces in a plastic garbage bag and he just picks them up one by one and hauls them outside to the large garbage can.  I'm sure this endears us no end to the garbage men who watch it rain confetti into their truck.  BUT he found our original marriage certificate in one of the piles...geezus, what the hell? He doesn't remember where he found it but thank God he knew to keep it and give it to me. At least it is now in our safe and I have the key.  I hadn't even missed it but it is clear that we must look through all the piles as God knows what else might be in there.

I called a contractor today to give an estimate on repairs...the same guy who did our remodel but he hasn't called back.  I have two more to give bids.  I hope to get more info on The Meridian in Galveston shortly.  I would feel more comfortable if I had a clearer picture of where we are going to land.  Guess there is always the Motel 6...I hear they keep the light on.

I am reading Where Two Worlds Touch, A Spiritual Journey Through Alzheimer's Disease by Jade C. Angelica.   The best I've read out of at least a dozen on Alzheimer's and caregiving:

     "This long journey home for persons who have Alzheimer's will eventually lead to a fork in the road.  One path leads them into silence, isolation, and loneliness.  The other path, relationship, leads them to a life rich with communication, connection, meaning and love.  Because of the dependent nature of Alzheimer's, especially during the advanced stages, family, caregivers and caring professionals will determine which path those afflicted will travel."  

I'm workin' on it but it ain't easy.

A beautiful poem by Margaret Gibson that says it all so well

Guest Editor: Marilyn Nelson, Academy of American Poets Chancellor, March 18, 2014
Losing It
by Margaret Gibson
What little I know, I hold closer,
more dear, especially now
that I take the daily
reinvention of loss as my teacher.
I will never graduate from this college,
whose M.A. translates
"Master of Absence,"
with a subtext in the imperative:
Misplace Anything.
If there's anything I want, it's that more
people I love join the search party.
You were once renowned
among friends for your luck
in retrieving from the wayside
the perfect bowl for the kitchen,
or a hand carved deer, a pencil drawn
portrait of a young girl
whose brimming innocence
still makes me ache.  Now
the daily litany of common losses
goes like this: Do you have
your wallet, keys, glasses, gloves,
giraffe?  Oh dear, I forgot
my giraffe--that's the preferred
response, but no:  it's usually
the glasses, the gloves, the wallet.
The keys I've hidden.
I've signed you up for "safe return"
with a medallion (like a diploma)
on a chain about your neck.
 
Okay, today, this writing,
I'm amused by the art of losing.
I bow to Elizabeth Bishop, I try
"losing faster"--but when I get
frantic, when I've lost
my composure, my nerve, my patience,
my compassion, I have only
what little I know
to save me.  Here's what I know:
it's not absence I fear, but anonymity.
I remember taking a deep breath,
stopped in my tracks.  I'd been
looking for an important document
I had myself misplaced;
high and low, no luck yet.
I was "beside myself,"
so there may have indeed been
my double running the search party.
"Stop," you said gently.  "I'll go
get Margaret.  She'll know where it is."
"But I'm Margaret," I wailed.
"No, no." You held out before me
a copy of one of my books,
pointing to the author's photograph,
someone serious and composed.
"You know her.  Margaret
Gibson, the poet."  We looked
into each others' eyes a long time.
The earth tilted on its axis,
and what we were looking for,
each other and ourselves,
took the tilt, and we slid into each others' arms,
holding on for dear life, holding on.
 
 
Copyright © 2014 by Margaret Gibson. Used with permission of the author.
About This Poem 
"In 2007, my husband David McKain, also a poet and author of a memoir, experienced significant memory loss and was diagnosed with Alzheimer's disease. 'Losing It' is taken from a book of poems, Broken Cup, scheduled for release from Louisiana State University Press in September, 2014. The poems in Broken Cup, bear witness to the experiences of memory loss and of caregiving."
 
--Margaret Gibson

Wednesday, March 12, 2014

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.

Monday, March 3, 2014

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.

Thursday, February 27, 2014

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.


Saturday, February 22, 2014

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!!!

Saturday, February 15, 2014

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.

Tuesday, February 11, 2014

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.

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

Leaving...

Leaving


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