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.

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.

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.

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!

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.

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.....

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.