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'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!