Alzheimer's Dementia ~ Like a Game of Chess

WB June 26, 2011 on Avery Island, LA

Somehow, it is getting much easier to write about any and everything else -  than contribute to this blog. Even though we can grasp that Alzheimer's patients live the 36-hour day, (a book that hits the nail on the head in addressing how much we take for granted when it comes to our memories and thought) how many times can you write about it and how can one offer something new? 

WB is 65, his official diagnosis was 45 months ago, although we were looking for reasons for his problems as far as 6-7 years back. More recent discussion has concluded that this may have stretched back easily to a series of surgeries in 1996-1998. Its as if 3 surgeries under general anesthesia (2 colon and 1 ankle reconstruction) may have trumped up an already risky situation. 

The above details are mainly intended for the medical and research community  that regularly or randomly visit.

We have made two trips to Louisiana in the past two weeks to pick up and deliver grandchildren from Texas. Lafayette is the half-way mark and WB loves to ride. With four total legs of travel, I can tell you that each leg was entirely different.

The first leg to Lafayette on June 11, 2011:  Early to rise and mostly packed for the night, I woke with WB sitting in his chair. Showered, dressed and waiting. This never happens so I am assuming he was making sure he did not get left behind. Traveling I-20 west to I-59 South to 12 is a very common route for us. Disorientated traveling south and convinced that we were on I-65 South. Regardless of the continuous conversation we had about where we were, the numerous questions from him, he never quite to it straight. There are stretches of Mississippi that look like Alabama when traveling south, however, he was in a constant hunt for the exit to his mother's old home place. Just as we would get into what I would perceive as a long stretch of road and extended silence, I would turn up the radio to his favorite music and within just seconds, the questions would begin, often a repeat of the same. Turn down the radio, answer the questions, talk him through it, silence for awhile, turn up the radio. Then immediately, questions. As if the radio prompted the questions. (Where are we, where are we going, what time is it, what direction.....)

Second leg from Lafayette back to Birmingham on June 12, 2011: The boys were with us and full of excitement about their trip to Alabama for two weeks. He would not allow them to have a conversation with me. Finally, we just gave in and rode most of the 8 hour leg in silence.

Third leg back to Lafayette on June 25, 2011: For at least two days prior, we began getting the boys suitcases packed, things together, stuff in the car and this activity creates mayhem for WB. I had made arrangements on Monday for him to stay with Amy (#2 daughter) here on Saturday and then to her house Saturday night and Sunday. When I told him this on Tuesday, he promptly replied "I am not STAYING with anybody, I am going with you." Looking back on it, my mistake was giving him the option. The trip is hard on him, and has become harder on me. Knowing that I wanted to spend that last 8 hours with the boys reminiscing about their stay and suspecting his inability to allow me to do it was too much. Then, after relenting I immediately knew better. For two straight days, he was getting his things together to leave. Constantly. Leg 3 was rough. So bad, that I had downed two beers before dinner and that never happens.

Fourth leg yesterday, June 26, 2011,  we started early with breakfast, and he was turned around about where we were and what the plans were. WB has been wanting to visit Avery Island and the Tabasco plant for years, so Mike and I decided to make it happen. It meant a much longer day for each of us driving with the cost of several hours and an additional 80 miles out of the way, but it was  much to close not to take him. Honestly, there wasn't much to it for us on a Sunday, as they only offer plant tours during the week, but he loved it. Leaving the island for home and spinning off in opposite directions from Mike and boys at the I-10 junction, I put him in the back seat. Except for his inability to operate the different seat belt, it was a breeze.

WB, Me with the Short Summer Cut, Andrew, Preston Mike

With so much to share on their visit, I will include in another post....

It was my two-day jaunt to the beach with my friend in early June and a visit from Bill's daughter Susie that prompted me to get on the stick again looking for respite care and information on elder and estate law. Kate, Michelle and Wade were instrumental in making that  little trip happen, however, WB's reactions upon my return normally tear at any good associated with a getaway.

With several appointments lined up this week, I will no doubt be covered up in paper over the next month. The social worker with Medicaid is due here Thursday at 11:00 am to start the process. She will once again access his medical condition and conclude that without full time care, he IS a candidate for assisted living or nursing home care. We will only be approved for 12 hours of respite (4 hours/3 days per week) if he falls into this category. There is a real push from the state to keep patients in the home for as long as possible. Even though they DO NOT compensate family members for full time care, they will compensate an unskilled worker for 12 hours per week.  In Texas and at very low pay scales, they actually pay family members for caregiver support at home. They believe that better care is rendered from family. If that won't make you feel like you're worth nothing,......

But now, I'm thinking we should take what we can get.

A friend recently asked me, "what kinds of medications are you on?" NONE, I say. To which she responds, "I hear resentment and exhaustion in your voice."

Resentment, perhaps. That this was not the way it was supposed to be and my companion now needs the assistance a child would. I do not blame WB for this and do not think of it as resentment, but sadness. Yes, it absolutely makes me sad. The doctors and I have tried different things but at this stage of the game, I refuse to be medicated for another person's illness.

Sad, that there are so many in our own family who simply do not get it.  There are specific, warranted and absolute opportunities at this moment that could enrich WB's life and this "glass half full wife and full time caretaker" sits around waiting for  those things to happen. Sad that there are still family members who believe he is not afflicted at all. Because he was once so 'in charge' and now cannot speak for himself, I see advantages being taken on an entirely different level and in a plethora of different areas. I know, like so many others, that if WB still had his mind, things would be astoundingly different.

Exhaustion, absolutely. It would be impossible to explain this level of exhaustion. To be so mentally exhausted that it physically wears you out...there must be a word(s) for that, but I am so tired, I cannot think of it. Personally, not good at the game of chess, I have heard chess masters talk of this toward the end of their tournaments. 

Tired, but not so beat down that I cannot see what is happening around me, nor does it keep me from steering this ship to its next port of call. Sometimes when there are a multitude of small skirmishes and you cannot take them all on, I think you just have to pick the battles that will most likely produce the best outcome. This is war, after all. Just not the kind you would pack a firearm for. 

Is this sadness, or am I actually starting to get really mad about this whole predicament? Oh my.

So, just 4 hours last year seemed pointless. But now, 4 hours of respite looks like a golden opportunity to start strategically planning our next move.

Check.

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.