Friday, July 29, 2011

Throwing in the towel......

Throwing in the towel, waving the white flag, I surrender. Well, on some levels anyway. On others, not quite so fast. Cannot imagine this turning into a literary masterpiece, just a little metaphoric update.

Several things going on the Alzheimer's front. First, WB has had a prescription change. Supposing it is like any medication you take over a long period of time, it just quits working or your illness is moving so fast, the medicines cannot keep up.

Psychotic behavior and anxiety are what we battle most days. You say the word 'psychotic' and may think of padded cells and straight jackets. Whoa Nellie, not so fast.

In this ring of fire, dreams are really hallucinations. If you know a dementia patient who wakes  in the mornings or from a nap believing they were late to play a baseball game, that their deceased grandmother is coming to dinner, that the boogeyman is coming to get their stuff ~ its time to up the Seroquel (Haldol). The side effects are scary, but the positives outweigh the risk.

Think about it: You dream (hallucinate) that someone is after you and out the door and down the street you go. Or, you may grab a weapon. Hide? There's really no telling what I might do if I truly believed someone were after me. They may have bad luck....

I also never want to be on the receiving end of a psychotic episode, again. That was the day I had bad luck....

Since this symptom of Alzheimer's Dementia may surely cause some level of anxiety, (and it does for WB) Dr. Counce has added a new medicine to help with that. He's now cool as a cucumber, gentle as a kitten, amiable and laid back. Am hoping this cocktail will get us through the holidays.

Even though the first 10 days on the new medicines were a hot mess, I can see the both of us adjusting. When he gets an adjustment, we make adjustments.

This time last year, we suffered a set-back. We are still not certain what caused the mini-stroke, but it knocked him out of the Bapi clinical trial and had me scrambling for cover. It was only after his doctors changed the medicines that I had a change of heart. Those few days were so bad, I ordered up a social worker, a therapist of every flavor and an appointment with Medicaid before WB was ever released from the hospital.

Then, I took it all back.

There was an immediate flood of concern and assistance. There was rallying and a circling of the wagons. Then eventually, we settled back into the same routine with occasional visits from family and friends and the opportunity for WB to go and visit family in their homes ~ 

News flash on that, he's not going. He's pretty much not going anywhere for very long where I am not (going).

Throwing in the towel.

The paperwork was mailed off today and my fingers are crossed in hopes that he (or I) get the approval for respite care. Its really just another workaround. Working around WB and what we can do to help us help him without creating too much drama. Trying to make it easy, trying to slip it in without too much commotion. Will he sit with some unknown person for 8 hours so that I can run away once a week? Its a test, for sure. Generally when I'm away for just a few hours, I find him sitting in the garage waiting for me to pull the car in.

The work and documentation that goes into these applications will separate the men from the boys. No wonder so many people needing the services never get them, as you had better have kept every piece of paper that came into the house for at least 5 years.

"The Donut Hole", "The Gap", and now "The Look-Back" period for Medicaid. Somebody really needs to write a book on how to survive it.

So, most days I still continue to study, accepting that unless there is (more) bad luck for me with a mac truck, the odds that I will most likely survive my husband of nearly two decades are hardcore. Hard to fight change when it comes dosed out like this, but it could get really weird. With the kids grown and raising families of their own, my own tired self wonders which one of them will accommodate their mother in a travel trailer sporting a WiFi antenna in their back yard?  We'll see.

Now with a new social media account, WB sits with me at the computer with a purpose. He enjoys getting the occasional message from school chums who remember him. They tell the best stories and I answer back what he remembers. It is uncanny how sharp his memory still is dating back to the 1940's and 1950's.....just don't ask him to get a diet coke from the fridge downstairs as it may take him 3 tries to get it. Fifty years, no problem. Five minutes, big problem. Classic Alzheimer's, stealing his brain like a thief in the night, one plaque at a time.

Waving the white flag.

Trying to communicate WB's needs is exhausting as they change daily. We still have good days, we still have great days and some days are so 'off the wall' it is impossible to describe, so we rarely try. Totally subjective perhaps? "Read the blog", we say.

And the blog has taken on a life of its own. First friends and family followed, then others with the same white elephant in the room. Next came universities, hospitals and government agencies. From all over the world, readers are coming. This little rag has been picked up by Google and is being spread around the free Medical sites touted as 'best reads'. There are more and more invites to contribute to forums and I accept them. At this many years in, I suppose there really is a lot that I can offer.

Surrender. We are taking WB back to the beach.

But the criteria is tough. Directly on the beach (expensive), little to no stairs or elevators (condo).  So we need a house directly on the beach with no stairs at a bargain. We have to be able to see him and he has to see us or the train will leave the station. After many weeks of scratching and searching, it just fell out of the sky. Perfect location, perfect set-up and perfect price tag.

The girls (Kate, Taylor Paige, Meg) are on the prowl for the perfect tan and my stress-induced psoriasis could use the saltwater. And WB, well he could use the exercise. We cannot be sure if he will enjoy it, but I do know he will make me stop at the scuppernong patch to see his old friend, he will ask that I take the same back roads he traveled as a boy with his family, he will want me to play Kid Rock on the CD player, he will tell us again the stories about childhood summers spent on the same stretch of coastline.

Quiet please, we are not leaving until some time next week. But you cannot mention a word of this to him ~ else he'll be waiting in the passenger seat tomorrow morning with his Costa del Mar's on thinking we may leave without him.

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.


  1. Good luck with the trip to the beach! I hope YOu get some quiet, relaxing time...but change of location is often tough on people with dementia isn't it? Hope all goes well...glad the blog is reaching and reaching more people - it raeched me here in Japan!

  2. Thanks Oyomesan. Its always good to hear from you. WB absolutely gets a little turned around when we are staying (sleeping) some place other than home. But he needs to get out, I need to get out, we all need to get away from the shut-in arrangement we're in now.

    Will keep a close watch on him and he will certainly be keeping a close watch on us!

    Hope you are well and things are running smoothly for you. I think of you often. In Japan! Rhonda


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