My name is Rhonda Brantley and this blog reflects daily living with an Early/Young Onset Alzheimer's Dementia patient; the good, the bad and the ugly. My husband, Billy Ray Brantley, was diagnosed in October 2007 and left us April 9, 2012. I was his primary caretaker and it was the biggest and most important job of my life. He will remain forever in our hearts.
Wade's Banana Pudding Trifle and Grans Italian Cream Cake Recipe
For many years now, we have accepted the arrangement. Grown children with spouses and children of their own eventually create their own traditions. Even in the beginning of us, we swerved around the plans of others during the holidays. Then, we simply let it go. Call it logistics, maternal priorities, it is what it is.
There is simply no pleasure trying to fit a square peg in a round hole.
The last several years have been extremely tough and it is not just Alzheimer's Dementia but what comes with it. I only need to look again at the most recent pictures of us to know that you can track this disposition all across my face. Even before perusing a recent article on AD, I had posted a few comments about the new Billy Ray (Willie Bill/WB). Remembering that Alzheimer's will eventually change one's personality, it seemed to me a bright idea to give this new personalty a pseudo name.
Dr. Lee confirmed for me last week that AD patients will generally return to their original personality. One may hide aggression, anger, fear, etc. for their entire lives. Jealousy, insecurity, manic behavior all may all be masked because our exquisite brains allow us to perform in this way. When AD strikes the hippocampus, thus severely impacting emotion and memory, the original personality may surface. In WB's case, it surely did.
A recent comment, "Bill doesn't seem quite himself today" brought out the mother bear in me. I no longer take a position when approached with things like this, but it does take me a few days to process. If you're not with him 36 hours a day, 9 days a week, I suppose it would be easy to miss the full impact.
And just which self are we referring? Could it be the Billy Ray of his childhood, the Willie Bill of this young adulthood when full of piss and vinegar or Bill Brantley, the more mature businessman?
I shared a post last week about his new sweet spirit. The neediness riddled with fear of a more submissive and grateful man and very vulnerable. In another posting, I recall mentioning happiness and am sure that would seem odd to most. After the shock, the grief, the anger, the stress, the depression, the financial worry, etc., we embrace patience and acceptance.
So many of our friends and family have responded to my request for assistance, encouragement and prayer. They respond to our needs as we report them, however with AD, needs can change on a dime. If it appears that this is a roller-coaster, then I can confirm that it is.
Sad to be missing out on the future we had planned, but ecstatically encouraged with our commitment to make new memories with the man we adore. It was a grand-daughter we had not seen in 10 years who came up with the idea to have a mini-Thanksgiving early, which #1 son inadvertently turned into an Italian dinner and #1 daughter coined the Italian Feast. Even though WB retired early, it was a huge success.
Meghan and Big Daddy
It is clear to me we share a common goal. We remind ourselves daily of that goal, but our abilities to set aside past transgressions to attain it absolutely reflects the impressions WB has left with us. We may think that we are doing great things as we selfishly massage our own feelings, but I see us coming full circle. He may have never known the impact he had on us pre-AD, however it certainly shines brighter each day.
Making new memories with him has been therapeutic. We do a lot for him, but I must confess, he is doing something for us that deserves daily recognition. When you have a common goal to love and care for him, it is simply impossible not to admire and renew your love and respect for one another.
I believe we are accepting fate. We educate ourselves daily and provide for him as much as he will allow. He told me there will be no more MRI's for him, so I accept that. As much as I was looking forward to a new opportunity for emotional counseling for WB, I wonder how much of that he will remember from day to day, moment to moment. Adversely, my acceptance of the potential stress on him and what transpires when he is placed in positions out of his comfort zone have thwarted my ambition. My aspirations of three years ago are on leave.
All of this care and compassion naturally produces a copious amount of questions. Sometimes I find myself patient with it, sometimes I find myself resentful. Since patience has never been a virtue for me, most of this renewed patience is exhausted by daily life. I was never a stay-at-home mom and my new appreciation for that job has certainly been an eye-opener.
When Dr. Lee queried me last week on the hours spent with him and then strictly directed me to find more respite, I was quick to respond that the system we were working today is working for us. I do not need to "get out" more at this point in time, I need WB to get out more. This may change tomorrow, but today, this system is working.
His favorite things are not going out to get out, but going out with family to see other family and visit with old friends. With his long-term memory still functioning, he is comfortable with this. Large crowds that include people who he is less familiar produce greater speech problems and frustration, so we will continue to discourage it.
We remind ourselves to watch what we say as it is impossible to know what he gets out of the entire conversation. Even though his doctors have specific ideas about what would be best for him, we recognize that he may not be a textbook case of Alzheimer's Dementia. We know now that no two AD patients are alike. You can read any book you care to on AD, but nothing prepares you for what really happens. Our success will only be achieved when we lay down our expectations, our opinions, our desires.
Regardless of the time zone we live in, this program is centered around 'Willie Bill Time'. When his condition takes a dip or sharp turn, we will adjust. Looking forward to next year and the 2nd Annual Italian Feast. WB may not remember it, but it is something I may never forget.
#2 daughter will be picking her daddy up tomorrow for a ride-about. #3 daughter will be returning home today from college to crawl up in her daddy's lap. I can tell by his mannerisms he remembers something exciting is going to happen.