Thursday, February 11, 2016

Our Long Goodbye

My wife has Lewy Body disease, a fatal combination of Alzheimer’s and Parkinson’s. The disease progresses slowly, like Alzheimer’s, providing time to prepare for the inevitable end within one to eight years. I am learning the hard way what such preparation means, and I share some thoughts about that below.

Execution of a Last Will and Testament (LWT). That was the first item we accomplished. That also involved collecting all the titles, contracts, deeds, and the like into one folder behind the LWT, but we have yet to add the codicil. The codicil assigns specific items to specific recipients. I believe it is the most difficult part of planning for the end. Homes, vehicles, money, boats, and such are easy to distribute because those things have a limited life; however, fine jewelry and works of art can last forever if properly cared for. Distributions of those items to people or organizations who will appreciate them require difficult decisions. Other documents of this type are collection of organ and brain donation forms, and the associated preparation for moving her body to locations where organ extraction and autopsy can be performed. Some of these forms can only be executed by me after her death, but the process needs to be defined clearly so everything she wants done can be accomplished quickly when the time comes. 

Learning the paperwork of living. Where are all the bank accounts and investments? What are the usernames and passwords for everything accessed online? Which bills are paid automatically and who receives checks for payment? Where are the tax records? What specific help can I expect from the Long Term Health Insurance? Can we file for Social Security disability? Can we file for retirement benefits from my wife’s former company, even though she is relatively young? The list is long and arduous. My wife has always managed our paperwork, but that must now change. I hate paperwork, but, as her condition advances, I must now pick up the slack. It was, in fact, her declining ability to handle financial records on her computer that were the first outward sign of the progression of the disease. Even though her vocabulary, social functions, and memory remain mostly intact, her cognition impairment and vision issues prevent any type of concentrated decision making, like tax preparation, defining file systems, or mathematics of any kind.

Personal care transition. Some things are obvious, like the need to install a bench in the shower and to take over management of her medications. Some things are not, like the need to learn how to cut her hair and do her makeup. I do not yet need to do her hair and makeup, but the time is coming when I will. My wife has always been fastidious. It is only right that I maintain that part of her life after she loses the ability to do it herself. I am also looking into purchasing a GPS tracking watch. “Wandering” is common as LBD progresses, and I want to be able to track her if she slips out of the house. We are not at that stage yet, but we both know it is coming. I have also brought a treadmill and free weights into our bedroom. Every pamphlet we read stresses the need to increase blood flow to the brain by regular exercise, and we are doing that. We are also transitioning to a Mediterranean diet, as recommended. No part of life is left untouched by this sinister disease. I need to learn to cook much more than I do now.
Buoying the spirit. Perhaps the most difficult aspect of being in a downward death spiral is trying to keep her spirit up. A very real part of having a dying brain is that she is fully aware of it. She remembers how bright her spark was in the past, and is deeply frustrated when confronted with tasks that were easy in the past but now baffle her. I cannot imagine the depth of her grief and internal turmoil when dealing with this. The frustration is overwhelming and leads to tears at every turn. The tears are not a passing phase. The frustration is constantly facing her because the decline is slow and ever present. I try to remove all tasks from her life that could lead to any encounter with frustration, but it is difficult to know when the next obstacle will appear. Because the interface between her optic nerve and brain is impacted, she requires medication to calm the hallucinations…and she can no longer drive. The loss of freedom of movement is heartbreaking, but it is just the beginning. Each small slip in cognition is met with a flood of tears from both of us. Above all, we know she will, at some point, lose her memory of me, and I will be a stranger to her. For me, that is perhaps the hardest part of this terrible disease. With cancer, heart disease, and the like, the patient often knows their loved ones right up to the end. With dementia that is not the case. I rue the time when she stares at me with a wondering look on her face as if to ask, “Who are you?” But even that, I fear, will be better than what come next—the Parkinson’s stare.
As the beauty of life becomes more precious to us both, we are determined to have good times while we can despite the obstacles. We just returned from the International Snow Sculpting competition in Breckenridge, CO, and are now planning a trip to Florida where we will visit my daughter before embarking on a cruise out of Cape Canaveral. The best way to keep depression at bay, in my opinion, is to fill each day with activities we both enjoy. We attend movies twice a week, take long walks whenever we can and schedule game nights with friends who understand that gentle kibitzing is an ongoing necessity. This will be our long goodbye, and we will say it with as much dignity as possible.
Wishing all of you the very best,

James L. Hatch (http://www.amazon.com/James-L.-Hatch/e/B005CQB6E6)


Tina Donahue said...

This is so sad, James. My heart goes out to you and your lovely wife.

I would hope scientists are searching for a cure for this horrendous disease. Until I read about Robin Williams, I had no idea it existed.

I hope you and your wife's journey is as peaceful as it can be. Her fear and anguish is simply unimaginable.

James L. Hatch said...

You are correct, Tina. Robin Williams took an early exit from this disease rather than seeing it through to the end. Thank you for your kind words. This truly is the most difficult thing we have ever faced. We are looking for trials of new drugs, but there are none. Most studies simply follow the deterioration. There are no treatments or cures on the horizon. Those are, as near as we can tell, at least 50 years in the future.

jean hart stewart said...

James, this is simply heartbreaking. Your wife is so lovely. You are both facing this with admirable dignity and love.

Harlie Williams said...

Your wife is beautiful and will remain that way. I'm so sorry that you are having to go through this now. Prayers for you and your wife.

And don't worry about the makeup. You'll learn.


James L. Hatch said...

Thank you for you kind words, Jean. No one expects this kind of thing at such a young age--she is only 58. The grief is ever present, but we have no choice but to soldier on.

James L. Hatch said...

We appreciate your prayers, Harlie. Sounds like you have some experience. We will be joining local Alzheimer's groups as well. The experiences of others will be of great value.

Fiona McGier said...

When Mom was leaving me by inches, due to many small strokes that took her further away from me after each one, I joined an on-line support network called the Caring Connection. I think it's at caringconnection.com. When I could barely see for the tears, I'd post about my feelings and get support from others in the same position. Other times, when Mom had a good day, I could provide support for other people. I liked that it was available at all hours, since even then I was working 2 jobs and had no time to attend face-to-face meetings. It helped me to cope.

When you fall in love with someone, it is inevitable that someday one of you will be left alone, to mourn what you once had. You are fortunate to be able to afford your vacations, to make the best of the time you have left.