(The author, diagnosed with Mild Cognitive Impairment and suffering through the horrific death of his wife, wishes to remain anonymous in the online community.)
I was diagnosed with Mild Cognitive Impairment (MCI) and had memory problems for many years, most likely 20-plus, but I can’t remember exactly. By that, I mean difficulty remembering what I’ve read, watch on TV, what I’ve said in conversations, and whom I’ve spoken to. It was one of the factors that led me to retire when I was 54 back in 2005.
My wife “Susan” began having cognitive problems in 2009 after knee surgery. She started having difficulty shifting her weight onto her operated leg. Instead of shifting weight over, she would lean her head in that direction. Then came a bout of dehydration, respiratory infection, and incoherence that landed her in the ER where the doctor reviewed her head CT and said, “Her brain is older than her age.”
Three years later, a robust work-up diagnosed my wife with early onset dementia. For several years, she didn’t want to know where her disease was heading, but I needed to know to be a better care provider. We began using senior services and adult day care to support her needs. We connected with the local Alzheimer’s association, attended seminars, support groups, and functions to make the most of a crappy situation.
In December 2015, I had intense pain in the upper abdomen, but I couldn’t go to the ER because I was home caring for Susan. My pain increased over the next months and led me to place her in an assisted-living facility. Toward the end of 2016, Susan became much more unsteady in her walking. She fell twice in 2016 resulting in one ER visit after hitting her head. In January to mid-June of 2017, she totaled six falls with five ER visits and two hospitalizations.
The second one was for “altered mental status,” where Susan would scream and move her legs, but couldn’t explain what she was experiencing.
I had been trying to get her into palliative or geriatric care for years, but Kaiser would reject my requests since she was not 65. I happened to find a hospice eligibility chart and learned that her weight loss was a qualifier when accompanied by dementia. That finally got her into hospice on June 14, 2017.
On July 14, my gall bladder was removed after finally determining that was the cause of my abdominal pain. Susan, now non-ambulatory, still managed to fall out of bed and hit her head.
Susan deteriorated until she died on July 23, 2017.
Several times over the last months of her life, I’d ask if I could find a way, would she want to end this dementia journey? She said no. I did my best to honor her desire, not wishing to know where this was heading. However, that led me to buy Final Exit.
I attended Alzheimer’s and grief support groups even after Susan died. I did this both to help myself heal as well as to share what I could with folks who were still in their caregiving role.
I also stressed that they need to have a structured plan, since the dementia journey is very unpredictable. What will happen if something happens to them? Who will take care of their loved ones?
With Susan gone, my MCI diagnosis prompted my call to FEN. I requested documentation from the neurologist about my diagnosis, which I provided to FEN along with my letter of intent, and I’ve been a lifetime member ever since. (I try to contribute to your great cause as often as I can, and you are my Amazon Smile designated charity.)
There is no way I will ride out this disease like my wife of almost 44 years did. Nor do I want to subject my children to the demands and stresses of caring for someone with dementia or who is in chronic pain.
Quality of life is much more important than quantity of life.
I have and will continue to accept many of the limitations that aging brings, but I will not accept debilitating dementia if that turns out to be my future.
The issue is not financial for me, but rather a dignity and quality-of-life consideration. I have stated for many years that we treat our pets much better than we do ourselves when it comes to end-of-life compassion.
Susan and I have two children. Our daughter is married, and I now have both a beautiful and wonderful granddaughter and grandson who live about five miles away. They all participated in discussions and decisions about Susan as her dementia progressed, as did several of my and Susan’s siblings.
Even when Susan didn’t want to inform our kids or our families about her diagnosis, I kept them in the loop. I’ve done the same with my diagnosis.
I’ve told my children I will not ride out dementia if it progresses, and they know I belong to Final Exit Network. I reinforce this from time to time, as well as during the year-end family discussions I hold to discuss my financial situation, where important documents are, etc.
And I’ve had my elder-law attorney add an addendum to my Advanced Directive that documents and elaborates on my wishes for care in case of dementia or other progressive diseases, and that includes VSED (Voluntarily Stopping Eating and Drinking).
What I want from Final Exit Network is assistance in helping me prepare to end my life, if and when dementia progresses or some other “trigger event” occurs. I need to do all preparation and perform the steps while I am still able to do it myself. FEN has provided that information and support over the years, and I feel I am ready when the time comes.
I must be able to procure and assemble devices and follow directions – or my window of opportunity will close, and I definitely don’t want that to happen!