Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”
Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story. I’ve lived a blessed life. Almost forty years ago, I met the man that would eventually grow old with me. He was a wonderful husband and father. He supported me and encouraged me for four decades, and I couldn’t have asked for a better person to walk by my side while we raised our children and built our lives. But eight years ago, something went wrong. The brilliant, funny, amazing man began to change. He became anxious, quiet, forgetful and even delusional, and I didn’t understand what was happening. After spending a year with one doctor after another, we finally received a diagnosis that would change our lives forever.
When the doctor at the Cleveland Clinic said, “You have Parkinson’s Disease” my heart dropped.
My father had had PD for 20 years at that time and he was in a wheelchair, unable to take care of himself and placing my mother in a caregiving situation that was quickly becoming too much for her 75 year-old body to deal with. I didn’t realize that “just” having Parkinson’s would have been a blessing as the dementia that soon followed my husband’s diagnosis would make Parkinson’s seem like a walk in the park.
The eventual diagnosis of Lewy Body Dementia shifted our existence from blessed to cursed and all the rules changed. The man I knew slowly disappeared and the blessed life I’d enjoyed faded to a memory. While I still loved him, he was different and the relationship we had, changed from being equal partners to “caregiver and loved one.” And the change was hard.
At first, he was capable of taking care of himself, and my life didn’t alter much, but slowly, his capabilities declined, and I found my role shifting to accommodate his needs. Little by little, my freedoms disappeared as it became impossible to leave him alone and he lost the ability to leave home and go with me. As his legs weakened, I could no longer bathe him or get him to the bathroom. Sleeping a full night through, running to the store, having dinner in a restaurant, going on vacation—all things I took for granted before—became distant memories. And I missed them.
I knew (and still know) that his condition was only going to get worse and the end stages are not pleasant. I didn’t give him Lewy Body Dementia. I would have done anything within my power to have prevented this cruel disease from landing on one of the most wonderful people I have ever had the good fortune to know, but I’m human and exhaustion, frustration, and anxiety take their toll.
I want this to end.
I’m not sure how much longer I can survive this illness, even though he now lives in assisted care, the day to day care is still very much a part of my life. In some ways, it’s harder now. Not physically (I could no longer do that part) but I still have to keep track of all medications, make sure the aides are following directions, make sure the nurses and doctors don’t do something those with LBD can’t tolerate…and so on. When I was totally in charge, I kept everything level and consistent. Now, the constant influx of new aides and workers means I am continually training new people how to care for him.
I want this to end and I feel guilty for wanting that.
I want my life to return to some sort of “normal.”
I want his suffering to be over.
I don’t want him to go through the end stages.
I’m tired and I want to run away. But I haven’t because despite it all, I love him and I will take care of him to the end whether it be mine or his.
And this is why my friend’s words warmed my heart and inspired me to go on without the constant guilt that seems to come with caregiving.
This friend’s wife has been fighting Lewy Body for about 5 years longer than we have. He’s the moderator of an on-line support group for caregivers and one of the most compassionate and dedicated caregivers I know. When I was lamenting my exhaustion and the guilt I felt for wanting this to end, he confessed he had the same feelings. I was surprised. I never would have guessed he shared those emotions. His wife is also in assisted care and he’s also beyond exhausted.
“But,” he said, “My thoughts are not my actions”
And I knew exactly what he meant. It’s okay to long for the freedom that awaits us at the end of this journey. It’s okay to want this to end for both our loved one’s sake as well as our own. It’s okay to be human and want this nightmare to be over. It’s okay to hate the life of caregiving that has been thrust upon us. The reason it’s okay is because our thoughts are not our actions. As long as we still provide love and care to our loved ones, they will never know our thoughts are on the future and a life free of Lewy. All they will know is that we love them and we are taking care of them. Even if they are no longer aware, they will receive the benefits of our love and care and that’s the best we can do.
It’s okay to be human. It’s okay to think about a life free of Lewy Body Dementia because, our thoughts are not our actions.
*update: Just a few weeks after this post, my husband began his final decline and passed away on November 13, 2016
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