For what it’s worth, I believe the true victims of dementia are those who are caring for loved ones with dementia. Don’t get me wrong, it’s no picnic having dementia yourself, but at least at some point I should reach the potted plant stage and will cease to care about such things.
The caregiver of a loved one (LO), in most cases, are their caregiver 24 hours a day. They often have little to no help, and they are so devoted to their LO that they often neglect their own health to ensure the comfort and wellbeing of the patient. But this is far from the worst part. In my opinion, the worst part by far is being your LO’s primary caregiver and having to watch the person you may care for the most in the world wilt and die away just a little more each day. Many, if not most, suffer a slow grieving process as they see the progression. Then, when the LO has taken their last breath, they get to go through a 2nd, often much more intense, grieving process. Aren’t they lucky that they get to lose the most significant person in their lives twice!
And this is but my humble opinion, yours may be different based on your own experience as It should be. But it almost seems friends and family are deathly afraid dementia is contagious. They’re always there with the good thoughts, words of wisdom, and generic proffers to aid in anyway they can. But few visit the caregiver and LO or offer to sit in while the caregiver takes a well deserved and required break or bringing by a quick, prepared meal or, or or… The point is, these folks are isolated and overwhelmed and any slight gesture would be more than appreciated.
I realized long ago that I was the luckiest guy in the world when it comes to my caregiver, my wife, the love of my life. We met the 1st week of the 1st year of high school, grew up together and just celebrated our 41st wedding anniversary. And she still makes me feel like the boy with butterflies in his stomach from oh so long ago each time she looks at me. And now, even with her own serious health issues, she is a zealot concerning my care. At this point I am doing little around the house, it would take more time to correct my blunders than the help was worth. She has picked the slack without complaint and is quickly learning to do things she is not comfortable doing; all driving, computer maintenance, being the primary navigator when we travel, etc, etc, etc…. And she is not, much to my objection, taking care of herself in the process. She rarely goes out without me, seldom meets a friend for lunch, she is just totally unselfish and places most of her concerns toward me. After many sincere discussions, she is slowly trying to change these things. She has scheduled lunch with a friend at least twice in the past month, she has started to attend an Alzheimer’s support group for caregivers, she and our younger son have gone to the movies a couple times. These are small, but important , steps toward caring for herself.
Perhaps the most difficult part of having dementia, at least for me, is when I’m in a deep, dark fog and have just enough gas in the old brain tank to see the sadness and hopelessness in her eyes as she watches me slowly descend into the abyss. This is the 1st grieving process and it stinks. And there’s little I can do to alleviate the pain. But my sadness about causing her all this distress will soon be a thing of the past as hers lives on. Perhaps Glen Campbell’s I Won’t Remember You At All best exemplifies what I’m trying to say here.
So, if you ever want to meet a true hero, shake the hand of someone who is voluntarily, willingly devoting their lives to someone who will soon not even realize they’re in the room. These are to be blessed and revered, and yes, helped In any small way you can. It may be a small part of your day but it will mean the world to these angels.
Be part of the solution today and, as always, take care.
Randy
