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Introductions: Are you caring for someone with dementia?
My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.
In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.
As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.
I wish everyone struggling with this disease and their caregivers and families strength and peace.
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@joey333 Feel free to use my family as an example of 'a story you heard somewhere' if it helps.
Strength, courage, and peace!
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1 ReactionYou are welcome, Joey333. All of us who find themselves facing what you have described, came to the conclusion that something was not right and we were filled with a lot of uncertainty. And of course having faith that God is helping us gives us assurance that we will not be alone in the final stretch of this marathon. We take what we do know about how things are progressing and make some changes so we aren't as stressed. We stay with trusted doctors and try to educate ourselves like you are doing. No one can be sure of the time frame, and wouldn't it be wonderful if he stays at MCI or improves! My husband was very physically fit, he was a runner who ate a balanced diet, was not overweight. That was about 15 years ago. Since that time things have very gradually changed to the point he is still without any other health issues but his mind. He remembers very little about what has happened in the last part of his life. I remind him of wonderful things we did in the active years of our life together. He smiles like he remembers but I can't say he does as he never adds anything to the conversation. I took over all the financial handling of our life, plus all the physical work of having a home, and he was relived that I did. He was making errors in the checking account, something he would not do before. His decisions were turning into disaster. He gave up golfing and also driving a car so we went from a two car family to one. My smartly dressed, squeaky clean man became one who did not bathe or brush his teeth. Outsiders did not know how much or for how long I have been helping him with those things. He was able to have conversations with them so they thought everything was great. But when the filter was missing in his conversations with others or in his behavior in social settings turned bad, our children could not ignore what was happening. I could write a book on this but I do not want to do that here. What works for me - I love my husband(he is the same flesh that I married) and with every day I see him smile and sometimes out of the clear hear the word "thank you", I know I can go another day in this role. One day at a time. Bless you and all who are on this site for support and bless the volunteer mentors for not giving up on us. Virginia
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2 ReactionsHi @bdrupp, I think I read in another post that you, too, are caring for a husband who has Alzheimer's? How are you doing?
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2 ReactionsThank you, Virginia, for sharing your story with me. I am touched at your tenderness and your willingness to share with me and also filled with compassion for you and your dear husband and your daily walk. It seems surreal to think that we could be there someday . . . especially given that Daddy is the sole breadwinner and we still have six children under the roof. Our youngest just turned seven.
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1 ReactionThank you, Scott, I appreciate it - that's a very good idea. : ) I had one of our teens at the family doctor the other day and mentioned Tom's diagnosis. I told him what I saw with regard to MCI not always progressing to dementia (only 50% or so). He didn't look as hopeful and said it is more like 60%. So, we just wait and see? Is that what all of you guys had to do as well? Tom doesn't have any family history of dementia (that we know of), but the neurologist said it could start with him.
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1 ReactionGood morning @joey333 I hope this finds you as well as can be expected on this new day! We are having freezing rain here, so a good day to be by the computer early on!
In my wife's family there was no known dementia prior to my MIL. There is so much that has yet to be discovered when it comes to how the brain works, especially when the brain has been damaged. Good thing research is continuing!
All we could do was take life one day at a time. As the son of an alcoholic father this was a fairly comfortable mantra for us to follow since I had been doing it for years. That said, easy to say, not always easy to do! There were many periods of plateaus and times of tiny changes as well as times of significant degredation.
Many in my MIL's family were in denial over the disease for the early years and while this may have helped them feel better about their Mom's situation, it also resulted in much quality time being lost, discussions not being had, and opportunites gone. While the disease was different with my father, I was lucky enough to have made my peace with him before he died. My sisters never did and now have many things that will never be resolved for them.
We all just never know! One day a year ago I awoke having had a stroke. A month ago I was diagnosed with skin cancer on my nose and cheek. One day at a time for sure in our home! I take stock of my 'condition' only once a day during my morning walk with my new pup, then put it away to live the day, but also knowing in the back of my mind it is on my 'to do list' tomorrow..
Strength, courage, and peace!
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2 ReactionsOne day at a time is my mantra.....sometimes one minute at a time.
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3 Reactions@providence1960 TRUTH! Pure caregiver truth!
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2 ReactionsScott, I am so grateful for the time you take in your thoughtful responses to me. You have endured/are enduring much. Your words and your walk are a beautiful testament to waiting/watching and taking things one day at a time. It is difficult for me to let go and trust, though I know it is all I can do. I am a planner and organizer - I want to know if this will turn into what I am concerned it may be so that I can "plan" and take action. I suppose, too, part of that is being concerned our older children will think me overexaggrating and off my rocker! I don't want to cause Tom undue stress either. There is much unsettled in my mind and I don't even have my thoughts all in order or clear for that matter.
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2 ReactionsHi @joey333 I hear you here! I don't believe I ever had a day where my thoughts or things were in order from that first day my wife's neurosurgeon looked at me and said "so...you're her caregiver here?" Scared the hoohaa out of me for sure and I don't think I ever did respond to him from the fog I entered. Caregiving is a time when for the first time in my life I came to accept 'good enough' rather than seeking the perfection I always strived for, especially in my professional life.
If you haven't seen it you might find this piece I wrote of interest:
https://socialmedia.mayoclinic.org/2018/06/01/the-choice-and-challenge-of-being-good-enough-a-caregiving-story-experts-by-experience/
I tried to point out how I came to embrace 'good enough' for almost a decade and a half. Plus now that my stroke took the sight and hearing from my right side I have to embrace it again. Especially when it comes to certain things requiring more depth perception than I can muster such as cleaing mirrors (weird, eh?), nighttime driving, and threading a bleeping needle.
While it may sound defeatest, as a caregiver my plan was always to plan for a worst case scenario and then be pleased if it was something less. I also came to understand that caregivers are often not fully understood by even those closest to us. As a result I always just said to myself 'the care of my wife comes first', and while a few understood, there were times many did not, which sometimes even included our adult children (38 and 41).
The second half of my work career I spent as a major gift fundraiser for an international child/family development nonprofit. I grew thick skin at being told 'no' so many times, but that hardly prepared me for many of the comments I received as a caregiver. Seems it is one of those jobs loads of folks who aren't caregivers seem to believe they know all about and feel free to give their two bits! I was often accused of 'seeking attention' when I would simply respond honestly to the question "how you doing?". Again, I began to prepare for the negative comments and was pleased if I didn't get one 🙂
Personally I believe caregiving is a form of love. At times it is grinding, consuming, and doubt-filling, but never doubting one's love.. It can morph into something undoable for any human, but not undo the love. It can deplete one's physical and emotional energy, but never drive one's love to empty. It is a journey unlike others.
Sorry I carried on a bit too much!
Strength, courage, and peace!
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