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Caregiver Heroism and Unanswered Questions
Having recently become an active participant in Mayo Clinic Connect, I got up very early to write something that would at once pay tribute to the heroes and heroines that have brought me so much insight into how to deal with my wife's progressive dementia and then pose further questions.
A horrible typist, at 88 ever worsening, I had composed about a page and a half which my ineptitude somehow erased. Tempted to abandon the effort, I instead struggle to send a highly condensed version.
First, the discussions over the past few weeks have taught me some fundamentals, based on your dealing with situations even graver and longer than I have withstood. The maxims several of you have eloquently expressed have already served me well as follows: (1)self-conrol of my responses to my loved one's involuntary abuse. (2) finding ways to maintain one's own health and thereby be most effective as caregiver by changing "mindsets." (3) Reaching out to others for advice and help, not least MCC, rather than struggling alone. (4) While having a right to feel sorry for ourselves, taking consolation that other have it much worse and blessing the remnants of life that we still possess.
Those principles, however, take us only so far, attested to by the ongoing tribulations of the caregiving community. Agonizing quandaries remain.
Though my wife and I give thanks every night for the blessings we still have, he dementia is accelerating rapidly, eroding my capacity to manage the ever-burgeoning responsibilities I face. It is strange to fervently wish for more years together but to know that if we are granted this gift,how tortured the remaining times may be.
Though no one can forecast the future, I dare to call upon your own experiences to guide my expectations. My wife 87, and a survivor in so many ways, was definitively diagnosed with dementia some 18 months ago , which foretold total eclipse of her short-term memory and other cognitive dysfunctions. She clings to the illusion that she's
simply the victim of old age. This as helpful correspondents have pointed out, is itself a disease: Anosognosia. Would it serve any purpose to try to disabuse her of her illusions?
MCC has furnished me with a variety of partners in care to admire and emulate. Up to now, delusions and fantasies and sporadic conflagrations aside, we're doing reasonably well. BUT how long will this last? The quest for "balance" is of necessity slipping, my exhaustion on many days frightening. Sleep broken by hallucinaions of my wife calling out for help. I try to play down this toll on me so as not to induce added guilt and anxiety for her. Is this a good strategy or will I end up paying the ultimate price?
Though I know the wisdom of the maxim, expressed eloquently in these pages, that we can only focus on today, the future's not ours to see. But frankly I'm scared....The advice of others who have felt this might help a lot.
Faithfully,
Tom G.
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@judimahoney
Hi Judy thank you for being so open about your experiences.
I’m knew to this! I’m the one that has early Alzheimer’s
My husband is having a hard time with this. How did you get into support groups I’m trying to hv myself and my husband find a good one for both of us.
Thanks for all you shared!
JoyceL10
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4 Reactions@joycel10
Hello:
You may want to start with calling the Alzheimers Association if you haven't already. They can hopefully help you find a local support group.
We have a monthly support group through our medical group. We are also in a dementia research study, and I am in a support group with other participants.
Perhaps your local Council on Aging or Senior and Disability Services will offer more resources.
All the best to you on this unusual journey. 🫂
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6 Reactions@vijay26
Thanks so much for caring. I do get respite one afternoon a week, over my wife's protest, and it helps a lot. Especially vital to sole caregivers.
Tom G
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3 ReactionsTom, you are not alone on this journey. All of us dealing with this disease with our loved ones have the same fears and anxieties as you do. All we can do is make it through one day at a time…some days are good, some are bad and some are really bad…but we keep on going. Our goal is to ensure our loved ones are taken care of. It’s not easy, some days are really hard. Like you, I pray for many more years with my husband, but then I also realize, short of an amazing miracle of healing, those years will be even more difficult for both of us. This was not how we envisioned our retirement years and yes I sometimes feel down right sorry for us, but then I eventually pull myself up and carry on. One of the things that helps me to do that is knowing that we are not alone on this journey. I am thankful for Mayo Connect and other support groups I participate in. I have learned so much from sharing with others how to not only survive but also to thrive. To appreciate the sweet days and how to maneuver through the hard ones. There is strength in numbers Tom. Stay connected. God bless you and your wife.
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9 ReactionsThank you for sharing this helpful information. I will discuss this with his PCP. Happy this helped your husband.
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3 Reactions@dlssell
"I see his smiles resulting from the happiness he feels sharing this disease with me with no fear just comfort. The more of me I give to him brings me enough joy for us both. "
I loved this. I find that people cannot imagine that this confluence of suffering and joy is possible until they witness it and have it expressed to them. Experiencing it is a gift. I think that we can make the world better by sharing this wonderful mysterious dynamic that can rise amidst loss. Others are lifted by learning of it.
Thank you for sharing.
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6 Reactions@memoriestomoments
We’re all warriors, struggling, in this journey together..it’s the smile of our loved ones in the midst of their fear, that should encourage us to keep on going, day by day..day by day
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7 Reactions@dlssell
Absolutely..thank you.
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2 Reactions@judimahoney
Thank you
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