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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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Yes Tom, in sickness and in health…a covenant honored each day of our 52 years…keep the courage and hold to your faith,..I believe God is near, God is good, and God is enough…always here for you and all the heroes.
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4 Reactions@pierwell
Sundowning can be frightening to the patient as well as the care partner. After several anger and uncontrollable episodes, and much to my reluctance, we have started my husband on half of a low dose sedative. The medication has helped him to be calm and less restless during Sundowning. Perhaps discuss this option with your Dr. since my husband is now in palliative care with our PCP. God bless you both.
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5 ReactionsHave you read The 36 Hour Day? The book will give you a lot of insights into the disease.
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6 Reactions@pierwell When others tell you that you lease listen to your inner voice when "...Everyone says I need to put him in Memory Care...", as you know best how your marriage works.
But please also keep an open mind as change sometimes rapid and catastrophic, is a constant in memory loss. To that end, it is a good idea to have visited several facilities and found one or more that are acceptable for you.
Are you still able to get a good night's sleep, or must you be "on guard" 24/7 due to night wandering and potential dangers? That is the point at which, for his safety and yours, you might need to consider either Memory Care or an overnight helper.
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7 Reactions@judimahoney Judi you are an inspiration to me! Thank you for always reaching out. The things you've shared have been so valuable! Best Krala
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3 ReactionsDear Tom, I can empathize with your feelings so much. My husband is now in stage 6 on the FAST scale. If you don't know what this is, you can look it up on the internet. Basically it is a tool that healthcare providers use to determine where a person is in their dementia journey. It has helped me identify where my husband is on that journey and what to expect as time goes by. This allows me to form some sort of care plan ahead of those changes. This is an awful disease that robs us of our loved ones and challenges us as caregivers. I was not getting a complete nights sleep and knew that if I didn't I was going to fall apart and be useless as a caregiver. I hired a caregiver to sit in my husband's room from 11pm to 7am so I could go upstairs and get a full night's sleep. That has enabled me to carry on during the day. What has helped me immensely was to educate myself on dementia caregiving. I took four courses live online from Teepa Snow's Positive Approach to Caregiving website. I took the Champion series. You will learn so much and I believe that knowledge is power. Besides teaching you how to interact positively with your wife, it addresses the feelings that we caregivers have: frustration, fear, guilt, feeling overwhelmed, etc. And gives you ideas as to how to manage those feelings to protect your mentally and physical health. I am glad that you have found this web page so that you can get some support from others that are struggling with dementia caregiving. Keep posting here. It has been my experience that everyone has been supportive and has given me their thoughts on questions /dilemmas that come up for me. May God bless you and your wife.
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8 Reactions@sueinmn Thanks for the advice.No wandering so far. 🤞🏻
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4 Reactions@ams
No but I intend to…thank you.
@dlssell I stopped my husband's sundowning by giving him 10 mg of melatonin at 4pm and another 10 mg dose at 9pm. Before that he had wandered off on my 22 acre property in a forest during the night and was found face down in the dirt with hypothermia. After that, he only sundowned once when my son forgot to give his the first dose until 6 pm.
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4 ReactionsTom G:
Sorry to know what you are dealing with.You need
"Respite care". There are caregivers, who if hired or sent in by Hospice agency, that can provide you a break in caregiving.
I need one for my husband who is 81 and is my only caregiver now.
Please call Dept of Aging in your State and get help.
Hope this helps.
VJ
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8 Reactions