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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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A Fantastic comment - I agree entirely - I am close to a family where the 90 year old mother is clearly defined as being in step 7 - the possible final step / and the brothers and sisters still debate instead of taking love and care as a remedie
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2 ReactionsMy husband is suffering with the loss of memory due to Alzheimer's about nine years. What is the definition of the steps referred to in your post mbabkk?
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1 ReactionHi @virginiatc and @mbabkk I would be interested in the steps you refer to as well, mbabkk. I am not familiar with this idea and would like to learn about it.
Strength, courage, and peace to all caregivers!
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1 ReactionMy heart goes out to you and your family. It is a difficult disease for all involved. I don't know what I'd do if Didn't have family & friend's support. I'd like to join the discussion. My husb has PPA Alzheimer's. Not caused by stroke.He hasn't been able to "find his words" since initial diagnosis. Won't try to speak. Very aware of his illness. Gets embarrassed.
Cannot write. I'm grieving a loss. Trying to take one day at a time. We both have good & bad days. I cherish days he feels good. Sorry to be ranting. Caregiving is PATIENCE. Looking forward to sharing my ideas and hearing others. Diana
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1 ReactionHello @dianajane Nice to e-meet you here, Diana, in the Caregivers discussion group on Mayo Connect! I am sorry to read about your husband's diagnosis. I am Scott and I fully agree it is a very difficult disease. I have hard it called 'the long goodbye', which in my mother-in-law's case was certainly true.
One day at a time is the only way I knew how to make it while I was my wife's caregiver too. There was no other way to avoid the feelings of being overwhelmed with all the caregiving tasks, needs of my loved one, and the grief I was feeling all the time. It is also certainly a path of huge highs and lows. A crummy rollercoaster of the worst variety I believe!
I agree with you that caregiving takes huge amounts of patience! Often I found myself at my wits end and my patience shredded by those bad days you reference. All a caregiver can do is there best -- as I often say 'Superman and Wonder Woman only exist in the comics. There are no Superheros in caregiving and we each need to remind ourselves of this from time to time!
The thing I love most about Connect is the ability to share and be listened to by a community of caring and concerned fellow caregivers! I look forward to hearing more of the ideas you want to share with us all --- we can all use all the help we can get!
Strength, courage, and peace!
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2 Reactionswell I should join this group as well as the cancer group I am already writing to about my rare form of leukemia.!st my mother with her imaginary people all over INSIDE her house. Her shrink told me most people have them on the roof,but she had to invite them in. It was almost comical until she switched them from angels and fairies to devils and gestopos.Next came my sister who was so upset when her son died,she stopped taking her thyroid & diabetes medications.Then she became my problem.The fun part was the mantra she chose to call out all day starting softly and ending with a screen. The word she chose was HELP! This went over big in the care home ;so the evicted her.Next was my husband who had 7 strokes caused by A Fib. He became quite child like except for his saxophone ;which was almost as good as when he was playing professionally.(aka MUSIC & THE BRAIN by Sachs)Five years later he passed on and as a friend told me,I became a member of the unofficial widows club. A year later I acquired a "boyfriend" who is now 90 and has dementia. I hope it's not contagious.LOVE TO YOU ALL,Barbara
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2 ReactionsME AGAIN. I didn't mean to imply that my husband lived only 5 years with the strokes. It was 17. He volunteered at the local senior center playing music from the 40's. needless to say I was not the only one to miss him.
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3 ReactionsPlaying music to Alzheimer’s patient is proven to be a major help.
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2 ReactionsVery nice comments that would be valuable to all caregivers “one day at a time - thank you so much
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3 ReactionsI am fairly new here and only a supporter of a full time caregiver of her 90 year old mother who is in stage 7 - it is so complex to outsiders to understand - I try my best but it is a huge challenge to be the main care giver.
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