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@dianajane

My 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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Replies to "My heart goes out to you and your family. It is a difficult disease for all..."

Hello @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!

Very nice comments that would be valuable to all caregivers “one day at a time - thank you so much

I 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.

Good morning @mbabkk Being supportive of a main caregiver is huge! I can say this as a well seasoned main caregiver for over 14 years for my wife. I have always said I'd be a rich man if I had a nickel for each person who said to me 'take care of yourself' and then left without offering me any assistance or support. Only two people did support me through our journey and they were truly invaluable and worth their weight in gold! Don't ever underestimate your value to the caregiver you support!

As for trying your best -- that is all anyone can do!

I wish you continued strength, courage, and peace.

Thank you so much - it is not an easy task as I am an outsider to a large degree justvtryingn