Caregiver support and dementia: What are your book recommendations?

Posted by proff @proff, Jan 28, 2021

One of the best books for caregivers is one by Martin Schreiber, Wisconsin's former governor whose wife, Elaine, had Alzheimer's and for whom he was caregiver. In the book, My Two Elaine's: Learning, Coping, and Surviving as an Alzheimer's Caregiver, he tell caregivers everything he wished he had known and nobody tells you. It is available on line, is large print, and is the best read I've had.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@kristin816

She is getting very stressed about my father’s behavior- the fact that some times he is ‘normal-ish’ and other times can’t remember anything- ugh! It’s wearing her down

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I can imagine it is wearing her down. Does she have any health issues of her own to contend with too?

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@colleenyoung

I can imagine it is wearing her down. Does she have any health issues of her own to contend with too?

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Yes - she is recovering from brain injury in 2016- and deals with Afib, hypertension and anxiety... I got her to try tapping to relive her anxiety and so far it is working a treat! So that is good!

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@kristin816

Yes - she is recovering from brain injury in 2016- and deals with Afib, hypertension and anxiety... I got her to try tapping to relive her anxiety and so far it is working a treat! So that is good!

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Thank you for reminding me of tapping. It seems too simple, but it really can work.

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@kristin816

Yes - she is recovering from brain injury in 2016- and deals with Afib, hypertension and anxiety... I got her to try tapping to relive her anxiety and so far it is working a treat! So that is good!

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Hello @kristin816

I would like to join @colleenyoung in welcoming you to Mayo Clinic Connect. It sounds as if you are doing an exceptional job in caring for your parents. I'm sure it is challenging at times!

I am a mentor for the Parkinson's discussion group here on Connect and we have several discussions on Lewy Body Dementia in that group. Here are some links where you can read what other members are saying about LBD.
https://connect.mayoclinic.org/discussion/lewy-body/?commentsorder=newest#chv4-comment-stream-header
https://connect.mayoclinic.org/discussion/lewy-body/?commentsorder=newest#chv4-comment-stream-header
I too am registered for the May 3 webinar on LBD. I'm hoping to increase my understanding of this disorder that seems to be gaining recognition with diagnoses as well as treatments.

Kristin, you mentioned some of your father's memory problems. I'm wondering if he is also experiencing physical problems with walking, balance, swallowing, etc.?

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@hopeful33250

Hello @kristin816

I would like to join @colleenyoung in welcoming you to Mayo Clinic Connect. It sounds as if you are doing an exceptional job in caring for your parents. I'm sure it is challenging at times!

I am a mentor for the Parkinson's discussion group here on Connect and we have several discussions on Lewy Body Dementia in that group. Here are some links where you can read what other members are saying about LBD.
https://connect.mayoclinic.org/discussion/lewy-body/?commentsorder=newest#chv4-comment-stream-header
https://connect.mayoclinic.org/discussion/lewy-body/?commentsorder=newest#chv4-comment-stream-header
I too am registered for the May 3 webinar on LBD. I'm hoping to increase my understanding of this disorder that seems to be gaining recognition with diagnoses as well as treatments.

Kristin, you mentioned some of your father's memory problems. I'm wondering if he is also experiencing physical problems with walking, balance, swallowing, etc.?

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Hello - Yes he has trouble walking a straight path - he kinda darts sharply to the left or right when walking - and cuts you off if you are walking next to him. He had a couple of falls in 2019 - when he had to do something "quick" (in his mind) swallowing/ choking while eating has been a little issue - but has not become a big problem. Looking forward to learning more on Monday.

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Hello @kristin816

Hello Kristin, I hope you were able to watch the LBD webinar today. I learned a great deal from the presentations. Did you learn anything new as well?

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@hopeful33250

Hello @kristin816

Hello Kristin, I hope you were able to watch the LBD webinar today. I learned a great deal from the presentations. Did you learn anything new as well?

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Yes - This was a great webby - I did learn lots - and I am glad that there were a number of websites also given for more investigation, tools & tips. The biggest idea for me was to consider adding a drug (name in my notes) as an allergy to my fathers medical record - so he is not accidentally given it in the ER .... I thought the whole webinar was great - I look forward to reviewing the recordings and hope to see more like this again. AWESOME!!

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@kristin816

Yes - This was a great webby - I did learn lots - and I am glad that there were a number of websites also given for more investigation, tools & tips. The biggest idea for me was to consider adding a drug (name in my notes) as an allergy to my fathers medical record - so he is not accidentally given it in the ER .... I thought the whole webinar was great - I look forward to reviewing the recordings and hope to see more like this again. AWESOME!!

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I'm so glad you were able to attend, @kristin816. Yes, I found this a very worthwhile presentation as well. I was especially interested in the information about sleep and how uninterrupted sleep can help with any form of dementia.

Does your dad have sleep problems?

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@hopeful33250

I'm so glad you were able to attend, @kristin816. Yes, I found this a very worthwhile presentation as well. I was especially interested in the information about sleep and how uninterrupted sleep can help with any form of dementia.

Does your dad have sleep problems?

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Yes - he does have that RUN sleep disorder - and so far we are able to manage it with busy days & a time-release melatonin tablet at night (we tried a few different ones to find one that worked for him). Interesting - when he is "too busy" or stressed about the next day he has trouble sleeping thought the night. So we are working on finding a balance of activity - enough to sleep but not too much to stress him out.

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@kristin816

Yes - he does have that RUN sleep disorder - and so far we are able to manage it with busy days & a time-release melatonin tablet at night (we tried a few different ones to find one that worked for him). Interesting - when he is "too busy" or stressed about the next day he has trouble sleeping thought the night. So we are working on finding a balance of activity - enough to sleep but not too much to stress him out.

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What a great plan. I agree with you, @kristin816, there is probably a fine balance between providing distractions and having restful times.

I am glad to hear that the time-release melatonin is working well for him. If you don't mind sharing more, how soon, before bedtime does he take the melatonin?

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