Caregiver support and dementia: What are your book recommendations?

How do I participate. I guess I just click on the web site. Also is their a link to tell me what the discussion topic will be?

Hi Virginia, please note I removed your personal phone number since this is a public forum.

Why don't you start by clicking the link below and joining the discussion about communication?

– Communicating Challenges With Lewy Body and Dementia https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/

My husband (89) recently was diagnosed with dementia - a lot more tests coming in mid September. He also has CKD (kidney); Enlarged Prostrate; CVI among other health problems - 7 prescriptions at present time. For the past 8 years he has had REM Disorder - which doctors didn't mention or maybe pick up on. I've learned to sleep on the edge of the bed and at sometimes had to sleep in another room or on the couch. Last night he had another episode. The lashes out, talks in his sleep, remembers his dreams but doesn't remember moving. He also hears music (songs, etc.) - all started happening about the same time. Problems with using technical equipment (remotes, PC, phone, etc.) started a year or so earlier than the REM. From symptoms listed my guess is Lewys Body Dementia. Daughter disagrees whole heartedly.
Recently almost constant anger issues - was put on Seroquel, which took over a month to kick in but now helping dramatically. He was taken off Clonazepam, which I understand can actually help with REM disorder. He has always had sleeping issues. He wants to go back on the Clonazepam so I dropped a note to his doctor that took him off. Melatonin has never helped him - nor most sleeping pills, either prescription or OTC.
He was 6' and 200 pounds (lost height and some weight) while I'm 5'3 and about 105 pounds - I don't do well when he is thrashing lol.

Dr said he could go back on the Clonazepam but at small dosage and as needed for sleep (so Bill figures every night!). Also said he is not to go to bed until 8pm. He made it until 7:30pm last night but I kept the light on until 8pm. He did end up sleeping well - or at least no thrashing. Yeah!

Thank you for the great book referrals! My husband was diagnosed with Lewy Body Dementia in 2020. Although I saw signs of dementia about 2-3 years earlier when I retired. The book that our neurologist referred me to since I am religious was Finding Grace in the Face of Dementia. The author is John Dunlop, MD. He not only was a doctor to hundreds of dementia patients, but was a caregiver himself for his wife. The journey of caregiving is a long one, but I find it is making me a much better person.

Hello All,

Here is a book recommendation for caregivers of Alzheimer's patients:

Winter Stars by Dave Iverson.

Dave became the full-time caregiver for his mom and at the same time, he was developing Parkinson's. Here is a link to an interview with the author by the Davis Phinney Foundation,

The book Creating Moments of Joy For the Person with Alzheimer's or Dementia by Jolene Brackey is excellent. In spite of the title, I think it is excellent for all caregivers. Caregivers and their loved ones face difficult challenges and it's great when as a caregiver you can bring a moment of joy to your loved one and, as a bonus, to you too. Turn on some good music. Look at the beautiful flowers. Both of you can go outside, feel the breeze, watch the fluffy clouds go by! Bring some positive, joyful feelings into your lives!

Yes, these are all wonderful ways to make memories. I have another way to calm my husband: he loves it when I give him a back rub.

I also recommend The 36 Hour Day by Nancy Mace and Second Forgetting by Benjamin Mast. As a person of faith, I found Second Forgetting, not so technical but personally affirming and encouraging.
So far, I have found nothing that has all the answers or tells how to solve our issues, which are as varied as we are. But I gain something from everything I read. I also recommend Teepa Snow’s videos on YouTube, Facebook, and TikTok.

Thank you for the reading material for us caregivers. Like you, I do get something helpful from what I read.