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My husband is 59 years old and has been diagnosed with dementia that was likely brought on by multiple football concussions. He’s a big guy. He is reverting to very childlike behavior and has not infrequent violent outbursts. He has never touched me in violence but will ball up his fists and scream in rage when he gets frustrated. We live in CA, his daughters live in NY and GA and his siblings live in MI. We are alone in CA. I work full-time. He is not eligible for SSI or SSDI. I need to make a plan for when his Demetria progresses to the point where he cannot stay at home during the day by himself, through the time that he may need to be in a facility if he becomes physically violent. There’s so much to think about. Is there a checklist of things I need to be doing now. Anyone know of a good guidebook?

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Wouldn't it be great if there was a checklist that we could refer to to make the caregiving job less stressful and more predictable? Concussions by themselves do not cause dementia, but can increase the risk of getting dementia. Dementia is not a disease, but its symptoms can be caused by various diseases or even conditions that are treatable. Has he gone thru a complete clinical work up to eliminate treatable causes for his dementia? At his age of only 59, and all treatable conditions having been dismissed, early onset Alzheimer's is a possibility.

So, no, there are no checklists, but there are many books, YouTube videos and websites that can help you. Learn as much as you can. Three books I recommend are “Surviving Alzheimer's”, “The 36 Hour Day” and “Learning to Speak Alzheimer's.” All are written for the caregiver. You can search “Alzheimer's” on YouTube or search the internet for “Alzheimer's”.

Local agencies are a great resource for dementia caregivers. Your Area Agency on Aging and State Dept of Aging can help. Give them a call. Have you considered an Alzheimer/dementia support group? The Alz Assn can help you find one (www.alz.org).

If you're planning ahead and considering care facilities the below link can help.

https://www.dementiacarecentral.com/caregiverinfo/choosing-a-care-facility/
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Jsaada5757 Jun 2021
Very helpful. Thanks.
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Have you received recommendations through the services that have given you your husband’s diagnosis? Have medications been considered? Does he have current medical follow up?

If the diagnosis has contained a sequence of management tools/suggestions you should be able to start with that.

Your safety is certainly a critical concern, because it sounds as though his filters and ability to self-limit seem to be significantly compromised.

If he played for any sort of organized teams, there may be some sort of help through them.

You will see “safety” mentioned here often. In your case, be sure you are considering your safety in decision making too.
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Jsaada5757 Jun 2021
Thanks. We are switching insurance this month because the experience at Kaiser has not been good. His PET scan and clinical diagnosis is left and right frontal temporal lobe degeneration. Early onset Alzheimer’s was mentioned as was Dementia. His doctor would not prescribe any meds except Gabapentin for his headaches. He revise to consider meds to try to slow memory loss. No help with services. Horrible health care for his issues. I am researching neurologists in the new network.
He played football in high school and college. Only 2 weeks in pro ball and no concussions there so he’s not eligible for those programs.
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How is he not eligible for Disability? Have you worked with a disability attorney?
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Jsaada5757 Jun 2021
He didn’t worked enough in his last insurable year. Yes, I spoke to a disability attorney. It’s a big crack in the system.
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