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Meet fellow Caregivers - Introduce yourself

Caregivers | Last Active: Nov 12, 2023 | Replies (707)

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer's. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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Replies to "I have early onset Alzheimer's. I am quite functional and self-supported in an independent living situation...."

Hi again @macbeth. I noticed with my wife the amount of energy she required for socialization at times was not how she wished to spend that energy. Focusing on others, especially as her eyesight, hearing, and cognition declined was highly energy intensive for her, so she chose to limit it.

She also suffered her entire 14 years with debilitating anxiety. I can only suggest, based on my wife's experience with her anxiety, you might want to talk to your medical team in an effort to try and avoid letting the anxiety get too far ahead of any help, which might be able to be provided by medications

Peace and strength,

@caregiver49
Thank you so much for your thoughts. I, too, thought about medical marijuana, and asked about it the last time we were at the VA, and was told that, since the VA is a federal agency, and the Feds do not approve of medical marijuana, even in states where it is legal, that is not an option through them, but, of course, I would be free to pursue that through a private or 'regular' clinic. The doctor at the VA also told me, at that time, that it may exacerbate the dementia. I really appreciate your thoughts and ideas, and agree with them.

As far as the back and forth diagnoses, I also agree with you. I don't want to get political here, but I must, but just marginally. My husband, a Vietnam vet, already suffers from ischemic heart disease, a condition more prevalent among Vietnam vets due to Agent Orange exposure. There is nothing in the make-up of ischemia, that directs it specifically to the blood vessels of the heart, and it seems like a no-brainier, to me, that it can build up anywhere, including the blood vessels to the brain. I have filed claims several times, but, since this has not yet been officially recognized by the government as a result of AO exposure, the claims have been denied. I have explained my position to doctors at the VA, but they always have always disagreed, until, finally, a comp doctor took out a list of recognized Agent Orange exposure related diseases, handed it to me, and told me that those items on the list were the only things she could discuss with me, that, since AO exposure already had been linked to a higher rate of Parkinson's in Vietnam vets, that it could be, and probably will be linked to a higher rate of dementia and early onset dementia in Vietnam vets some day, but that it will be after many more years of testing. In my nasty, little, cynical mind, I'm thinking, "Yeah, you're just waiting for more of them to die to limit your liability." They diagnosed my husband with Alzheimer's, but friends and relatives who have had family members diagnosed with Alzheimer's all agree that whatever my husband has is different. We all feel that they are just trying to limit their liability. And, yes, there may have been recent improvements in the VA, but they still have a long way to go.

So, now you have it...my feelings about the government and Agent Orange exposure. With this, I will apologize to those of you whom I may have offended with my anger and cynicism, and I will try not to bring this up again on this site, unless invited. Really, at this point there is no more to say, except that, I feel so strongly about this that, even if my husband would pass tomorrow, I will continue to fight for Vietnam vets on this issue.

@IndianaScott
Thank you. In spite of his difficulties, my husband is the one who most often wants to go out. We don't really have a medical "team", since the doctors who come to our local clinic seem to keep moving on to bigger and better places, but I will try to find a local doctor who will be helpful in this area. My husband also utilizes a VA clinic, but it is 45 miles away, and they seem, generally, overworked and uninterested. But, I appreciate the advice, and will try to get on that.

@caregiver49, you may be interested in reading this info from Mayo Clinic on medical marijuana http://mayocl.in/2c3X2cz
Additionally you can read some of the insights about medical marijuana from fellow Connect members in these 2 discussions:

- Chronic pain and medical marijuana http://mayocl.in/2c2i9Hx
- CBD http://mayocl.in/2cBCdDn