Looking for support for Father

Louray920

My father was initially diagnosed mild dementia but was further diagnosed with Alzheimer's. He has expressed concerns and fears surrounding the diagnosis and the stigma associated with it. I have let him know that my sisters and I (his daughters) are there for him as well as the rest of his family. I tried looking at for a support group for him because I know he still remembers a lot and is not at the later stages of the disease. I just would like to know are there groups out there for people with the disease who are at the beginning stages of it. I know that it is overwhelming for him to know that he will lose his memory, independence, and other capabilities and that it is something that you can't stop it. Also, the idea that it takes years is scary. I know it is hard for him to have the negative outlook and the prospect of it happening. I don't want him to feel fearful of it or alone. I get it. The thought of the decline is scary and not pleasant.

H1235

Many people, even in the early stages have anosognosia (don’t recognize their symptoms or limitations). Some are not even able to accept the diagnosis from a doctor. For these people nothing will convince them there is something wrong. I’m sure this is not always the case, but probably often enough that finding a support group with his peers might be difficult. My mom knows she has dementia ( on good days), but believes she is in the very very early stage and other times says the doctors made a mistake. She would not be able to speak of her frustration with symptoms, since she believes she has none. When she is able to acknowledge she has dementia, she has expressed concern and worry. She has talked with a counselor, but I’m not sure how helpful that has really been. I think she spends most of that time complaining about how unfair it is that she has lost her independence (or rather that I have taken it away). Assuring mom I will be there for her through all of this is not helpful, since she believes I’m the one causing all the problems. Dementia is brutal!

Louray920

https://alzconnected.org/discussion/comment/283894#Comment_283894

Does your mom ever express worry about what the future holds in terms of the progression of the disease. My dad has some denial of it but I think him admitting to the fact that it is a scary diagnosis and his worry about it is start. I guess for me, I don't know if for him if knowing someone else who is in a similar situation has similar fears and worries if that would help him feel less alone in having the disease or feel like it’s a normal reaction. It’s something that unfortunately there isn’t a cure. I mean there are things that we can do to slow it down or manage it so to speak, but there is no stopping it. I get it too that it is hard not to go to the negative thinking when dealing with a disease that takes away your ability to be independent and function normally.

Maru

I suggest a different approach. Since he has valid fears and anxiety, a therapist might be a better option. Rather than sitting around with a group of people supporting and adding to his fears, a therapist might be able to help him cope with his fear and anxiety. And…many caretakers have found that putting the POD on an antianxiety med is helpful.

caregiving daughter

I went to an Alz support group awhile back. Interestingly, there was a couple there and when they introduced themselves, it was shared that one of the spouses was diagnosed with early onset. It was early such that the individual could discuss their diagnosis, their emotions, and initials modifications to daily living. It was explained to our group later, by the moderator, that an exception was made at this meeting to allow them to attend. Rather, separate support groups existed for pwd. I get it. I quite honestly could not have been open with my feelings about caring for my mom when she was extremely difficult. My heart went out to the pwd and I didn't want them hearing about middle stage behaviors, etc.

I would suggest you call the 1-800 for Alz and inquire on where you might find an in person group that would allow your dad to attend. He deserves all the support in the world and he is fortunate to have such a caring family.

H1235

https://alzconnected.org/discussion/comment/283917#Comment_283917

Mom lives in a nursing home. There have been a few times when she has said I hope I don’t ever get that bad (when referring to another resident). There are other times she seems unaware that other residents strange behaviors are probably dementia related. Her roommate is probably at about the same stage she is. I get the impression their conversations are more - my daughter won’t let me do this, she won’t bring me to my house, I don’t understand why I can’t go home, the darn tv remote is not working again, my daughter won’t tell me anything about my finances. I can’t even imagine any of these conversations- it’s so hard for me to follow the plot in a book these days, I can’t remember … I’m so frustrated, I wish I was still able to understand my financial situation, I’m having trouble using the tv remote and that’s upsetting… I think their conversations are centered more on the injustice of their situations and how unfairly they are being treated. Maybe they have discussed their fears of what the future holds for them with a dementia diagnosis, but somehow I just don’t think so.

caregiving daughter

H1235—You made me smile. While in mc, my mom once said, "…and you think my memory is bad, look at these people". She had no idea she was in mc.