I’m worried

kymarie

Hello, I’m here because my dad recently got diagnosed with early onset Alzheimer’s. Everyone says “at least it’s early and there’s awhile”.. but we never really know how quickly this disease can progress. I’m worried, I’m going to lose my dad at some point. And I feel guilty too for feeling like my life is going to be uprooted. He lives with his girlfriend, they’ve been together for about 8 years at this point. No plan to get married as they have both been married twice previously. I’m worried she’s going to give up on him, and kick him out. She lived through her grandma and mom having dementia, I don’t know if she can do it again. Anyways, I rent his house from him and pay mortgage and take care of it. It’s been a lot and now the worry of him losing his memory and his gf possibly not wanting to take it on scares me. There’s so many things up in the air, so many things that can happen and I don’t know how to deal with it. I try to find activities for him and get him out of the house as he has been out of work for months now and is applying for disability. I’m not sure what I’m looking for here. Validation? Suggestions? Anything really.

pamu

Does your dad willingly accept your help? At this point, your focus should be getting as much information as possible regarding his finances for his future care (home care or facility). Do you have DPOA? You may want to contact an elder attorney to help assist you. I wish we had done so but I had no idea that they existed until i heard about it on this discussion board. I would not expect his GF to take this on alone. I wouldn’t expect you to be able to do it all alone either long term. One of the things i found eye opening going through this is that my mom’s PCP and even her neurologist were of no real help managing her symptoms after she was diagnosed. She was experiencing agitation, anxiety, confusion and delusions. The real help came from a geriatric psychiatrist who monitored it all and manages her medication . Do you go with him to his doctor appointments? If not, start going. My mom (87YO) was diagnosed about 8 years ago and it’s been a wild ride. She lived alone for a while and had care aide visits along with myself and my sister to help. She qualified for Medicaid so after her last hospitalization she was transferred to MC after a very short stint in AL (18 days). Her progression was slow and steady for a while and suddenly took a nose dive and went into crisis mode. The more info you have the better. I wish I had advice for navigating the emotional part. This forum has been a lifesaver for me and I find myself logging on every day for a daily dose of info and support. Wishing you all the best.

H1235

Welcome. One of the most important things to be done in the beginning is to see a lawyer. Someone needs to be appointed durable power of attorney! Hopefully he is still able to make this decision. I would not put it off. This will force some decisions to be made. If he wants to appoint his girlfriend and she is up for it (hopefully she will be honest with him) then you will just need to support them both the best you can. Dementia is a lot to take on. If she isn’t up for that, I think you should respect that. It’s important to have a plan B in place. If she is able to care for him until …. Then what happens next? Does he have the money to pay for memory care or assisted living (they are expensive)? If not, would he qualify for medicaid (another thing to discuss with a lawyer)? There are a lot of things to think about and plans to make in the beginning. It’s also important to learn all you can about dementia. Understand how to interact with him and what symptoms might be coming next will be helpful. I will attach a few resources.

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

SDianeL

So sorry about your Dad. As others have posted, see an attorney asap! Within 6 months of us seeing an attorney my husband could no longer read and understand documents or sign his name. Please don’t delay. Read the book “The 36 Hour Day” and come here often for info and support. We understand how you feel. You are not alone. 💜