Newly diagnosed father with Alzheimer's

brookez

Hi all - so glad I found this site. My dad is 66 years old, and I am 27. He is still living on his own. We only recently got the diagnosis (within the past two weeks), and he is in the mild/moderate range of dementia. I live two states away, but my brother is within an hour. I am having a hard time figuring out what to do, what our options are, any advice. This is extremely difficult for me to process as my dad is so important to me, and I was not expecting this to happen at such a young age. I've noticed his memory becoming increasingly worse over the past year. I feel very alone in this and under a lot of pressure. It is not an option for me to move back as I am in graduate school/beginning residency. I don't feel like I have a lot of support or direction right now. Thanks for any support and advice - especially from those who may be experiencing this around my age and how to deal with managing your parent's care along with beginning your own family.

H1235

Welcome. Sorry you need to be here you and your family are too young to have to deal with this. It’s very important that your family to see a lawyer, have a durable power of attorney appointed and just see what they recommend. He will not be safe to live alone in his house for very long. My mom was told at diagnosis she was not safe to live alone. In my opinion it’s best to plan ahead. There can be a waiting list to get into some facilities and they are expensive. In home care is even more expensive. So it’s important to have a good understanding of his finances. There may be some treatment options, but don’t expect too much. At best he might progress more slowly. Dementia is pretty awful so your family will need to decide if this would be a good thing or just prolonging the ugliness. Everyone is different, but I found some comfort in learning more about dementia. It’s sad and scary, but in my opinion better than being completely shocked when he starts showing a new symptom. I will attach a few resources. I’m glad you found our group. Feel free to ask questions, vent or just browse what others have written.

DBAT.pdf

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

notequipped

Just wanted to chime in and add 2 things about the infusion medications. One is that they are not without risk. Personally, I would only consider them if I were young. Your Dad is pretty young though so may be worth serious consideration. The second is that there is a Dr that posts here that was diagnosed at quite a young age. I believe he is on Kisunla and doing quite well. He posts on YouTube under Friends with medical Benefits. I have included a link to one of his posts here, too.
https://alzconnected.org/discussion/74394/newly-diagnosed-physician#latest

Congratulations on beginning residency! Let that be your gentle reminder that although this feels overwhelming, you can do really hard things.

And please don’t delay on getting the legal stuff sorted. People on these message boards have been really helpful and more informative than medical professionals that we have visited thus far. There is also a phone number for the Alzheimer Association - they are staffed 24/7 when you need a bit more than the boards to get through a rough patch.

JesseLee

Can your brother start visiting some facilities? One a week for 6 weeks or so? Somewhere else on here there's a longer post with a great list of questions to ask & things to look for.

Go unannounced. Try to find a smaller place that isn't corporate/ venture cap/private equity owned. You may have to ask them directly, those ownership records can be very opaque.

I also ask which criminal background check service they use, what offenses disqualify people from working there and, importantly, how often they recheck and do drug tests

Your family doesn't want to be trying to vet a place on short notice, or be stuck with the only place that has space if your dad's in rehab or the hospital and they want him out. Ask me how I know.

Good luck, I'm sorry your family is going through this. Oh and Emma Heming Willis' book is good. She was pretty young and had young girls when Bruce Willis was diagnosed. Can your brother take medical general POA and you take financial or something? It's a lot for 1 person.