Rough night

Another day... · August 9

I have been dealing with DH with FTD. I think it has been a slow decline with behavioral variant since 2009. My daughter is now 14. I have raised three teens alone through this. He talks to himself daily, screams and yells, hides or loses items and think there are "others" sabotaging his life. We are honestly very use to this by now but I am really tired. I try so hard to give my kids normal but it never is. He won't sign POA's and I'm so worried that if he needs care, I won't be able to advocate for him or manage it financially. This has been a rough night. Our yard was flooded tonight from storms and support groups, as great as they can be, still can't help me single parent three kids with spouse and mother with dementia. I'm usually really upbeat but tonight...im tired

Jeanne C. · August 9

Ugh - of course you're tired. Your plate is more than full.

You probably know this, but an atypical antipsychotic med (like risperidone or seroquel) can help with the behaviors (I'm guessing he's resistant).

Our elder law attorney was really good about getting my husband through the POAs and got them signed. If there's no chance of that happening, you may need to go the guardianship route. Hopefully someone with some experience there will chime in.

I don't know how you're doing it - I'm only dealing with a husband with FTDbv (no kids or ailing parents) and I'm always tired. I wish I could offer some help, but at least know that you're heard.

Another day... · August 9

Thank you. Yes, I reached out to Elder Atty but they said it would cost 4000 to do POAs and trust. Im trying to get our home in kids names to protect it should I pass first. If he does not sign, I'm out 4000. I cannot access his banking or retirement which is not much but would make medicaid long term not available if he decline more. Guardianship will break his heart it may happen but I think it also makes changing deed into a trust harder. It is hard enough to keep up with bills, school and work and guardianship reports only add to that. Not sure yet. Thank you for understanding. I have no idea how to navigate college for three kids and this. My husband and I were social workers for adoption and foster care almost 25 years. Heartbreaking to be where we are with our own children now.

rplourde50 · August 9

as an empath, feeling your pain. My family isn’t quite in such hard times but I do have a sister with terminal cancer, an autistic (adult) child, and a DW midstage Alzheimer’s and can relate to overwhelming.

Another day... · August 9

https://alzconnected.org/discussion/comment/218568#Comment_218568

Yes, that is a lot for your heart and mind.

FTDCaregiver1 · August 9

wow, and I thought my situation was rough with my FTD caregiver lifestyle, fortunately I got the DPOA signed just before it was to late to sign, but the attorney stepped out of the room so I could scribble DW's last name, the trust happened soon after with DPOA in hand. Perhaps focus on the DPOA only at this time? Can't offer advice, perhaps someone else will chime in on their experience with getting done POA with a resistant LO. Wishing you the very best outcome here,

Another day... · August 9

https://alzconnected.org/discussion/comment/218571#Comment_218571

Were you able to create trust with POA on your own? POA should not be this hard.

Jeanne C. · August 9

I was able to use the dpoa to do the trust. I was also in the process of moving all assets into my name for Medicaid purposes and there was no issue using the dpoa to set up the trust and change the deed.

Another day... · August 9

https://alzconnected.org/discussion/comment/218597#Comment_218597

That gives me hope.

FTDCaregiver1 · August 9

https://alzconnected.org/discussion/comment/218572#Comment_218572

Yes, DPOA was sufficient to complete the trust.

Lucy C · August 15

> @"Another day..." said:
> Thank you. Yes, I reached out to Elder Atty but they said it would cost 4000 to do POAs and trust. Im trying to get our home in kids names to protect it should I pass first. If he does not sign, I'm out 4000. I cannot access his banking or retirement which is not much but would make medicaid long term not available if he decline more. Guardianship will break his heart it may happen but I think it also makes changing deed into a trust harder. It is hard enough to keep up with bills, school and work and guardianship reports only add to that. Not sure yet. Thank you for understanding. I have no idea how to navigate college for three kids and this. My husband and I were social workers for adoption and foster care almost 25 years. Heartbreaking to be where we are with our own children now.

I can at least give you some suggestions on the college part. Above and beyond the possibilities of qualifying for scholarships, it's usually cheapest to start at a 2 yr community college. Apply for FAFSA, and see how much grant coverage can be obtained. Sometimes FAFSA will cover much of the cost. Student loans may be optional. If a student does very well in a 2 yr. program at a local college, it's often possible to obtain very good scholarships and grants for transferring to complete the degree at a 4 yr college or university. There are scholarships specifically for transferring students from 2 yr. institutions. Work study is usually available and can help with at least some of the tuition and expenses. Used textbooks are also often available at reduced rates. By attending the local college for the first 2 yrs, the student can save on living expenses as well.

I know this doesn't help your immediate situation, but I think you'll find that college is not a worry that you need to keep on the front burner. That's another point where your local community college is a really great place to start, because they usually have wonderful admissions counselors who can direct your family to all available financial resources.

Rough night

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