Stuck & Need Some Hope

Journey813

I am and utilizing as many resources as I can to try and get my mom to possibly get into a memory care unit or home health care. She is starting to get more aggressive I feel like I am in an abusive relationship. I don't know what my day is going to be like good or bad. We are still working with adjusting her medication so that she is less irritable and pacing. The medication only works to get her to sleep at 4:00 p.m. and she does stay sleep until 11:00 or midnight. I have no idea when I will be able to return to work and it looks as if Medicaid is trying to say that she is over income to qualify so I am going to have to reach out to elder lawyer. Has anyone kept a parent in their care without them going to a nursing home? If so did any medication help with the wondering and aggressiveness? How is or was your experience in the mid-late stage? I keep thinking, did I make a mistake and is this really going to be my life? I am stuck in the house in my living room watching her 24/7. I get time to myself from 5pm until around 10:00pm but I am still stuck in the house. With her hallucinating all day, I don't take her around people. I need some positivity at this point.

shiawase12

I'm so sorry you are dealing with all this. I can only imagine how hard it is when she is mostly combative with you. Then to have all the other matters on top of all that, the legal matters, the financial matters etc.

I would definitely see an eldercare attorney as soon as possible.

Do you have POA? I would be looking into how to get all such legal documents in order as soon as possible.

Although I'm on this site now because my husband has Alz, previously I dealt with my mother with her Alz. I never had her living with me though. I convinced her to come live near me (at the time she was in Vt and I in WA), but it took me a year to convince her. She initially went into an assisted living facility, but it wasn't long after that where it became clear she needed more memory care assistance. When that move took place I did it all behind her back. Made arrangements for the move even to the extent of telling the movers where exactly to place the furniture in her new rooms at the new facility.

I told her I'd pick her up in the morning for a girls day, lunch, manicures etc. Late in the afternoon I took her home ... to her new place. She adjusted to the change after a few weeks.

Sometimes we have to fib a bit to do what is the best for them and for us for that matter. We need to keep us both safe and as healthy as possible.

Be kind to yourself and keep coming here to share, vent and get advice.

I'm sure others will chime in with some great advice soon enough.

In the meantime, know that I'm thinking of you and sending hugs.

CharlieS

fna813, that’s some tough duty you’ve described and I’m sorry you are in this position. @shiawase12 has given you some great advice. In addition to that since you said you have looked at lots of resources already, perhaps you already know about CarePatrol and CareYaYa. If not, look those two up and see if there are resources in your area that might help. I haven’t personally used these resources yet, but they are in my back pocket if and when I need them for my DH.

Journey813

https://alzconnected.org/discussion/comment/278342#Comment_278342

Thank you. She is unaware of her surroundings so much that she wouldn't know she is in a home. At times she acts like she thinks she in one now. She doesn't know who I am. Her words are so jumbled when she speaks we can't have a conversation. I have POA and will call the attorney. Medicaid letter response advised me to get with attorney to do something with my mom's income as it may be too much. I didn't understand it but I will call. I'm on waiting list for elder care waiver as well.

H1235

Som facilitates can have a waiting list. I would look into some options for care and get her on a waiting list. You don’t want to get Medicaid approved only to have to wait 6 months for an opening. You might also want to call your local commission on aging. They may have information about a day program (or other helpful services) you can take her to, so you can have a break and maybe check out facilities.

jgreen

Dear @fna813

Ask the attorney about a Qualified Income Trust and to explain how that works.

They may have you contact your Area Council on Aging or Elder Care office and to request a screening. Here is how I understand that works - The screening is over the phone and it takes about an hour. The screener asks financial information, medical questions about your mother and questions about your own health as her primary caregiver. Depending on her score, she may go on a wait list (you want this!) for services. Once she gets to the point that she is off that wait list and ready for services, you will apply for Medicaid to help her care. In Florida it is either in-home services or skilled nursing home (not memory care unfortunately)

In the meantime, if your mom has traditional Medicare Part A & B she can most likely be eligible for the GUIDE Program where Medicare will pay for respite services up to a cap of $2500 per year. That could help pay for some adult day care time or even a sitter to come into your home for 4-6 hours to give you a break. It is a PROCESS to get enrolled, so the sooner you start, the better. I am going to attach a link so you can find a provider in your area to get going. Use the Provider list in the right column to get started.

https://www.cms.gov/priorities/innovation/innovation-models/guide

I hope you are able to get some relief. This is going to take some effort on your part, and I can see in your post you are pretty worn down. We are here to support you and cheer you on. You can do this - one step at a time. Take care and stay in touch.

Hugs 💝. You are one terrific daughter!

Journey813

https://alzconnected.org/discussion/comment/278374#Comment_278374

Thank you so much. I did the screening last week. Actually they said it could take up to a year. In the meantime if I qualify for something then someone will reach out to me. I will contact the attorney to ask them about that. And yes she does have Medicare part A and b and a Medicare advantage.

jgreen

Best to check what type of Medicare she has. I am not sure she can have both - it is either traditional (part A and B) or an Advantage plan. If Advantage Plan she will not be eligible for the Guide Program. Check to see what type of in-home services an Advantage Plan will cover if she has that type of plan.

And you are welcome. I had to call our attorney to get this straight. First visit she had so much info to give me I couldn’t retain all of it! 😳. So much to learn and when you are under constant stress and exhaustion it is even more difficult! We’re all doing the very best that we can.

I hope someone can offer advice on meds for aggressiveness. My DH is not there (and I hope it stays that way).

Journey813

https://alzconnected.org/discussion/comment/278382#Comment_278382

Oh I forgot about the fact that she does have a Medicare advantage plan and I know open enrollment is coming up soon so if I need to drop it, I can. Her plan will only cover HHA or long-term care if she is in the final stages and unable to do anything basically she would have to have a feeding tube or some type of medication that a nurse would need to administer in order for them to cover it. This looks like it will be a long process. I will be able to extend my leave of absence from work but I scared of loosing income for that long.