Only Child Stuggling 2 weeks in as CareGiver For My Mother w/Dementia

ewilli76

Hello everyone, I have a friend we referred me to this forum. I hope this will be a great outet for me as I am just a ball of meltdowns everyday. An ER viist on Dec. 14 turned into a week stay in the hospital afterwards my life changed forever. My mom was dx with early signs of Dementia 2 years ago with mild memory loss. She was still able to live by herself, grocery shop, give herself meds etc. It runs in the family as her mom had it as well. The Neurologist started her on a low dose of meds to try to slow the progression. Because I live in another city 2 hours away, I didn't pick up on signs that things had really started to change because she definitely was able to mask it when I would come to visit. What landed her in the hospital was her Potassium/Sodium lab values being critically low. Those things also affected her cognitive even more. She now doesn't recognize me as her daughter most days which is disheartening to me everyday. She just tells people she is here with some lady or she may say my name but that I have the same name as he daughter. The other thing is because we were at the hosptial for a week she no longer can associate her apartment. She didn't recognize my house either when I took her there for Christmas after the hospital discharge. The Case Manager while we were still in the hospital tried to help me get her into some kind of placement, but the insurance denied saying she is too independently high functing from an ADL level. I tried another state program that would be more for home services and allow me to also be able to look at an adult day care program during the day because I still have to work and they also said she didn't qualify. I really don't know what to do. She says she isn't going to move with me because she can take care of herself which she cannot live by herself any longer even though she thinks she can and legally I can't force her to go but I have to work. It is a challenge because she has always been so independent and lived alone, but I can't stay down here forever. I just don't know how to get some help. She is so nice and kind to everyone else, but when it's just the two of us and she is so mean to me and all I'm trying to do is take her of my mom the best I can. This is all new for me and I just don't know what to do. I just keep hitting a dead end. I do have a Dual POA that we did back 2021 because I started handling her finances back then, but I don't have anything else over her. Right now we are going back and forth from my house to hers which I know isn't healthy but I have to keep these doctor appointments she have down here for now as well until I get something figured out. We are in Tennessee. Any help is greatly appreciated because I feel so lost right now.

Anonymousjpl123

@ewilli76 you have definitely found a great place for concrete advice and emotional support. I would say the first order of business is to meet with an attorney or elder care attorney (I did the first not the second, which I regret) about finances and legal options. Whether or not you need it now, at some point soon, you will have to make decisions for your mom. I have durable POA which seems to cover most things.

The other question is, since it is likely your mom will not be able to live on her own for much longer. Where do YOU feel she would be safest, and you would be best able to care for her? It sounds like she’s not really safe to live alone anymore. At this point, what should drive the decisions if you are becoming her caretaker is how will you be best positioned to help her and advocate for her. If it’s near you, then hopefully you can start that process.

On a personal note, that’s exactly how my mom was with me - on the outside, to everyone else, she is very charming and friendly. To me, angry, bitter, resentful. Now it’s slightly better because she realizes how much I’ve done (I moved her out of state to be closer to me) but not always much better. Though it’s hard to separate out, her behavior is truly not personal. It’s really hard to be with someone on the decline. I hope you find support here like I have. The Alzheimer’s hotline (numbe on this website) is also a fantastic resource. They have paid staff who know what they are talking about if you ever get jammed up. Sorry you are dealing which such a hard situation, but I hope you find comfort here.

darcytg

Ewilli76,

Glad you found this space. The situations and circumstances are heartbreaking and reading and posting here has allowed me to feel less isloated.

I am 2 months in caring for my LO. I arrived at my LO's home unexpectedly and will stay until my LO has settled into a different place to live.

It is terrifying to watch how this disease evolves....and is different, yet the same for all.

I implore you to take impeccable care of yourself, as you'll be useless to your mom if you fall ill.

We are currently navigating that space. I have been diagnosed with pneumonia and am incapable of caring for us both right now. Not sure how this will shake out. Hoping hospital is not the way for either of us.

The people here are wonderful. Glad a friend suggested you be here.

Really, take good care. The cumulative stress, grief and loss can take a serious toll.

Darcy

Klako

I am sorry you are in this position. I found myself in a similar position. My sister who lived with my dad (her whole life never moved out from childhood) took care of my dad. I probably did not realize how bad he was because I did not spend as much time and she didn’t share. She passed away unexpectedly and I am the only family left as I have no other siblings and my mom has passed years ago.

His doctor told me that he could not live alone anymore. I listened but didn’t really act. Then he fell. He was ok but then I stayed with him 24/7. The lucky thing for me was that he didn’t like taking me from my home. But he also didn’t understand why I was there with him all the time. I eventually found him a place and told him the doctor wanted him to go there. That didn’t really convince him. I then had to go to if he didn’t go and I left him that I would go to jail if something happened to him. A friend of mine who works in healthcare actually said that is not so far from the truth as his durable and healthcare POA I have to act in his best interest. If I don’t and something happened I could be held responsible in some way. He went reluctantly and after a year still asks about his home and how long he needs to be in AL. Getting him there was the hardest thing I have ever done. When he asks about coming home I tell him it is up to the doctor and luckily that works. His short term memory is shot so sometimes changing the subject works to get him off the track.

This disease is so sad and hard to watch. I have found many answers and support here so please use it as a resource.

ewilli76

https://alzconnected.org/discussion/comment/193171#Comment_193171

Thank you! I will start looking into an elder care attorney. I need her closer to me. I know it will be hard starting over with new doctors but all the back and forth is wearing me down. I will speak with her Neurologist on the 17th regarding his thoughts about Conservatorship to see if we might be at the point where I would have enough medical grounds to look into that. Trying to manage two households as well as be the Caretaker and work I commend everyone who is and has successfully found their way.

ewilli76

https://alzconnected.org/discussion/comment/193182#Comment_193182

Thank you for sharing! I did a lot of reading yesterday on the site. I have a lot to learn about this disease if I'm going to be my mom's primary Caregiver for now

DCCEPEK

MC is expensive. Wishing you the best. This disease is a beast

Anonymousjpl123

https://alzconnected.org/discussion/comment/193288#Comment_193288

It’s an unbelievable stress. Sounds like you are getting the ball rolling, which is really the very most important thing. I think it’s so tempting to wait and “hope for the best” until something happens, which it always will, but then you are caught off guard. Glad you are checking with neurologist. You are doing the right thing.