Feeling defeated

DaniGreen

I am new to this forum and after reading through other's posts, I finally feel validated and not alone. I am the caregiver for my Mom who was diagnosed with dementia 2 years ago. She has been living with me for approximately a year after needing more care than could be provided at the ALF she was living in. She has become very hurtful, agitated etc. lately. She locked herself out of her phone and we are unable to get it back. I have offered to get her a new easier phone, but that makes her mad and keeps saying I broke her phone. She is completely unaware that she has judgement and safety awareness issues. She was recently in a SNF for short term rehab stay following COVID and told them she was leaving, to which she then received an ankle alert so she could not elope. I was also told she was not very kind to the therapy staff. We are now back at my house and it is getting to where I feel she may need MC for safety. I am a single Mom, work full-time (CGs here when at work), she has been very hurtful to my dtr who tries very hard to understand but it is taking a toll on her. Everything is my fault of course. I am DPOA but not guardian. I tried to put her in MC for a respite stay to try it out and she refused. She told then she would call the police, and tell them she is in danger from her daughter. The MC refused her, said I would need guardianship and meds for agitation. Her sister (my Aunt) increases her behaviors by feeding her suspicions etc. Tells my Mom you need to get out of there, we need to find a way to sneak you out (my aunt lives in another state), to the point that my mom's CG had to call me at work concerned because they had a plan for a local friend to show up and take my mom for coffee and not bring her back. My aunt has also sent the cops to our house many times, to which the cops simply say it sounds like she is trying to intimidate the one who has DPOA ( as my aunt is back-up). My Aunt is apparently clueless that she is hurting my Mom by feeding her suspicions and increasing her risk of elopement. I feel that we are nearing time to place her to keep her safe, but she is extremely smart and can fool some for a short period of time, so once she says no, they say I need guardianship, which is not something I really want to go through. Her DPOA clearly states issues regarding healthcare and placement options, stating that I can make those decisions. I feel lost, trapped, and hurt. I am in disbelief that my own family is not supporting me caring for my Mom and supporting the decisions. My Mom said she wants to go live with her sister (in another state). Her sisters married has two homes, travels all the time and has never even visited when my Mom was so sick. I feel that going there is not in my mom's best interest or the safest option, but she keeps saying you can't keep me here, you are holding me hostage.

Any advice, support, encouraging words would be greatly appreciated…

psg712

Can her doctor help with meds for agitation? If her DPOA document says that you can make placement decisions, you should be able to sign a contract with an MC facility and get her in. No guardianship should be required.

You will have to do some creative planning to get her there, but once she's in the door you can make an excuse, get out (preferably with her phone in your possession), and let the staff handle her reactions (also with the help of calming meds if necessary). You will never get her to agree to this move. But you can do it, knowing it's for her safety. You may find that she settles down and feels more secure in the controlled environment.

AmandaF

This sounds rough and I’m sorry - my mom’s story was similar. MCs wouldn’t take her unless she had her meds figured out, which I get but which was extremely frustrating at the time. We got her on Seroquel and that helped a lot with the agitation. In the end we did just as psg712 described, moving her without telling her what was happening. We let her keep her phone for a while but that was probably a mistake - dementia and phones often don’t go well together. It was all extremely hectic and she was so mad and confused, but now she’s settled there and actually seems pretty content. Sending good wishes and I hope you can get her doctor to help you with the meds.

SusanB-dil

Hi DaniGreen - welcome to 'here', but sorry for the reason.

As DPOA, you already have the authority needed. I agree with the other posts. Tell her doc about the agitation. There are meds that can dial that back without being 'zombied'. The phone is locked, and that may be a good thing. It sounds like the best is to block out that aunt. Those who are not seeing the day-to-day care needed are often clueless to the full situation. And yes, they can make your life more miserable instead of helping. If you can, do get her to MC, for her as well as your family, especially the well-being of yourself and your daughter. asap.

My brother got our mom the phone that 'connected' to his plan, as the child-phone. He programmed only the numbers closest to her - the helpful ones (his, mine, only a couple others) - and did not give out that number to others.

edit to add - your mom has anosognosia. This is not denial. It is the firm belief that there is nothing wrong. She can also 'showtime' for a short period of time, to have others think 'this isn't so bad…'

NizhoniGrrl

Part of me wants to say that you should pack her up and send her to your aunt for a visit. See how that might change her perspective.

Since that is probably not an option, I agree that you need to block contact with the Aunt one way or another and get a placement for your mom asap. You've done so much, but we all have our limits.

scholico

I have 3 sisters with all varying options on our mother's caregiving needs. I can sympathize with your frustration. Sadly To her you are actually keeping her hostage, right? Everyone here understands why she needs help and it's not an evil kidnapping plot on your end . You are keeping her safe This is a Harsh disease. I hear your concern about her being able to "fool" others but you have medical diagnosis and any trained professional knows what's up .. the fact that she isn't able to go to a MC unit due to current aggression/anxiety alone and we sadly know this disease is only going to progress I would suggest the time to act is now. Wish you the best of luck- pray everything works out for you

1359Pond

https://alzconnected.org/discussion/70758/feeling-defeated

That sounds exhausting. For what it’s worth you are NOT alone. My Mom blames me all the time too. My brother can do no wrong. It’s heartbreaking. Glad you found this forum. Keep coming back.