I need more respite care but mom holds the financial keys and is resistant.

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Not to be redundant but I'm the primary caregiver for my mom with adv PD. I moved in to help her when it was only moderate PD. Now she requires much more care and supervision. I coudlnt' find a job when I moved here (one that would support me) so mom took over my med/dental and room and board. Sounds nice but the b side of that is that I have no life and am under her thumb. Being under the thumb of PD patient who is losing cognitive abilities but still in charge of the $$$. I haven't seen my bf since Christmas. We have been maintiang a LDR for almost 5 yrs. Was supposed to get together with him in June but he landed in hospital in May and then the homecare person (another issue) landed in the hospital right after that. Now that i'm trying to make plans mom has decided that since the homecare person we have 2X a wk for 4 hrs has a sleep disorder and needs a CPAC mask and can't do evenings or overnights -- that I'm just going to have to deal with the fact. I say the fact is that we need others for homecare than one person who needs to be in bed by 7 p.m. Mom informed me that this is not important to her and that the homecare if for her not me and so what if I can't do things in the evening or have a weekend to myself. She feels that she can't do a lot of the things that she would like to do either so I should stop being a pouty baby. I AM AT MY WITS END. I do not think I'm asking for a lot esp. since mom has LTC ins that pays 80%. One of my friends told me to just tell her what weekend I'm leaving and leave her the home care agency phone number and have her deal with and walk out the door. I can't just abandon her leaving her siting in her piss and crap just because she's demented AND stubborn. Besides I think the authorities would be called on me. I told my mom I dont' see why this has to be such bway production esp. since I'm here 99.9% of the time. I'm glad mom likes her caregiver that's here for 8 hrs a week but we need more? I've tried to be super sweet about it and I've gone off like a roman candle about it but I still reach the same destination -- NOWHERSVILLE. HELP!


One thing that people need to think about, because this is what happened in our case, is what happens if the care taker dies? Caring for my Mother contributed to my sisters death at age 69. You are not indestructible.

You say that you can't leave and let the chips fall where they may, but if you die - that is exactly what is going to happen. I would offer one more time to get Mom set up where she needs to be and then, leave. I know it sounds bad, but I have been through a little bit of what you are saying. My Mother could keep my other sister, age 74, from even going out to lunch. 'What if someone comes to the door?" Aack. It makes me mad to even think of the control issues Mother exerted.
Your mom is unable to make the decision, you have to. Find a place for her to live. Explain in whatever creative way you can think of...it's temporary, you have a 'project' you need to work on...whatever. Then re-establish a life for yourself. Get a job. What will you do when she's gone? Do it now.
call your local Area Agency on Aging they should be able to help you... I do this for folks all the time... I know that statistically 60 % of caregivers will predecease their loved one... YOU have to take care of you! Don't let her make you feel guilty..
Your mother sounds abusive to me!
Please take care of yourself! Your mother is stealing your life from you and you are not obligated to let that happen.
This sounds like a horrible situation and one very difficult to give advice in...but I've gone thru something pretty similar--can you possibly call the non-emergency # of the Fire Dept in your city/town/suburb, ask to speak to the paramedics, and ask their advice?

Dad (93 2/dementia) got combative with my husband, daughter (19) & I and locked us out of the house last summer. I called the non-emergency # of the Fire Dept in our suburb & spoke w/paramedics, who empathetically (thank GOD for their kindness) came to the house, got him to open the door by continually ringing the doorbell and calling him on the home telephone (which has no answering machine hooked up to it and so it will ring continually) and:

They explained to him calmly that what he was doing was so very counterproductive to his well-being that if he continued to not allow us, his caregivers, into his home (where we now lived 24/7, by mutual consent) that he would be forced to live with his older daughter, sole POA-holder, in her home.

Dad remembered from previous experience of living w/older daughter, who works long hours, lives 15-16 miles away from his house & cannot quit her job to be with him continually, as the 3 of us have managed to be, to be an unhappy arrangement for him.

There was no abuse or neglect by my sister when dad lived with her, quite the contrary: she was pushed to the breaking point. Dad was the one who decided, quite independently, that he wanted to live in his house. After being abusive to me the very first day I simply left...and then dad realized that he needed LOTS of care from someone on a continual basis if he wanted to stay here.

I then had my sister, and one of his nieces speak to him on the telephone, calmly explaining how much he needed us, and to STOP THIS ABUSE TO US, who were being so good to HIM. It sunk in.

OK. If you can't get the paramedics to do this, how about other resources free in the area where you live? Your village/city hall? You won't know until you check it out. I know this is time consuming to do when you are at your wits end (I totally & completely understand what you are experiencing) but summon up all of your emotional reserves and keep telling yourself "I can do this!" and you WILL.

I apologize for the ridiculous length of this. Being at your wit's end is very, very scary and it is difficult to reach out to outsiders...but you can! I did it & still continue to do so! There is basically just hubby, daughter & I; I ended up losing the job I'd had; now have been home with him the most so I know how debilitating it can be when the abuse is continually heaped upon you.

May you find the assistance you need SOON, stay strong, and come out of this feeling stronger, lucid, happier and with some sense that you are NOT ALONE. Many hugs to you!!!
You poor thing! You are in a horrible situation and you need out! I am caring for my mother with dementia, who is not a nice person to begin with, so I can relate. You need to calmly and firmly tell her you are not working anymore on weekends. YOU call home health care and schedule them for the weekends. You may need to call HSS or her doctor and you may have to have her sent to a home. There is help. But you must quit taking this on yourself. And you can. You may have to tell your mother that you still have a life to live. So she can either agree to getting you much more help, or you are leaving. I know you are not really in a situation to leave, but tell her you have found a great job and are moving out. Are you her POA? Do you have any control of her funds? Sounds like you need to, if not. If she has dementia she cannot be in any position to take care of her finances. God Bless you and keep us posted.
YOU need help!!!!! Contact all agencies, doctors, County Welfare, etc. until you find some.
Start by going out for a few hours at a time. Leave her a snack and a drink at the bed or chair side and make sure she is clean and dry before you leave. After all that is done tell her you will be going out and when you will be back. She does not need to know what you are going to do. The first few times only go for a short period but gradually increase the time and extend it to over a time when she usually wants a meal. Eat out your self so you return feeling really refreshed and she on the other hand is late for dinner and sitting in a wet diaper. Keep your cool, get her cleaned up and then cook her a nice meal. When she has calmed down tell her this need not happen if she would hire enough caregivers to cover your absence and you are not giving up your outings. In future you can tell her you will notify her a couple of days prior so she can hire someone for that period. Contact public health, they may be able to help. You can talk to her Dr without her permission. He just can't tell you anything with out her permission. good luck it takes courage to stand up to a parent but you have rights too.
I tried to get my sisters to stand up to Mother, but I think at least one of them was co-dependent on mom. If you are going to go out, you need to leave your cell phone in the house, so when your Mother calls it, it will just ring in her house. My sister would answer the phone constantly when she was out. Well, Mother outlived her. Go figure.

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