Two years ago I letf my life behind (in another state) to care for my mother who eventually became completely bedridden now I cannot leave as I my father and my two, older, mentally disabled siblings all have become a part of the "package". They have no one else and my father is too stubborn (recently diagnosed with Parkinsons) to move or to help me place my siblings in group homes. He provides some of thier care but it is often insufficient and I have to step in. I am trying not to "become him" which I think is what he wants. I love my family but I cannot continue to take care of 4 people in addition to working and taking care of myself and my husband who also has health issues. I just wonder if I am alone. Is anyone else out there stuck in a situation like mine or am I just one stupid doormat that will be written about in some psychiatric textbook 10 years from now after i go completely looney?

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Update on my situation...

To say the last couple of years since my last post have been hard is certainly an understatement. I don't have words for the turmoil I have gone through but, things are going somewhat smoother for me at the moment.
As i was writing my last post in the summer of 2012 my sister, who is older but mentally retarded, was getting very ill. She stopped eating, drinking fluids and was not sleeping. To make matters worse she would spend the entire night ransacking pulling things out out of drawers and cabinets, throwing things away that shouldn't have been thrown out and getting into medication bottles, scattering them throughout the house. She was behaving like a manic toddler. I saw this as a very dangerous situation for her and my elderly parents living in the home. I felt that I had no choice but to override my fathers position in the matter since he thought that doing nothing was perfectly acceptable. I had her put into the hospital. After 3 months she wasn't much better and looked like death itself. I contacted her caseworker and subsequently had her placed in a group home. We were truly in a crisis situation here. My brother followed a month later. That was the hardest thing I had to far. I wanted to take care of them myself but I learned it was not possible for me to care for two sick, elderly parents, two special needs adult siblings and work (I am nurse). My father eventually realized how much easier his life became without them here and that he could focus more on his own illness (Parkinson's) and mother (bedridden). Though he will never thank me or ever say that I did the right thing, I can rest easier knowing that their needs are totally cared for now and they thriving in their new environment. And my dad seems more comfortable with me taking over all of the major decisions.
We have since all decided to move to Florida and see what happens next. I know that I still have a lot to go through yet and I still work pretty hard but I am grateful for a little peace in my hectic life and I hope and pray that I will be strong enough to make it to the light at the end of the tunnel.

When my mom started showing signs of dementia, my dad retired. He got busy making phone calls and succeeded on enrolling with 2 programs. One is the Catholic Social Services - they did twice a week sponge bath and Mon-Fri provide lunch. He didn't think bathing twice a week was sufficient, so he fought hard - now she gets bathed 4 times a week. Instead of 4 hours a week in 2 shots, he persuaded them to make it 4 times a week - 1 hr at a time. Second program was under the university's federal funding program on the studies of elderly's dementia/parkinson/alzheimer/lideo budig. What I'm trying to say is that my dad did not have pride that prevented him from asking for outside help because he knew he needed help. Is there any way to help change your dad's perspective on this? I'm sure it won't be right away, but eventually can he be persuaded?

The parents have medicare and private insurance. Medicare covers 80%, private insurance SUPPOSE to pay the 20%. Unfortunately, private ins. keeps saying, "Not covered." Dad is getting frustrated. He wants to cancel the private one. Medicare covers 100% of their hospital bills.

I split our house bills in half. But all their medical, hygiene supplies, etc...I take from my dad's funds. I take some money from dad to give to my oldest sis who comes babysit Mon-Friday. I only give $100 cuz dad is very tight with his money. I used to pay half of Everything until last year. I got so stressed over everything and finally decided I'm not getting younger anymore. Once they die, I will have no emergency funds. Plus my brothers will be fighting over this house/land. So I should be saving up while I can.

Today, I was just looking at their expenses. Since both are bedridden and using pampers, I cringe that I will need to go withdraw more money. They go through 3 bags of pampers in 2 weeks ($60.00), 2 boxes of baby wipes in 2 weeks ($20.00), 1 box of Unigard (100ct) in 2 weeks ($95.00) and this is not even including the toilet tissues (used to pat them dry since it's softer than face cloth) and napkins, etc...I hate going to the bank. I feel so guilty like I'm stealing from them. But, I've read on this site over and over again. If they have the funds, then they should use it for their care. I'm still learning to Not feel guilty about it.

Well, brainstorm on how you can persuade your father. I hope you're able to figure something out. Difficult. Later! It's almost midnight. My goal is to sleep early and try to get more rest.

Thanks again for your input Bookworm. As usual I am working on several angles here. I want to please everyone. I know thats impossible. I will eventuall confront my dad again with choices that he will shoot down for one reason or another. I do believe that dementia is setting in and I want to let him hold on to his dignity for as long possible.
By the way, regarding your mom, does she have Medicare? I f so, shoudn't they pay for some of the supplies? My mom gets free colostomy supplies, has a special air bed to prevent bedsores, a wheelchair and hoyer lift all paid for by medicare.

smixe, I've been jumping around on a lot of the discussions on this site. So what the social worker said is correct about your siblings fund. We, too, tried for food stamp but we make too much to qualify. I consider us as the lower ladder of the Middle income family. Yes, we make money, but we have bills (power bill is $604.00 cuz parents must have air conditioner to avoid bedsores), hygiene supplies (pampers, wipes, etc.) and their medical costs (trache kits, Jevity nutrient, monthly payments for the hospital bed, etc...) So, you need to be "poor" enough to qualify for federal fundings/programs.

As long as you're there, your father will see no reason to "hire" anyone to come and help. Is your father still of sound mind? He's not suffering from the beginnings of dymensia? As long as he's of sound mind and not willing to seek outside help, he will be satisfied with you and your husband being there. The thing is, this can last for Years.

Is there a possibility for you to seek outside professional, get to know them, and see if this is the kind of person your father would like? Perhaps have that person come in, only for visits as a "getting to know". Then when your father feels comfortable with said person, he might be willing to accept that person's help?

I don't think you will be able to persuade him to move to your home state. If he's like the older folks here, they were born here and they will die here. The only way you can get them to move is if something really awful happens (like he's no longer able to care for everyone, and someone ends up in the hospital due to his negligence. And the house is in really bad shape, etc...)

So the best you can do is concentrate on getting outside assistance for them. Persuade him to get your siblings to the group home. Reason with him. Tell him that he's no longer getting younger, and the siblings are getting older. They will need to learn to survive in the real world and the group home will help them do this. Not sure if they do? But, the goal is, you will need to be persistent - if you want your life back. Just do one step at a time. One day, when you're able to move back home, you can see if your siblings can transfer to the group home there.

So, case worker/social worker for mom and group home for siblings would be your goal for now.

Thanks for your response, Bookworm84. A lot of my problems come from the fact that my father still makes decisions for himself, my mother and sibblings. I make pretty much all of the medical decisions for most of them since I am a nurse and my father feels intimidated by medical professionals and wont even try to understand whats going on. He disagrees with every choice my husband make to improve our situation. He doesn't want the whole family relocated to FL near our home so that we can be near our friends and our son (our support system).
His house is old and barely livable, not to mention a possible future fire hazard. Proper repairs can't even be made with four people living in it. My husband and I moved an RV trailer on their property and have been living in it for more than two years now. We wanted to be close at hand to asisst them as needed. This hs been beneficial for them but has only earned me an increasing "to do list". We want to go home and make our situation better but My Dad is happy the way things are despite all that is truly wrong here. We know that helping them is the right thing to do but, my dad is the biggest case of denial I have ever seen.
My siblings could be getting state benefits but my dad keeps a little too much money in their accounts for them to qualify. I was advised by their social worker to remove those funds and apply but he refused. My mother has used up her Medicare until her situation changes. He didn't like having home health people come in anyway so, he doesn't want to pay anyone else to come in and help.
He has always sheltered my sibblings and doesn't want them removed from home even though he cannot care for them properly without my help.
If you are thinking that this family is highly disfunctional, you're right. No alcohol or drug use just, plain old fashioned backwardness that never cleared up.
I didn't mean to "bleed" all over you; I am just frustrated and overwhelmed. Thanks for reading/listening.

Hi smixe. I take care of 2 bedridden parents. My mom has dementia/Alzheimer for 23 years now. She's completely unresponsive, on oxygen, trache (hole in neck for the oxygen to go in cuz she forgets to breathe/swallow) and stomach tube. She's a complete dead-weight so it's a bit difficult to change her pamper by oneself. Dad had a minor stroke last year and has completely no interest getting out of the bed - not even on wheelchair. Of the two, he's my most difficult "patient." He refuses my attempt to do physical therapy and so now his left leg is crooked from the knee and he can no longer straighten it. Where I live, the paid hospice care is at least $4000-some/month. I'm currently trying to find a paid caregiver to come in on Saturdays...which 3 of my siblings can afford to pay.

Now, about your situation, I'm not very familiar. I'm quite new to this site - about 1 month old. Actually, I really have not much experience/knowledge to give you advice. But, I'm just wondering, if your siblings are older than you, why would you need your father's help in placing them in a group home? Do they want to go to a group home? I'm not familiar with group homes. Do you like pay "rent" for your siblings to live there? As for your father and Parkinson-again I'm not familiar.

Have you tried to check the resources there? Do they have income? Do they qualify for Medicare? You may want to check the phone book for elderly care/programs. They may be better able to assist you by providing options. With my parents, I have 2 organizations that help a lot: daily bathing from M-F, Daily lunch M-F, $150 certificate towards pampers or wipes and Respite services for me as their caregiver.

How about checking this site by clicking on Elder Care or Caregiver Support, scroll down and see if any of the questions can assist you? I had clicked on one thread that had nothing to do with my situation, but I learned ALOT!! Be patient. I'm sure one of the more experiened caregivers will see your question and answer it much better than I can!!

And NO, you have not gone completely looney! Otherwise, I'm a looney too. ..which I Don't Think I am. Therefore, you're not looney. Nope, not at all! :)

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