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I've been caring for my elderly father for at least 16 years now. I'm so extremely burnt out, tired, stressed & deeply depressed. I've reached out to my family for help dozens of times, when they finally decided to help me, my father sort of blow his top & ever since then I kind of feel that my family no longer wants to help me. I've even reached out to the VA (who my father has a doctor & nurse through), but since he (my father) can still make decisions for himself & think clearly, they (the VA) can not force my father to do anything that he doesn't want to do. My father absolutely does not want to go into a nursing home & he seems like he doesn't see the toll that taking care of him has taken out on me, even though I've told him countless times. I just feel like I can not take care of my father anymore, but considering that he can still make decisions for himself & completely refuses to go to a nursing home, what am I to do????????

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This is emotional abuse and through my own similar situation, my therapist has said it's Self Abuse I am allowing to happen.

You are going to have to stop caring for him and eventually the family will have to step in. Your life and happiness are important.
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Help, how are you doing?
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I am so sorry, Help77. You are being emotionally abused and manipulated. I picked up somewhere that you are living there and this is a full-time job for you. Is that right? Can you find a way to move in with friends? Do you have friends. What he feels YOU are obligated to do is not your problem. You are losing your health and he doesn't care. What kind of a father is that? What would he do if you were to drop dead. Figure out what he would do, then do that.
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You can no longer care for him. Call your area on aging. They will help you with all of these decisions.
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Sixteen years?

It sounds like the OP, like so many caregivers, fell into the "free rent and board" trap, and 16 years later could be facing homelessness herself.

The only hope she has if this is the situation is getting out, getting some job maybe at a LTC for herself (or retail or whatever) and then move into some houseshare. Until she does NOT live there, she has very little leverage against Dad.
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If he won't decide to move then you do instead. Go away and have a good break for a month and let him make the decisions whilst you are gone. He can call family or he can manage on his own, or get some care in - but you have done your bit and more and you need a break, so take one and leave him to it. If he has been assessed as able to make his own decisions he will do so if he can. You have become too much of a servant to him which no doubt makes his life easier but that isn't what you were born for.
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You also need better boundaries so you can take care of yourself. Please consider reading any of the "boundary" books by Townsend and Cloud. They outline a successful process for dealing with problem behaviors. You may also benefit from meeting with a counsellor weekly while you create/implement a better living plan for you and your dad.

If your father is mentally competent, you need to let him take matters into his own hands. Tell him that you can no longer be his caregiver 24/7/365. Let him know the reasonable plan of when you will be able to care for him. Allow him to talk to family members, friends, members of faith community, VA... to obtain help for times you are not available. If he doesn't do this, then "help" him to secure more help. Explain that if he can not get enough caregivers to fill in the gaps, then he will need to move to assisted living through the VA so he will have enough help. Be firm but kind.
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Girl, 16 years is a LONG time. Most people wouldn’t have made it this far. You need a healthy emancipation.
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Help77: Imho, it is IMPERATIVE that you stop the caregiving for your father before you fall faint and ill and will be good to no one, most importantly yourself. The caregiving of over one and a half decades must end. Your father will have to find facility accommodations. No one is expected to, nor should they put their own physical and mental health in jeopardy because the elder is stubborn minded; that dynamic must change.
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Stop looking after him. Go away for a month telling family they will have to keep an eye on him and watch him decide that that nursing home doesn’t look so bad after all.
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lkdrymom Dec 2021
I agree. Take a weeks' vacation. Get the flu. See how he handles it.
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The VA has Beautiful residential homes for Veterans in some areas. The Green Houses are not like the older facilities.
Do a search to determine if they have them in your area.
They are NOT "nursing homes" and they will care for a Veteran in a "home like setting" it is a continuum of care that is provided.
There are waiting lists for the Green Houses and it might be a good idea to get him on a waiting list. You can always decline if there is a space and they will contact you again later. It could also be used for Respite if needed.
You could discuss with the Social Worker or Patient Advocate if you NEED respite care. It will be provided.
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Help, what you can do is STOP whatever you are doing. You are NOT obligated, whatever your father thinks. Just two days of not providing food, cleaning him up, and whatever else you do, will change things dramatically. Two days! It won't kill him, just put it all on the line. What have you got to lose?
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Sixteen years is a long time! Even caregivers need vacations and time off so that they don't get burnt out. Does your father have enough money to hire an assistant(s) or aide? The VA or Medicare may pay for it or part of it. It could be someone to help your father with things he cannot do for himself that you help him with, or to help you with the cleaning, laundry, cooking and shopping. Connect with a local social worker who can advise you of your father's options. Would he go to senior "daycare"? Some senior centers will pick up a client, take them to the center and then provide activities and caregiving. Connect with senior centers in your area to see what services they can provide. Reach out for help. The help is for you.
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Does he really need a "nursing home"? Sounds like maybe "assisted living" is what he needs. That would give him a room or apartment of his own (or perhaps shared with another person) but include help bathing, dressing, taking meds ,or whatever physical help he needs to stay safe. He would be free to move around at will, however he can do so safely. He might even get some physical therapy to help him do even more for himself.

One thing elderly people seem to fear most is "being put in a 'nursing home'." If you keep using that term he most likely will not want to co-operate.

You might discuss with VA what other options may be available. In some cases, they will pay for some home health care if it is needed. Did his MD and/or nurse feel he had no choice other than a "nursing home"? There are also "personal care homes" (private residences where meals and care is furnished.) Sounds like you could use some help from a consultant such as a social worker. Doctors and nurses have expertise in medical matters, but not always in the full array of services available to the elderly.
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You are stressed, burned out and on the verge of collapse with the responsibilities you have. You have a problem since he still has some mental value. But you cannot continue this way with him or you will be destroyed. Reach out to Adult Protective Services and seek options - or get caretakers. Something has to be done now so he is safe and you are free - or you will be joining him.
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ToskaBlue1957 Jan 2022
Is "you will be destroyed" really the best verbiage in this situation? Everyone has opinions, but I think this gal is right, in first reaching out for help, and second, by putting her father's care at the foremost. Navigating the system is a book that has yet to be written. Sometimes the secret is to just keep probing, until you find the answers you need. And prayer doesn't hurt either.
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Do NOT put him into a nursing home!!! Please look into in home care for him instead. There are programs like IRIS in Wisconsin that can help him with funding to get him the things he needs. They also will pay for people to come in to help ...including yourself as one of his caregivers. The decision is his!!!

Many have died in nursing homes due to extreme lack of care and abuse! My sister included! DO NOT PUT HIM IN THERE!
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lealonnie1 Dec 2021
Great advice. So SHE should die instead, huh?
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You don't mention that you have a job outside the home. Does your decision about leaving your father partly have to do with how you will manage housing for yourself? If you left his home, would you would need to get a job or a gov't check? You are between a rock & hard place if that is the case. At any rate, you need to make decisions now about your living arrangement once father is gone, one way or another. I'm assuming father has been paying all these expenses over the past 16 yrs you have been living with him and helping him be "independent". When he is gone, even if his house is paid for, and your siblings agree to let you stay there, there are still a lot of expenses. You need to figure out how and where you will live the rest of your life. Best to start now while you have a roof over your head.
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Did you leave yet? Let your Dad live his life and if he crashes....so be it. Remember, he is fit in mind so if he ends up in hospital, his fit mind will tell him that he will need to be placed in a home later. I am sure he will rail at his doctors but you should not be there!

Crying your eyes out won't help because it only makes you feel worse. Take care of yourself first!....
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Have you explored all that the VA has to offer?
Depending on where and when he served with the Parkinson’s he may be classified as having a 100% “service connected disability”
He can / you can get caregivers that will come in and help out. You can be paid for caring for him (you should be now anyway)
The VA has many programs it might take som searching to fine the ones that will be most beneficial to both of you.
Contact your local Veterans Assistance Commission and bring what paperwork you have (you might even ask if they can come to you).
You can also ask a VA Social Worker or Patient Advocate to do some searching for you.
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I feel for you and your father. I recall when my mother was still with us, she had a sound mind, and refused to go into an assisted living facility. We never would have put her in a nursing home, they do not give good care, I know I worked as a nurse in some. Mother also refused to leave her home, so what we did (speaking of my brothers and myself) we hired ladies to come in and cook, clean. As mother's health declined, we added nurse aides. She lived like that for several years, till her health was bad enough for hospice care. Hospice came in and took care of mother till she passed away in her own home.
Can you get help to come in and do your fathers care at his home or is he living at your home? Please do not send him to a nursing home they are just places to die. That is my experience, life is precious and brief, once our loved ones are gone that's it. Of course, take care of your health, you do not say how old you are or how old your father is. Only know I would never want to be put in a nursing home myself.
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I was in a slightly different boat than you, because my mom had Alzheimer's, and therefore couldn't think for herself. Hubby and I took care of her for 5 years, because she just couldn't cope with Assisted Living/Memory Care. She, too, didn't see the toll it was taking on Hubby and me. I don't think they can help that. I think sometimes the resistance to Asssited Living takes over their mental faculties. I even wrote a book about taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." My mother-in-law also had Alzheimer's, but she coped quite well in Asssited Living/ Memory Care. I wonder if your dad could go to some day activities for seniors, and/or if volunteers, either through your local Area on Aging and/or a house of woship, or college kids, (perhaps nursing students)could keep your dad company for a few hours here or there. Best of luck.
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16 years is enough. Take the emotional part of this out and just make a list of solutions.
Problem: father is still capable of making decisions.
Solution: Ok, since I am sure you are the one buying groceries, cooking, making Dr appointments, etc. Just make a list of all the things you do and tell him he needs to start taking care of them. For example, my father in law lives with me and I have to order his groceries every week. He starts to complain about the name brands and color of the bananas so then I always tell him, yeah, well then go get a car and buy your own groceries. But he can’t because he is too old and blind to drive. So, then that gets him thinking oh yeah, she does everything for me, I shouldn’t complain.
I guarantee that the minute this guy has to figure out Amazon grocery delivery, he will give up and start realizing you do a lot. Everytime my father in law complains, I just shake my head like well, it’s either me doing the best I can with two boys, a husband and 85 yr old baby or you can start researching nursing homes that cost $5000 a month. He hasn’t been complaining lately.
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Hire a part time or live in caregiver.
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If your father is competent to take care of himself - then truthfully - you are "propping him up" to be "independent". IS he independent or does he believe he is independent because YOU facilitate that for him? I say this as gently as I know how - and also as someone who is enabling my FIL to do the same exact thing - as long as you are propping him up - AKA enabling him to remain where he is and continue to live as he is by facilitating his life FOR him - HE is not going to change a single thing. There is literally no reason for him to do so.
For a lot of elderly people - when their adult children begin stepping in to do things for them - whether out of love or the their own expectation that they should - they don't recognize that loss of independence. The transition seems so gradual often that they don't realize that they have gone from being independent and able to do so much on their own to being completely dependent on YOU. He may very well think he is much more independent than he actually is because YOU are the one doing so much.
Have you tried NOT doing certain things? What CAN he do for himself? What would happen if you weren't there?

My FIL will still often say "I'll just do it myself" when we mention something that needs to be done (for example - the latest is that a toilet needs to be replaced and even the mostly able-bodied among us have some issues that preclude doing the heavy lifting that is required so we were talking about hiring a plumber and his answer was that HE would replace it...a 300 pound bed bound nearly 100% immobile almost 90 year old man). So frequently the illusion of independence is a hard pill to swallow.

But the reality is that you have to remove you from the equation in order to open that door (in our case we can't get everyone out of the equation yet in order to open the door, we can't get all other parties out of his home yet, so he continues to have someone on site that can always help, so he's not going anywhere). But your reality is that as long as you are there providing him with the assist, he is never forced to do it for himself. As long as you are there being the answer, he never has to figure it out for himself.
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You say you can't go on. Say it to him. Let him blow if that is how he handles things. I suspect he did not single handedly care for both his parents for years. If he did, bless him, but you cannot. He seems to think stubbornness and avoiding problems is a solution, and it is, if you pick up the pieces. Let them lie. The professionals say he is capable of making this decision. Why are you second guessing them?
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lkdrymom Dec 2021
Why do I think his wife or sisters did all the caregiving and he is just taking the credit.
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Walk away. Care for yourself.
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Help, read what Ann said and do it.

If you break your back, have a heart attack, end up in the hospital, things will change, yes?

Did your dad care for his parents with NO help? Were his parents stubborn and uncooperative.? Did they live as long as he did, with as many infirmities? The answer to all 3 of those in "no".

You cannot change your father's mind, or his behavior. Change yours and make a plan to look eave.
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Re-read what you just wrote. What would you say to your best friend if they said that to you?
This situation has obviously been a lifetime in the making. You have been condtioned, trained to wait on your father hand and foot. Not to complain, not to question and not to have your own life.
Time to get yourself together. Stand up for your self, your self worth and being able to enjoy life.
So your father pitches a fit? How is his behavior even remotely adult, responsible or intelligent? It is not. Ok. Walk away, which apparently most of your family has done. I betcha they aren't sick about this, or physically ill, or crying, or losing sleep about your father's self centered behavior. Maybe you could reach out to them, explain that the help you need now is to get out of your toxic situation. I betcha there might be a lot of help offered to you.
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What someone did in his healthy, vigorous, well intentioned past, IS HIS HISTORY.

What you are doing in your depleted, depressed CURRENT HISTORY BELONGS TO YOU.

A good efficient honest caregiver NEEDS to be a caregiver to him/her SELF. If they fail THIS critical assignment, they have lost the power and capacity to offer their best to ANYONE ELSE.

If/when you resign, HE WILL BE FURIOUS, but he will learn what HE can do for himself OR WHAT HE MUST HIRE a professional caregiver to do.

So if he CAN make care decisions, he NEEDS the opportunity to do so.

He is NOT too old chronologically to do for himself, but as a PD patient he may be less capable of taking charge that he himself knows. For your welfare, you MUST give him the option to try, then fail or succeed on his own.

Research care resources in his area including part/full time aides, meal services, cleaning services, WHATEVER HE NEEDS TO LIVE WITHIN THE LIMITS OF HIS CONDITION, prepare a portfolio FOR HIS USE, write up your resignation, offer him 6 weeks before you leave, then proceed, no turning back.

He will be potentially livid, vicious, loud, or more. Do not relent. After the dust settles you may in find that his “new life” turns out to be better for you but also for him.

Take a shot. You have virtually nothing to lose, except yourself.
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I think you should honor your feelings that you cannot go on. This will not make your father happy, but the truth seems that not much HAS made him happy. Elder years are worthy of us mourning what they mean for us, but what they should not mean is the sacrifice of the life of our children.
I am sorry to sound of late so "tough love" on the forum, but the truth is that not everything can be fixed or has a "happy" solution.
If you need to seek support of a psychologist or Licensed Social Worker trained in life transitions, do so, but embrace that you have met the limitations of what you humanly have to give. Be as gentle as you can in explaining it to your father, and seek placement for him. Absolutely refusing is not an option unless he is physically and mentally well enough to move out and be on his own. Do not expect help from your family. To my mind, their decisions were the RIGHT ones in not taking on his care.
I wish you the best, but you are going to have to embrace being the "bad guy" now. Being the "good guy" has had neither recognition nor love in return. You have a right to your life. Your father has HAD his already.
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