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????????
Then I'd say, OK dad, you're independent. Therefore take care of all this by yourself, Dad. Reassess after a couple of days.
This isn't heartless. This is what is expected of people who won't accept the resources out there if they and the law see themselves as completely independent people.
Set a date when you will either move out or stop "helping".
Folks who are indendent can get on by themselves, yes?
Perhaps if you stop enabling his charade of independence, he will get the help he needs and not cost you your health, both physical and mental.
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.
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.
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.
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.
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.
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.
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.
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.
Crying your eyes out won't help because it only makes you feel worse. Take care of yourself first!....
Many have died in nursing homes due to extreme lack of care and abuse! My sister included! DO NOT PUT HIM IN THERE!
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.
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.
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.
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.