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So in the beginning of January my 70 year old father had a stroke that affected the use of his right hand and leg. He went to a rehab facility for a little under a month, but demanded to leave against medical advice when he still couldn't walk or take care of his basic needs. I pleaded with him to stay another week or two to receive the physical therapy that would have made being home easier for him and he refused. In addition, he was legally blind before the stroke and his vision is now worse.


My boyfriend and I quickly moved in to help take care of him as much as possible. We'd already been planning to move in temporarily to save money and help him, but his condition is much worse than anticipated when that was the plan. He has a home health aide who makes breakfasts and cleans, and a friend who lives with him and helps keep an eye when we're away. My boyfriend and I both work nearly fifty hours a week and can't be there 24/7. The roommate and him have had some disagreements since he's been home and he wants to kick the man out, leaving him basically alone the majority of the day once his caretaker leaves. He's already fallen twice in the week he's been out, and is completely unable to get back up if he does so.


Honestly, I'm so frustrated by the whole thing, angry and resentful at him for it. I've cried everyday coming home from work, only to get home and make him meals for the next day, put him to bed, and then spend the night dumping his urinal with ears peeled for when he might try to get up on his own. I'm trying to be patient and caring, I love my dad and he was a wonderful father to me. I think he thought things would fall into place when he got home, only to realize his mobility was much worse than he thought it was. He insisted he'd get by on his own, only to need near constant care.


I'm angry that he listened to a team of doctors tell him he wasn't ready, and completely ignored them. I'm angry that he put my boyfriend, myself, and his roommate into these roles while completely ignoring our pleas to stay slightly longer and work on rehabilitation. I feel like I can't go out and have any sort of a life without the worry of what might happen when I'm gone, and I'm just about to start an exciting new job.


I feel like if I voice these frustrations, even as kindly as possible, and let him know how I feel about his actions, he'll tell me to just leave, or worse, hurt himself out of guilt.


I guess I dont really know what I'm asking, but I'm just at a loss right now. I'm turning 27 next week, and was planning on spending the next year saving up for a house and then starting a family. Now I think I'll be living with my father indefinitely because he resisted good willed advice from doctors and everyone who cares about him. I get how frustrated he is himself, and how awful it must've been in rehab, but I don't know how much I can do for him and I feel selfish for wanting my own life.


Any advice or words of wisdom would be much appreciated.

You are not selfish for wanting and needing your own life. I hope you can let that go. I know it's a tall order but try letting it go every day, just for that day. It's easier to accept when it's taken in bits and pieces. When you wake up every morning make the decision that you are not selfish for wanting your own life and remind yourself throughout the day. Other thoughts will try to intrude but just keep telling yourself that you're not selfish.

Our elderly parents don't understand that when they make unhealthy choices it's often us, the adult children, who have to live with the consequences. And the work. And the frustration. And the heartbreak. They make the decisions and we have to spring into action to accommodate them immediately and seldom are we given the time to consider and discuss these decisions with our elderly parent and/or other family members and loved ones.

I took care of my elderly father and the philosophy I developed was that he was the person who needed assistance. He was person I spent all my time caring for. He was the person whose finances I handled. I took him to the doctor, to the hospital for procedures, and made sure his meds were all present and accounted for. I took care of his diabetic feet and legs, took him to the wound clinic, and brought him with me any time I was invited to a BBQ or other social event. I was the healthy one and the only one able and willing to care for him so when he had some cockamamie idea about something he wanted to do or he was mulling over a decision that was ill-advised I whipped out my veto power. I didn't use it all the time because that would take away from its power but I would tell him that I was the one ensuring he had a good life with everything he needed and I was not going to allow him to get on a plane and fly halfway across the country, or buy a brand new car with 4 miles on it that would outlive him, or set up his med box by himself, or......you get the idea. My dad needed MY help. He didn't get to call all the shots when he was the one needing MY help. I had a very large say-so in what he did so my life wouldn't turn anymore upside down than it already was. That's how I took care of myself when my dad lived with me. He didn't get to make shortsighted decisions that were reckless or not in the best interest of his health and well being.

And in exchange for him relinquishing most of his control over to me he led a peaceful life for the most part with his family around him whom he saw everyday. He was the one who needed help. He didn't get to dictate the terms for which that help was given. When I need my living room painted or help with some other thing I don't tell the person helping me how it's going to be. I express gratitude for the help and make accommodations for the person helping me out and I do what I can to make sure that person has everything they need to help me. I know with family it's a bit murkier but the principle is the same. We can love and care for our elderly parents without participating in their spinning around like a top doing things that are harmful to them.

Help your dad on your terms, not his.
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NeedHelpWithMom Feb 10, 2019
Eyerishlass,

I really like the way you explained how you feel about the responsibility of caregiving as an adult child for an elderly parent.

Your answer helps me to focus more on their well being as well as the sanity of the caregiver (myself). Thanks.
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ik - just saw you're post. You are indeed an Angel but be careful here.

I dont live with my Dad but he ran me ragged. I nearly ended up losing my kids and marriage because it was just incessant.

He was the same. Got problems with his knees. Doc gave him Codeine to take. Wouldn't take it because it "bunged him up". So doc gave him a laxative - won't take that in case it causes him to be caught short. You can't win.

So what he did he do? He harassed the GP who eventually told him to listen to advice or go away. So he started on me - not sure what he expected me to do Im not a medical person. It was a case of my knees are bad so you'll have to come to visit to help me.

In the meantime, I spoke to his GP who said there were no problems like dementia he just did not want to listen. At that point, I thought "stuff it" I can only help so much.

Point being - if elderly person won't listen to medical professionals then its time to leave them to their own devices. That's what I do now - he phones me and moans about his knees, I ask him if hes taking his tablets, its always a No, so I tell him to listen to GP so he changes the subject.
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Reply to paulfoel123
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ikgbrd, I don't know...even with PT and OT, with his further decreased vision, it just might be too much to expect him to be as independent as he was before the stroke.

You will be starting a new job soon. How is it going to be when you're sleep-deprived because you "spend the night dumping his urinal with ears peeled for when he might try to get up on his own"? Sleep deprivation is a form of torture, you know.

We read posts here from people who feel stuck in situations with their boyfriends because of eldercare issues. And it is often advised that the poster rethink the relationship. As strong as you think your relationship is with your boyfriend now, it might not withstand the stress of living with your father. And since your father only 70, so it could be an issue for years to come. Better to get OUT of his house ASAP. As wonderful a father as you say he was, he would not want you to sacrifice years of his life to be his caregiver.  

As I always ask, are you an only child? If not, then where are your siblings in all of this?
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You have every right to be frustrated. I have had years of frustration with a mother neglecting her health. But back to your situation. You are young and need and deserve a life working towards your future. I think your father needs to be placed in a NH. That just seems to be the stark reality. We have a good friend the same age who suffered a severe stroke. After nearly a year in a variety of facilities he is home with a fulltime caregiver as his wife has a fulltime job. She has applied for Medicaid. They are at least blessed for now with a wonderful caregiver who needs the work but it took going through a number of them to reach this point. Your father is choosing to not help himself. Granted his judgment may be impaired but that is the stark reality. You cannot fix this and you obviously need to work which is important for your future. By whatever means possible I hope you can work towards this solution. You most likely need a social worker and possibly legal advice from an elder care attorney. Hopefully you might find one that will help and not cost what you and or he cannot afford. You could visit him and know that he will not be a further danger to himself. There are many on this forum who hopefully can advise you further. It is natural to be upset. You can allow those emotions but it would be best to not to succumb to them. I hope you can find the paths needed to provide for his care. Since it is a NH it should be provided for without a huge expense. My mother has been in 2 different AL facilities as we are moving to a more affordable state. From what you describe he would not be eligible for that type of facility which also is a cost that insurance would not cover unless he had a long term care policy. If he did it would also cover a NH. I would not waste time thinking of another option. As I stated he is beyond the stage for an AL facility and fulltime care at home can be an arduous process. It can be hard to find the right match and you do not have the time to be available if and most likely when problems develop. I hope I have not been too negative. I know of many situations with other family members as well as friends who have been down this path. Please help yourself by moving forward to get your father the safe care he needs for both your sakes. I wish you the best. It may not be at all easy but you did not cause his stroke. By getting him the care he needs you are providing him a safe environment.
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ikgbrd Feb 10, 2019
Uunfortunately my father would absolutely refuse a nursing home, and he was deemed competent to make his own decisions about his care. I fear if I even bring it up he will just tell me to leave, and then injure himself by continuous falls until it becomes unnecessary. He does have Medicaid and a morning health care aide, as well as PT and OT who come a couple times a week, but the hours don't coincide with my work schedule so often it's just his roommate there with him while I'm gone.

He's stubbornly refusing to do outpatient facility at the rehab center, and insisting that it's their fault for him not being better and now they're not caring enough for him at home and he thinks they screwed his meds up. He won't hear any kind of reason.

At this point I feel the only way anything will change is when he eventually hurts himself enough to wind up back in a hospital. The only way a nursing home will ever be on the table in his mind is if the decision is no longer his, and he will resent me forever for making it.
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I am 69 and I am a Senior but far from elderly. I think that term comes in about 80. But then I see some 80 people that don't act elderly.

I think you, friend and Dad need a sit down. Sometimes you need to be brutally honest. Dad, you can not do this on your own and I can't do it for you. (Me personally would not take care of a man not my husband, if u know what I mean) You need more therapy to help you do for yourself. You wouldn't listen to the people who know what they r talking about. It takes work. I love you and I will help but there are just things I will not do because you can do them for yourself with some work. Do you want to end up in a NH? Because, I cannot physically help you. I need to work.

Like said, if he lands in the hospital again, tell them there is no one to care for him in his home. He can refuse rehab but they r not suppose to release him without some kind of care in place.

I really feel for you. Your are too young to have to deal with this. But this is the future. More and more people are waiting till their mid 30s to have a family. Meaning that when parents start needing help in their 70s or 80s, the childred will only be around 50 still needing to work and if they waited to have children, still dealing with them or paying for College.
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Rehab will not treat him unless he cooperates. They will simply chart "refused" and go on their merry way. Make plans for a nursing home placement. I would tell him that if he does not cooperate he will end up in a nursing home..because that's exactly what is going to happen. See a social worker -- it sounds like he will be too much for you to handle. Other things need to be done like establishing Power of Attorney (POA) and estate planning both of which require an eldercare attorney in order that Medicaid does not penalize him (if he ends up in a nursing home Medicaid won't pay until a date has passed).
It sounds like he's beyond assisted living. Assisted living means he is able to care for himself; namely, able to toilet himself; just needs some assistance for someone to check up on him. If he requires a lot of heavy-duty care they will not take him.
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I'm afraid you'll have to look at putting him in Assisted Living. Either that or a Nursing Home. With the severity of his mobility he can't make it on his own. He also needs to see a therapist with you so both of you can work things out. The next time he gets frustrated about his mobility, tell him that's why he should've finished PT. Since he didn't this is what he got so it's on him to fix it.
Good luck.
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People do what you allow them to do. If your father didn’t have a clear understanding of what your limits are he is not going to behave any differently.
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Girl, you can't force your dad into a NH--as long as he's mentally competent.
BUT--are you overlooking this big but?--He can't force you to live with him and take care of him, either.
You can offer to help him figure out what his workable options are, and the current situation is not one of them.
If he's not willing to have this work session with you, then see if a representative of your local Agency on Aging or a geriatric care manager might come out to help him make plans for his future care.
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That you are so overwhelmed with this after only a few weeks tells me you are not a caregiver. No offense, not everyone has that heart.

You need to have a talk with your dad about his care going forward. If he is mentally competent you can't place him without his consent. Adults are allowed to make really bad decisions.

He should qualify for some in home physical therapy and occupational therapy, get in touch with his doctor and get him to order it.

You need to find a way to be honest about him taking some responsibility for getting better and finding his new path forward. He is asking to much and if he hurts himself or threatens to hurt himself you call 911 and get him committed to a psych ward for evaluation. He is probably very depressed. Loosing yourself in such a way has to be very difficult.

While he is gone. It could be as few as 72 hours, move out and inform the hospital that he has no one at home to take care of him.

Then do not pick him up, if he finds a way home then you call APS and report that he is unable to care for himself and he has gone home alone and you don't know what to do.

How did he get home when he left rehab against medical advice?

You had plans that have now changed, time to rethink what you will be doing.

It is okay that you are not a caregiver but you can't not make sure that he has care, in your case it is making sure APS (adult protective services) is contacted so they can intervene and ensure he has care.

Tough situation to be in at any age.
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NeedHelpWithMom Feb 10, 2019
I totally second what isthisreallyreal is saying! I am going through a round of home health now and it DEFINITELY helps so very much.

For some reason, parents do not tell the occupational or physical therapists they can’t do it.

The therapists are in their home, he can’t walk out. Guess he could throw them out. I hope he wouldn’t do that.

Do not be concerned that they will ask your parent to do something beyond their capacity. They absolutely will not. Tell your dad they won’t push him past his limit. They start off slowly and gradually increase the difficulty but never beyond what is capable. Go for it!

Your dad will be grateful even if he complains. You won’t be sorry even if you have to listen to him complain. It is worth it.

My mom is 93 with Parkinson’s disease and had done home health last year after a fall and is now doing another round of home health due to another fall.

I am blessed that my mom has a wonderful primary care doctor who insists that she does home health when it is needed. You may have to push a bit but don’t back down.

You’re cheating him and yourself if you do not at least suggest to his doctor that he needs home health. Make sure you attend his doctor appointment and speak up. This way the doctor has the complete story. He won’t be able to tell the doctor that he doesn’t need PT or OT. Plus they will send out a nurse and possibly a person to help bathe them too.

The biggest benefit is that he will gain strength and balance which will help prevent future falls.
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