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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.

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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 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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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 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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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 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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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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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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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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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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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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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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I see your Frustration and I also am seeing your Kind Heat from the very Start. More so, I am seeing you and your Boyfriend as Enablers by Living with a man who definitely Needs to be somewhere where he needs 24 hour Care when you are Not there. Apparently the Roommate is not working out, It's wearing on your Nerves and even now, Dad is falling and it is not safe for him to be there. What if Dad lights the house on Fire during a Fight with the roommate or something else that Involves even the Roommate's Demeanor?
You need to Call Protective Adult Services and Have them Come up and Intervene. Something has to be Done, hun. Dad is getting Bad, More Mad, And I am actually scared that if you and your boyfriend are gone even for a Day, Something or Someone is going to Pay...
Please, Someone has to Intervene, If you Know what I Mean. This never ends Pleasantly with a Stubborn old Mule....
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Ikgbrd, I know how difficult this is for you Bc I am an only child caring for my elderly father who also would never consider a nursing home. You, however are much younger than I am - I have raised my children and am retired - you have your whole life ahead of you. Do NOT allow yourself to sacrifice happiness to care for your Dad for the next 20 years. I understand the difficulty of saying no - you think you will disappoint him, break his heart, etc. but it is okay to create the white lies with some hard truths to make him understand that he needs to be in an assisted living facility. (1) you have a full time job, (2) you are not strong enough to lift him when necessary, (3) you have other obligations. Once you commit to live with him (or have him live with you) it will be nearly impossible (both physically and emotionally) to change that scenario. So much better to deal with it now - become less available - say you have more responsibilities at work. It is better to deal with this early than to let it linger. Good luck.
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This situation is very difficult and clearly too much since he isn’t cooperating in his own care. Get in touch with the social worker assigned to him in rehab or better yet your county likely has a Department of Aging and Senior Services. Call them. Explain his situation and the need for care. Be clear that you are not available to be his caregiver. They can send visiting nurse out to evaluate and provide services. You can also request from his doc home PT and OT. Also can you add to the AM aides duties? Add all meal prep for entire day for him along with other things to help you manage as you figure all this out. I bet he is so frustrated with his situation so not seeing yours clearly. If he wants to remain more independent he must make efforts to learn to care for himself and that means more PT. So the choice is his and that is something you can tell him that he can either go into a place that offers assisted-living or work at being more independent. Another resource for him might be services for the blind. You can ask the social worker about that as well. Tell him you are exploring these things in order to help him be the independent man he wants to be. Getting help enables independence. If he refuses all of this, Then ask him what he intends to do when you move out. Social services should help you/him navigate.
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I understand. It's very hard to see the big picture (when they don't) and have so much going on...caregiving, working full-time, etc--it's is a lot!
I totally get it!
It sounds like he may need to consider moving himself. If he requires
24-hour care now because he's at risk for falls or another stroke, you may have to consider it.
As I learned myself, I can support their journey, yet I cannot live it for them (my parents).
Let him choose to do rehab or not, he's making his bed, and he has to lie in it, no matter how hard he makes it. It's the only power he has left.
He can't force him so....
Perhaps he sees himself, he requires more rehab? He may be able to go back....

I would talk to an elder lawyer, Senior Services Agency, and find out some information...are you his POA, Medical POA, etc. If not, that is also something to look into to...and talk over with dad. Does he have money or would he be on Medicaid?

When you are CALM (and only then), talk to your dad with honesty and transparency, from your heart. Then take appropriate steps.

Let us know how it goes. You can always come back here for more support...all the best!
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He needs to be moved to Assisted Living. Sell the house after he moves to pay for the expenses. When that runs out he will need a Medicaid facility if he isn't already in one. You need a life.
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gdaughter Feb 2019
It's not totally daughter's position to make the decision and he sounds competent to make his own decisions. It's also rough to make a move once one has acclimated and made friends to another facility.
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I feel for you as I'm in the same position with a stubborn mother. I am her primary live in caregiver for the past 13 years. It's very difficult dealing with a non- compliant parent. Mom sounds very much like your dad. About you, your young with a future ahead of you. Your young life will pass by quickly. Don't devote your life to caring for him as only resentment will fester. You will end of regretting it later in life. Look for ways to have help for someone to look after him. A friend gave me advice recently. She said, "It's time for you to be your mom's daughter and not your mom's caregiver". I understand how frustrating caring for someone that is constantly fighting you tooth and nail. All you want is the best for them and they don't see it that way. It's all about losing their independence. You will lose yours too. Parents have a hard time letting go of it. My advice to you is to look for ways to have someone to help you out. I took the advice of that friend and as expensive as it is, I hired someone to be with her part time so I can start to reclaim my life. Part time is not even enough, it's a start. You can't put a price tag on your emotional well being. Have you considered calling the Department of Aging in your area to see what resources are available in your area? They can be very helpful.
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Have to get to work but my heart is breaking for you so am writing this quick response. I am so sorry for what is on your plate. Your own life is in turmoil now...I think one of the hardest things for all of us is to realize we have to let others make their own decisions if they are competent. We'd always want that for ourselves, that freedom...so as hard as it is to watch someone suffer from their own choices...that's really one choice we don't have. But that said...you sound as if you are also experiencing caregiver burnout. I don't work nearly as much as you, but I am more than twice as old...but the energy drain from work, coming home to fix a meal (not even every night) and cleaning (though for two people)...it's a load...and having your sleep disrupted...it just can't go on this way for you. And 70 is awfully young. My guess is he is realizing the mess he's in and maybe feeling some guilt? for what he's put you into. You might have to tell him how you have phrased things here...you've been a good father, I love you, but I can't do this alone. You need more help than I am capable of providing. And then explore other resources: Do you have an organization like a Society for the Blind? Maybe another rehab center will be more pleasing to him? Some advice from an MD he sees? Your local area agency on aging may have some resources to connect you with a social worker. Was he in the service? VA may provide some in-home assistance. And if all else fails...adult protective services...it's probably not the way you want to go...but your well-being and life are in some jeopardy too. I hope things work out...you'll be in my thoughts and prayers...
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Do you have poa & health proxy? Have dr come to home & get script for home therapy. Don’t quit your job for your Father. He needs 24 hr care . Get dr to file for Medicaid or if he’s a VET, veterans benefits. Insurance can pay for help in home or SNF after hospital stay. He probably has early dementia so he will need to see Neurologist or Geriatric Psychiatrist . He had trouble with physical therapy at rehab so he got discouraged & gave up. If he doesn’t show progress, Medicare doesn’t pay. Don’t give up your life for him. Hugs 🤗
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I'm sorry for your Father. And for you too. The best advice here I have read is to find an assisted living place for him and sell his house to pay for it. You can still visit him, and who knows he might get to like it there.
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Your father could potentially live 30 years or more. His needs will grow, not diminish. Don't spend the next 30 years feeling frustration and resentment against your father. You are far too young to give up your life to his needs. Regardless of his reasons, he is committing emotional blackmail if he expects you to drop everything in your life to take care of his needs. Work on setting your boundaries and practice saying "No."

I myself am in physical therapy currently. All my therapists and doctors tell me that I am unusual in that I aggressively pursue getting better. Many patients are just like your dad. They drop out of therapy because in their mind it isn't worth the effort. So, don't think of your dad as particularly obstinate for just that reason. Sometimes they are right about their therapy because the facility or the therapist isn't any good at helping. Look for a good outpatient therapy clinic, and arrange for him to go back and forth. If he doesn't like his therapist, find him another.

It's not ok to take for him to take over your life. However, it's up to you not to let that happen. If you do, that's on you.
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Sweetie--
Your dad's choice to not make decisions does not make a crisis for you.

He refuses PT and OT at the age of 70? 70 is the new 50! My guess is he is angry and depressed and you use those words in front of him and you will have a major blowup.

You have a life that is just beginning. You are looking at up to 20 years of care for dad, and trust me, he isn't getting better w.o help.

I'd make a checklist of things to discuss with him and then when you are BOTH calm, sit down and have a polite, adult conversation with him. It's not like he doesn't have ANY care, he has 4xs the amount most people get.

Bottom line: if he refuses to cooperate, then he is heading to a facility where he CAN be cared for and not burden you with this nonsense. And stick to your words!!

People come back from strokes--all the time. He just needs to put his ego on the back burner and let people who are trained in this--do their JOBS.

My guess is he is very depressed about having the stroke. My DH had one, and luckily it was due to a hole in his heart, b/c a 30 minute out patient procedure completely took care of it. Still--the day we waited on the DX for this--wow, he tanked, emotionally.

Don't let him get to you, my guess is right now he is funneling all emotion into anger (guys, esp. will do that) rather than face the truth.

Let you know you do this out of love.
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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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You have done all that you could do for this man. You are young and starting your adult life - this is YOUR time. If the man is so stubborn, and inconsiderate of what he is doing to you and others, then he must be dealt with as a mean, stubborn man - that means YOU STOP BEARING ALL THE RESPONSIBILITY FOR HIM. YOU DESERVE YOUR LIFE AND IT IS TIME THAT YOU REALIZE THAT. You either have to find someone to care for him so you are free or he must be put somewhere. He does not have the right through his behavior and attitude to destroy you. Seek the help you need and make up your mind to follow through. Good luck.
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I understand your frustration. My mom did the same thing. Twice her doctor ordered PT to help her to learn to walk using a walker, twice she was discharged as non-compliant because she wouldn't even try. In one year I have watched her go from someone who was a little unsteady to being completely bedridden. She now had to be fed - she could feed herself, but says it's too "hard". She tells me it's because her arms are crooked (nothing wrong with them). She says her hands are too weak to grip the utensils, but try to pry her hand away from the bed rail and it's almost impossible. She often refuses to eat because she would rather sleep. She doesn't want to try to do anything because her "back hurts". Of course it does, she spends 24/7 flat of her back in bed. We've tried multiple medications for depression, nothing seems to help. She is cheerful with the workers in AL but sleeps most of the time when I visit. I love my mom, but it is infuriating to watch this behavior. She has become almost like an infant at the age of 85. She will not even hold onto a straw to drink. I am angry, frustrated and stressed. Please, please, please don't let your father do this to you. You'll only become more & more resentful as time passes. Don't feel guilty for being young and wanting your own life. Time passes too quickly.
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It is not your responsibility that he made these very bad health decisions. Good grief - yes, I love the person who said "70 is the new 50" because that person is right!
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Hi there. I’m sorry I don’t have words of wisdom but I wanted to acknowledge you. My husband was PAD and he had ignored his doctors’ advice from three years ago. Then this December, he ended up going through vascular surgery and rehab again. And I’m not so sure rehab should have discharged him when they did. I can feel your pain and frustration. Don’t feel guilty. You do have a right to a life, and I know you love your father.

But I wanted to say that there are a lot of people here who can give you useful advice. My husband fell twice during Christmas week and both times I was unable to get him up. We ended up calling 911. Twice. Then when the cops are there he downplays what’s wrong. I hope your dad and my husband will learn that they HAVE to take PT and aftercare seriously.

I’m not a fan of the urinal either. 😐
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