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Need Advice

Posted by SandieFL (My Page) on
Tue, Dec 27, 05 at 15:18

I have been taking care of my Dad for the last 16 years.For the past three years he and my unmarried brother have lived with DH and I.Dad has diabetes,triple bypass and started dialysis in August.He had five toes amputated before finally having his left leg removed from below the knee.In the past two months he has suffered a mild stroke ad had the amputation.He is in a nursing home right now for rehab.He was there after the stroke and hated it and begged us to bring him home.Now he is in becasue of the amputation.He is 83 years old.He is terrible to the nurses,won't eat the food and just wants to come home.Also he can barely see since the stroke.He has seen his eye doctor and been told that it is because of the stroke and his vision might return or it might not.He wants a second opinion.My nephews brought him to my daughters home on CHristmas day but he was told that he had to go back.My nephews are two pretty big guys and they had all that they could do to get him into the car,out of the car into the wheelchair and into the house.Dad thinks he proved that he could come home.My DH,brother and I are not in the best health and there is no way that we can lift him.He is 200 pounds of dead weight right now. I know that he can't come home right now but everyday we have to go through the same thing with him.We don't want him home,he will starve himself do death if we don't let him come home.Have any of you had to deal with something like this,and how did you cope?


Follow-Up Postings:

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RE: Need Advice

I have not dealt with this on a personal level, but work as a CNA, so I have seen this on the job many times. He does sound as if he wants to truly be home, but he himself has to well enough to be home. Does he qualify for any in-home health care services? IF he came home, and you guys could handle it, would his dr. be able to set him up with some kind of lift to assist you all with transfers to and from bed, chair and or wheel chair? And next, do you truly want him back in your home, as I realize that from what you wrote, he does sound as if he is a handful. It's a tough spot to be in, since he is not happy about being away, poor eating, etc. I hope you are able to find some kind of help to assist you in your decision making. I wish there was one easy answer here....good luck and keep us posted on what happens. We care.
Emma in PA


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RE: Need Advice

You, your DH and brother, and the rest of the family have done an heroic job caring for your father, you should be very pleased.

It may be time to say "enough", sure he wants to "come home" but you all have to decide if the cost is too high, and it seems like it is. You will have to sit down with him and someone like his minister or the Social Worker at the nursing home and tell him that the decision has been made. You'll have to make it clear that you won't negotiate or argue with him. If he doesn't eat, he doesn't eat, and there's nothing you can or should do about it. Don't try to coax or cajole him, it won't work. Leave all of that to the nursing home staff, they know what they are doing.

I worked in Home Health for many years, both Medicare and private pay. While there are services available, they will become expensive, Medicare won't pay for long term assistance. He needs the services and staff that a nursing home can provide. They can do a much better job, and can provide activities and socialization that you can't.

Don't visit him every day, once or twice a week is fine. Bring his favorite foods and take him to another room for lunch or dinner, make it a special visit. If he whines or has a tantrum, you'll have to leave.

You, your DH and brother need some boundaries in your life or you will burn out. If something happens to one of you while you are trying to care for him, he'll have to go back to the nursing home. He's far beyond the point that he could benefit from good nursing home care.

My dad (bless his heart) wisely refused our offer to have him and my mother live with my XH and I before they moved to a retirement community. They both died there, in the nursing home, after many years of independent living. They were loved and received wonderful care and attention from the staff. My dad made some very wise decisions, and I will be forever grateful. As my sister and I moved him through the levels of care, from independent living to assisted living to the nursing home, we explained our decision, and though he was a little disheartened with each move, he cheered up quickly because of the caring staff and his pleasant disposition.

Good luck.


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RE: Need Advice

Don't worry. It's highly unlikely that he will starve himself to death. It wouldn't hurt for him to lose some of that weight. I agree, don't visit so much. If he wants to know why, explain that you don't want to listen to him complain and that he can't come home because he needs the nursing care. As long as he thinks he has a chance to go "home" he will try to persuade you to let him.


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RE: Need Advice

I thank both of you ladies for your kind answers.To be honest with you I am not sure what I want.It breaks my heart to know how much he hates being in the nursing home,but my mind and body tell me that he is not ready to come out now and I am not sure that he ever will be.Dad has always been very domineering,and every thing has to be perfect and that is only if it is done his way.If he can't do it his way,then he wants nothing to do with it.He doesn't want a TV in his room because he can't be sitting in his chair at home and muting it when the commercials are on or if someone is saying what he doesn't want to hear.He can't see well,so he doesn't want to listen.He always used to listen to CNN all the time,or ballgames,he doesn't really need to see if he can listen.He hates the nurses,says they are lousy and mean to him.He has what they call Sundowner and is pretty bad at night.While he was home after the stroke,before the amputation,he forgot that he couldn't walk and fell while getting out of bed,even though we had put railings on his bed.He ended up back in the hospital.We are already having trouble with medicare so am not sure how much they will pay for.He has no money,so we have applied for medicade and they are taking their time getting back to us.I am not sure how much he is understanding because of the stroke,but he seems to know plenty of other things.He keeps telling us that if he comes home he can eat what he wants,then get stronger,then he will try therapy. He wouldn't eat what I cooked for him anyway.I am sorry that this is so long,but I have been trying to get some help for so long,and I just thought I would come here where people have dealt with this sort of problem.My sister lives in the same city with us and has been going to visit him and one minute she tells me I have to bring him home,the next minute she tells me that he is just trying to get his own way and won't even help the nurses.My brother who has lived with him all of his life and taken a lot of abuse from him,would still do anything for him,and even he says there is no way that he can come home now.I guess I know that he has to stay there for now,until he is able to help us,help him.How do I convince him that he needs to co operate if he ever wants to get out of there?


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RE: Need Advice-----

Don't waste your time or energy trying to convince him. It can't be done. He has to reach a point where he convinces himself. And that may never happen as long as you let him argue with you about it everyday.


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RE: Need Advice

I agree with PB, you can't convince him, you just have to tell him it's a done deal and move forward. It's hard to do, the first time, but if you are firm in your decision, and firm with him, he'll do OK. Don't allow him to argue, if he has a tantrum, leave the room, go home, go do something you've wanted to do for a long time, but couldn't because you had to care for dad. You'll feel a little better. You know he'll get good care, and he'll learn that the better he behaves, the better he'll like it there, and other people will like him.


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RE: Need Advice

Yes, I agree with all of the above. As long as you give him a crutch, he will be dependent on YOU. If you feel there is no coming home, and see that his situation won't allow it, then tell him in a kind but loving way, that he has to stay. This is the best for him. Allow him ot adjust, and accept where he is. Eventually he will come to accept he has ot stay ,and may even learn to like it. They will hestiate at first, but keep the riens tight. Gabby


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RE: Need Advice

You say dad has been very domineering......it's time for you to be.


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RE: Need Advice

Hi! Basically, I agree with much of what has been said above. BUT, if you think that "down the road", if he improves, you can make it at home, you might try setting some small, REALISTIC, goals with and for him, to give him something to work toward. When my father was in rehab after a stroke, he also was miserable, a bit uncooperative, and a puny eater. His heart was very bad and the outlook dismal, but he was determined to be home and we were determined to have him here. I told him that when he could manage the 4 steps to the back door, we would come home. He worked so very hard, and surely, came on home. There was a lot of work left to do, and he went to outpt. rehab. But he needed that goal to boost his spirits and ebcourage him. He did not have "sundowners" (dementia). Good luck with him. I know it is a heartbreaker both ways. Derry


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RE: Need Advice

I think it's so hard when we have to parent our parents. It's hard to have to be the one who knows best, who can see things from the "grown up" point of view, when in our hearts we are still our parents' children. Part of us wants to honor our parents and do what they want, when the other part of us knows that it's just not possible.

It broke my heart to not be able to care for my mother at home. Had I not had scheduled knee surgery when she got her blood clot, she would have been home after a few days in the hospital. It was only because I asked if she could go to short-term rehab, since I couldn't help her at home, that she ended up there....and it quickly became apparent that she couldn't take care of herself any longer. So God was good in that way; He made the decision for me. But it took a very long time for me to be able to accept that it was the best thing -- or really, the only choice.


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RE: Need Advice

Considering your fathers health problems, he would be unlikely to be home for long even if you did figure out a way to make it work. As an amputee with dementia, hes at great risk for harming himself. My mother once forgot her legs were paralyzed and tried to get out of bed. She snapped her arm in two. She didnt have dementia, but her paralysis happened overnight (her cancer moved into her brain), and she just forgot. happened overnight (her cancer moved into her brain), and she just forgot. Your dad is much larger than my mother was, and you would be unlikely to get him off the floor without calling for help. You know all of this: the real problem is your fathers unwillingness to accept that his life has changed in a way he doesnt like.

Do you have Power of Attorney (legal and medical)? If not, you or another member of your family needs to get it now. Have you contacted the local elder care groups in your area? Everyone is in agreement that your dad needs nursing home care (except for your dad, of course), and local eldercare groups may be able to help you find ways to pay for it and speed up the Medicaid process. Is your father a veteran? From what youve described, youre not going to be able to make your father agreeable, so do what needs to be done now and ask forgiveness later.


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RE: Need Advice

It sounds like you have done a wonderful job of caregiver in a difficult situation. Anyone that has ever been a caregiver would understand how stressful this is. One thought comes to my mind. While he is in a nursing home for rehab now, talk to the admission director. You might find it easier to say to your dad "I can't take you home", stating your reason. vs taking him home again and having to say someday. "You have to move out of my home" for a nursing home because I can no longer manage.


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RE: Need Advice

Thank all of you for your care and advice.DH and I spent the morning at the Nursing/rehab home.We talked to the social worker and with Dad's therapists.They all agree that he is not ready to even think of coming home.They suggest that we not come every day and make it clear to him that he is the only one that can make it possible for him to come home.He has to eat what they give him so that he can get stronger and be able to work with the therapists.They did say that today was the first day that he admitted to them that his leg was gone and he did seem to be more cooperative.I am happy for any amount of progress.I guess we just have to take it one day at a time.THank you again.It helps to talk to others that have been or are now in the same place that we are.


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RE: Need Advice

Dear Sandie:
I'm glad that the staff has recommended he not go home. It certainly eases some of your anxiety, I would think. After all, the decision is now out of your hands...when he says he wants to go home, you can tell him simply you just can't.

And you are right...one day at a time...at times, one hour at a time, and sometimes even one breath at a time...continue to breathe, and vent...very important for all of us to have a place where we can go where people really "GET IT"....I wish you well,
Mimi


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RE: Need Advice

Hi Sandie! Well i am the wife of a diabetic, both legs amputated above the knee and my dh can't see well and has had alot of heart attacks! My dh is 51, and everyone loves him to death, we are known as "that nice family", so i know what it's like when dh is in the hospital and hates the food, i get the call from the nurses, that Al asked us to call you and bring him his food, we are lucky that it is only a 5 minute car ride. he had laser surgery many,many years ago and it worked, except he has cateracs, but if you can't lay still on your back the doctor will not do it, so there he is unable to read at all, tv is his friend, and because he doesn't sleep at nite, days and nites mixed up his friend wakes me up at weird hours of the nite - lol! our bathroom door is too narrow, so i'm forever emptying a urinal or the commode. after years ago, Al feel out of his wheelchair and broke his stump, funny now when you think of it but not then. are you also prepaared to give insulin, i give one kind 3 times a day, and one other kind at nite. We have a slider board for him to get into and out of the car, and my dh "was" kindof tall 5ft 11, and was as skinny as a bean pole, maybe 165lbs. and believe me it isn't fun and then putting the wheelchair in the trunk! i've ruined many a good coat from the snow and salt from the wheelchair wheels. Al was supposed to go into a nursing home, which happens to be at the end of our street- maybe 10 blocks and this would have been his new home after the very last amputation, but we figured that he hated the food and i was bringing him his meals, he didn't like alot of the nursing staff, but never said it to their faces, but he put-up and shut-up, all the staff loves him though. but in our hearts we thought it better for us and our son and daughter that he be at home. We use humour every minute we can - like his leg's name is Ricky (even though the legs are funded here and he has something else wrong with him so he wouldn't be able to stand, we have the funding to someone else). i will be the first to admit the somedays are worse than others and i wish i could just walk out the door, since i've been there and am doing it right now, i wouldn't wish my life on my worse enemy and my Al like i said before is the nicest person i know, i am always stressed and am paxil and because of it i have gained about 25 pounds and no longer wear a size 10! like Mimi said one day at a time, one hour at a time, here it's well we got thru the morning, now lets get thru the afternoon, then the evening. Also from experience, when relatives say they'll help out, they might for maybe a couple of weeks, if you're lucky, after that they come out with the best excuses, llike i have to mayonayse my hair!-(no kidding my sil's excuse). But everyone is different, and every family is different, but here, because of all this heart problem stuff, somedays it's like walking on egg shells! Also i have been on the waiting list for i can't remember for how long, put to date, i'm it 24/7, I really,really wish you luck in whatever you decide, but it is REALLY


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What about the Dr.?

If your dad knows his dr. very well, maybe you can get support for his stay in the nursing home from the dr. I was so glad that my dad's dr. got involved with the decision for my dad to NOT drive after his light stroke. Dad accepted it far better than I expected, but a lot of the time Dad's not interested in much of anything anyway. But the issue does rise to the surface every once in awhile, and we have these discussions about it. Part of the problem is that there is always someone worse off, and THEY are still driving, so "why can't I?".

Stand your ground, you can be a better daughter as a visitor!


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RE: Need Advice

How wise they are, you are very lucky. They've given you good advice, and put the decision right where it belongs. Now it's up to your dad to decide whether he wants to cooperate, eat and do the work necessary for you to even consider having him come back to live with you. Hopefully, he'll participate in other activities and find that he likes it there. Your visits can become special events that you both look forward to.

Good luck.


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RE: Need Advice

You know this may pertain ,hopefully and give you some "insight", but we always told my MIL, many times you have to get your strength back to come home, when she would be hopitlized. The last time, she just said, "put me in a nursing home". I think if the ability and strength isn't there, then there is no way they will do it. Some just wear out completly and won't even try. We brought her out many times, but the last time, she was just ready to quit and did. So if the boost is there he will recover, with a little cooperation, lets hope he does. Encourage him about working with them and if the will is still there, he will do it. My MIL just absolutley had had enough and choose I think to meet the Lord. Wishing you Good Luck ,you and your Father...Gabby


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