Follow
Share

This is so exhausting, my 75 YO dad has cancer in the brain and lungs, he had surgery for the biggest tumors in the brain and was supposed to do radiation for the smaller ones, then Chemo for the lung, with still only a 50/50 chance. After the brain surgery he refused to do any real PT, and fought going to the treatments, went to half. Then said I'm done. I just want to go home, he went home on Hospice. Once he got home he still would not try to get up and walk at all, and hardly ate and it got to hard on my mother, we tried for 3 weeks. We moved him to a beautiful hospice house. Now every time me and my mother visit all he talks about is going home, why is he here, he can't stay here etc, etc...makes my mother feel terrible that she couldn't do it, she usually leaves crying. He's not so bad with others or my sister. He thinks we are the main reason for him staying or going home. We constantly tell him it's not safe for him at home, Mom can't do it. You are doing the same thing here you would be doing at home, laying in bed watching tv. He has a big family and get lots of visitors. But I dread visiting because it's never just a visit, it's us constantly trying to explain why he can't go home. He still thinks he's going to get up and walk out of the place at some point.

This question has been closed for answers. Ask a New Question.
Bkwudz ,GOD BLESS YOU ALL!! I will pray for your peace ,there is no right answer .But your mom and all of you and the sibleings need to know in your hearts your Dad is probly right where he needs to be ...like I continue to say Hospice is all about comfort ...keep on visiting or you'll feel guilty ..hang in there..GOD WON'T give you more than you can handle! Prayers to you all!
Helpful Answer (0)
Report

This sounds crass, but would he be happier if he were told he'd have to pay for full-time care at home, costing $x more than his current placement? Of course, if he thinks he needs no help, that won't fly.

The sons usually tell my FIL that he needs to be able to get up and walk before he can go home. Then he says he "walked yesterday." Then they suggest he show them now, and he can't (hasn't walked in well over a year), so he gives it up--sometimes.

His wife tries to tell him he has to get better first. Sometimes that works; sometimes he just gets frustrated about it.

Love your dad while he still knows it; tell him you're sorry he's so sick.
Maybe even ask him if he realizes how bad your mom feels about not being able to care for him and ask him to let up on demanding too much of her. That wouldn't work for my FIL, because he's a selfish narcissist who doesn't care what pain he causes his wife, but if your dad can still understand this and does care, he might be able to show it.
Helpful Answer (1)
Report

My mom (with dementia/alz) would always ask when she could leave or when I was taking her back home. It was terribly stressful. But as time went on I would just go along and tell her we would have to ask the drs. Chances are your dad is going to start forgetting more and more with the cancer as it progresses unfortunately (fortunately). My dad ALWAYS felt guilty (and be quite emotional) when I would take him to see my mom because he hated seeing her like that. I finally gave him permission to not go. He would but not very often. I don’t know how often your mom sees him but maybe have her go less often or shorter visits. I used to think we had to stay a long time but that’s not the case. I had professionals tell me that you have to do what is good for everyone. If it is upsetting your dad then that’s not good for anyone (him especially). And, as we as humans do, we tend to take things out on the people we love. The aids/nurses/hospice are all trained to deal with this and all the emotions that come with it. You and your mom can’t help but feel guilt when you are there or leave. I used to cry like a baby in the car when I would leave ( some days were better than others and I would give God the praise). We are human. Can’t help but feel guilt although Guilt means that you KNOW you have done something wrong which in this case your mom hasn’t just like I couldn’t take care of my husband by myself under these circumstances. I pray for you and your mom to have peace over this especially your mom. I also pray for your dad to have some kind of clarity and memory/understanding of why he can’t be at home at this time. Good luck and God Bless.
Helpful Answer (0)
Report

bkwudz: I am glad that today was a better day for you, albeit not perfect. "Going home" could mean a different home, one where he can receive proper medical care.
Helpful Answer (1)
Report

You might try to find the book Being Mortal and recommend it to your mom after you read it. It's a quick read and very interesting. It helps put things in perspective.
Helpful Answer (3)
Report

today was good and bad, recently We had been pretty much doing what Jeanne suggested, agreeing with him, "when you get better you might be able to go home, lets take it one day at a time" But today he wanted a meeting, so I met with the social worker first , and we decided we would try to refresh his memory as to why he was here and let if go from there. and it went well, although sad. he knows he has cancer, knows he did some treatment, knows he didn't want to do any more and knows the outcome. What he didn't understand was why he couldn't stand or walk, and we just said it was the cancer making his body weak. And he was okay with that answer. In the end he was at ease I think, knowing what was going on again, although he was sad again, as he was when he first found out. Overall I think him not remembering what was going on and not knowing why he was really there was more stressful to him. I think we are in a good place now. we shall see. Thank you!
Helpful Answer (6)
Report

I wonder if it would help to agree with your dad? "Yes. As soon as you get enough strength back to walk, then you'll be ready to go home." Or "I can understand why you'd rather be home. I'd want that too. But as things are you need more people to look after you. We love you and want the best for you. When you are well enough we'll bring you home."

This may not help at all. But I think I'd try it a few times and see how it goes.

My heart goes out to all of you. This is truly a very sad situation.
Helpful Answer (3)
Report

Your poor mother must feel absolutely dreadful. She's losing her husband *and* she's afraid that she's let him down (she hasn't. She's chosen a better option, a place where he can get far more comprehensive care and support than he can get at home). What can you do but keep reassuring her?
Helpful Answer (3)
Report

Thanks for the replies, it is all helpful, i have no problem visiting and letting him vent...i don’t argue, ill usually go take a walk if he insists on going on. Its my mother i feel bad for, and she knows its not her fault, but when she goes for a nice visit and sometimes he wont even talk to her, i’m sad for her. The nurses are wonderful, and often intervene and try to divert him. They do give him some type of medication that mellows him out.
Helpful Answer (3)
Report

Your fathers illness is a terrible one - tell you something you don’t know, right?

Has his doctors or the hospice folks given you any sort of timeline? I know the typical hospice qualifier is six months but your father disease may have a different agenda.

I only ask to perhaps generate some ideas to a fix that address short or longer term needs.

I do know that the path you fathers final days or weeks may be extremely difficult- cancer is such a monster. 
Do know that intensive hospice care - vs the once or twice a week Home visits is the best choice for your fathers care. 
Helpful Answer (3)
Report

Of course he wants to go home and die in his own bed Most everyone does. it is possible he would be just as difficult at home even if you were able to hire enough help to give Mom a hand. he would be arguing against the disease, the Drs, the treatments he did or did not receive. All you can really hope for is to try ad get him to accept his situation. Family talking to him is not going to do it ,it needs to be a professional and possibly and not I say possible some anti anxiety meds.
When some one is placed in a nursing home loved ones are generally advised not to visit for several weeks to allow the patient to acclimatize themselves to staff, new surroundings and accept their new reality.

Try and get your mother to understand that none of this is her fault, she did not give him cancer, she did not refuse to let him have treatments. She may love him dearly and if she could she would make him better. Concentrate on supporting your mother and helping her understand it is the disease that is doing this.
On top of his his cancer is in the brain and if it started in his lungs and these are secondaries his time is very limited and he will gradually sink into a coma.
Above all do not blame Hospice if he needs strong pain and anxiety medications. He will need them make no mistake and even an unconscious patient can still feel pain.

When you visit try and distract him as much as possible. Tell him that if he gets better and will do the PT etc he could be considered fit to be discharged. Take things like the newspaper and magazines that may interest him. You can even argue politics and the state of the nation if that diverts him. if he likes music take his favorites in and play them softly while you are there. even try burning a candle. Lavender is a good choice because it is said to have a calming effect. Take him small amounts of his favorite foods.( I whisper this) but have the staff push his bed outside and let him smoke if he has been a smoker. At this point you can not make anything worse.
If there was a whole family of big sons at home I would say take him home, that's where he wnts to be. You are all doing the best you can so try not to get upset, none of this is your fault. It is bad enough knowing you are going to loose Dad soon but not being able to grant his wishes makes it even worse.
One last word, be prepared for his mental state to become much worse, cancer in the brain will do that.
Helpful Answer (5)
Report

I'm very sorry that your family is going through this. It is about as harrowing as ordeals get.

I really don't know what to say to you. You don't have to visit your father. It is not the law. Do you want permission not to go? - or to visit less often?

Do you want somebody to suggest something that will change your father's behaviour, and make him able to accept being away from home? I'm not sure that would be achievable. But you and your mother can perhaps avoid engaging with him on the subject. Talk about something else. Say "we'll see how it goes" or "we'll talk about that later" and move on to asking him how he is doing today.

Your reasons for finding him a good hospice are very sound. Your mother has to live in her house now and in the future; and if caring for your father at home, after a fair trial, proved too much for her then that's that: there is no further justification needed. But actually, that means that you and your mother are the main reason for his being where he is. Still doesn't make it the wrong decision.

The thing is, I think whatever you say about any subject, this is still going to be a dreadful time for your father, your mother and for you. Does the hospice have any resident counsellors or ministers who could offer support?
Helpful Answer (6)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter