father has no joy

[beachbaby]

For good reason. He was diagnosed five years ago and his life now is his chair and his television. He doesn't go anywhere, doesn't want to do anything. He feels like his room is his prison. I have no idea how to help him see the positives, that he is still alive and can spend time with his grandsons. It is the most depressing thing I have ever had to endure watching my father die this way. I try to keep things light with him. Nothing really works. I can understand why and would never assume to know how he feels, but I feel like he should try to live what life he has left. Does anyone have any suggestions?

Thanks,
Dani

[Icanmanz]

Wow, beachbaby! I keep running into one "toughie" after another, and here I am trying to come up with something positive! Am I making any progress? Hmmmmm, I don't think so! You see.................Als is sooooo damn hard to deal with! It is hard for the loved one, and even HARDER for the stricken person. It is so easy for us to say that everything is going to be alright, and we'll say little things like, "I am here for you. Whatever you need you can count on me." But Jesus Christ...........who wants to be in those shoes? Am I making any sense? A lot of times I tried to go along with my son when he begged me..........."please, no tears," but do I know how he was hurting inside? No, of course not! I am not talking about Als pains, due to cramps, or whatever. I am talking about the "Why me?" pain!!!! I will never ever accept this damn disease! I do not know where in the "hell" it hails from, but I hate it! It robbed me of my son, and made my life a miserable "hell." I have accepted my son's departure, and I know my Father called him Home, but why like this? God bless you all,, and forgive my ranting and raving!

Irma

[Mary Helen Barr]

That was my father's life for his last two years. He even slept in his recliner chair. He could only get out of it when I came over each day to take him to the bathroom, or for doctor visits, etc. The chair and the TV were the only things for him. He couldn't read the paper or do anything else. It was very sad. He did get joy from my visits, though, and other visits from people. Two days before he died, the hospice nurse asked him if he wanted to continue living like this (he had asked her how he was doing), and he said yes. She had told me she had never seen anyone so pitiful as my dad, but he still wanted to live. When first diagnosed, he would talk about killing himself, and that he would make sure he was gone before he ever had to get into a wheelchair. Well, as each new loss came, we dealt with the change, and he still wanted to live. I don't know what help to offer you, but to just spend as much time with him as you can. I would think your dad gets some enjoyment out of that. Maybe "JOY" isn't the appropriate word, but your visits can brighten his otherwise monotonous day. Mary Helen

[quadbliss]

Hi Dani,

I don't know if it can help, but I would like to recommend a book called "The Art of Happiness" by the Dalai Lama and Howard Cutler. I would suggest the audio version if you can find it. :-D

Though the book comes from a Buddhist perspective, it is aimed at the western reader and is not religious in nature.

Mike

[anneinma]

My husband enjoyed going for rides. Sometimes to see the flowers or get an ice cream cone. On some days we would even go out to lunch. My husband felt trapped in his body and having been a very active person previously found it difficult to sit and watch TV all day. When the weather was nice I tried to get him out of the house.

[fiddleplayer51]

Dani,
I don't know how easy or possible it is to get your father out to the car, but it sounds as if he's down in a funk and can't get out. When you get down far enough, it's impossible to see the positives. Your father may need to just be taken out even if he protests. Can you take him somewhere and wheel him around?

I see from your first post that you're an hour away? That makes it more difficult, but are there others in his area who either have ALS or are wheelchair-bound but are managing their situation with a more positive attitude that you could take your father to visit? Maybe there are other veterans with ALS that he could meet with and talk about what's happened to them and even ***** together, or share some laughs over common memories. (I should think that there'd be lots of veterans in Florida.)

Sometimes just seeing others in the same boat who are dealing with similar circumstances is helpful, or being with others who might share some common memories (such as veterans) can be a boost. It helps one feel less sorry for oneself. And to remember events, etc. in common with others helps one feel as if one is still a part of life and of the world, a link in the chain.

You say he's had his diagnosis for five years. How old is he?

Good luck, Dani. I hope you can find some solutions.

Jane