Hospice Input

[AnnieO]

Hello,

As you know my dad is in the hospital. Today, the director of hospice and a social worker came in to talk to my dad, and my brother and I. We didn't know they were coming. To make a long story short...they feel it is time to stop the HIV meds and get hospice involved. We all agree, except my dad. This is the hard part..my dad is now developing dementia, most of the time he does not know what is going on, where he is, what year it is, and believes I am my mother. But, when these people ask him what he wants, he says "keep fighting and keep hope"..and the very next sentence he talks about getting dressed and getting ready for the boat. They said we have to go with my dad's wishes and keep doing what we are doing. Has anyone gone thru anything similar? Do we try and convince my dad to stop the treatment? I don't think he even understands what is happening.At some point when he isn't able to say "keep fighting" will we then have to make the decision to stop treatment? Having just watched my mom go thru this in Dec.we know the path we are on. We just want to make my dad comfortable. The drugs are so powerful and are not helping..we all need the support that hospice offers. Any experience in this situation? Thanks.

[Bebekat]

AnnieO,

I don't have the same experience as you. With Tom, we held on to hope until the last week. We decided on hospice at home and he died within a week. He didn't suffer any dementia, so he made all the choices to the end. He was able to maintain his dignity. It was the right thing for us.

I feel you should go with your dad's wishes as long as possible, even though you may know the outcome. You should also strive to keep him as comfortable as possible. Hospice can come in at any time with little notice.

Only you can know the right choice to make. Yes, you may have to make the choice to stop treatment when he can no longer choose for himself. My prayers are with you in this very hard decision.

[kayc]

AnnieO,

My heart goes out to you. This is a very hard time for all of you. My mother has always been mentally off and has grown much worse in her latter years, so I can relate in that a lot of the time she makes decisions we don't feel are best. She is not someone who is open to our suggestions and blames or is very angry with whoever disagrees with her. We have come to accept her decisions as hers, realizing it will be her that suffers the consequences. If a doctor ever deems her unfit, it will be their decision, not ours. It is very hard because right now she is 84 and still living in her own home, even though it doesn't have adequate plumbing, heating, etc. All of us kids have exhausted our means to help her and have all tried our best and been met with resistance. I wish there was an easy answer. Have you talked to his doctors and do they concur that it is up to him, in spite of his dementia? It's hard to push something different on them when you realize you'll be hated to the end for it and they won't understand or agree with your decisions. I wish you the best, I know it's hard.

[Trudy1964]

Annie,

My heart goes out to you for the decisions you have to make. You've already been through it once. Going through it again so soon has got to be extrememly painful. My only advice is follow your heart and make decisions that you can live with later. Before my Mom found out she was dying from cancer, we found out she had a kidney disease. She was heading for dialysis. Her choice was not to take the treatment. The hardest thing I have ever had to do in my life was make sure she understood that without dialysis her kidneys would eventually fail and she would die. Being 75, she didn't understand a lot of the medical terms. We thought we had time down the road to worry about that. That, however, is not what she died from. She never got to that point. She got her wish--no dialysis. Instead, we found out she had lung cancer. Again she chose no treatment. And again, I had to make sure she understood what that meant. I'm not sure if she made her decision for her or for us. My Mom was that kind of a Mom. She didn't want to be a burden on us. Anyway, my point is I signed the do not resucitate because I knew my Mom didn't want to live that way. I don't loose sleep over that. I loose sleep because I have a broken heart and miss her so very much.

I'm not sure if this will help you any. You know your Dad. My Mom would not have wanted to live that way. I pray God will help you find an answer.

Missing my Mom,

Trudy

[MartyT]

Annie, I'm just wondering ~ did you receive the PM I sent to you on Sunday?