Hospice in an RV

Some of you know my DH has had some serious heart issues for years. Well they have gotten a lot worse over the last 6 months and the docs have said he is now coming to the end. A couple of months ago, they said he might have up to a year, but he has steadily gone downhill to the point where the days he cant do anything are outnumbering the days he can.

This week, he signed up for Hospice services. Its taken some finagling, but they are going to give him a new portable oxygen concentrator. The full size ones they normally give out doesnt work well if we are hooked to 30 amp power and have other devices plugged in and running. He got a scooter and a lift for our Jeep from the VA, but they wont give us a ramp because they only put them on permanent structures.

The next thing I am working on is getting them to ok a chair lift so he can get in and out of the coach. He has a really hard time getting up the steps some days. They dont have one in their warehouse, but they may be willing to get one. We just have to jump through the right hoops. I think they are creating new hoops because its a coach and not a S&B house.

At this point, it doesnt look like we will be able to do anymore traveling. They are constantly having to change his medications around because his body isnt metabolizing them the way they should resulting in his blood getting too thin and his blood pressure suddenly dropping too low. He has asked for no lifesaving measures, so even if his fluid level builds up again, he will not be hospitalized. Hospice nurses will come a couple times a week to monitor him. I got him a Tshirt that says "Im not dead yet". That way he can just show them his shirt if hes ok when they come.

Hes ok with dying. He is 77 years old and is actually surprised he has lived this long. He doesnt want to live if he cant do anything. I have known since I met him that he had heart issues and I feel lucky for the 13 years we have had together. There were a lot of times when he got so bad, we all thought he was a goner but he pulled through.

Bob really wants to go back to Minnesota to visit friends and family and say goodbye. We will stay here in San Antonio until May or June and see how he is doing. If he is up to it and his medication remains stable, we will head back home. If not, we will just stay here, and hopefully be able to make weekend trips to Padre Island or some of the campgrounds around here.

Caryl, tears are running down my cheeks as I read your message. Bob is a model for others to survive as he does, and he must have a great sense of humor to wear and display that t-shirt. I'm amazed that you're able to jump through all the hoops necessary to get hospice and other support at your RV. I truly hope Bob gets to go back to Minnesota to visit friends and family and say goodbye.

Caryl, it sounds like you're doing more than anyone could expect to be done - especially with the VA.  Good for you!  And for Bob who is facing his future with grace and humor.  Being the caregiver is never easy so I wish you the strength you need to continue doing what needs to be done and I also hope you can go home to be with family.

Sending good wishes to you both,
ArdraF

Carl,  you two are an inspiration. You seem to be coping incredibly well under the circumstances. I hope things work out as planned and Bob gets to wear that T shirt for longer than expected. Sending hugs.

Caryl, my fervent wish would be that Bob gets to wear out that T-shirt, but if that's not to be, I'm glad he's at peace with his life. I do hope he gets that visit back home though. My best to you both...

Tears to my eyes too. I am also a caregiver, it is not what we signed up for but this is the hand we were dealt so we play it the best way we can. I sincerely wish you peace and comfort.

My husband is an amazing man and its our humor that has gotten us this far. True story..... He was in the ER having a heart attack. They had an IV of Nitro running, but his blood pressure was still dropping, so they were getting him ready for a ventilator. He took the O2 mask off his face and looked at me and said "I guess I shouldnt have taken all that viagra". The nurse was crawling over him on the bed to reach his IV to pull it out before the doc stopped her. She could tell by my face that he was joking.

Another time, again in the ER, they had taken him in for xrays. It was a different person who brought him back to the room, so as the guy brought him in, I said Bob was not my mother. Bob then started flirting with me as if I were a stranger. I took pity on the poor tech who was totally confused, not to mention blown away by the things Bob was saying to a "stranger".  ;D

That is too funny, I can't stop laughing.

I have a friend who has a heart pump and battery pack he carries.

Tears here as well, so sorry you both are going through this.  As a husband of a Hospice Nurse, I have an understanding and empathy for you two.  At least your attitudes remain positive and a sense of humor intact.  Positive thoughts your way.

I have a friend who has a heart pump and battery pack he carries.

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We actually checked into that when they first came out with them. I cant remember why not, but for some reason it wouldnt work well with his issues. Maybe cause he had other issues too?

I did point out that in case of a zombie apocalypse, he would be safe because he wouldn't have a heart beat for the zombies to hear. He could sneak up on them and then kill them, saving the entire planet even.

    Has he looked into a heart transplant or are there other issues that might not allow that. Cleveland Clinic and John Hopkins will take patients in their 70's

Has he looked into a heart transplant or are there other issues that might not allow that. Cleveland Clinic and John Hopkins will take patients in their 70's

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He was told 7 years ago to try and get on the transplant list at the U of M. He was denied because of his age, and because of other issues that he has. So the fact that he has had 7 years after that, 3 of them with no issues whatsoever is amazing. Must be all that not so clean living during his youth.  :

cadee2c said:

He was told 7 years ago to try and get on the transplant list at the U of M. He was denied because of his age, and because of other issues that he has. So the fact that he has had 7 years after that, 3 of them with no issues whatsoever is amazing. Must be all that not so clean living during his youth.  :

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    At 60 I was told by my doctor I was too old for a lung xplant, then at 62 another Doctor sent out 5 applications and after being turned down by Mayo Clinic and Emory I was accepted by Tampa General and here I sit 4 1/2 yrs later with new lungs. The key is to never give up until all hope is gone...then make the reaper work for his due.

    Tampa just xplant lungs into a 70+ woman on my last visit in December and lungs are much harder to transplant than hearts. Just sayin because if he is resolved to his fate with the good attitude you describe me may fool everyone. Attitude is everything! I wish him peace.