End stage - Hospice Concerns - Infections

Charles,

Unfortunately, I am not a big component of hospice. My only experience was with my dad - also 64 and in late stage bladder cancer. He had been in the hospital for one month. Could not hold down food. Three tumors were discovered seven months after having his bladder removed. They were rectal, pelvic and one near his stoma. Was suppose to start chemo, but never could get strong enough and the oncologist told us there was only a 10% chance it would help anyway. After very hard news that nothing else could be done for him, we decided to bring him home.

We brought him home on a Monday afternoon and although extremely weak, he was so happy to be home. He sat by the pool for awhile and then in his favorite chair looking out into the garden. He was as coherent and sharp as ever. One hour later the hospice nurse came and began to administer "hospice" medications. He soon feel asleep and this began our nightmare.

I slept with him that night and it was the most horrible night of my life. He was hallucinating, trying to get out of bed, talking like an infant and kept insisting he needed to urinate. I knew it was the medication - this was not my dad.

The next morning I complained to the nurse-when she finally arrived - and the medication was changed. He never regained consciousness again. He died Wednesday night.

I still am so angry that when we brought him home - we knew he was dying - but he was talking and laughing and wanting to take care of some unfinished business. After being medicated, we lost him immediately. If this is how hospice is suppose to work, then I am very unimpressed. Maybe what happened to him is part of the dying process, but I feel like the medication he was given robbed me of the little precious time I thought I had left with him. I wish I had been told that this would or could happen and I would have waited a little longer to give him medicine when he wasn't even complaining of being in pain. I struggle with this daily!

Although I know of so many people who have nothing but wonderful things to say about hospice, I would advise anyone who is considering this to ask many questions and do alot investigating.

Your father, you and your family are in my prayers!
Debi

Charlie- God bless to your father and your family. My father just passed away on December 17th after less than 8 weeks in Hospice care, but at home. We went through several stages where we thought he was close, only to go through the next stage. My father went through a fairly rapid progression of all the end of life stages for cancer patients that are described in the websites. We didn't think he could eat or drink any less until he finally compeltely quit drinking completely. My sister took 2 months off work to assist my mom to care for him in the home because fortunately he did not have the medical conditions that your father has. I am four hours away, so took a few trips in and out. I was there at the the end and go to say our goodbyes several weeks before he passed (which was necessary given that he lost a lot of his mental capacity in the last 2-3 weeks). I don't have anything to add on care facilities because we were able to do it at home. God bless again.

Dear Charlie...Your parents are lucky to have you...I wish for you all Peace for Christmas...May God hold you all close...No time of the year is the "Right" time to die....But I always thought the opposite of most...I beleive that this time of year, when everyone is a little nicer...a little more patient...a little more caring...is actually a beautiful time to go...especially if it was a favorite time of year for your Dad...May he get the most awesome Christmas gift this year the best present in a long time...to be out of pain and no longer suffering...Please think of it that way...I am praying for you all...

With a big ((((hug)))),
Karen

It's been about 4 days since that dark color in the urine.. I find a reminder that he's 64 not 84 helpful to understand his body's ability to tolerate the condition. A bit of a rough night last night, the usual nursing staff is on holiday so some of the contract nurses haven't worked with him before and were rough with his care last night that I gristled over. Also when you have this many people working over him for such a long time you can observe the personality conflicts - that's a serious workplace danger for those in nursing where a team effort is critical to successful patient care.

He's getting pretty hard to look at now that the fat and muscle tissue are in severe decline from the limbs, mom was shaken by that look and I sent her out of the room while I helped the nurses with the cleaning. I plan to volunteer for overnight duty in there to give some releif now that I have holiday break from work.

Charlie,
Well things are moving along for your dad, its my experience that the dark urine means functioning is going downhill. It may mean one, two days. That was my dads experience anyway. I wish you peace and your dad as well. Ginger

I traded nights around and stayed last night for day 55. Agree, his case seems somewhat rare in his ability to tolerate the open wounds for so long and as well he claims he is pain free, but on a relatively low dose on the morphine pump - he's outlasting a box of batteries for the pump...my poor taste humor, but I did get the alarm to replace batteries.

As you can imagine, much earlier in the stay at hospice, despite the severity of the wounds, we often looked at each other asking ourselves what the heck are we doing here??.. he should be back at infusion getting another chemo treatment.

I seem to be faced with the moments after an extra dose for nurse maneuvers for cleaning where the covers get thrown off the bed and I get asked to help him get out of the bed, he says "we're getting out of here" - and you know that's not possible, his legs won't move - and I quickly have to change the subject to distract him before he gets angry.

The urostomy collection bag is the biggest change in the last day or so, highly concentrated like a dark brown apple cider color. His liquid intake is very low so naturally the dehydration and urine concentration are expected. His patch around the stoma leaked too, so that had to be replaced, I never learned how to affix the patch, my sister did. When he could talk more he was teaching the nurses how in only the manner in which an engineer could do things step by exacting step how to affix the hardware to him, ensure proper drainage, etc. At the university hospital the nurses took detailed written notes. He's very very picky about that stuff and used to get very upset if someone didn't do it right or he developed a leak. There is some learned art to affixing the patch to the skin such that there is no crack, tiny fold or bubble that later causes a leak.

We've run through a collection of vhs tapes of which just a vcr in the room, so I bought him a dvd player to watch the latest Bond movie that he missed from early this year and left of collection of other movies for him, he can only watch a few minutes at a time, but something for him to enjoy while I'm busy trying to do my office work from his room with my ears open to assist if needed. We've learned to somehow integrate more everyday life with his hospice room being an extension of home or the workplace. The is a danger to recognize that he doesn't get the rest he needs with the activtity in his room, so we do try to be conscientious about that and excuse ourselves to the library room down the hall so he can get some peace and quiet.