End stage - Hospice Concerns - Infections

I just got back from seeing dad, my turn for overnight is tomorrow, my dad is about an hour's drive from home, fortunately my sister and mother live and work much closer to the facility, they've been able to spend more time in there than I. I make no judgement on those who have not been able to stay with loved one around the clock such as my family, it is very hard to do and we are stretched and could not have done this without the support of nearby family and friends and bring in my mom's sister out of state to stay with us, I also flew in my cousin from LA who is an RN and was very helpful in technical translations. It takes a lot of family to do this. My dad was very helpful to others over the years, in a way the visits are payback time to my father. As well lenient employers have also been very understanding of the situation to be giving of the time without the need to seek FMLA - thankfully that is there if needed.

I want to add that for the most part the army of people that have cared for my father and family over the past weeks have been most professional and caring. I don't want to come across with anything critical towards any one person or specific decisions about his care, rather sharing observations and understanding and hope the discussion is of value to others here. Having said that, however, one nurse was kind of rough handling with dad at the hospital and being the picky person he is, he did request reassignment of one nurse and the hospital did oblige. Something for the patient and caregivers to watch out for, you don't always have to tolerate. I digress, my father with his picky engineering background and perhaps out of boredom with being stuck in a bed, even kept hand written notes for a few days on a steno pad inside a drawer under his tray/cart with the times of nurse visits and activities such as cleanings and the like.. to be somewhat light-hearted for the moment it was comical in character that only my father would do something like that albeit shaky chicken scratch handwriting from the effect of the morphine.

I have found some tendency to confuse "Nursing Care" with "Hospice Care" these are not the same. Initially we started to look for a Nursing Care Facility that could provide hospice services but my findings were inadequate to meet the care needs of my father and for someone who is dying you really want a private room, these I found were rare or had waiting lists and among many ironies on this journey even hospice facilities have waiting lists - can you imagine that? I fear this country is headed for a real crisis with nursing care not able to meet the demand for the aging baby boom population. I had a couple frustrating calls with this waiting list dilemma.. I thought to myself, don't die yet dad, there's a waiting list to get you into hospice care... Yes, this situation actually delayed a couple days getting out of the hospital. Let alone when this crisis started the hospital was 21 beds overbooked, so the initial IV and antibiotics were started instead at the cancer infusion center across town while a room was made ready for dad late that evening...and I drove him over there after the IVs were released. I need to explain that at that time we didn't know how seriously life threatening things were getting and his oncologist was out of town but reached by pager, we knew it was getting bad and the university hospital was where he really needed to be to evaluate his condition and further treatment..(I know there was some behind the scenes action to make a room available) more maybe later on that.

Ginger, I'm very sorry about the hospice experience with your father, how long ago was that? Much like Karen stated, we've had no restrictions on what we could give our father, he got anything he wanted - ice cream, popsicles, a small sip of coffee even a sip of beer his favorite. We even had our entire family and relatives in the room for Thanksgiving and dad was able with help to sample all the traditional fixings for a Thanksgiving dinner. We're always there to give him a spoon of ice chips or hold the water for him to take by straw, I spoon fed him breakfast on days he could take it. Things are winding down now and he stopped eating about 4 days ago, so it is only water now or with a very light mix of gatorade.

Another issue that I didn't mention is the use of sedatives, I have found some source of more controversy in the use of sedatives across the web and their effects seem less predictable to me than the morphine. Every patient is different so results can vary. One day dad was set with a near double hourly dosage of morphine it put him into a comatose state and Ritalin was used to awaken him..it was a bad day..the Ritalin seemed to make him emotionally worse, the next day the morphine was dialed back a bit and he seemed to stabilize. There has certainly been this kind of skipping above the surface of the water, with consciousness, crazy talk or hallucinations, and just plain lots of sleep. Haldol is being used now which I guess is helpful but difficult for me to evaluate, makes dad pretty mellow.

Karen, I think the confusion I have with my dad's stage IV bladder cancer is that it really didn't take off into other organs like seemed to be the general expectation..just kind of hung around the lower abdominal cavity. I recall a case long ago written here from a prior contributor with a tumor wrapped around the colon and for my dad the worst open wound from the abscess created by the tumor infecting the colon. I don't want to be graphic about it, only the doctors, nurses and mom, myself and sister have actually seen the wound, fortunately dad can't see it. I've only been able to stomach brief glance at it on request during cleanings. I don't think the doctors have been surprised by the wounds only his ability to last more than 3 or 4 days with it. The other abscess on the inside of the thigh large as well, stopped and gave the appearance of some healing.

As far as letting go... I've been called in there 4 times for an extra trip thinking the end was near, my mom and us tearful holding and stroking his hands and reassuring him that it was ok to let go..and he eventually falls asleep and gets through another week.. he's the picky engineering type so nothing ever finished or perfect for him, there was always some situational conflict with dad to meet some solution that satisfied his demands to fix something correctly. The Christmas holiday is rapidly approaching so I'm sure that is somewhat at play here now, however doubtful it seems to go on.

I do want to reassure readers that I do believe the mission of hospice is satisfied with the utmost in care for my father. He is being kept comfortable and pain free. Being kept pain free was my greatest fear because at the start of this episode things were excruciatingly painful for my father and the larger dosages of the pain meds were not enough to overcome the pain. That too was a tell-tale sign that things were going bad for the chemo in which the cisplatin was stopped due to being ineffective a month before after being on it for nearly three and half years.

..more to say but getting late.. goodnight.. charlie

Thank you Karen, being my first experience I didn't know how much to push the nurses around. It didn't make sense to me but none of us felt we should butt in if we were wrong. now I know different, my neighbor died this summer, she was 56, of breast cancer. This was while Gene was going thru diagnosis and so on. The chemo wasn't working anymore after a fight of 10 years. She had hospice all week long, friends came and went, family stayed at the house, they fed her too. So I know now that is the case, why not in ours is bizarre to me. It may have been because dad hadn't had food for 2 days by the time we got to intensive care, just an iv,now that I think about it the iv should have been nutrition but I am not sure, his wife was in charge until we all showed up, he couldn't swallow..but a few little ice chips certainly wouldn't have hurt him at hospice. and made me feel like I wasn't denying him...I should have slipped them in, all over the dam now...Ginger

Oh Ginger that is too sad...I even fed my father meatloaf one day, and baby food applesauce alot! I cannot beleive they wouldn't let him have water. That is considered suffering to deny them...I guess every facility is different. I am sorry that you experienced that. I thought their mission statement was to give them dignity, compassion, and pain relief......doesn't sound like it in your Dad's case...

Karen

Well Karen, to this day I cry because after putting my dad in the bed at hospice he motioned for water, or ice,,chipped ice, they wouldn't allow me to give it to him, just to swab his mouth., he asked all day and I had to sit there and not give it to him. They said he would choke,,,how funny is that,,so he'll choke to death. The six of us obeyed, which in our upbringing was the standard., I have learned something from the whole experience, do what your gut tells you., and screw everyone else!
Ginger Beane

Gene,
You are correct that they don't do anything to prolong life, or end it early either.
My father was still on oxygen in hospice, was able to get wound care, and food if he wanted it. But no tubes. If he wanted a drink, or something to eat he had to ask for it. I had to sign a "do not resuscitate" form, and no extraordinary medical care is given. They will not under any circumstances let someone suffer. Morphine is a big part of that. But usually whatever the patient wants he gets. But as far as treatment goes...they are in hospice because there are no treatment possibilities left, or they have chosen not to continue. No matter how you look at it Dying is hard on everyone...But with Hospice I found that the compassion in the faces of those Dr. & nurses is awesome...Example: My father wanted to listen to the 3 tenors and the next thing I knew a nurse came in with the CD. My father was at the J. Robert Lauer Hospice (dedicated for Matt Lauer's father) at JFK hospital in Palm Beach County, FL My father had a Private room and even a Bose stereo system. They made those 10 days bearable...I can't even imagine 52 days!! God bless the Father & Family

Karen

Karen and Pat, My thought on hospice was once there, dying was the result. My father went to a private 8 room hospice, he had a private room, once he was there he only received morphine, nothing else. He was awake, he was lucid, and he couldn't speak or swallow because of a mid-brain stroke. He died 6 days later which was in there eyes was to be only 3 days. So was he actively dieing, I believe that was the call of the physician at the intensive care dept. where he was in the hospital. Once you stop actively trying measures to keep them alive, treatment of any kind,,thats the route you take, we were told..No matter which way you look at it its a hard pill to swallow. My best to you and your family, like you my dad had not one minute alone. a loving parent certainly deserve to have loved ones near by, I remember some rooms had people with not one visitor,,then they were gone. keep him comfy cozy, and talk about the days you were young and what a good life he gave you...Ginger Beane