End stage - Hospice Concerns - Infections

Hi Charlie,

Thank you for the honest account you have shared. The responses are also very educational, thank you Ginger and Karen. It's a tough subject, not often discussed-metastatic cancer. In fact, our section on WebCafe was the only resource on the subject for so long, it was published in a "cancer source" educational book. They told me they could find no other information on the subject on the whole internet.

I'm familiar with cancer breaking through the skin, have seen it a few times in our family, with different types of cancer; colon, ovarian, melanoma, and my sister had skin mets from breast cancer but these were small tumors, not open. Any type of skin mets or ulceration is a sign of advanced disease that most people do not live enough to experience.

Charles, I sympathize with you for having to go through this phase with your father, but I am also very impressed with the outstanding job your family is doing of helping your father's passing to be an experience surrounded by love and with dignity.
wendy

It's become a bit of a sad situation for dad can see in his eyes and speech.. he asked me how long he was in there..54 days, I replied.. nothing back.

After being in there nearly 8 weeks you get to be part of the staff and we now know all the nurses names, where they are from, how long they have worked.. etc.. After this much time, I've helped with the cleaning routine, moving him in the bed, wedging a dozen pillows around him - learning the tricks of how you change a bed with someone in it! It sometimes for me helps to participate and not just leave the room for the nurses to do their work. I admit that I don't always have the stomach to view the wounds so I take a break down the hall and let them do their job.

The sad part for my mom is her sister flew home today for the holidays with her family, she had been with us all this time and I had offered to fly her home much earlier but she wanted to stay and help out. We couldn't have done this without all her help for us and her sister - my mom.

I must convey that for me and the rest of the immediate family there have been waves of grief over the years. This is not the same kind of grieving experience with a sudden death in the family. I've only known of my grandparents with some heart problem going to the hospital and a few days later it's all over. This grieving experience is entirely different. We knew when stage IV was declared by the oncologist at first meeting that this would be a tough journey and would tragically end in a matter of months (very careful in speech not use years - is this a marketing ploy for chemo? - does 24 months sound longer than 2 years?). That was probably the toughest emotional day as it was only weeks before that his bladder was removed, and he complained of more pain.. it was too late the cancer got loose. But he even beat those early estimates and was able to tolerate the chemo for almost three and half years. And there were a lot of family adventures in that time to make the most of it.

It's a tough situation in that everyone has had plenty of time to say goodbye and that has been done and of course he's not able to respond much in converstation now - during brief periods of awake, query him if he wants the bed moved.. head up, head down, feet up?? feet down?? water? ice chips? anything else I can get you? We will be there for him and the staff is taking great effort to keep him pain free. Despite some sedatation however, the sadness for him is a bit more challenging to overcome. There's three grandkids to bring in on brief occasion to help recover a small measure of happiness, better than any drug.

Charles - My thoughts are with you and your father. Bladder cancer is awful and all I can speak to is my sister's experience. Hospice is wonderful and it is good that someone from your family can be there at all times. My sister was lucky as she was able to have hospice care at home, but didnt have the open wounds like your father. My sister's was lymph based. She passed very quickly -- basically the day before her voice was strong, and then the next day she passed. While I know we all hope for remission, it doesnt always happen, and I know I only prayed that she would not suffer. I hope that your father is not suffering. I also hope that you have either had the chance or get the chance to say goodbye and that your father has a hospice angel there to help him.
Remember to take care of yourself at the same time.

Yes Charlie,
You are right about who can say he is actively dieing, those who have that power can send you one place or another depending. By the time we all arrived in Tucson from Cleveland it was 24 hours since the mid brain stroke, we didn't know what the plan was but we had our own plan, we ran into a road block, my dads wife . I think all the plans were done and we were just about to get the picture,,hospice. Once the guerny came to transport it was a done deal, but I privately asked dad, sure you don't want a feeding tube for a few days, just to see if the swallowing comes back, he answered , no,,how strong of him, but sad for me.
The thing I don't get is who said when he gets to hospice he gets morphine only, every 6 hours,,he went from awake to vegtable like in 2 days. The rest was all body function til the end. One night 3 am I was sitting next to him with my head on his lap and a nurse came in to turn him over, I said, he said he doesn't want to turn over,( of course he was in a vegtable state)...she said but its policy, I said its 3 am and he said NO....off she went..its amazing how you can relate to your father even at this time without it being scary or frightening...I am sure all hospice
situations are different. Ginger Beane

Agree, private room is most appropriate for those dying to be close to family and share sometimes the most intimate experiences of life. Some of the 100+bed NCFs only had a couple private rooms available. As a backup plan, I even negotiated to pay for the other bed in a two bed unit that was currently unoccupied. Given how long this has gone on that would have been very expensive. Hopefully more dedicated in-patient hospice facilities will be built to meet the increasing demand.

With respect to another question about "active dying" - this is a term used by the social workers. I've had some strained discussions with the social workers, I did not necessarily find them to be advocates for our needs but rather spokespersons for hospital or facility policy and administration. I couldn't believe the first run-in with the social worker at the hospital basically handing me a web printout of facilities approved by Medicare (my dad is on private insurance). The person hadn't even reviewed my dad's chart or had any knowledge to extent and high demand for his physical care. I personally with my RN cousin went on reconnaissance missions to check out the NCFs - see for myself how bad that was going to be and talk with staff about their care plan for my father. The "active dying" I understood would become a judgement by doctor case review as to whether my father could stay in the dedicated hospice facility or need to be moved (yet again) to an NCF. It seemed a bit ridiculous to even suggest it or stress me about it, the doctor and staff case review did determine he could stay at the facility for the duration. I think there is a bit of confusion about hospice care for last 6 months of life and physically where that care would be provided with regard to facility patient policy and "active dying". It was maybe the social worker being more clueless, it didn't turn out to be a concern for us, but it was upsetting and I wish hadn't been brought up - the reason for being upset was that I had lost all that time to put dad on waiting list to get into facilities with private rooms - for some reason in my geographic area there is far more demand for private rooms than readily available. I'm only advising some caution to discussions with social workers and double check everything you're being told.

Charlie,

Now that you are at the end of the road of hospice I wish your dad peace. I was shocked as well that there were 2 people in some rooms. I MEAN NO PRIVATE ROOM EVEN WHEN DIEING!!!! This hospice facility was not long term, you only were admitted if life span was very short, week to 10 days..from the better side I must say it was a nice room with french doors to a patio, it was Tucson Arizona so we opened them so he could smell the fresh air, although after day 2 he was in more of a vegitative state, but I still believed he could hear me and enjoy any fragrances from the jasmine tree outside his door. Like yourself we talked about our childhood, we even sang songs and made jokes. I thanked him for the first swing set he bought my children, and so on and so on. I am sure dad was getting it. But I must say he to wouldn't go, so we all said its okay to go, we are good dad. The 6th day we girls ran back to the hotel to shower and stuff, we got the call to hurry back, he died before I could get there..I think since I was the closest to him out of 6 maybe didn't want me to be there for the end. And so it happened that way, but I would never had asked him to stick around in time for me to get back, I will give it up so he could go and not waste one more minute in the process of dieing.
I wish you strength in your mission, and peace in your heart!
Ginger