My father was losing weight, and sometimes sleeping for 23 hours a day. A visiting doctor noticed the weight loss, and told us to take him in for a CT scan at a hospital. (First she suggested a home x-ray, which we took, and which showed nothing amiss). Anyway, the doctor told us that my father had cancer that had spread to the bones and the spine. The CAT scan also showed that he had an impacted colon. We took him to the hospital, much against his will to do something about the colon, and didn't tell him about the cancer.
A doctor looked at his tongue in the ER and said he was dehydrated. So he was hooked up to saline, and after a day or two lying in the hospital, a nurse noticed he kept trying to urinate, but would fail. She ordered an ultrasound scan, which showed that blood clots were blocking his bladder. So my father told my brother at this point "Your mother was right" and a catheter was inserted that solved the problem.
One reason my father had been dehydrated was that he wasn't drinking in the 23 hours a day he was sleeping in bed. My brother tried to spoon feed him while he was in bed, but obviously we had not thought of drink.
At times my father in the hospital seemed disoriented, not even recognizing us, at other times he seemed all there. At one point he asked me to lift him up to stand, but I looked at the saline drip on one side, and the catheter on the other, and shook my head. He did not take this reply well, and I asked a nurse if we could walk him down the hall. She said no, because it would be dangerous. In retrospect I could have just asked her to stand him up and have him walk, with us holding him under his arms, to the window of his room, but that only occurred to me later.
The next day he was wheeled into our house, where we had a medical bed waiting, and we also had hired a health aide from a non-licensed outfit. That outfit was not licensed for hospice care by New York State, but it was OK for helping old people in general.
Unfortunately the aide wasn't educated in health, though she had relatives back in Georgia who were. She thought that my father did not need protein, since he was dying, and she told me so. She also said that you could tell he was having enough food, as long as he had to go periodically to the bathroom. This assertion I was told later by a hospice nurse is complete nonsense.
My father didn't want to eat. He wouldn't take 'ensure', he wouldn't take scrambled eggs, and so forth. We did get him to take fat-free yogurt three times a day, and baby food along with it. But that added up to 400 to 600 calories a day, which the hospice nurse told me was not enough for anyone.
My father was hard of hearing, and he was very still, some of the time, when he was lying on the bed so I didn't realize he could hear me. I told the aide, who was standing near him, that we should try to feed him more, even though he could drop dead at any minute. This was the awful way that my Dad finally had the news broken to him that he was terminally ill. He told me "I don't even know what I have!" and I should have told him at that point about the cancer.
The cancer was odd too - a few years ago he had been found with a cancer in his lung that was treatable, and he was irradiated by a team at Phelps Hospital, who assured us the cancer was gone. But two years later (approximately, my guess), he had cancer everywhere.
One time my father pointed to the Catheter, and said "this is stupid", and he sometimes wanted us to take him to the bathroom, which our aide was unwilling to do. We would instead take him outside when he wanted to go to the bathroom, and he asked me from the wheelchair "You disobey me?" (because instead of the bathroom, we were taking him to the driveway) Here I don't know whether the aide was correct, and whether the bathroom was a dangerous idea for a person who had lost so much weight, and was so weak.
At one point our aide tried to feed my Dad w
Your dad was in the dying process .Even though the caregiver was not as capable,,it’s ok. Your family did it’s best to get care. Don’t beat yourself up.
For most of us, we don't deal with too many dying folks in our lifetimes, so we can't be expected to have the knowledge that folks who deal with it often (like Hospice professionals) have.
I benefitted from my mother being in a Nursing Home when she was dying with hospice services in place. We were surrounded by the loving aides and nurses who had care for and knew my mom for nearly 5 years. I can't imagine trying to manage this sort of scenario at home without access to professional medical advice.
At one point our aide tried to feed my Dad while he was only slightly elevated, and liquid came out various places. My brother said that my father was crying. I requested that the aide feed him while he was seated vertically. She didn’t think that would help and I had to email the doctor to get her to reinforce my request of the aide to feed him while he was seated vertically.
We did have a protein supplement that came in the mail after a many-day delay, but our aide refused to give it to him mixed with food (she had a theory that this made him go to the bathroom more often, which she didn't want to cope with). So he only got a tablespoon of protein supplement when he drank, and often not then.
Another brother persuaded me to give my father spoons of heavy cream, which definitely had calories, but perhaps coincidentally, his Oxygen dropped drastically the next night, and his right arm became cold. He died a few days after, holding my mother's hand.
My father also told me at one point "Don't be so cruel". I hadn't meant to be cruel of course.
He told my mother "it was good while it lasted", and perhaps assuming we didn't want to care for him he asked "why does it take so long?"
He held my brother's hand, and my brother said "Maybe this is just an autonomic reflex, and he doesn't know we are here". I couldn't believe what I was hearing from my brother, and I said loudly that we had to assume that my father knew we were here. He obviously did, because when I said something about moral support, he reached out and held my hand and my brother's hand.
At one point I said something about clinical trials, and not being able to get him to a hospital. My father managed to sit up, and said "Take me to the car", I asked him "You want to go to Irvington?" and he looked at me, and said resignedly "I have to die."
I think there are several lessons for caregivers with cancer here. First of all, our health aide in some ways was good, she sacrificed much sleep to take care of my father, and if she had to change him eight times a day, she would do that. But her knowledge of health care was poor. She seemed to think that my father was in a battle between this world and the next, which is a religious belief, but not helpful in day to day care. She also was on her cell phone with her family and other contacts in Georgia and Russia, which I thought was OK normally, but one time my father said "I am hungry", and I heard him from 18 feet away, but she did not, because she was wrapped up in her cell phone. It would have been better if she had read a book instead.
I think the rest of us should have understood that while my father might not speak much, and when he spoke only in short sentences, he understood what was going on around him.
He did not seem in pain, and he would let us know when he was, like when we lifted him the wrong way or whatever. That was another lesson, the hospice nurses just wanted to give him lots of narcotics. Oddly enough (for bone cancer), he didn't need the pain killers. There are other possible lessons too - maybe when he had the lung cancer, we should have listened to a surgeon who told us that the only way to really get rid of it was surgery.
Its a terrible story.