Hi Angie!
Hospice has been an exercise in coordination and patience. Also, when we started Hospice, I think I did not know what to expect and may have had unreasonable expectations as to what services they provided. They came by every day when my husband needed his foot soaked every day. It was nice that the nurse soaked his foot and bandaged it up, saved me from having to do it when I got home from work.
I expctd more help when my husband was having some serious HE episodes, hoping that they could provide more nursing to help keep him from falling or doing something stupid while I was at work, but was told "they don't do that". And offered me information on private nursing services. Well, I can't afford private nursing, so I just had to leave him at home, and dealt with it the best we could. Thank goodness, his HE episodes did not last that long.
They did offer us a 5 day respite where my husband could go to a nursing facility, and I could get a break. However, my husband refused, so I never did get a break.
Three months after the start of Hospice, the hospice team did a routine case evaluation and determined that my husband was not in an "acute" stage, but in a "chronic" stage of his disease. They wanted to demote him from Hospice care to Palliative care. I was shocked. We had been dealing with some regular HE problems previously to this, he was falling a lot, was very mentally spacey, unable to test his blood or properly administer his insulin accurately, he was very shakey and unstable. They said they would move him to Palliative care, which also provided comfort care, but is designed to be more ongoing. I asked if the medicines were still covered, the nurse didn't know. I asked how often the nurse/nurse aid would come, and she asked me what I thought our needs were. I told her that I Wanted someone to come in once a day when I was at work (5 days a week), at a regular time, to make sure he was ok, and taking his medicines at the right time. The nurse said "well, we don't do that". This was a few weeks before Christmas. I was so upset, so frustrated, I just wanted to cry. I thought "well, what in the hell do you do?" I controlled myself, and didn't say it however.
Later that week, we found out that our insurance only covered the Hospice Care and not the Pallaitive Care. aAAAGGGGGHHHHH. So they had to release him.
We went to our general practitioner to get set up with new script
s for hubby's meds. We talked about
the whole situation and even the doctor was confused. He said "I thought hospice care WAS palliative care??" I told him I didn't know what markers the hospice uses to determine the difference, but my husband's cognitive abilities were decreasing, he was falling more, sleeping more and losing weight. What did they look for? I said I thought he should be in hospice and the doctor said he would tend to agree more with me than the hospice.
Our doctor has set us up with another hospice company, and I like them much much better. Maybe it's because I have "no" expectations, but so far they have really worked hard to help meet our needs. We have a nurse twice a week, a nurses aide twice a week, a Chaplin once a week, and now a massage therapist will be coming it every one to two weeks. Hubby gets bad leg cramps. Fortunately, he is having one of his good periods. He hasn't fallen in a couple of weeks, his thinking and speech are much clearer. (Well, besides the lock thingy). The nurse calls me and let's me know how many pain meds he has taken, if he refuses to take his lactulose, etc.
Things are going very smoothly now. Hopefully we can maintain for as long as possible. With this disease one is always waiting for the other shoe to drop, because, eventually, it always will.
Angie, what are your hospice experiences? How is your hubby doing?
Pam
