Hospice question

Smilescountry

Hello! Two years ago, my dad was functioning quite well. Today, I talked to hospice because he is no longer doing well. Hospice was the doctor’s suggestion. He was diagnosed with Alzheimer’s about a year and a half ago and moved to assisted living with my mother a few months later. I liked my talk this morning with the hospice representative. However, this evening the nurse came to visit with my dad. She wasn’t very personable and pretty much ignored Dad while asking me to say in front of him whether or not I expected him to die in six months. He immediately became frustrated and said no doctor had told him that. I finally got the nurse to come with me to a different room where we could talk, and the information that she gave me was opposite of what I heard this morning. I was told that Dad would have to give up his family doctor to go on hospice, even though the book and the person this morning said otherwise. I was also told several other things that didn’t seem right. I have my doubts that I will be able to talk to this doctor myself, which worries me about the care that my dad will receive. Is it true that insurance will not pay for the family doctor?

concerned_sister

Would you be interested in contacting a different provider?

M1

Hi smiles. I agree that you might call a different agency if you didn't like this one's representative. There was another thread recently about keeping other docs while on hospice. The general idea is that the hospice folks handle all issues that his other doc has previously handled. With dementia, the six month rule is not so hard and fast. I absolutely agree that she should not have said that in front of him, and I might complain to a supervisor about that. She doesn't sound very experienced in dealing with dementia patients. Don't give up- they can be a tremendous help.

Jeanne C.

I'm sorry you had a poor experience with the intake nurse. Our experience was very different with very gentle care taken to not upset my husband. I was also told my husband could keep his PCP, but we're just using the hospice doc. What I will say is that the doctor has only been here once. However, the nurse comes every week, consults with the doctor, and, frankly, provides amazing and attentive care (much more so than his PCP).

HHere's a link to the discussion M1 mentioned:

https://alzconnected.org/discussion/69263/update-on-husband-and-hospice

I also agree with M1 that you shouldn't give up on hospice. They have been tremendous for us.

Smilescountry

Thanks, everyone. Actually, this is my fourth experience with hospice, and I have had every experience from the absolute best and most caring to impersonal caregivers and providers who never talked to us. After talking to our PCP, who is very good, and some others at the hospice group, we are getting the problem worked out. We will be staying with this hospice group because we and others are having problems with another prominent one. The nurse from last night will not be working with us, and she has been reprimanded. It is still a little scary because we are balancing treating the newer symptoms against the increased risks that the medications pose to Dad's broken and non-healing neck from last summer. Increased risk of falling is a huge factor. Dealing with a new physician whom we will never see (which will happen now) is so difficult. I have to meet with the intake nurse, prepared to discuss with her any medication that I can think of that might not be appropriate for Dad, and there are many. The nurse's supervisor called me and told me everything that I need to be prepared to share, and advised me to list some of the medications as "allergic to." It isn't as if I haven't already been doing that (I have organized files on everything that I take with me everywhere.), but I have found that so much information gets lost when records get shuffled from one place to another.