Last week my DH was accepted by hospice. I thought this would be just great. However, it has thrown me for a loop. I find I'm crying and anxious and just can't handle it. I feel as if I've made a terrible mistake seeking their help. I feel smoothered. They said they will step back and see how things go. I'm not sure if I'm just in denial about this whole thing or what. Ken can't walk or do any of his care, he feed himself but the past few days I see that is getting difficult too. He has LBD, liver disease and multiple myeloma.
Has anyone else had trouble accepting or adjusting to hospice? I read about the good aspects of the service and wonder why I feel so paniced.
We had hospice twice...and both times, we felt that they smothered us with constant attention. It was like having flies buzz around, and there was too much activity. It seemed that when one left, another would show up. We did request that they back off a bit, and let us determine how often they came...Towards the end, it became more tolerable, and their advice was very helpful. But at times, it became a nuisance, and made the situation harder to handle. We were fortunate that they were understanding, and placed themselves "On call" if we really needed them.
Nancy, the first week or so of hospice being on board seems chaotic. There are nurses, aides, social worker, chaplains all visiting or calling. Then the delivery people start arriving with meds and durable equipment...it is a bit much. It will calm down and a more regular schedule will begin and by then you will have gotten used to the whole idea of hospice. Their initial visits are a lot of observation to see how much help and or guidance you might need.
The word hospice brings all the "end of life" issues to the forefront...no wonder you are overwhelmed.
Remember to take advantage of what hospice offers...they are there for you, too.
As mentioned above, the first month of hospice can be a bit much, but it does mellow out after that. I can't imagine going back to all the personal care for G by myself. We are on the 2nd recertification now, and I surely hope to stay on it. Caring for an adult the size of G is daunting by ones self...our hospice gals ae just terrific!
I did not feel "smothered" by Hospice. So, it may be that all of them are different - of course they are. We never seen too much of them here. A Nurse or CNA came by twice a week and were on call. Bath aides as often as we wanted through the week or not at all if we did not want. I enjoyed visiting with them as they came. Chaplain once a month and Social Worker once a month. With Mom it was 6 months but with Paul it was only 2 weeks. I think having them on board relieves you of some of the responsibility and stress of making decisions. Perhaps you are not ready to give up that responsibility. Hang in there and I am sure they will back off if you ask them..
Nancyt, I do think the emotional implications of bringing hospice on board can be very difficult initially. After fighting for what seems like forever to keep our DHs going, with hospice we have to fall back, regroup, adjust our thinking more to comfort and quality of life, acknowledge that time may be short. It can be a lot to deal with.