This week, we are back with Mary and George, the hypothetical couple who helps me talk about caregiver issues a little more personally. George has had LBD for a few years now, and Mary is his spouse and caregiver. They just had a week of family visits and excursions. George rose to the challenge and not only was able to enjoy his grown children’s visit in his home, he played with the grandkids and even went out to dinner with the whole group a couple of times, all without any major incidents. But it’s been several days since the kids left and George is sleeping a lot. When he’s up, he can’t do much more than sit in his recliner, barely able to talk. He’s not eating and he can’t seem to stop drooling. Mary is worried. One part of her says it is time to contact hospice. Another part resists; she really can’t accept that their LBD journey is that far along.
Many of you are nodding already. You know what happened. George had a wonderful week of Showtime with his family, where he was “almost normal.” Now he is paying the cost, exhaustion with a lot of sleeping and less than usual abilities even when awake. This is normal. Showtime is really hard work! George will likely be functioning better in a few days although a whole week of Showtime is pretty stressful and he may not return all the way.
That said, this might be a great time for Mary have him assessed for hospice. This doesn’t mean that she expects him to die in the next week, or even month. It just means that his condition may presently meet the requirements for hospice and they have SO MUCH to offer caregivers that it is worth it to apply. It is very likely that George will eventually improve so much that he will no longer qualify for their service and be removed. But in the meantime, he and Mary will get the benefit of those services AND George will be all signed up. This will make it easier to reapply when his condition degenerates again.
Mary already knows which hospice service to call. Because LBD is a terminal illness, Mary knew that hospice would likely be needed. Early in the journey, while the decision was an intellectual one rather than an emotional one, she was able to make a thoughtful choice, with much less stress. This is important. If you wait, you will be faced with choosing from a multitude of hospice services at a time when you are too stressed to make good choices. Mary called several groups and asked questions about which of George’s drugs they considered “palliative” and therefore would allow him to continue taking and which they would not. She also asked how familiar the group was about LBD fluctuations, so that George would be less likely to get dropped from service because he was exhibiting Showtime for the evaluator.
When Mary called Karen, her support group facilitator, and told her about George’s lassitude, Karen suggested that Mary consider hospice 'caregiver help' rather than 'heralding the end.' “It’s a lot easier to accept that way,” Karen explained. People can and do live on hospice for many months or even years. My sister was on it for nine months. This was my introduction to hospice and it was a blessing for both of us. She stayed on it the whole nine months, but people also go on and off it as their condition changes. A person gets such good care with hospice that they will often improve enough that they don’t qualify any more. Then when the disease progresses and they qualify again, they can go back on the service.
Mary did call hospice and George was accepted. He stayed on service for a month before he improved so much that he was dropped. During this time, Mary learned what to expect and how much she appreciated the extra help. As George declines, she won’t be hesitant to apply again.
Learn more about hospice in the 6/15/13 blog, and in our books.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
This is a genius post (as are most). It is difficult to make that decision, so using this as a "cooling off" period and trial, with the expectation it will be temporary only is sage. You folks are doing great, great things!
ReplyDeleteMy Mom is in hospice, and it is NOT a good experience. They give very little support to caregivers. They pay for the medications, but that is about it. Mom has been on hospice for 3 years. She is steadily declining. She has had several different nurses of which NO ONE knew a thing about Lewy Bodies. I have a nurse now, who is PRN and she only has Mom. Support none. There is no hospice in my area that works with Lewy Bodies. They say they do, but when you interview them, they are clueless. Not trying to down your information, but NOT all hospices offer caregivers support.
ReplyDeleteSo sorry, Susan. What you say about hospice people knowing about Lewy body disorders is too often true. Is this the only hospice service in your area? We have many in our area and so caregivers can usually find one that actually does know something about LB. I hope things work out better for you.
ReplyDeleteThank you to the Whitworths of Arizona. To answer your question. No there are no hospices that will service my area that has the needed knowledge to care for love one's with Lewy Bodies or understand the issues. They categorize all dementia's into one box and that box is mostly Alzheimer's; and they treat as if my mom has Alzheimer's -- which is contraindicated. I am a nurse and I do the research, I give the nurses and administers the literature, and it is obvious that they do not read it. I have taken care of my Mother for 6 years with this diagnosis. I walk this path alone. Thanks for your kind feedback.
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