Expert: Mary Gordon - 11/11/2009

Question
My mother appears to be in the last stage of Lewy Bodies disease. She is 87 and wouldn't eat when I tried to feed her.  She is in a nearby lovely nursing home.  When I called today, I was told she had been sleeping all day.  At this home, they insist on getting the patients up at 7am or earlier and taken to the table for meals 3 times a day.  My mother can no longer hold her head up, so it's almost impossible to feed her.  At this point, it seems heartless to put her in her wheelchair 3 times a day.  How much longer do you think this stage will last?  Or, will she suddenly bounce back?

Answer
Tenita, I know this is difficult, but there is no come back from where she is. This illness is a one way slide down a sad, rocky hill - and I know in your heart, you know that.  She is moving away from you. You should be discussing what comes next with her care team at the nursing home, and what her wishes were and your preferences are.

Have you discussed palliative care with the home. Here is a link to information about that approach.
http://www.getpalliativecare.org/whatis
Does the nursing home offer end of life hospice programs? If they do not, are there other resources available to her at this point (i.e. would she qualify for other hospice type programs or facilities. Here is a link to hospice resources by state.
http://www.hospicedirectory.org/cm/about

The coming months will bring tough choices so it's best to think things through and prepare yourself. She is very likely to be in her final time - my guess would be less than 6 months. You want to be able to look back at what happened during this stage and be at peace with it. You have to feel that you did the right things. There are a lot of moral and religious issues involved for many families - and only you know your mother, what her wishes were, and also what she has left in terms of awareness and quality of life. If your mother's heart stops, do you want her resuscitated? If she develops an infection, do you want her treated other than comfort measures (i.e. pain killers) ? Would you want her taken to emergency, or for a stay in hospital? If she is no longer eating enough to sustain life, are you ready to let nature take its course? Are you ready to keep her comfortable, and love her and let her go? Did she have a living will expressing her wishes?

What is the care philosophy at her current facility, and is it in tune with what is kindest for her, and what you think she would have wanted ? Personally, I think a one size fits all approach of insisting on getting her up and taking her to a dining hall may be one that is no longer appropriate for the stage she is at, but that is something to discuss with the team.

I know you love your mother and want the best for her.  Call a meeting with the staff and plan out some next steps. I think it will make you feel more comfortable to talk it through and make sure everyone is on the same page with respect to the goals for her care.

We elected a palliative, hospice type option within the nursing home for my mother in law. They were wonderfully kind and supportive to the family, as well as my mother in law. She was kept very comfortable and free of discomfort. We truly did regard this stage as the slow but inevitable going out of the tide. My husband (her only child) feels very strongly that the choice was the right one for her and for him - that he did the right thing. He regrets that she had to go through any of it, that she got a progressive dementia, that some other illness did not mercifully carry her off prior to the last stages - but he does not regret letting her go.

Hope this helps. Thinking of you.

Mary G.