No Room At the Inn.

There are a few questions I hear over and over and over.  One of them is, "Is this behavior - swearing, hallucinations, paranoia, anger - normal"  Another is, "How and where do I find a good doctor for my loved one suffering from LBD?  Nobody seems to know what it is!"  One of the ones I hear the most and get the most angry about is, "How do I find a facility for my loved one? No one wants to take him/her!"

When I hear the phrases, 'Memory Wing', or 'Dementia Wing', or 'Alzheimer's Care', or even, god help me, 'Reminiscences', my assumption is that these places will actually accept people with dementia, or Alzheimer's, or whatever.  You know, those people that can no longer 'reminisce'. That is what their name implies, is it not?  And yet, I constantly hear about families that have tried to place their care-taker in a designated dementia facility only to be told that they don't accept Lewy Body dementia, presumably because of the added behavioral issues!  I guess facilities only want the stereotypical little old demented ladies who crouch in their wheel chairs, don't move, and never give any trouble.

I faced this problem with Dad four years ago.  After his little 'incident' at the facility where he lived (in the dementia wing, I might add, where one would presumably expect dementia-like behaviors) the staff watched him so intently, which made his behavior worse, and made their reluctance to keep him so obvious, that I had no choice but to look for another home for him.  Not to mention that a smaller, less stimulating, quieter environment is proven to be better for LBD sufferers.  I worried that we wouldn't be able to find one that would accept him once they heard about his history.  Fortunately, the dementia gods were smiling on us and we found a lovely owner of an Adult Family Home who already had a lot of experience with men and LBD, but many other families are not so lucky.

It is a common refrain from the caregivers I meet that one facility after another has turned them down and it makes me wish I had more help for them.  I tell people to look for Adult Family Homes, or Board and Care Homes, or whatever they are called in their area - even smaller facilities, if necessary - because they are privately owned; have a better staff-to-caretaker ratio; and are smaller, cozier, and less over-stimulating.  In addition, they are more likely to be willing to take people with difficult needs and behaviors.  Some of them aren't able to take Medicaid or other government payments, which makes it difficult for lower-income families, however, they are still my preferred option if the family can manage it. 

I know that many facilities are often doing the best they can with not much money, not enough caregivers, and too many care-takers.  It is not easy taking care of agitation and aggressive behavior from a few patients when, at the same time, one is trying to feed, clothe, bathe, and care for many others.  But I can't help feeling angry that these places are advertising for dementia patients, without being willing to actually take on dementia patients.  What other option will a low-income family have other than care in the home, which may or may not be the best solution?  This problem is only going to get worse, as more people age and are struck by these terrible diseases - we need a better solution.