Editorial

I have a close relative in a memory care facility.  She lives in a constant state of confusion, and depression caused in large part, I think, to the fact that she knows how confused she is.  She wants her life back, and realizes on some level that that is not to be.  So a safe, caring environment is the best we can give her, and I believe the facility she lives in fits the bill.

I didn't know how much it fits the bill until she was temporarily relocated into a local nursing facility for rehabilitation after a hospital stay following a fall.  I had read a lot about elder abuse and the various perils that elders who have become unable to fend for themselves are subjected to.  But I thought that would never happen to her.  Until it did.

I will say that many of the people who worked in this facility did their best under the circumstances, which were abysmal.  The facility itself was a bit depressing, but the really bad part was that it was criminally understaffed.  When she had to go to the bathroom, which she could not do on her own, she was lucky if the wait was only 45 minutes as the aids scrambled to help other residents.  While there she was hospitalized again.  She was virtually non-responsive, and mentally a lot less functional even than she normally was, spending her days curled up in a restraining bed/chair thing, living in fear of the lift they used to put her in and out of bed, and not able to feed herself.

It turned out she was dehydrated.  A couple of bags of saline later she was returned, and the ability to function was noticeably improved.  We asked the staff to give her water once an hour, and they were instructed by their superior to do so.  This did not happen, though.  We spent an inordinate amount of time with her, because the facility's staff did not.  We saw that the most basic care (feeding, bathroom) was not sufficient there unless we stayed to make it happen.

How hard is it to give a person water in a cup with a lid and a straw?  I did it myself every time I visited.  It's not hard or even time consuming.

When she finally returned from the nursing facility to her memory care unit she could not walk on her own, and had lost much of her limited capacity.  The memory care unit is assisted living, and theoretically you get more care in a nursing home than in assisted living.

But the memory care staff took special interest in her, talking to her, seeing to it that she was well cared for, getting her onto a walker, making sure she ate. They were determined, as one employee told me, to put the residents' experience first, making them comfortable in what, after all, is their home.  She could eventually walk again, and they worked miracles to the point where she is just about back to where she was before her fall led to this disaster.  I would like to say her condition in the two places was like night and day, but that doesn't begin to describe the magnitude of the contrast.

After she left the nursing facility I was convinced she would never get back to the admittedly miserable, but seriously better state she had been in before her fall.  I couldn't imagine she could possibly recover.  Yet, with a devoted, caring staff and decent surroundings she actually has.  It's a real miracle.

Since our experience people have come out of the woodwork with horror stories about that particular nursing facility (and others).  When she was placed there we didn't feel we had much choice because after housing her for a week the hospital was desperate to place her anywhere at all for rehab and get their bed back.  If we knew then what we know now we would have demanded that they wait until an actual good place had an open bed.

Getting old is not a lot of fun for anyone, but when you suffer from dementia you lose yourself, and your loved ones lose you.  It is heartbreaking for family members as someone you love berates you for just about everything, complains about her life and regularly threatens suicide, even though there is no practical way she could kill herself (she admits sometimes that she doesn't know how and other times that she wouldn't have the courage).

I believe that if she had stayed in the nursing facility it would have killed her.  She would have died of starvation and dehydration, most likely, and it probably would have taken a minimum of 45 minutes before anybody noticed.

New York State Comptroller Thomas P. DiNapoli sent out a press release Wednesday saying that the state Department of Health (DOH) should be doing more to insure that nursing homes are properly inspecting, maintaining and testing their medical equipment.  But it is clear to me that they should be doing more to inspect the quality of care offered to helpless residents, and that the minimum bar should be raised considerably.

I have been told by health care professionals that part of the problem is the owners can't make a profit if they adequately staff their facilities.  And another part is that even if they want to hire more people, it is hard to find them.  Working with dementia patients full time for minimum wage has got to be dispiriting.

But just because you are old and age has destroyed your ability to function and cope doesn't mean you don't deserve the same level of respect and care that younger people have.  What we saw was a parking lot for the living bodies of old people, not, in any sense of the words, a care facility.

A good friend often told me, before he passed away, 'Dan -- don't get old!'  After what I have seen I am desperately trying not to get old.  I will welcome the advice of anyone who knows how to do that.

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