Monday, October 4, 2010

The Perils of Nursing Homes

My dad has been in a Boston hospital for over a week.  While some days are better than others, it is becoming apparent that he may never fully recover.  He has lost a tremendous amount of weight over the last couple of years, and my brother now estimates that he weighs roughly the same as my nine-year-old son.  Dad's legs are apparently like sticks; the rest of his frame is similarly skeletal.

He went to the hospital because my mom thought he had a stroke.  While that condition has been ruled out, the cause of his increasing frailty and confusion has not been confirmed.  Most likely it is cancer.  In his living will, he has ruled out aggressive tests and treatment, so we may never really know what's wrong.  And there doesn't seem to be a sense that he'll get better - just that it will be more of the same until the end.

The question now, is where he should go.  The hospital needs to release him: they have done what they can, have come up with a likely diagnosis that my mom won't let them confirm never-mind treat, and so there is no need to continue to keep him in a hospital bed.  My dad wants to go home.  I'm not sure he has said this -- I am not sure he even can -- but that has always been his wish before.  He hates hospitals and institutional settings.

Some history: long ago, his mom lived with us after she suffered from a stroke.  She was mostly confined to her bed - couldn't cook or really care much for herself - and one of us kids would take her meals in on a tray every day.  In the summer, she went to live with her daughter, who subsequently put my grandmother in a nursing home. My grandmother died within weeks - she starved herself she was so unhappy to be away from home - and my father never forgave his sister.

Through the years my father has made his disgust for nursing homes clear.  So I was surprised and appalled when I heard that my mom had agreed to send him to one when he's released from the hospital. I think my siblings had similar reactions.  J. told me that mom made it clear that it was her "right and responsibility" to make the decision.  C. railed against my mom for putting her own needs (the awkwardness and discomfort of having 24-hour nursing care in her home) ahead of my dad's desires.

And then, overnight, a solution was born.  C. suggested that dad be released to hospice care in her home.  She has a huge finished basement that would be perfect - it is L-shaped so that my dad can rest with the lights dimmed on one side, while a caregiver sits near a reading lamp on the other and both have some privacy.  It has a large, new bathroom.  The laundry facilities are nearby.  There are floor-to-ceiling windows with a view of the backyard.  There is even a refrigerator (and there could be a toaster oven or microwave).  And since it is a floor away from the rest of the house, C. and her husband would be free to go about their normal daily activities without being in the way of my father's care.

My mother seems to have agreed to consider this as an option (DH warned me that her need to control may take over and that I shouldn't be surprised if obstacles suddenly appear), although she told me that she wasn't sure that this arrangement would be approved by the caseworker who is evaluating my dad's placement.  We'll see.  Right now I am optimistic.

Money plays a role.  There is no denying this (although my mother does try).  Around the clock nursing care will cost $23/hour - twice that if two people are needed.  That's roughly $4K per week (more if extra staff is needed).  So this is hardly sustainable for the long term.  My folks have considerably savings - they made a killing when they sold their house 4 years ago - and I think it is great to have the money go toward my dad's care.  My mom seems more in favor of not spending this money, so that there will be remaining funds in my dad's trust to split among his heirs.  But nursing homes are not a free ride either: the full cost is paid for 20 days, and then some portion is paid for another 80 days, but then he'll have to use his own funds until they are kaput and the state kicks in.

For me, the bigger concern is the lack of dignity in a nursing home.  Both C. and I worked in homes as teenagers, and we know first hand that bed-ridden patients don't always get great care.  He will continue to be restrained to prevent future falls, since in a nursing home, there will be long stretches of time when he is alone.  With one-on-one care restraints will be less necessary.  In a nursing home, he can sit in a wet or soiled hours for hours before someone has time to attend to him - this won't happen with one on one care.  Most distressingly for me, he is likely to continue to be sedated in a nursing home any time he is restless simply because that makes it easier for the staff.

To digress a bit: the NY Times had an article on the front page of yesterday's business section that dealt with the proliferation of anti-psychotic drugs.  It stated that fully 1/4 of nursing home patients have used them, despite "recent government warnings [that] say the drugs may be fatal to some older patients."  More specifically it described how Eli Lilly salespeople "promoted a '5 at 5' drug regimen in nursing homes - 5 milligrams of Zyprexa at 5 p.m. to settle down agitated older patients for the night."  I saw this first hand when one of my nursing home patients came at me with a fork - the next day and for the rest of the summer, he was completely knocked out - I don't think I ever saw him conscious again.

Nursing homes are notoriously badly staffed.  I don't know that I saw a doctor the whole summer -- and I worked the 7-3 shift when doctor visits would presumably have been most likely.  There was one nurse on the floor - and she was so busy with paperwork that she rarely visited with the patients but relied on aide reports to fill out her charts.  She did do rounds with the meds, but that was about it.  (At another facility where I briefly worked the night shift, there was no nurse on staff or on call at night - and I gave out the meds at breakfast from a prepared tray.)

How will this play out?  I don't know.  I'm headed up for the day tomorrow and possibly for a visit this weekend, so we'll see...

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