by Sam Sillen
Rated "G" by the Author.
edited: Sunday, February 11, 2007
Posted: Saturday, February 10, 2007
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The Curse of Dementia
Maybe this world is another planet’s hell.
In recent years there have been many times when I’ve said to myself, Lord, life is ugly. But I have to confess it’s not really a prayer. I’m just venting against the unalterable tangle of problems that life drops on us all. Loud expletives and clenched fists can be an indicator that we are being crushed too often. Some face up to stress better than others. Some have ways of dealing with it, but trouble can eventually dwarf the best of us.
A friend who once worked with disadvantaged young adults told me she left work during her lunch break, walked to a nearby railway track and screamed her head off when a train passed. Sounds amusing, but when your life is uncomfortably full of jagged edges that periodically tear away at your emotions and personality, you need to take time out to assess your behaviour just in case you’re losing it. Such harassment is insidious.
Dementia (meaning irrationality) is one of the sickest jokes life can play on us. There are many others of course. Most mature adults have sad stories to tell, but watching someone you love drain away bit by bit is almost impossible to cope with until you stop trying to approach it logically. While we watch, the strong become dependant, weak, silly and helpless. They are marooned. The once keen, sharp mind is sick because the brain has been damaged by clumps of protein plaques and tangled fibres that progressively destroy nerve cells (Alzheimer's Disease).
Relatives of dementia sufferers, who are suffering too, are forced to formulate unprecedented thoughts to help them cope. Essentially they clutch at straws to ease the hurt. They tell themselves that the person who brought them up, the person they’ve been married to for 50 years, the person who was once so talented, endearing and dedicated to family life is now so mentally impaired that he or she doesn’t experience indignity, or feel the pain of separation from relatives and close friends.
Those with dementia don’t realise they’re talking gibberish and wearing nappies. They don’t know they’re using language that’s out of character. They don’t know why they shouldn’t urinate on the floor. They don’t realise they have been abusive to staff or relatives or other residents. They’ve forgotten where home is yet some of them continually want to go there. The loss and wretchedness can’t be measured.
There’s nothing inside or out that brings any relief whatsoever when you find your father standing alone in a room half-naked after soiling himself. No amount of mental or spiritual acrobatics enables you to come to terms with this or having to wash and shave his face, clean his teeth, comb his hair, feed him slices of fruit and cheese and cut his toenails. Relatives must be stoical. Some of them know through experience that puny positive thinking is no weapon against depression.
When your father can’t remember your name or doesn’t know who you are, there are no places you can escape to where there is any worthwhile relief. The only thing that helps is the unwanted familiarity that comes with routine and the passing of time. Mostly you simply desensitise yourself by refusing to dwell on it. Structured thinking is out. To be honest, when I really thought it through as far as I could I just cried too much, and I don’t cry easily. I haven’t since.
Step Into Another World
It’s all too easy for relatives to be unfairly critical of nursing homes. We can all live with attempts at keeping up appearances, especially at announced inspection times. Some of us encounter cheesy promotional spiel that would be better suited to a car salesman, but the shine will wear off. It’s best to simply focus on the facts and gauge standards as best we can. But a few steps beyond the garden flowers and plush foyers bring us into an unpleasant environment, with very disagreeable sights and smells.
Sometimes things aren’t what they seem and it’s all too easy for stressed relatives and visitors to jump to wrong conclusions. Just because we see an old person lying helplessly on the floor doesn’t mean she’s neglected. In the dead of winter an elderly frail man sitting in the corner fast asleep with is bare feet on the cold floor doesn’t necessarily mean he’s been overlooked. He may have resolutely resisted all attempts to have his (or somebody else’s) socks put on.
Part of the problem is this: there's a lot of potential for ambiguity in nursing homes. After all, human nature being what it is, the neglect of the elderly can sometimes be explained away quite easily. A bothersome resident may be put in a large low chair he can’t get out of simply to keep him out of the way. We would like to think that he’s there because it’s more comfortable and appropriate. Our loved ones may be sedated because it’s in their and other residents’ best interests. However, there’s plenty of ongoing evidence (see below) to suggest that sedation is regularly used excessively or just to make the carer’s life significantly easier, and this is plainly wrong.
Around the world the abuse of the elderly in nursing homes is depressingly common. Research shows that there are regular reports of malnutrition, "chemical straightjackets" (The Sunday Telegraph), physical attacks, outright cruelty and theft.
The sedation of residents causes a lot of concern. Nursing home staff may need to use calming drugs to control problematic or aggressive behaviour. It may take time to discover how much medication to give and what works best for whom. Relatives appreciate that this is unavoidable but may also question how much is too much. They have every right to speculate about possible selfish motives for the sedation of dementia sufferers.
Relatives should express their concerns quickly if they are convinced loved ones are unreasonably sedated, but it's easy to be too judgmental. Residents may appear to be stupefied. They may be unable to walk or even stand. They may have difficulty keeping their eyes open. Too much sedation is the likely cause, although illness can result in similar symptoms. It's best to voice your concerns.
“…many patients are still being drugged into a stupor just to make them easier to care for” (The New York Times).
“A report by the Liberal Democrats suggests residents who do not need these drugs are being kept sedated to make life easier for staff” (BBC news item).
“More than one in 10 residents of nursing homes and long-stay units for the elderly are receiving inappropriate medication to deal with the symptoms of dementia, new research has found” (The Irish Times).
“The over-prescription of medications, particularly of anti-psychotic medication for people with dementia, is sometimes used in the care environment as a tool for managing service users and ensuring that the care of people with dementia is easier for the staff” (Irish Women Lawyers Association, Law and the Elderly).
“People with dementia are too frequently given powerful sedative and antipsychotic drugs which make life easier for care staff” (Harry Cayton, formerly Chief Executive of the Alzheimer’s Society).
“The use of powerful sedatives continues to blight the lives of people with dementia. They reduce a person to a state where they lose what minimal control they have over their daily lives. Neuroleptics are frequently prescribed to people with dementia without explanation of the consequences, or consent from either them or their carer” (Andrew Chidgey, Campaigns Officer, Alzheimer’s Society).
Senior staff in nursing homes can be very helpful, but it’s best to keep in mind that you’re dealing with a profit-making business that’s understandably concerned about its reputation in the local community. Should we expect nursing home managers to quickly hold up their hands and come clean about isolated incidences of serious malpractice or when significant mistakes are made by staff, especially when they know it’s extremely difficult for outsiders to uncover the facts? In a sense each nursing home regulates itself on a day-to-day basis, so ultimately we rely on honest staff, thorough independent studies and more stringent inspections.
While I have a lot of genuine admiration for dedicated professionals working under very difficult and unpleasant circumstances, my countless daily experiences with several nursing homes over a 7-year period have left me rigidly sceptical. Sometimes there seems to be a reasonable explanation for just about anything. If only all nursing homes were so squeaky clean. Emotionally drained relatives are often left with no other choice than to hope for the best and trust in the professionalism of staff.
Too many bad experiences will eventually condition relatives, but this shouldn’t surprise anyone working in a nursing home. Suspicion and distrust will surface from time to time and it’s understandable that senior staff will be very keen to keep a lid on any discontent. But sometimes, rightly or wrongly, relatives feel fobbed off. A lot depends on how each home is managed and how forthcoming the staff is. Let’s face it: nursing homes have a questionable reputation in modern society. I know of those who were so shocked at the treatment of loved ones that they had them transferred to other nursing homes.
There are levels of annoyance. Many minor difficulties pile up into quite a heap but don’t seem to register with staff. As a family we have wondered why we are usually responsible for shaving, cleaning teeth and cutting nails. But we let it go. We are frustrated when qualified nurses repeatedly put hearing aids in upside-down and back to front. They get destroyed in washed clothes and even disappear off the face of the earth. Why does excrement lie long enough to dry solid? Why did 11 named pairs of socks disappear? Why was my father wearing a woman’s vest? Why was there a skirt in his wardrobe? Why had large bruises gone unnoticed? Why did it take over 20 minutes for staff to answer a call from my grandmother’s room?
And more seriously, we weren’t at all surprised to learn that my grandmother had broken her shoulder despite confident assurances from a senior nurse that she was fine. We were dismayed to learn she had been verbally abused and relieved that the member of staff responsible was rightly dismissed the following day. We were at a loss to understand why she was left sitting alone in a chair in the middle of her room when staff knew very well she had great difficulty walking but tried repeatedly. We were outraged when we learned how poorly my grandfather was cared for in a nursing home. One evening senior members of my family demanded a wheelchair and brought him back home without any discussion with staff.
And so on and so forth…
My family circle’s many negative experiences don’t constitute an unassailable indictment, but it’s little wonder that so many lack confidence in nursing homes and sometimes take staff assurances with a pinch of salt. Quite often there's an uneasy peace between staff and more astute relatives. Whether it's justified or not, some keep direct complaints and confrontation to a minimum for fear of grievances being taken out on residents.
Beyond that unpalatable reality, playing dumb occasionally and choosing to intelligently measure your comments to staff is often a wiser approach. In more serious ongoing circumstances it may be more effective to rise above local managers altogether and seek help and advice elsewhere.
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