How much neglect can the human spirit endure before it’s too late to save it?
A lot.
WASHINGTON (AP) - Toddlers rescued from orphanages and placed in good foster homes score dramatically higher on IQ tests years later than children who were left behind, concludes a one-of-a-kind project in Romania that has profound implications for child welfare around the globe.
The boost meant the difference between borderline retardation and average intelligence for some youngsters.
Most important, children removed from orphanages before age 2 had the biggest improvement - key new evidence of a sensitive period for brain development, according to the U.S. team that conducted the research.
This is about very young children and babies. But the same can be said for older adults as well. I know of no studies that speak to it, but I know from personal and professional experience that very old, frail and even demented people can thrive when given some attention.
Several months ago my brother and his wife placed her mother in a local nursing home. Marion has Alzheimer’s disease. She was DX with this three years ago and currently she is in the mid stages of this dreaded disease. Marion still recognizes herself, and she is capable of doing a lot of her own things. The problems she faces surround short term forgetfulness which leads to unsafe behavior and activity. Marion is able to swallow her medications, but she forgets when to take them, or she forgets that she already took them…She is able to boil an egg, but forgets to turn the stove off…she also forgets what time period she is in- she constantly seeks her little children who never come home…this causes her to panic and get very upset.
For many reasons my brother and his wife could not take Marion into their home. I’m not impressed with the reasons and excuses, and it’s caused some discontent between us all. We’re grown ups though and can get over this. They chose to place Marion in a nursing home, a good one, near their home town…visits were only minutes away. He did most of the work on my house last September, and part of a deal we made was for me to oversee Marion’s care at the nursing home. It’s been a rough ride.
At first Marion had to adjust to life in a place where her personal habits were no longer important. Her identity and soul got lost among the many needs of other residents (who also faced the same problems and issues). While she was able to adapt to the physical surroundings, she never quite fit in with the overall environment of the nursing home. She wandered a lot, looking for her lost children…she became more and more confused as different staff worked with her day in and day out. Mind you, I was there every day except weekends. I went to visit her at different meals- to spend time with her and to assess her progress or decline as it turned out to be.
When I was there, she never had accidental voids…and up until the last few weeks she was feeding herself. The staff were great but extremely overworked and burdened. The aides loved it when I came by because I would help them. The nurses were grateful to have an extra set of eyes in the dining rooms at mealtimes. Of course management wasn’t overly impressed with ME, simply because I held them to account when things weren’t right. Short staffing, cold food and missing supplies irked me to no end and the DON/Administrator heard about it.
I assisted Marion with her meals and became fond of some of the other residents, who gravitated to our table.
It became a fun time. Instead of just sitting there talking about the weather, we would use these moments for an activity. Using my prior experiences from working with people with dementia, I got some books that are designed to open up discussions- as silly as it sounds, there are dozens of books written for this purpose…trivia from the old days; little stories about life in the 1930’s, 40’s and 50’s and so on…Marion was a homemaker, so some of these discussions were right up her alley. One of our table mates, Thomas, was a Judge. He really loved our discussions that came from stories in books called You Be The Judge. Another thing we did was cook the meals; up until late October we grilled burgers and hot dogs and steaks outside on the patio…Marion and her new “friends” made the salads and desserts. It wasn’t a big deal to spend a few hours each day at the nursing home. In exchange for this I was able to make the lives of a few people a little better, even if they would soon forget. For those hours, these people had rediscovered their spirit and sense of being. They thrived.
The normal daily doings of nursing homes don’t allow for such time from the staff. They have tasks to perform; they have assignments with 10 or 12 residents; they are busting their asses trying to get it all done. Nursing homes have activity professionals whose job is to entertain the residents. More than that, they must write individual activity plans for each resident. Often it is one person responsible for ALL of this. How can one person spend quality time with so many? They can’t…so most activities are delivered to a large group at the same time.
I can’t count the times I have witnessed these large groups in action- where half the residents are slumped over in their wheelchairs, the other half is participating in the Sing-A-Long. Some residents recall the words to the song and others don’t…or, the exercise groups, where again some can do and others cannot. In my mind, nothing is more humiliating than having to sit through and watch others do things you can no longer do; no wonder so many shut down and fall asleep…they can’t get involved- the activity is too far advanced for most with dementia. Large groups draw attention to those who can do, and those who cannot do. But it’s the way of it.
So it went for four months…my almost daily visits turned into fun times for most, and all was as well as can be expected. Until three weeks ago. The nursing home was short staffed; one of the nurses decided to group all the residents in one room, to supervise them all. Marion was placed into a recliner, to prevent her from wandering. This was a restraint and they knew that. She tried to get up and her legs got caught in the reclining apparatus, she fell and broke her hip. So much for good supervision.
From this time on it’s been downhill. Marion had to be bed bound…she could be out of her bed, but that meant someone would have to stay with her since she forgets she shouldn’t walk…it also meant another big risk for another fall. The nurses medicated Marion to the point she was totally out of it, as they say. Under some guise of pain control, they managed to keep her sedated 24 hours a day. She stopped eating. And drinking. She became incontinent. She grew weak and couldn’t move herself around in her bed. What happens to a person who is stuck in a bed, for weeks at a time, with poor nutrition and even worse nursing care? The lack of repositioning and turning led to a bed sore which quickly became infected. That infection spread to her blood…and Marion was suddenly dying.
It happened to fast. As it always does. Everyone gave up hope. No one could see how the environment was the killer here, not the infection. My brother was the last person who saw this for what is was: An institutionally induced series of events that was leading to the death of a woman, who was no where near ready for that. In her normal stage, demented and slightly frail, she could be expected to live another two to three years if not more. But, because of unintentional neglect, she faced a painful and unnecessary death.
What to do? Plead with my brother about taking Marion out of the nursing home and into his home. Nope, he wouldn’t do it. His wife wouldn’t have any part of it…her reasons? She didn’t have the time and patience to care for her own Mother who has Alzheimer’s disease…my SIL didn’t want to see her home wrecked by the intrusion of a human being who might urinate on the plush wall to wall carpeting they just had installed; she might defecate all over the house; she might do this, do that…
Fuck. Babies do that but it’s okay…they outgrow it. Fiction tells us old people face this fate.
Incontinence is NOT a normal thing for elderly people…it is normal for elderly people who are institutionalized however. When you know someone’s routines, you can prevent this from ever being an issue. But it was more than this. Bringing in an old lady into her home was just too inconvenient for my SIL, who lives the good life in a fancy house my brother worked hard to provide for her. The easy solution was the nursing home, even when its cost might be her mothers’ untimely death.
I couldn’t live with it. Knowing Marion was dying, and knowing it wasn’t right, I took my brother aside and told him to let her come stay with me for a few months. To see if she could heal, and get back to where she was prior to her fall. Knowing this would be a sacrifice on my part, he agreed to it. So the other day he removed her from the nursing home, packed her stuff and brought her to my place…it was an interesting ride for them. She was able to tolerate sitting up, in spite of her hip. THAT told me she was definately not on her death bed.
Marion’s been with me for two days now. So far, so good. We have a nice reclining wheelchair for her to use, and she loves an old recliner I have. She’s feeding herself once again; she hasn’t had any episodes of incontinence. She’s been outside in the snow selecting pine branches for wreaths; and tied ribbons for them. Tuesday she was read her last rights. This morning she’s asking for fried eggs and bacon at the local diner- I brought her downtown for breakfast.
Like the little babies in the orphanages, Marion is coming back to life, from the brink. Some people told me to leave well enough alone. That Marion’s time had indeed come. That God was calling her. I don’t do religion, but God did yell at me many times during this past week. He told me to keep advocating for this woman, who had been abandoned by just about everyone. I lost endless hours of sleep and felt great pain knowing another human being was being systematically put to death by the very people who are supposed to keep her alive and care for her.
Time will tell. She could die tomorrow. Or next week…or in two to three yrs…or in ten yrs…no matter what though, she’s alive and thriving right now. It never ceases to amaze me what a little love and attention will do for the human spirit; even the most frail and demented or brain damaged.
