Sometimes a Bruise Is Just a Bruise: Abuse and Alzheimer's Disease
by Beverly Bigtree Murphy, MS, CRC, Caregiver
More About Beverly...Editor's Note: The opinions expressed in this article are those of the author alone. We present this article to more fully capture the nuances and perceptions of elder abuse, especially as it relates to those caring for loved ones with Alzheimer's Disease. I encourage you to read the articles Elder Abuse: Definitions and Resources for Caregivers and Financial Caregiving since they complement this personal account very well. If you ever encounter a situation that you suspect is abusive, please get as much information as possible and then contact the appropriate authorities. R.F.O.
Sometimes a Bruise Is Just a Bruise
The statistics all tout the rising incidents of elder abuse. The statistics are misleading .
The statistics include all call-in complaints whether the complaint is unfounded or not, and they include all plea-bargain convictions whether the case is actually trial viable or not. Because we are living longer, there are larger numbers of elderly needing care and the statistics dont necessarily reflect the percentages in relation to the rising population.
According to a former colleague of mine, who works for Social Services, in New York City:
There are reasons for the rise in call-in complaints and convictions:
Who Are the Real Abusers?
The reader should not assume that I believe that elder abuse is a myth or fantasy. Elder abuse is real and a horror when it is perpetrated against one of our dependent loved ones. I am trying to draw distinctions between real elder abuse and perceived elder abuse due to ignorance or lack of information. Who are the real abusers?
I repeat: a true abuser will do almost anything to avoid scrutiny by others.
Ive included three case studies in this article to emphasize how these call-in complaints affect the lives of real life caregivers and their families. I think it is important to put faces on these so called abusers. The names have been changed to protect the innocent.
Case Study I
Bob was in his early 80s and had cared for his wife at home for over 10 years. He received some help from family members and an early stage adult-day-care program. He had been in a support group for over 5 years. Belle was terminated from her day-care because of bowel incontinence, which took away his primary source of respite and Bob was told it was time to institutionalize her. There was another more comprehensive program available in his community that would have dealt with Belles growing needs, but he wasnt told of its existence. He was, however, given a list of nursing homes, an option he rejected.
Bob was left to deal with the wandering, the sleeplessness, the hallucinations, and the rising physical care needs without much professional support. Being a quiet man and a private man he didnt share much of his life with neighbors or friends. He felt he was preserving his wifes dignity that way.
Ultimately it was a neighbor who did him in. One morning, thinking Bob was a stranger, Belle refused to let him remove her clothing or shower her. She became louder and more volatile as the moments passed, Bob becoming loud in response and more desperate to get her out of her soiled diaper. Instead of phoning Bob, which might have dissipated the episode, 911 was dialed. Because the complaint involved a husband and wife it was treated as a spousal abuse call which meant mandatory arrest.
The moral to the story is that you should let your neighbors know what is going on.
The police arrived to find Belle partially clothed with bruises on her arms where Bob had been trying to restrain her. Bob had scratches. Belle claimed Bob was trying to rape her, but even with identification and medical documentation of his wifes Alzheimers Disease, and an explanation of the events, he was placed under arrest. They did wait for his daughter to arrive to take care of the mother. However, when the daughter arrived she became incensed seeing her father in handcuffs which resulted in her arrest for interfering in his arrest. A policewoman was assigned to wait for another daughter, who lived 200 miles away, to take over Belles care.
Bob and his daughter were ordered out of the home for 10 days at their arraignment. The DAs office also offered Bob a deal.
Guess which offer Bob took.
The DAs office wasnt interested in any of the particulars leading up to the incident, the way in which Alzheimers Disease affects behaviors, the way in which Alzheimers Disease affects caregivers, or that Bob might benefit from some emotional support and ways to deal with the problems. What they wanted was a quick conviction and that is what they got.
Belle died of Alzheimers Disease a few months after the incident, in her home with Bob and their children present. Several months later he received notice that his probation was passed.
Case Study II
Bettys husband, George, was in the late stages of Alzheimers Disease. He was bedridden and chair-bound. There was no family to help and they did not qualify for Medicaid. Their assets were tied up in their home and they literally lived on his Social Security.* Betty received volunteer help from her church and a few hours paid help for respite breaks. She wanted to keep George home and he eventually died at home with her, his priest and his longtime Church volunteer by his side.
Betty phoned Aging Services in her area about their volunteer respite program, which offered 3 hours a week for in-home caregivers. Over the next three months she got what she perceived as the brush off. Her calls werent returned after leaving messages and when she did get a real person on the phone they made promises they never followed through on. On her last call she was told her counselor, was on vacation and she would have to wait another three weeks for information. She was understandably frustrated and made the mistake of telling the voice, what she thought of the program. Adult protection showed up at Bettys door three days later.
The moral to the story is this: Dont ever raise your voice to a professional helper or show your vulnerability to them or you can be in real trouble.
What concerns me is the lack of understanding of Bettys side of this picture. I doubt if the voice, stopped to even consider the part she played in Bettys outburst, or that her anger was justified. Was the voice thinking: "Hey, she dared to raise her voice at me. She must be potentially abusive" ?
Adult protection crawled though her life for the next two years even though they determined the complaint was unfounded. They offered no services, because she wasnt eligible for any, showed up unannounced, just in case she was abusing George, their last unannounced visit three weeks after he died. Betty was demoralized by their involvement in her life and outraged at the betrayal she felt. In her words, "They talked about relieving my stress but it seems to me they created more than I had in the first place."
Is Stress the Main Factor in Abuse?
While the long-term care of someone with this disease is stressful, I dont think stress, in and of itself, breeds elder abuse any more than stress breeds child abuse. While some of us have little resiliency, the vast majority of us do manage to deal with what life hands us and most of us want to do what is best for our loved ones. Most of us are incapable of abusing a family member no matter how stressful the tasks might seem. Do accidents happen? Yes, and they happen in child rearing as well and they also happen in nursing homes. Is every accident a sign of abuse or neglect? Of course not!
Stress is a fact of life. Raising children is stressful. Loosing a job is stressful. Facing chronic illness in yourself or with a loved one is stressful. If stress alone were the cause of abuse then we wouldnt be sitting around talking about this topic we would all be out on the street doing serious bodily harm to each other.
However, the incidence of cancer, heart disease, stroke, depression and alcoholism is out of proportion for caregivers. We exist with sleep deprivation, constant anxiety, loss of self-esteem, lack of help and feelings of helplessness. Since we tend to internalize our fears, our grieving, our loss and the specter of economic deprivation, our immune systems our compromised. It is not unusual for the caregiver to die before their loved one. When the caregiver succumbs, it is the loved one who suffers because their mainstay is no longer there to care for them, and the statistics do prove that.
Caregivers dont need to be treated like criminals, what they need are options, some basic tools, respite and some encouragement. An occasional call to just chat can do as much for the morale of a caregiver as actual time off. Had Bettys voice, taken the time to assure her she was not being discriminated against, that there was a shortage of volunteers trained to work with Alzheimers Disease or that she understood Bettys frustration and appreciated the job she was doing, Bettys outburst probably wouldnt have occurred. Betty said it herself in our support group, "Just once Id like to hear that Im doing a good job. Instead all they do is try to beat me down."
When you think about it, that is a form of abuse.
Case Study III
Ruth moved in with her mother, Naomi, when her Alzheimers Disease was diagnosed. Ruth joined a support group and enrolled her mother in an early stage adult-day-care program in order to continue working. When her mother became eligible for Medicaid, Ruth opted for the home care program rather than institutionalization. Ruth then began receiving calls complaining about Naomis behaviors in day-care and increasing pressure to institutionalize her.
The situation came to a head when Naomi experienced an intestinal problem resulting in intermittent episodes of diarrhea. Because the program was an early stage program they were unprepared for Naomis episode. They didnt even have a change of clothing on hand for the participants in this program. Since they actively recruited an Alzheimers Disease population in which incontinence was inevitable I found that incomprehensible.
At one point Naomi had been left alone in the bathroom while staff went in search of more toilet paper, during which she got poop on whatever she touched. I believe she was attempting to clean herself. The whole episode was traumatic for Naomi as well as the staff, but Naomis issues of discomfort, and embarrassment werent even mentioned by any of the professionals involved in this home plan. Naomi had become something to take care of in their eyes, instead of someone to care about.
When Naomi returned to the program the next day she refused to allow the staff to toilet her and become combative when they took her into the ladies room. The following case note was written by the Medicaid case manager after the director of Naomis adult-day-care program phoned her:
Beginning to see the handwriting on the wall, Ruth decided it was time to look at the case notes everyone was generating about her mother. She learned through the Internet that she had the right as her mothers legal guardian. The various agencies were reluctant to give her access but were required by law to hand them over and did so.
She was devastated at what she read. She thought of those people as her support system. Instead they were indulging in a gossipy format that began the day Ruth rejected nursing home placement for her mother. It was almost as if she had been set up to fail in home care. I was appalled at the lack of understanding about how this disease works and the lack of professionalism in the reporting when I read them.
What Ruth needed was less talk about Naomis poop and more action in terms of referral to a more comprehensive day care program. Once Naomi was enrolled in such a program, which Ruth located through her own efforts, all discussion about bowel movements and behaviors stopped. Ruth finally found the support she needed and Naomi continued in program another two years, even after becoming wheel chair bound.
The moral to this story is you have the right to review doctors records, test results, agency records, referral letters, case notes and exchanges of information between agencies. It is a good idea to do so if you are the caregiver. It not only sends a message that you know what you are doing; you send a message that you are watching what they are doing.
Regarding Bruises in Alzheimers Disease
People with Alzheimers Disease lose balance and the ability to navigate their environment as their disease progresses. They tend to bump up against walls and furniture, they slip and fall and they need to be held firmly in the bathroom so that they dont get injured. They bruise when:
And all of the above accidents happen in nursing homes as well as private homes.
Dr. Robert McCartney, a noted physician working with Alzheimers Disease is also a member of the Medical-Scientific Committee of the Rocky Mountain Chapter of the Alzheimers Association in Denver. He was on the panel at a seminar on Elder Abuse, at which I was the keynote speaker. He said:
Id take it a step further. We have to stop assuming that every caregiver is going to blow because of the burden of the tasks. We must stop confusing the tasks, which are indeed monumental, with our own fear of needing those tasks done for us some day, and we need to offer caregivers something more than an "Out-of-Sight, Out-of Mind" approach to the problems we face. Some of us actually want information and options.
- Is physical abuse of elders on the rise?
We are probably spawning about the same proportion of mutants in our population as ever and probably no more. Abuse comes from a place much darker than ordinary human response to stress. I think the real abusers are still out there doing their thing in private with little impact on their activities by the police or the support services people. But there is a rising McCarthyism out there conducting a New Age Witch Hunt, rounding up all the usual suspects, many of whom are trying to survive a devastating illness without much help from anyone. Seems to me there is a more productive way to work with people who serve a very real function in this society, that of caring for our elderly frail.
- Is financial abuse of the elderly on the rise?
Absolutely! Rising economic needs and people living longer thus using more of their estates for their long term care has left some adult children under temptation to help themselves before their elder dies. And it may account in part for the warehousing attitude some have towards the long-term care of our people.
Because there are more elderly and they are living longer, there is a greater group of vulnerable people open to scams, unscrupulous sales people, telemarketing and other avenues that manipulate funds.
- Is it fair to raise the specter of abuse just because the caregiver voices anger or frustration with a system that is largely unresponsive to their needs?
What I especially like about some of the complaints Ive heard across the country is how caregivers are invited to open up and express their feelings only to hear their own words used against them. For some reason, and in spite of all the rhetoric to the contrary, we home caregivers are expected to be perfect. We are held up to a "June and Ward Cleaver" or a "Stepford Wife" standard that isnt only unrealistic it is just plain evil. We are not allowed to express despair, frustration, anger, hopelessness, sarcasm, or anxiety. We cant yell, swear or express the wish that we want it all to end, without being held up for judgement. And yet there isnt a book written about death and dying issues that doesnt describe these responses as being normal
As a former professional counselor and as a caregiver I know this:
As a support provider you are not dealing with a separate entity called "Caregiver." You are dealing with a unit of two people who are bonded to each other in ways that are unique from any other relationship faced in life.
Caregivers are not the enemy. We bring into the mix a lifetime of cultural influence, life experience, regional richness, and family upbringing. Some of us are louder than others, some of us even swear on occasion, some of us work in quiet acceptance and some of us cry at the drop of a hat, but those things have nothing to do with whether we are good or bad at what we do. We dont fit into one job description of what a caregiver is supposed to be like. We bring the same diversity to our caregiving as our family members bring to their disease process and we are, as a group, doing the best we can do under very difficult circumstances. It is too easy to judge us, especially when you reside at a safe distance from the real challenges we face. You have an obligation to look past the surface and learn about us before you condemn us to abuser hell.
Its been said it takes a village to raise a child. I offer that it also takes a village to see our elders through the last phase of their lives. None of us can do it entirely alone. You either are part of the solution or you will be part of the problem.
- National Center on Elder
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