Sometimes a Bruise Is Just a Bruise: Abuse and Alzheimer's Disease


by Beverly Bigtree Murphy, MS, CRC, Caregiver
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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 don’t 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:

"While there are more call-ins regarding elder abuse, the majority are unfounded but still have to be investigated, and many calls reflect little more than negative attitudes surrounding elder care as well as attempts to get even with someone for some personal reason."

There are reasons for the rise in call-in complaints and convictions:

  • The drive to institutionalize our elders, particularly those with dementia, has predisposed the public at large to distrust the ability of caregivers to give care at home. This attitude is enhanced by lack of knowledge about the disease processes, bias that strips our people of their worth and lack of understanding of what caregiver responsibilities and tasks really are. In the process the connection caregivers feel with their loved one is too often dismissed as being co-dependent behavior.
  • The public and many service providers see the care tasks involved in a disease like Alzheimer’s in such negative terms that they have a difficult time supporting these caregivers. The belief persists that loss of thinking process makes the tasks both unrewarding and too difficult which then leads to burnout and abuse. While those with Alzheimer’s Disease are truly at the mercy of those who care for them, so are those with ALS, Parkinson’s, MS and a host of other illnesses. However, where caregivers learn to deal with the loss of recognition and other cognitive skills, outsiders seem to attach almost mythical importance to them which is why this belief persists. With Alzheimer’s Disease, the public is primed to look for abuse, and it is easy to make a case, as demonstrated in Case Study III.
  • People know less and less about their neighbors. This contributes to the isolation and vulnerability of caregivers. The fragmentation of families further isolates caregivers. In a very real sense society does to caregivers what real abusers do to their victims and the result is very similar. Caregivers, like the abused, become so isolated and so demoralized by negative reinforcement it is difficult for them to ask for help or seek it out. The question arises: "Who is the potential victim in the duet of caregiver and loved one?" It seems to me that both are equally at risk. Case Studies II and III speak to this problem.
  • There is also a rising vigilante mentality, armed with cell phones and nurtured by an inflated sense of how other people should behave. They form opinions based on a few seconds observation and then dial 911. People can call in, hide in anonymity, feel they have done something about what they think they see, and walk away with little care or responsibility for the ensuing horror many suffer because of these kinds of calls. Case Study I and II are prime examples of this.
  • Law enforcement agencies have gone after abusers with a vengeance and convictions are up. How many are of real abusers is the question. Unfortunately, spousal abuse has become a plea bargain heaven for many communities. Plea-bargains save court costs, give high conviction statistics, and bring in additional revenue in the form of fines and ‘anger control’ classes. Many of these cases would not hold up in court if tried. However, people under duress, such as the gentleman in Case Study III, are easily intimidated and the choice between a plea-bargain, that doesn’t involve a permanent record, and the cost of legal representation in trial isn’t difficult to make.

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?

  • Often they were abused themselves as children, but not all abused children turn into abusive adults.
  • They are bullies who surround themselves with people they can easily manipulate. Their needs are neurotic in nature. They reject responsibility for their actions, they blame others for their lot in life and mostly, they need to be the one who is always right.
  • If they beat, exploit and degrade their wives and children they will probably do the same to their parents.
  • They isolate their victims from family, neighbors and friends. The last thing they want is a stranger observing their abuse or providing an avenue of escape or support to the victim. Abuse is a private matter. Consequently…
  • Their mates do not enjoy any freedom to mingle with the outside world.
  • Their children do not enjoy much exposure to friends, school activities or sports unless the abuser is the one in charge.
  • Their abused elder will not be enrolled in day-care programs or involved in Medicaid sponsored home care and they will not hire home health aides or elicit the help of volunteers or neighbors for help or respite.
  • They avoid involvement with support services and you are not likely to find them in support groups. As a result, the likely hood of support providers encountering these individuals is probably not very high.
  • If financial control is what is motivating the abuser, you will not see them spending much of it on the elder in the form of day-care, home-health aides, or other programs.

I repeat: a true abuser will do almost anything to avoid scrutiny by others.

I’ve 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 80’s 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 Belle’s growing needs, but he wasn’t 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 didn’t share much of his life with neighbors or friends. He felt he was preserving his wife’s 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 wife’s Alzheimer’s 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 Belle’s care.

Bob and his daughter were ordered out of the home for 10 days at their arraignment. The DA’s office also offered Bob a ‘deal.’

  • If he pleaded not guilty to spousal abuse, he would not only be prosecuted, his daughter would be prosecuted and they would ask for jail time for him.
  • If he pleaded guilty the court would only impose a fine, a series of ‘anger control,’ classes for which Bob would pay (the number of meetings to be determined by the ‘therapist’ who would ‘assess his progress’), and they would not prosecute the daughter. Bob would face one year of probation and if there were no more complaints during that year they would wipe his conviction off his record.

Guess which offer Bob took.

The DA’s office wasn’t interested in any of the particulars leading up to the incident, the way in which Alzheimer’s Disease affects behaviors, the way in which Alzheimer’s 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 Alzheimer’s 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.

  • Was this man wrongly accused and prosecuted? YES!
  • Did this man receive any support in terms of how to deal with his wife’s increasing problems? NO!
  • Did the anger classes, stop the physical abuse that never happened in the first place and was he helped at all in dealing with his wife’s needs? WHAT DO YOU THINK!

Case Study II

Betty’s husband, George, was in the late stages of Alzheimer’s 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.

* Just because a family is subsidized by a loved one’s Social Security does not make them any more potentially abusive than any spouse subsidized solely by the breadwinner’s salary.

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 weren’t 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 Betty’s door three days later.

The moral to the story is this: Don’t 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 Betty’s side of this picture. I doubt if the voice, stopped to even consider the part she played in Betty’s 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 wasn’t 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 don’t 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 wouldn’t 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 don’t 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 Betty’s voice, taken the time to assure her she was not being discriminated against, that there was a shortage of volunteers trained to work with Alzheimer’s Disease or that she understood Betty’s frustration and appreciated the job she was doing, Betty’s outburst probably wouldn’t have occurred. Betty said it herself in our support group, "Just once I’d like to hear that I’m 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 Alzheimer’s 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 Naomi’s 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 Naomi’s episode. They didn’t even have a change of clothing on hand for the participants in this program. Since they actively recruited an Alzheimer’s 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 Naomi’s issues of discomfort, and embarrassment weren’t 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 Naomi’s adult-day-care program phoned her:

" …she’s (Director) very concerned about Naomi. They’ve been having problems toileting her lately because she refuses to go and exhibits behaviors as if she’s been abused. She says the bowel incontinence has been a big problem with Naomi having a bowel explosion at the center and at home…both of which were difficult to clean up. Ruth described the clean up at home as being "hell." She feels Ruth is stressed to the max and has become verbally abusive to the aides and she is concerned that Naomi could be a victim of some of that abuse also. There have been no signs of bruises… they’ve been watching closely. She tried to talk to Ruth about a nursing home, but she says no. She wants to wait on calling Adult Protection since this could be a short term stress related problem."

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 mother’s 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.

  1. There is no research I can find that ties problems with toileting to abuse in an Alzheimer’s population. Furthermore, research that was developed on one population, i.e. abused children, who have the ability to call upon memory, can’t be transferred to another unrelated population such as those with Alzheimer’s Disease who have no ability to call upon memory. Every expert I discussed this case with agreed the equating the symptoms of child abuse to Naomi’s situation was, at the very least, a reach, especially since there were no obvious signs of abuse and Ruth had demonstrated care and concern for her mother.
  2. People with Alzheimer’s Disease move into a moment-by-moment existence as the disease progresses. Abstract thinking and short-term memory are so impaired by the late stage of dementia, the brain can’t do the mental gymnastics necessary to connect two hours together, let alone different days or events.
  3. Naomi had been traumatized the day of the incident. She experienced pain from spasms, she had soiled herself, and had been bombarded with a hostile environment (noise, mirrors, lighting, highly tiles surfaces, faucets running water and toilets being flushed in the restroom), and the attitudes and body language of the people who were forced to deal with the mess. On day two the environment and the attitudes of her helpers hadn’t altered much. In my mind, it is likely that Naomi’s combativeness had more to do with her immediate response to the hostile environment of the bathroom and the attitudes, comments, and body language of the ‘helpers,’ more than anything else, but how quickly they looked to Ruth as the cause.
  4. The reference to Ruth being abusive to the aides was totally misrepresented. Ruth was late getting home from work because of traffic one day to find her mother alone, needing a diaper change, with the water faucets running full blast. How Ruth’s justified anger at the irresponsibility of this aide’s leaving her unattended could be transferred into potential abuse of Naomi is beyond me. It’s like assuming you’d beat your child up because the baby sitter left her unattended and in danger.
  5. And I ask you, what should Ruth have said when asked "how the clean up at home" was? Who enjoys cleaning up diarrhea?

What Ruth needed was less talk about Naomi’s 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 doctor’s 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 Alzheimer’s Disease

People with Alzheimer’s 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 don’t get injured. They bruise when:

  • Moving from bed to wheelchairs and being helped in and out of cars;
  • Their circulation is affected, (partly because they become more sedentary);
  • They become disoriented, are subject to auditory and visual hallucinations, and can become combative. No matter how adept the caregiver is an ‘accident’ sometimes happen, and they bruise;
  • They become more inflexible and stiffen, which happens in the late stages, which makes moving them more difficult;
  • They develop myoclones; uncontrollable spasms causing them to strike out;
  • The brain’s increasing inability to perform lower level functions causes physiological changes that alter the neural, circulatory, muscular, digestive, pulmonary and other functions that are necessary for physical health to continue. All of these affect skin quality and resiliency;
  • They become emaciated because they lose the ability to chew and swallow as well as interest in eating, and their bodies stop assimilating nutrients from their food. The more weight they lose, the easier they bruise; and
  • Bedsores develop because of poor skin condition, weight loss, lack of movement and a general physical deterioration.

And all of the above ‘accidents’ happen in nursing homes as well as private homes.

Dr. Robert McCartney, a noted physician working with Alzheimer’s Disease is also a member of the Medical-Scientific Committee of the Rocky Mountain Chapter of the Alzheimer’s Association in Denver. He was on the panel at a seminar on Elder Abuse, at which I was the keynote speaker. He said:

"Sometimes a bruise is just a bruise. We have to spend the time to learn about the dynamics of the family unit before we jump to conclusions about possible abuse."

I’d 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.

Conclusion

- 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 I’ve 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 isn’t only unrealistic it is just plain evil. We are not allowed to express despair, frustration, anger, hopelessness, sarcasm, or anxiety. We can’t yell, swear or express the wish that we want it all to end, without being held up for judgement. And yet there isn’t a book written about death and dying issues that doesn’t 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 don’t 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.

Internet Resources

- National Center on Elder Abuse
- Phone Numbers to Report Abuse
- The Elderly Place
- Elder Abuse and Neglect – Comprehensive information and resources by Linda Woolf, Webster University
- Elder Abuse Links from The Elderly Place
- Incontinence Care for Alzheimer’s Families by Beverly Bigtree Murphy

Additional Articles

- Elder Abuse: Definitions and Resources for Caregivers
- Financial Caregiving
- Legal & Financial Matters Channel

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