Welcome to CareAware Video #5: Preventing the Unthinkable

Introduction

Lewis: Sadly we do see a lot of adult abuse in my office. It’s not the norm, so I don’t want to be completely cynical, but it does happen where family members, caregivers, neighbors take advantage of an older adult.

Oetjen: Abuse is a secretive issue for caregivers and care recipients for the same reason it is in a domestic violence situation.

Qualitza: A lot of cases that we receive are a lot of home-bound individuals that are in a caregiver situation or without a caregiver.

Boustani: The diads, the caregiver and the care recipient, it’s a very dynamic, complicated situation.

Lee: There was one time in particular he called me some nasty, nasty names I don’t want to repeat on camera. And it took me back, and I couldn’t believe he was calling me what he was. And Mom got angry at that point and started yelling at him.

Austrom: Caregivers have a special bond with those they are entrusted to care for. Those who are elderly or disabled depend on their caregivers to administer medications, help with their daily care and make financial decisions. They depend on them for support and often for companionship. It’s a relationship like no other, and unfortunately, sometimes that bond can be challenged when there are misunderstandings, complex medical issues and the stresses of everyday life.  Hi, I’m Dr. Mary Austrom, the Wesley P. Martin Professor of Alzheimer’s Disease Education and the leader of our educational core at the Indiana Alzheimer’s Disease Center, all at the Indiana University School of Medicine.

Bell: And I’m Orion Bell, president and CEO of CICOA Aging & In-Home Solutions. We’re your hosts for this video series, and we’re glad you’ve joined us.  Like a boat tied to its mooring, the caregiver and care recipient share a unique attachment. Sometimes the bond between the two is challenged by the stresses of life. But breaking the bond by abuse can have disastrous consequences. Today we will learn about the signs of abuse and what to do if you suspect abuse of a loved one. We’ll also hear from caregivers who have faced stressful situations and are themselves the victims of abuse by those they care for. Welcome to CareAware.

Signs That Your Loved One is Being Abused

Oetjen: The typical kinds of abuse that we see related to caregivers and care recipients is physical, so battery, or some sort of emotional abuse, and then also neglect. Maybe the person isn’t being cared for as well as they would need to be. Like they’re not getting appropriately changed, they’re not getting their baths, they’re not getting their medicine. Unfortunately we also see financial abuse. The caregiver may be misusing the care recipient’s money. Those are the three big ones that we see. 

Bennett: My advice for folks, it becomes very uncomfortable sometimes, but if you have a loved one in a nursing home for instance and you’re responsible for their care, trust your senses. If you’re beginning to sense that there is something wrong with this person that you’ve known all their lives, if there is a sudden change in behavior, trust your senses and begin to explore what’s going on. If they recoil in some evidence of fear that’s unusual for them when you try to reach out to help them with something, that may be the sign of something, something that’s worth your exploring further. You shouldn’t be afraid to ask those in charge what’s going on. You shouldn’t be afraid to ask to see the clinical chart either in the hospital or the nursing home to kind of get a sense what’s been recorded in the notes over the past previous hours or days since you’ve seen your loved one there. You’re entitled to answers because those types of changes in behavior are not new.

Qualitza: Things to look for are unexplained injuries, of course. You’re not always going to have that obvious hand print on the face that doesn’t coincide with what that person is telling you, “Oh, I fell down the stairs.” Evidence shows that somebody has inflicted injury onto you. The pattern bruises also, rope burns. Maybe perhaps belt marks. Maybe whatever that abuser has used to inflict the pain on that person are obvious signs to look for. Also things may be that the victim is dressing inappropriately for the weather. For an example, maybe it’s 90 degrees outside and they are wearing full length clothes. Sometimes maybe that’s to hide the bruising, and they are embarrassed and they don’t want others to see that.

Bennett: If there’s areas or where you think that mom is suffering from some pain, if it looks like she’s sensitive when you touch her right arm, then by all means, you want to take a look at the right arm itself, see if there is some type of bruising going on, see if there is some type of cut, some type of scar. These may be signs of abuse. It could also just be signs of neglect. It could be signs of nothing more than your loved one’s physical body reacting in an unpleasant way. A reaction to certain medications for instance could lead to bruising.

Seniors are Less Likely to Report Abuse

Bell: Seniors are less likely to report abuse. They may be ashamed or embarrassed. They’ve been intimated, or sadly, they may feel like it’s their own fault.

Qualitza: You’re dealing with a trustworthy population that they don’t disclose their embarrassment so to speak, so a lot of times it’s going to be unreported. They will protect the person that is exploiting them specifically if it is a family member. They would rather put up with that then as opposed to that loved one facing prosecution or jail time. So a lot of times they’re not going to be forthcoming in that they are being exploited or abused. It’s been embedded in their head that it’s an isolated incident, it’s not going to happen again. There’s a lot of self blame there, “If I didn’t require so much help. It’s my fault.” Oftentimes our elders make great victims, quite honestly, and are preyed upon, especially financially. They have more credit established, more savings accumulated, and cognitively they can’t say who did the abuse, whether it be physical, whether it be financial. They can’t remember what they had for breakfast, let alone by the time it gets through the court system. They’re not considered reliable witnesses.

Abuse of the Caregiver

Austrom: Physical or emotional abuse can often may directed against the caregiver as well. Those who are disabled, have dementia or Alzheimer’s get frustrated, too, and take it out on the ones they love and depend on most

Boustani: If you’re a caregiver of a loved one who suffers from cognitive disability, you will be facing a lot of dilemma managing your loved one’s agitation. Agitation is complex behavior displayed by the patient suffering from cognitive disability in general. It can be verbal agitations and physical agitation. Sometimes it can be aggressive and non-aggressive.

Lee: For anyone who’s done anything with people with Alzheimer’s, I mean, night time is probably the worst time for them. That’s when they start losing their temper and lash out at people. I pretty much took the brunt of that. He’d cuss me out the entire time, and say I didn’t love him or didn’t, all these types of things. My father was very frail towards the end, but he was extremely strong, and when he was stubborn and didn’t want to do something—like if I woke him up at night and he was in his rocking chair, he would grab hold of the edge and I could not even pry his fingers off of the chair. And just trying to get him to go to bed, sometimes he’d hit me and just get away, and that sort of thing. You’re trying to talk to him in a calm voice and not get upset with him and trying to calm him down any way you can.

Boustani: So if your loved one who has the cognitive disability, if you don’t understand the right communication with them, and you for example approached them in the wrong way, they might get frightened, and they might end up aggressively and physically being agitated, and they might hit you just because you were not well certified or a well-mastered caregiver. You might get hurt because of your loved one’s agitation. You might not understand that your loved one agitation was reactive to your issue, and then you might end up feeling you have to defend yourself, and then you go back and hit your loved one, and you create this vicious cycle that both of you end up being hurt.

Lee: During this time his emotions just ran the gamut. He’d be angry in one minute and the next minute he start crying and say, “I just want to go to bed.” And I go, “Dad, I’m trying to help you so you can go to bed.” And so he’d say, “Oh, you don’t care about me. You don’t care about anybody.” By the time I got him to bed and turned out the lights, then he’s day, “I love you.” “I love you too, Dad.” So he worked through it, but that was mostly our routine, and then it would start up again the next day. For the most part I understood. And it was just every now and then if I was really tired, or just not in the mood, then I’d fight back, and Mom would go, “Lee, he doesn’t know what he is doing.”

Saxman:  What happens is unfortunately with dementia is those filters go away, and so they get angry faster, they get frustrated faster.  They need to have a plan to address that, and they need to think about those things, and to do as much of that in advance as possible. But also thinking back to what were the triggers? What happened in the incident that created that piece where my loved one became violent, or my loved one reacted in a certain way? Because it may be, unfortunately, that you didn’t mean to do it, but you triggered the reaction in that person. You triggered the response, and what you want to do is think back to, “How can I prevent those things in the future, moving forward?”

Oetjen: So what does a caregiver do when they find that their care recipient is the one that is actually abusing them? They need to find ways to cope with that stress that comes from that. Maybe they need to check with a doctor, the care recipient’s doctor, to make sure they’re on the appropriate amount of medicine. As the disease progresses, then they might need more medicine to help with that anger. Other things would be to learn how to, if that person is angry because they are in some sort of delusional area, you might try to find a way to agree with their delusion instead of arguing with them and agree with the things that they’re saying, and try to find other ways to redirect and alleviate the anger.

Saxman: So sometimes people do repeat themselves when they have dementia. They can get in a loop, and they may ask the same question 10 or 15 or more times a day. We tell that caregiver to remember that every time that person with dementia asked that question, it’s the first time they asked that question. So going back to them and saying, “Don’t you remember?” isn’t going to help. Sometimes your best bet is diverting the topic instead of getting yourself in that loop. Somebody who’s asking the same question over and over again may be worried about something, and learning to pick up on those cues can be really helpful to the caregiver. So keeping it simple, keeping it short, letting people process what you’re saying is going to make a bigger impact, and you’re going to have better success, than you are with a long explanation or some kind of lecture that that person just really has no concept of what you’re talking about. Keeping it simple is your best bet.

Monitor Your Stress Level

Bell: It’s challenging to care for a loved one or be responsible for their care 24/7. Faced with lack of sleep and other stressors in their lives, caregivers may lash out not meaning to.

Boustani: So imagine you are in this spiral, a negative cycle of… you don’t understand the care recipient’s disability, and then you’re stressed out, and things get worse and worse. Keep your eyes on your tone of voice and keep your eyes on your lashing out. If you start screaming, yelling or even touching inappropriately your loved one,  that means your stress is so high. This will be your secret code to say, “You know, I’m burned out. I need to go and seek help.”

Ventresca: Daddy had a urinary tract infection in August, and I did not know what that looked like. He got delirious, and a couple of times he was so out of control that I whacked him on the butt a couple times, and I felt really bad about it, but I was just trying to get him to come back. It scared him. I felt horrible. I just didn’t do that again. Then we figured out what was wrong, went to the hospital, and I realized he was out of his mind. There was nothing I could’ve done. So I learned a big lesson there.

Qualitza: Certainly we have a tendency to lash out at the ones that we are most comfortable with, people that we have comfort with as opposed to strangers. It’s easier for us to take that frustration out on a loved one. Take time to walk away. Take advantage of respite care. That would alleviate somebody depending so much on one another. If you have a situation that you have a caregiver and only the person receiving the care in the household, the person receiving the care is going to be so dependent upon the caregiver, that is going to be additional stress to the person providing the care. 

Lee: Sometimes you just need to just veg in front of a TV and just forget about everything or just clear your mind. Read a book. Do something, take a walk. Do something just to relax and try to get yourself in a better frame of mind. Just keep reminding yourself that they don’t really have control over what it is they’re thinking or doing. They’re like a child again. They don’t know what they’re doing or saying to you, or that it’s hurtful.

What If They Refuse To Cooperate With Your Care?

Austrom: What if the issue is not abuse, but a refusal to cooperate with care? Sometimes the caregiver needs to change the environment, add some organization, some structure or routine to the processs, and that can reduce resistance to care.

Oetjen: Dealing with issues when the care recipient doesn’t want to be compliant can be difficult. I think some of the same strategies that you would employ with your children might work, right? So you try to use a little psychology. If it’s not that important to get a bath right that moment, then maybe you just do the teeth brushing and you let the bath go. If they are refusing food, well, then that’s another issue because then you have to find a way to make, because food is obviously more important than a bath. Make sure it’s food that they like. Don’t try to make them eat broccoli if they don’t like broccoli. At some point it doesn’t matter that they’re eating a balanced meal; it just matters that they’re getting food. So figure out which battle you want to fight on that day and then don’t fight all of them; just fight the one that matters.

Caine: Sometimes your loved ones get frustrated, okay? They don’t like that sense of helplessness. They don’t like to lose their independence, and so some days they may not be in a good mood. They may just be moody, “No, I don’t want to eat this. I don’t want to be bothered today. No, you’re not going to bathe me. No, I’m not going to take my medications.”

Hill: I’ve had to find out what works best for our situation when it’s a difficult day for my mom or my daughter. My mother, being elderly, there are days she doesn’t want to get up at 7 in the morning, and it took me time to understand that. As you get older things are different for you, so I had to learn a day or two of her doing things her way and not complying with any one particular schedule. If I let it go a day or two, it goes okay. Normally, she’s back on task. If it goes longer, it piques some interest, and maybe she has something else going on. Maybe getting sick. We may need to call a doctor and get back-up support. We let her have her way, make sure she gets three meals a day. The first one is late in the day. We let her have her way.

Turo-Shields: Pick your battles. I often say that to clients as well in the caregiving role. Pick your battle. If it doesn’t matter, it doesn’t matter. When at all possible, give them a choice: “What do you want to do?” Because those end-of-life decisions and again those losses, having the caregiver have some sensitivity for one minute you can drive, and the next minute your family member says, “Your keys are gone. I’ve got them.” How powerless that feels where if somebody came into your home today and said, “Oh, this is too much, too many things to dust, so I’m going to take all your pictures and all your knick knacks down.” And recognizing that that’s disrespectful in many cases, especially when caregiving for elderly parents, because they came from a generation truly of “Honor your mother and your father,” for many. We tended to give more respect to the elderly.  This generation not necessarily, we see people as more of peers. So it’s important to be sensitive to that and give them the respect, especially if they’re in their home…the way they want to decorate, the way they want their daily routines to go.

Pellman: With dementia, as that disease progresses, you often will find that people become resistant to some hygiene things, showering in particular. Putting on different clothing is another one. Sometimes those battles between a family member and their loved one can become pretty heated. Again, sometimes another person can do that. We, for instance, have trained caregivers who provide those services at our center. Often you will receive that help from somebody else much more readily than you would your family member. I think one tip is that if you can simplify things as much as possible, that really helps. For instance, we have a lady who will only wear black pants and a red top. So her daughter has gone out and bought five pairs of black pants and five red tops, and she’s happy. She has a change of clothing. She can wear clean clothes, but that pattern that for whatever reason of what she wants to wear every day can be maintained. But she can still wear clean clothes. One idea might be to ask questions in a simple way. Instead of saying, “What would you like to drink with your meal?” you could say, “Would you like coffee, or would you like milk?” That will trigger for somebody with memory impairment the idea that they know what those two things are. If you ask open- ended questions, you’re going to get unsatisfactory answers. And you may perceive that is the person being difficult, when really it’s that you’ve asked something of them that’s too complex for them to process and respond to. Redirecting is another way to effectively deal with people who have memory impairments. People get stuck on certain things, and sometimes you can just change the conversation enough that it will kind of break that pattern or that kind of being stuck on that particular topic. For example, if someone is looking for someone—and we see this all the time—I’m looking for Martha. She should be here. Where’s Martha? Where’s my wife?  And then you can say, “Oh, tell me about Martha. You must really love Martha. Tell me about how you met. Tell me about your family,” and then that changes the subject.

Saxman: But sometimes you have to think about how important is this? Do they need a bath every day? Maybe not. So that may be a challenge that you can reduce and not fight over so much. Meds are a very different thing because I think maintaining good med management is really important. Sometimes you have to ask the pharmacist, okay. Or go back to the physician, If my loved one’s on 15 meds, do they really need to be on 15 meds or can we reduce this and make it more palatable to this person? Can we do medications in a form that’s going to be better received? Can I hide them in apple sauce? Can I give them in a liquid form? Can we do something a little more creative that’s going to make those medications more palatable? But you also kind of have to sit back and say, “What fights do I really need to fight? Is it worth it?” Because it may not be, and you may want to simplify some of those kinds of things.

Hill: With my daughter, we’re a little more restrictive, because she has such a heavy medical restrictions. We almost take the same approach, if she’s just having a day…everyone deserves a day to have a time when they feel like they are in control of their own situation. Have to realize, you’re dealing with humans who have feelings and desires, and you have to let them feel like they are their own person. She’s childlike in her thinking. What’s Andrea’s real ability to comprehend what we’re trying to show her? She’s a creature of habit, and it has to be regiment. It may take a few months for her to understand brushing your teeth is a daily part of your hygiene.

Duncans: One frustration we did have with him—and he was doing it constantly this summer—where he would, he likes to pull himself up to stand at the couch. And he’ll kind of slide back so he’s arched. He’ll occlude his airway, and he’ll pass out. Just pass out. And a lot of times, he would have seizures when he came to. So we were having seizure issues. That was the only time I’ve actually ever spanked him, when he starts doing that. So it’s one of those things you feel bad about spanking your special-needs kid. He doesn’t really understand. He was enjoying the way that felt for some reason. He’d do it repeatedly and it’s like…When he says repeatedly, like that, literally repeatedly. You could not literally walk in the kitchen and do dishes at the sink with him right here. So now he’s seems…you have to watch him cause he’ll just stand up. Sometimes he’ll get to doing it, and I’ll just yell his name. And then he’ll be, “Oh, I can’t do that.” It was a strange thing. He for some reason took pleasure from that feeling. So we’ve had to redirect that behavior.

Financial Exploitation Can Happen to People of All Means

Bell: The caregiver may often be the only person a senior sees on a regular basis, and that makes them more vulnerable for both physical and financial abuse. What we’re learning is that financial abuse can happen to people of all means.

Saxman: Abuse can take many forms. When we see dementia patients, sometimes it’s financial exploitation. The family may not recognize that this person is not really managing their finances very well anymore, and so they could be scammed. People with even early stage dementia are a big risk of being scammed out of money, so paying attention to that.

Bennett: Unfortunately the instances of financial exploitation are growing. Perhaps it’s a result of a bad economy; perhaps it’s a result of stagnant wages over the past 40 years. You have a lot of children, nephews, nieces, grandchildren, others who have a sense of entitlement to mom or dad’s assets or income streams. And so certainly within families, certainly with folks who have lots of money, lots of assets, the potential for exploitation is quite high. Probably the most fascinating thing that I’ve learned in this area of law is that financial exploitation is also becoming quite prevalent in instances where folks may not have a lot of money, but they have a steady income stream. In poor communities in particular, if you have an elder who’s over 65 and they’re receiving their Social Security, oftentimes that Social Security income stream is the only income stream coming into the household, which may have several adult children and may have grandchildren there as well. We’ve seen a lot of instances where elders are really neglected. I call it a benign neglect because the family just doesn’t want to go that step of putting mom into the nursing home or into assisted living facility, even if by any reasonable measure, it’s the best thing for mom. Most elders if you talk to them would want to be back at home with their children, all of which is great and has to be factored in. But again, there’s a motivation sometimes that creeps in that says, “You know what, we need mom’s income. We need the pension check. We need the Social Security check to pay our cell phone bills, and to pay our gas, and to pay the rent for the apartment we’re all sharing. If mom goes to some facility, we’re not going to have that anymore.”

Lewis: I had a client one time who had really supported her son all her life. The other family members were aware of that, and they rolled their eyes, you know, when he was younger and irresponsible. But that pattern continued into his adult life. He did move out of the home, got married, got divorced. And guess what? He moved back home with mom when she was an older adult. He was pretty much living on her social security income with her. He did not have any income of his own. He had a free stay in the home; he did not contribute at all. That is effectively exploitation. But it was something that she allowed and she still had capacity. When she became incapacitated, that’s when it became an issue, because she was not getting the care that she needed, because he was using her funds, and she did not have the means to support herself adequately. It became a huge issue then for the family, who then sought legal counsel.

Oetjen: Ways to be alert for financial abuse:  There would be two components of financial abuse. One would be someone from the outside getting a hold of the care recipient’s identification. So one of the things that you can do for that is, you can put a credit freeze on their account. The second thing is that you can check their credit reports, and that’s available free through the federal government at annualcreditreport.com. You can look at those reports once a year for free to make sure that no one has opened any credit in their name.

Qualitza: Some red flags there to look for…maybe perhaps you have had impeccable credit, and now you are being denied credit. Or you have received credit card statements or bank statements for things that you have not solicited for. Maybe you perhaps have never had a credit card, and now you’re receiving the monthly statements. Those certainly are things to look for. As far as exploitation, we get a lot of those cases, and that is as a result of the caregiver or whomever, the person is doing unauthorized withdrawals from that person’s account, usually to benefit themselves. It’s not uncommon for the person that is receiving care to give a debit card or their credit card to the caregiver or whomever is running that errand for them, because oftentimes they are homebound. They can’t get out to do the things that they are needing, such as groceries, Depends, Ensure, whatever the thing is that they are needing, they trust that person to go do that on their behalf. And oftentimes that person will, “Oh well, I’ll get something for myself,” or not have that authority to make the withdrawals in which they have made.

Oetjen: But things that we suggest so that there cannot be any suggestion of financial abuse is that we would ask them to have separate accounts, so an account for you. Don’t mix up your care recipient’s money in yours. If you are a power of attorney, you still are responsible to make sure that that money is used for that person, so don’t go out and buy yourself a new television or yourself a vacation with their money. It’s best to keep receipts, and make sure that you’re keeping all of that separate.

Lewis: If you have an older, endangered adult, then it is your duty, if you see neglect, if you see abuse, whether it’s physical or emotional, or if you see financial exploitation, to consider filing a report with the Adult Protective Services Agency.

Austrom: There are Adult Protective Services offices throughout our state. When in doubt, make that call.

Bell: In our next and final video of this series, we’ll be talking about other resources that are available to you, that may help you with the many challenges you face being a caregiver for a loved one. We’ll see you next time.

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• What is your favorite pet?

• What was most meaningful to you in this video?
• Do you often find yourself frustrated or angry with your loved one?
• Have you been the recipient of abuse from your loved one?
• Several experts in the video said, ” Pick your battles.”  What is a battle you are fighting that you can let go?
• Has your loved one been the victim of financial exploitation by family, friends or strangers?
• What safeguards can you put in place to address this?
• Review the Caregiver Weekly Check Up