Updated: Jul 15, 2019
Over the next few weeks, we are going to look at the serious issue of caregiver fatigue associated with providing services to those with Alzheimer's and other forms of dementia. This will include looking at the prevalence of the issue, the damage caused by stress, the genesis of stress, how to identify when problems are present and much more. At the end of this series, we will make available free workbook from Connelly Law Offices with ways to address the stresses of care-giving. We hope you find this series of blogs helpful.
Candace began to see the signs in her widower father shortly after he turned 65. Wandering around the room looking for things that did not exist, repeatedly picking up the pillows on the couch and putting them down. There appeared no purpose for the behavior and she would jokingly confront her father about it, causing him to walk away laughing, only to return a few minutes later. She knew something was not right.
Then came the memory issues. First, forgetting things that they discussed just a few hours earlier, leaving the refrigerator door open and putting out the trash on the wrong days. They were little things, but a whole lot of them that were adding up and concerning Candace.
When she brought her concerns back to other family members, they dismissed her, stating that she was “looking for trouble” or stating, “he’s old, what do you expect”. Rather than create problems within the family, she kept quiet and even began to question her own sanity around the situation.
In early spring, she received a call from the bank regarding strange activity with his checking account. When she went to the bank, they showed her checks written to utility companies multiple times in the same month, deposits that were not made and frequent requests for a new ATM card because he kept losing them. But it was the checks that scared Candace.
“He had written the year 1995 on all the checks,” she said. “Although he had the month and day right, he was years behind. I knew we had a problem. When I asked him about it, he laughed so I pushed him to tell me what year it was and he couldn't. I remember that day vividly. I fell to the floor crying while he looked at me puzzled. It was then I knew."
“Candace called me about help managing her father’s money and other financial affairs, but it was heartrendingly apparent that their was something else happening here, something that she needed to address but danced around the issue,” said Attorney RJ Connelly III.
“When we met, she used every rationalization she could think of to account for Dad’s behaviors, but the one word she refused to say was dementia,” continued Connelly. “And when I said it, you could see the walls come crashing down. She needed someone else to say it…but she knew what was happening.”
After that, Connelly had a long talk with Candace and explained what was occurring with her father and made some suggestions.
“Many people seem to think that dementia follows a specific pattern, but it does not. They are surprised to find out that dementia is as individual as snowflakes, and the symptoms that present vary wildly from person to person,” stated Connelly.
“What I suggested to her and to all families facing this horrible diagnosis is this, address the things you can control right now, like powers of attorney, guardianship's, fiduciary matters and Medicaid planning, because the future of his symptoms and behaviors are unpredictable. Control what you can now so you have the time in the future to deal with the crisis.”
Attorney Connelly referred her to some other organizations that could help with her father's dementia, but there was more on her mind. Candace told Connelly that her problems were much bigger than just her father's dementia. She was scared to death about how her family would see her action of going for help and the backlash that she would probably be in for.
"When I told my siblings what I had done, they immediately started yelling and accusing me of looking for 'drama' and not seeing the truth. They told me that his problem was that he missed Mom. Then they said that my actions were causing him stress and probably the reason he was acting this way, I was furious!" said Candace. "But even with all the accusations, no one came by to see him or help me. No one."
As time went by, Candace began to exhibit her own signs of stress. She would call the office and speak with staff and asking for referrals to counseling, which were provided. But she found solace in speaking to member's of RJ’s office, disclosing her concerns about her Dad.
“Where is my family,” she would ask rhetorically. “I’m at Dad’s seven days a week and I’m lucky if I see one of my siblings once a month -- and only if they want something! They don’t see his mental decline or physical struggles. He’s not eating and losing weight and yet when they see him and the shape he is in, they actually blame me for not taking care of him! I’m there every day!”
Candace was frustrated and stressed beyond what she thought she could be. She lived ten miles away from her Dad, worked a full time job and had two children. It was beginning to weigh her down and affect her relationship with her husband.
“I would wash his clothes, make him food, lay out his medication, clean his bathroom – it was a chore but I loved him. And when I would feel tired and angry, I would feel so much guilt, I actually ended up doing more hoping to alleviate that feeling, but it just kept growing. So I decided to do what my counselor told me to do, ask my siblings to help and offer to put together a schedule. I called them up but no one returned my call. No one!”
Then came a suggestion from her brother.
"Quit your job, he said. Your husband makes enough money," Candace said angrily. "That was the last straw."
“She called me and it was obvious she had reached wit’s end,” said Connelly. “I remember her words about her brother, ‘what is he, crazy? Is he going to pay my salary so my family can live?’”
Eventually Candace moved Dad in with her and her family. They all took turns helping him and making him comfortable. Even with this, other family members would make remarks about her and one went so far as to question where her father’s social security was “being spent”.
“Eventually, we helped her get Dad into care and put his affairs in order,” said Connelly. “Candace, her husband and her kids went above and beyond in taking care of her Dad and the stress they endured was unbelievable, including the unnecessary burden of allegations from other family members.”
Soon after being admitted into a nursing home, Candace’s father died.
“Without having a support system in place and RJ’s reassurances and help, I’m not sure I could have held up,” said Candace. “But I know this much, I will breathe my last breath with the confidence knowing that I did the best job I could have done in taking care of Dad.”
“Loving him, protecting him, getting him the best medical and legal help, and treating him with the dignity and respect he deserved right to the end. If he could talk to me, I know he would be proud of the job we did for him!”
Candace’s story is not that all unique from that of other caregivers. A sick senior, a lone caregiver and a family in denial. A certain recipe for burnout and perhaps even the destruction of a once loving and caring family unit. The reasons for these behaviors are many and we will discus them over the coming weeks, but first, just how prevalent is the problem of caregiver stress? The numbers may surprise you.
More than 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months [AARP]
About 34.2 million Americans of that group have provided unpaid care to an adult age 50 or older in the last 12 months [AARP]
The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults [NAC and AARP]
Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans [Coughlin, J. (2010)]
About 15.7 million adult family caregivers care for someone who has Alzheimer's disease or other dementia. [Alzheimer's Association]
And think about what Candace's brother said to her about quitting her job. Yes, gender continues to play a role in who is the caregiver. Check out the numbers.
65% of care recipients are female, with an average age of 69.4. The younger the care recipient, the more likely the recipient is to be male. 45% of recipients aged 18-45 are male, while 33% of recipients aged 50 or higher are male. [NAC and AARP]
Upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. [Institute on Aging]
Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one's personal care. About 14.5 million caregivers are males out of the 43.4% who care for an older family member. [NAC and AARP]
Age is also a factor in caregiving with the average age being near 50. Imagine, this is the time that many are seeing their children off to college and have some "breathing room", yet, they must again step into a caregiving role. here is the distribution of caregiver age:
Average age: 49.2 years old
48% of caregivers are 18-49 years old
34% of caregivers are 65+ years old [NAC and AARP]
What hours are spent providing this care?
Family caregivers spend an average of 24.4 hours per week providing care. Nearly 1 in 4 caregivers spends 41 hours or more per week providing care. [NAC and AARP]
Family caregivers who reside with those they provide care for spend 40.5 hours per week caring for this person [NAV and AARP]
Those caring for a spouse/partner spend 44.6 hours per week performing caregiving tasks. Those caring for a child under age 18 spend 29.7 hours per week performing caregiving tasks [NAC and AARP]
Older caregivers who are 75+ years old provide 34 hours in an average week on caregiving. Middle aged caregivers report spending 21.7 hours per week on caregiving tasks [NAC and AARP]
Finally, what about relationship to the individual receiving care? A vast majority of caregivers (85%) care for a relative or other loved one;
42% care for a parent (31% for a mother, 11% for a father);15% care for a friend, neighbor or another non-relative;14 % care for a child;7% care for a parent-in-law; 7% care for a grandparent or grandparent-in-law [NAC and AARP]
Parent care continues to be the primary caregiving situation for mid-life caregivers with 70% of the caregivers between the ages of 50 and 64 [Wagner, D. & Takagi, E.]
Most care recipients reside in their own home (48%), and one in three (35%) reside in their caregiver's home. 3 in 10 care recipients who are not in assisted-living or skilled nursing facilities reside alone (31%).
Clearly, based on the above information, providing care for a loved one with Alzheimer’s or other forms of dementia is indeed a massive undertaking, one that is often thankless and can eventually become overwhelming. Feeling high levels of frustration are a part of everyday life when caring for someone with dementia and it must be viewed as a normal and valid response. However, when those feelings reach a point of extreme frustration and even anger, there may be serious consequences for both the caregiver and the person being cared for.
Let's discuss stress.
Stress has certainly become a regular part of everyday life, from raising kids to job performance, we accept it and adapt to it. Part of that adaptive process comes when we receive our paycheck and a thanks from our boss for a job well done or with our children, a hug and an “I Love You” at the end of the day. This "payback" helps us deal with this stress.
But, such reinforcement does not come from a person with dementia. Without some payback, the levels of stress and frustration begin to mount. Add to this an adversarial family and in Candace's case, a family that is presenting direct opposition to everything she does and stress will become overwhelming.
Eventually, it begins to effect a person’s physical health and emotional well-being, resulting in verbal acting out and in some cases, physical aggression. There are ways to cope but it takes work and an understanding that many times, it is our thought processes that exacerbate that stress and how we response to it.
There are a few things to understand about this problem, we all want to control things around us. It’s not a sickness to want control, within normal limits of course, because when we control things it keeps us safe. But is control real or is it an illusion? In reality, what do we really control? Our thoughts? Our actions? Our children?
If I ask you not to think about an elephant, what are you thinking about? An elephant right? So in a fraction of a second, I opened the door to your brain and walked right in. Just like that, you are no longer in total control of your thoughts. So you see, control is really just an illusion --- and accepting that reality is the beginning of learning how to deal with stress.
Frustration is the result of trying to control the uncontrollable, change the unchangeable. One of the first things to do is figure out what is and is not within your ability to change. When caring for someone with dementia, those normal daily activities from feeding to bathing can become deep sources of resentment, leading to frustration and eventual burnout.
You cannot change the behavior of anyone else much less that of someone with dementia. So the best you can do in these circumstances is learn how to respond to those things that are uncontrollable. By the way, you notice I said respond, not react. The difference? Let’s look at them.
Although they may seem to be the same at first glance, they are really two very different ways to deal with a problem. When we react to something, our action is instantaneous. These actions are based on beliefs, biases and prejudices of our unconscious mind. It is something we do without thinking as those things that we believe, true or not, determine the outcome.
A reaction does not take into consideration all the facts of the situation, instead it is based on the survival instinct. And the worst thing is, the long-term effects of the reaction are not taken into consideration. Bridges are burned and taking back what was said or done may not be possible.
A response, however, is much more measured. It’s based on facts that are evaluated using both the conscious and unconscious mind. It’s not a survival reaction because you take into consideration the well being of all concerned, not just yourself. And the long-term outcomes are considered in line with your core values.
Responses are always the better choice, and sometimes just taking a breath can make the difference between a positive outcome and something you may regret later. We will discuss more about this in the coming weeks.
But stress doesn't come all at once. Stress starts with little things, and one by one, those things begin to weigh upon use. Stress is a combination of events, our actions, our perceptions and our belief systems. When we do not or we refuse to look at these things and provide service to them, we crash and burn, sometimes from what seems like a minor event. But it wasn't that event that caused the crash but the combination of all that weighs upon us.
What if I told you that a rubber band could cause a watermelon to explode? One, little tiny rubber band, wrapped around a twenty pound fruit, with a one inch rind and tough outer skin, literally bursting because of the little rubber band? Watch this video.
But, it wasn't just one, it was the constant buildup of pressure that caused this to happen. One after an other after an other. This is how stress works and without a way to diffuse this pressure, it only takes that final band to create the chaos.
How does stress manifest itself in a caretaker? The ways are many and, not the same for everyone.
Stress on us day after day can lead to a clinical diagnosis of depression if alternate ways of dealing with the caregiver role is not found and developed. It is the most common complaint from a caregiver and does need attention. Although you won't figuratively burst like the watermelon, inside, you will feel like you are exploding. Depression just seems to break a person's spirits. And remember our statistics on how many women are in the caregiver role? According to research, middle aged women who provided 36 hours or more a week of care to a spouse were 6 times more likely to suffer mental health consequences than their non-caregiving counterparts and those caring for a parent were twice as likely to experience a mental health issue.
Anxiety and depression are very closely related and in fact one may exist as a result of the other. Anxiety includes feelings of worry, unease, nervousness and concerns about the future. Remember what Candace did? She became so anxious about others judging her that she put even more hours in an attempt to alleviate her anxiety around that belief but sadly, it only made things worse.
Denying the Truth
This is one of the stages of grief and a stage of accepting that someone you love has dementia. It is also a stage of caregiver stress. The constant need to prove that "I can do it" or "I'm fine" all the while another rubber band is being added to that watermelon. This can be exacerbated by previous life experiences as well, which we will talk about in the coming weeks.
Just Leave Me Alone
When the day is over, the caregiver is tired, moody, exhausted, frustrated and feeling unappreciated. Day after day of feeling like this exacts a toll on the spirit. Soon, there are physical problems that occur and others within your orbit begin to feel your pain as well. Your loved ones are snapped at, told to go away and they do not get any quality time.
Years ago, a behavioral psychologist named Martin Seligman conducted an experiment with dogs where he electrified a portion of the floor of a cage. In brief, the dogs would receive an electric shock and would move to another area where no electricity was present. After many moves, Seligman electrified the entire floor. No matter where the dog went, it received a shock, so it just laid down. Then, when the animal had a chance to moved to an area where there was no electricity, it just gave up and accepted the inevitable.
He named this "learned helplessness". Even when opportunities to escape are presented, this learned helplessness will prevent any action. Although this concept is tied to animal psychology, it can also be tied to humans.
For example, a person who feels the symptoms of stress in the caregiver role may eventually come to believe that no matter what he/she does, nothing will ever help them deal with the stress they experience. The sense that the symptoms are out of their direct control may lead them to stop trying to help themselves solve the problem and they see no way out, thus making their stress even more pronounced and the consequences even more dire.
This does not happen in every case and it does seem that some people are more prone to learning to be helpless than others, something we will explore later.
Withdrawal from Society
This is something that can be seen by loved ones and friends. When someone stops going to the gym, watching a favorite television show or even posting on social media, a problem may be present. On the flip side of this, friends and loved ones may stop interacting with the person because of their behavior further isolating them and sending them into a spiral of decline. In many cases, it's a no win situation.
Researchers say the 1 in 3 caregivers who provide help for others are in need of care themselves. Nearly one quarter of women suffer health problems and they are twice as likely as the non-caregiver counterparts to suffer from heart disease.
With the consequences we just discussed, it's imperative that we make identifying stress in caregivers a priority and helping them adapt to their role.
Personality and Caregiving
Why Some Caregivers Are More Affected By Stress
Don Drake oversees Connelly Law's Community Education Programming. He is a retired licensed clinician in the Commonwealth of Massachusetts with over three decades of experience working with older adults diagnosed with HIV/AIDS, substance abuse disorders, chronic homeless and mental illness. Prior to his retirement, he was the director of a unique treatment program for older adults with histories of mental illness, cognitive disabilities, and addiction at Shattuck Hospital in Boston. He was also a director at Steppingstone, Inc. in Fall River, Massachusetts where he was the clinical trainer, program and curriculum developer for the agency and oversaw treatment programming for older adults. He has over 40 years of human service and law enforcement experience and has worked as an administrator at programs in Boston, Hartford, Providence and Philadelphia, helping to structure, hire and train staff in providing behavioral and addictions treatments to adolescent and adult clients. Drake also worked as a trainer for the Massachusetts Department of Public Health presenting training on QPR, a suicide prevention curriculum for lay people, the Massachusetts Council for Problem Gambling and the Crisis Prevention Institute, an international training organization that specializes in the safe management of disruptive and assaultive behaviors. He is also a retired professional wrestler who is in the New England Professional Wrestling Hall of Fame. Drake can be reached at Connelly Law Offices, Ltd. at firstname.lastname@example.org