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Caring for the Caregivers - "An Overview" Part 1

Over the next few weeks, we are going to repeat our blog series looking at the genuine 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 more. Let's start by looking at a southern New Englander's experience.

Caregiver stress - a real and serious issue

Candace's Story

Candace began to see the signs in her widower father shortly after he turned sixty-eight. 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 and begin the activity again. 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 trivial things, but a whole lot of them 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 “he’s old, what do you expect." Rather than creating problems within the family, she kept quiet and even began to question her own sanity around the situation, asking herself if she was the only one seeing this.


That 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.


It's hard to accept that a parent has dementia

“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 angrily left the room. I remember that day vividly. I fell to the floor crying when he returned looking 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 there was something else happening here, something that she needed to address but danced around the issue,” said certified elder law 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 Attorney Connelly. “And when I said it, you could see the walls come crashing down. She needed someone else to speak that word aloud…but she knew what was happening.”

"When we met, she used every rationalization she could think of to account for Dad's behaviors, but refused to say it was dementia...and when I said it, you could see the walls come crashing down..." --- Attorney RJ Connelly III

“Many people 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 varies wildly from person to person,” stated Attorney Connelly.


“What I suggested to her and to all families facing this horrible diagnosis is this, address the things you can right now, like powers of attorney, fiduciary matters, and Medicaid planning, because the future of the symptoms and behaviors are unpredictable and by doing this now, it gives you more time to deal with any future crisis that occurs. But even more important, do it while he can still have a say in his own future care planning.”

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 be in for.

"... address the things you can right now, like powers of attorney, fiduciary matters and Medicaid planning...but even more important, do it while he can still have a say in his own future care planning." --- Attorney RJ Connelly III

"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 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, speak with staff, and ask for referrals to counseling, which were provided. But she found solace in speaking to members of RJ’s office, disclosing her concerns about her father.


“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 or to be critical of me! 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 father, worked a full-time job, and had two children. It was beginning to weigh her down and affect her relationship with her husband.

"And when I felt tired and angry, I would feel so much guilt. I ended up doing even more, hoping to alleviate that feeling, but it just kept growing...I called [my siblings], but no one returned my call." --- Candace

“I would wash Dad's clothes, make him food, layout his medication, clean his bathroom – it was a chore, but I loved him. And when I felt tired and angry, I would feel so much guilt, I 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 once again, no one returned my call. Not one of them!”


Then came this 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 Attorney Connelly. “I remember her words about her brother, ‘what is he, crazy? Is he going to pay my salary so my family and I 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 as far as to question where her father’s social security was “being spent”.

"Candace, her husband, and her children went above and beyond in providing care for her father, and the stress they endured was unbelievable, including the unnecessary burden of allegations from other family members." --- Attorney RJ Connelly III

“Eventually, we helped her get father into care and put his affairs in order,” said Connelly. “Candace, her husband, and her children went above and beyond in providing care for her father, and the stress they endured was unbelievable, including the unnecessary burden of allegations from other family members.”


Less than a year 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 of his life. If he could talk to me, I know he would be proud of the job we all did for him!”


An All-Too-Common Story

Candace’s story is not that unique from that of many other caregivers. A sick senior, a lone caregiver, and a family in denial. A certain recipe for burnout and even the destruction of a once loving and caring family unit. The reasons for these behaviors are many and we will discuss them over the next few weeks, but first, a look at some numbers that will help put the issue of caregiver stress into some perspective.

  • 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 two 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 dementias. [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 for family members.

  • Sixty-five percent 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. Forty-five percent of recipients aged 18-45 are male, while 33% of recipients aged fifty or higher are male. [NAC and AARP]

  • Upwards of 75% of all caregivers are female who 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. Sixteen percent of male caregivers help with bathing versus 30% of females. Forty percent 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 caregiver's age being near fifty. Imagine, this is the time that many are seeing their children off to college and finally have some "breathing room", yet again they are forced to step into a caregiving role. Here is the distribution of caregiver age:

  • Average age: 49.2 years old

  • Forty-eight percent of caregivers are 18-49 years old

  • Thirty-four percent 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 spend 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 the relationship to the individual receiving care? A vast majority of caregivers (85%) care for a relative or other loved one.

  • Forty-two percent 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%).

Based on the statistics above, you can see that 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 lead to a mental and physical illness. Feeling elevated 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 or even anger, there may be profound consequences for both the caregiver and the person being cared for.


Stress and Caregivers

Stress has certainly become a regular part of everyday life, from raising kids to job performance to the pandemic and the economy, we accept it and adapt to it. Part of that adaptive process comes when we receive our paycheck and 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 as there is some concrete immediate gratification involved.

Caregiver stress can result in mental and physical illness

But such gratification 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 can and will become overwhelming.


Eventually, it begins to affect 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 react to them, and not necessarily the actions of others.


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 the sense of control real or is it an illusion? In reality, what do we really control? Our thoughts? Our actions? Our children?

For instance, what if you are asked not to think about an elephant, what are you thinking about? So, in a fraction of a second, the suggestion of what not to think about 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 this 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. What do you need help with? What triggers these feelings for you?


React or Respond?

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 we said to respond, not react. The difference? Let’s look at them.

Connelly Law.  Dementia training.
React or Respond? Which has better outcomes?

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 that results in an action that is fueled by emotions. 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 reaction does not take into consideration all the facts of the situation, instead, it is based on the survival instinct...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 minds. 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 in the coming weeks.


The Watermelon

But burnout doesn't come all at once. Stress starts with little things, and one by one, those things begin to weigh upon us. Stress is a combination of events that can influence our actions as a result of 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, with a reaction that seems horribly out of context to the event that just occurred. But remember, it wasn't that event that caused the crash but the combination of all that weighs upon us.


The best example of this is in the video below. Here's the question, could a rubber band cause a twenty-pound fruit with a one-inch-thick rind and a tough outer skin to burst like a bomb? Common sense would tell us that such an outcome from one rubber band is not likely to cause this to happen.


But watch what happens when we add many small rubber bands, and one by one, the pressure increases on the watermelon. Then comes the final small rubber band and the fruit bursts. This is how stress works and without a way to diffuse this pressure, it only takes that final small rubber band (or event) to create chaos.

The Effect on Mental Health

Not everyone responds to stress in the same way, which is why it is so difficult to predict how stress will affect the individual. Some are naturally wired to be more sensitive and reactive to stress as a result of inborn personality traits. Upbringing and environmental factors can cause some to be very resilient in their response to stress while others become threatened and unable to cope.


Certainly, we can't change who we are in most cases, but we can become aware of our predispositions and learn to work around them by building up skills that can compensate for those sensitivities or become aware of our triggers so we can structure our lives around those things that could prove to be upsetting to us.


Depression

Stress on us day after day can lead to a clinical diagnosis of depression if alternate ways of dealing with the caregiver role are not found and practiced. It is the most common complaint from a caregiver and does need attention. Obviously, you won't figuratively burst like the watermelon, but 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 six 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.

When will the burst occur?

Anxiety

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. An ongoing need to prove that "I can do it" or "I'm fine" all the while another figurative 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, a feeling like this takes 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 with you. Soon you're ignored, you feel isolated. Nothing you do feels right, and you want to give up.

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 lay down. Then, when the animal had a chance to move 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 aimed at helping yourself. 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 feelings they have are out of their direct control and may lead them to stop trying to help themselves solve the problem or they see no way out, thus making their stress even more pronounced and the consequences even direr. 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 in our next blog.

NEXT WEEK - Part 2 Where Does Your Stress Come From?



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