The struggle is real. Join any Facebook or Reddit group dedicated to assisting elderly parents, and you will have a newfound respect for what caregivers are dealing with. I had a small idea of the challenges involved after taking care of my grandmother who has Alzheimer’s. But I had no idea of how bad it could really be. The experiences can be extremely dark and painful to even read. The situation is especially difficult when the elderly parent is resistant to receiving help, or even endangers himself or herself. Another difficulty can be the result of uncooperative or unhelpful family members who leave the bulk of the caregiving to a single family member. Now pile on the fact that family caregivers often work secularly and may have their own children to take care of as well. In some cases, there’s a financial crunch because the caregiver misses work and is lacking needed income. It’s not an understatement to say that some family caregivers feel like they simply can’t go on.
The Hurt Goes Beyond Just the Caregiver
All of this tells us we need to curb caregiver burnout as much as possible for the sake of the caregiver. But there’s another reason we need to pay attention to caregiver burnout: Caregiver burn out hurts the patient or family member receiving care too. In fact, according to a study cited in the 2020 Alzheimer’s Disease Facts and Figures report, “…distress on the part of family caregivers is associated with increased odds of institutionalization of the person with dementia, exacerbated behavioral and psychological challenges in the person with dementia, and increased likelihood of people with dementia being abused”. The study referenced can be found here.
What Kind of Caregivers Are We Discussing?
This study was not directed towards all caregivers but rather, “informal” caregivers since it was noted that “informal care giving is a cornerstone of dementia care, and distress related to this role (informal caregiver) is associated with worsening of several dementia care recipient health outcomes.”
What is an informal caregiver? Simply put, regular people like family and friends who are not professional caregivers.
Are we saying that the burden of care giving can cause an family caregiver to react in such a way that increases the likelihood the patient will develop further psychological challenges? Yes, it is certainly possible.
Are we saying that the burden of care giving can cause an family caregiver to react in such a way that increases the likelihood the patient will develop further psychological challenges? Yes, it is certainly possible. In addition to the study cited, we can look at the fact that one major contributor to Mild Cognitive Impairment (a common precursor to Alzheimer’s Disease) is stress.
A Vicious Cycle
As you likely realize, this can become a vicious cycle. An exhausted family caregiver is trying to help an aged loved one take better care of himself or herself. The aged loved one resists this help, either because they don’t understand or don’t want to cooperate. The already overwhelmed caregiver reacts angrily, perhaps lashing out verbally and/or even physically (as the study sadly indicated can happen). This hostile atmosphere adds stress to the patient thereby increasing the chances of psychological challenges. These psychological challenges further compromise the patient’s cooperation and understanding of what is happening around them. This, in turn, adds to the stress of the already burdened caregiver. Do you see the cycle developing?
My Own Experience
I saw a small example of this recently while taking care of my grandmother. Since she is beginning to show more signs of Alzheimer’s, she is beginning to confuse or in some cases make up memories of events that didn’t actually happen. She recently told me something extremely derogatory about a family friend. When I told her it was not true, she insisted that it was. I should have simply stopped the conversation…but I didn’t. I was so upset over the comment that I argued with her for several minutes.
In retrospect, I accomplished nothing by arguing with her. It certainly contributed to a strained relationship for a time. I didn’t change her mind. And I really feel like this stressful event set her back both emotionally and mentally. So what can we learn from all of this?
What’s the takeaway at this point?
- There needs to be more discussion about caregiver burnout and its impact on patients.
- Informal caregivers need to modestly admit that we are not professionals.
- Informal caregivers need to carefully consider the effects our reactions have on our loved ones. Becoming angry solves little or nothing. And it can be very harmful.
- Informal and professional caregivers alike all need support, encouragement, and self-care.
A Difficult Subject to Discuss
This is a difficult subject to broach. Burdened caregivers will get no relief or encouragement learning that our reactions may be harming our aged loved ones. But if we truly love them, then we will do everything in our power not to add to their stress. That might mean enlisting the care of a professional in addition to (or possibly instead of) our sole care.
This site is AgingSafelyAtHome.com. As you can see, I am not “anti-nursing home”. In some cases, the best care for a loved one is professional care supported by the loving efforts of family and friends. This care may be administered within the patient’s home, or it may need to be administered at an outside facility for the safety of the individual.