Sometimes our loved ones protest in such a way to show they are still in control, still grasping for independence. Other times our loved ones experience pain which makes them feel helpless, so accepting care creates a reality of hopelessness. As caregivers, we step in to better the situation and provide them with a sense of relief. When we do things against their wishes, even when it is from a place of concern for their well-being, they might feel violated. That type of response is not what we intended but is typical when dealing with a loved one experiencing Anosognosia or dementia.
Anosognosia is also known as "lack of insight." This condition is a symptom of severe mental illness experienced by some that impair their ability to understand and perceive their illness or physical limitations. This condition is the most significant reason people with schizophrenia or bipolar disorder refuse medications or do not seek treatment. Mom occasionally had moments of what her caregivers called stubbornness, denial, or resistance. In reality, it was another lapse in mind to perceived consequences. I used to see it as a loss of will to live or her suicidal tendency. The more she refused medication, the more we were challenged to convince or even trick her into taking her medication.
So, where do we draw the line between caring and not caring? We have to walk a delicate line because the outside world is not familiar with what living with dementia becomes. When we stop caring emotionally as a defensive response or providing care in expectation of their refusal, we might be questioned about senior neglect or insensitivity. No matter how many times I try to remind myself of how I would feel if I was in Mom's position, I still feel like a failure from time to time when she refuses my care.
Caregivers who fear failure tend to avoid making decisions and procrastinate when starting their caregiving to-do lists. Over time, this avoidance can create resentment towards our loved ones. My siblings and I shared the burden in our earlier years of caring as a family even though we had mixed opinions of what Mom needed. Later as the decisions became more difficult to make, the arguing became a barrier to meeting Mom's needs timely or peacefully.
As time passed, Mom began to resist assistance for showering, changing clothes, and refusing medications regularly. Mom's talk of dying and questioning prolonging the inevitable added to my feelings of failure. Still, in caregiver mode, I attempted to redirect the conversation to be pleasant reminders of what life still has to offer. She just had to help me – help her. As she refused the friendly conversation, I fought my childhood triggers with a resentful response.
"You're never happy with you're blessings. What about me? Am I not worth living for anymore?"
The more Mom refused, the more I began to feel like a failure because my words of encouragement seemed to aggravate her more often. The battle of wills has become a struggle beyond my expectations. I know what she needs to alleviate pain in her lower abdominal area due to constipation, but she does not think she needs water, exercise, or a hot shower. There under the surface, was the answer to my struggles. An emotional boomerang, which I learned earlier in this caregiving journey, came back to me.
This part of the journey is not about me. Mom has lived an extraordinary life and managed her bipolar disorder to the best of her abilities. She has come to terms with what she can no longer do without assistance in her declining status. Life, as she remembers, is not what she is living. So when she begins to protest or refuse, I have to find peace with her decision to let go. I have to start letting go.
I have not failed her, even though that is what my inner critic wants me to believe. I cannot make her want to live any more than I can make her drink a glass of water. Mom may not understand the consequences of her actions, so we must pivot to maintain a safe environment and keep her in as little pain as possible.
One afternoon, Mom said she felt like she was in prison. Of course, I tried to respond by sprucing up her environment, providing desserts that she has always loved, and bringing her new books to read or word puzzles to complete. I did not understand that her prison expression had nothing to do with her surroundings and everything to do with her body. Mom not wanting to exercise was her logical response to limiting pain through movement. I tried to get Mom out of bed because I knew how the activity could help her. We reached a stage to agree to disagree.
There is no failure on my part as a caregiver. There is another opportunity to learn a lesson of compassion by knowing when to stop pushing. The moment I stop trying, the dreaded "what-if" scenarios begin to play in my mind again.
"What if I could have done more or found a different approach, she could have…." Fill in the blank with any possible outcome. Either way, there are some factors I can control to prevent bad results, but most of them I cannot control. Most of them are part of this journey, so I must learn to be still once again. I realized that lowering my expectations meant accepting where Mom is in her journey, mentally and at heart.
Deep down, I know I have not failed Mom. Every day that I am faced with a moment of feeling like a failure is because my expectations have not been met. Mom's love has never run out for me, even though it is expressed differently now. Learning when to redirect a conversation with Mom to diffuse a fight or flight moment works on my psyche as well. Each time I feel like a failure, I remind myself that I cannot stop the journey. No matter what material item I can produce in hopes of bringing her joy or purpose, the feeling of being ready to go is hers.
If you feel like a failure because your loved one refuses care or no longer has the fight for life in them, please consider the following points.
1) When your loved one rejects care, with all health issues considered, it may seem like they are in denial. Someone with mental illness is no longer conscious to think clearly. Therefore, they are not in denial.
2) Even when symptoms are evident to you, your loved one lacks self-awareness. Their response may be from fear of pain, but fear and stubbornness are typical variations of Anosognosia.
3) If your loved one has experienced a head injury of the frontal lobe or TIAs (mini-strokes), then you may be witnessing early signs of dementia.
4) Damage to the brain may cause our self-image to be frozen in time to a point before the illness began. Your loved one has a perpetual mental mirror image of when they were fine, so they do not see what you observed.
5) Lack of insight causes a person to avoid treatment or stop taking medications.
6) You might notice changes in sleeping or eating habits that seem to cause hyperactive behavior or temper tantrums.
7) Getting a diagnosis will need a psychiatrist or trained mental health professional. They will use the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, to assess symptoms and make a diagnosis.
8) YOU ARE NOT A FAILURE. This process includes you, but it is not about you. This journey is about creating a safe environment for your loved ones to navigate their way home.
Thank you for joining in and listening today. I hope this episode gave you more food for thought. Until next time, BE PROACTIVE. Take care, everybody.