Whatever you accept completely will take you to peace, including the acceptance that you cannot accept, that you are in resistance…E. Tolle (Stillness Speaks)
The Long-Term Care Facility where my mother resides distributes a monthly newsletter. For the last couple of months, the newsletter has presented the seven A’s of dementia which I believe all of us (as family members, visitors and caregivers) should read and try to understand. When we understand why our loved one acts or reacts in certain situations, that information can help us support our loved one. In addition, the information helps “unveil” the mystery of the disease, and our compassion will increase with understanding.
Most of all, the information acts as another tool for managing the symptoms. If your normal response is to argue with a loved one who has a dementia, then knowledge about how the brain is affected by a dementia-related disease will soon open your eyes and mind – arguments and debates are futile and only lead you to suffer more. Of course, arguments and debates confuse the person and usually exacerbate his symptoms and further distress the person with a dementia.
Here are the seven A’s of dementia:
- Altered perception
Each A represents damage to a particular part of the brain. Note also that not all persons with a dementia-related disease exhibit all symptoms. I will discuss the seven symptoms later in other blogs. For now, let’s discuss Anosognosia.
Anosognosia – person has no knowledge of their illness; therefore, the person will have no insight that they have deficits. For instance, the person will not recognize that they are no longer able to care for themselves. They might resist any support or assistance from the caregiver with regard to bathing, washing, dressing, etc.
This is a symptom that most caregivers recognize immediately as our loved ones resist us (or fight or argue) over…well, everything! Everything! My mother insists that she can go shopping on her own (she is in a wheelchair and gets lost going down the hallway); she insists that we should never have taken her keys away or sold the car; she insists that “this weekend, I am going to drive myself to another residence”); she insists that she will do her own laundry; she insists that she can go to the bathroom on her own (she cannot…trust me!); and lastly, she insists that she will go and make us a cup of tea because “my kitchen is upstairs”…it’s not! (On one occasion, when her friend visited, my mother told her friend that she would go and make tea for them. My mother left the room in her wheelchair. Her friend waited and waited. Eventually she went down the hallway looking for my mother. She found my mother drinking a cup of tea that a personal care worker had made for her. My mother saw her friend and exclaimed, “Oh, Margaret, how lovely to see you.” Mom had completely forgotten that she had a visitor or that she was looking for tea for the two of them.)
Personal care is a particularly difficult and sensitive issue with our loved ones. When I cared for my father in his home, he was always compliant. He just went with the flow. My mother is the exact opposite of my father. She argues and resists any assistance. If she needs to go to the bathroom, she will insist that she can manage on her own. She becomes quite vehement about this issue. In the old days (before I accepted my reality) I would argue with her and point out that she needed my assistance. Now, I either ring the call bell in spite of my mother’s wishes, or I wait for her to calm herself and then I deliberately wheel her chair into the bathroom and begin to assist her…without saying a word. I do not remind her that she is incapable of managing on her own.
The non-confrontational approach is the best advice one can receive…smile and just wait. Wait for a few seconds to allow your loved one some dignity – either allow them to speak or allow them some space (stillness) – then, approach them slowly and begin to assist them. If possible, speak in low tones (non-confrontational) and explain what you are doing. I have also found that if I distract my mother while I am completing a task, that breaks her attention on the task and she re-focuses on another subject.
When my mother resists when I push her wheelchair (she plants her feet on the floor and that chair is not going anywhere!), I will stop and listen. She might try to explain something that I don’t understand. I listen. And listen. When she is finished speaking, I might say “Let’s finish here in the bathroom and go and get a cup of tea.” Usually she responds in agreement. And once again, I push the chair into the bathroom.
I have found that the mere act of staying still and silent while she expands on something is enough. Many times I do not understand what she has said. Sometimes I do not understand the gist of the meaning or her intent; but we can all understand the emotional energy of fear, anger or frustration.
Recently I helped my mother in the bathroom and I wheeled her to the sink to wash her hands. When I pumped the soap dispenser and gave her some of the soapy suds, she began to wash her hands and burst into tears. I froze. I wanted to weep. But as she cried, I leaned over and wrapped my arms around her and began to cry, too. We wept together.
I have learned that holding back the tears do not serve me or honour my emotions. So as my kids would say, I “let it rip!”
When we had a moment, I asked my mother what was wrong and she answered that she hated always needing help. Well, I can understand that as most of us value our independence and would never want to lose it.
Unfortunately, when one has a dementia-related disease, the loss of independence is a reality. One will lose independence…it’s inevitable.
In that shared moment, we mourned her loss of independence. I felt humbled that she allowed me to see her vulnerability and I honoured her by showing my own vulnerability.
That moment will always be seared in my memory. But not because I saw it as a loss, but because I see it as a connection – shared vulnerability.
Afterwards, my mother revealed that she was also upset that someone would not give her a kleenex when she asked for one during the lunch meal. Yes, a kleenex! I listened as she told me a disconnected story of wanting a kleenex, and no one gave her one. She is completely unaware that her table mates have hearing difficulties and dementia-related issues also. (But I did not try to explain that to her.) So she began to cry in the dining room. A personal care worker recognized her distress, and wheeled her back to her room so that she could be alone. That is when I arrived.
After we had dried our tears, I suggested that we find the personal care worker and give her thanks for caring about mom during the mealtime and she agreed.
When we found our personal care worker and had thanked her for her kindness, she, too, had tears in her eyes as she hugged my mother. In that moment the three of us shared a connection.
Later when I drove home from the residence, I reflected on my own emotions. I was glad that I had given into my emotions and cried with my mother. There was a time that I would have held back the tears and tried to bury them, and my body and my spirit would have suffered for it.
When we truly accept our emotions (even when they are like a roller-coaster), we can begin to accept the disease, also. We are human; we will experience many emotions throughout this journey – as soon as you recognize this fact, then you are recognizing your “reality.”
Let it rip! Give into your emotions. You will feel free. When I was little, my mother would often say that a good cry was good for the soul. I still believe her. My soul thanks her.
The Seven A’s of Dementia – Wikipedia.org