by Reed Henry, MA, LMHC, gerontologist
I met with a man this morning that had recently experienced the agony of placing his dear sweet wife in a specialized memory care facility. Walter and Emma* have been married 62 wonderful years and he loves her with all of his heart. My last two encounters with him have centered on his unhappiness with the care she has been receiving.
Walter asked me if he was being unreasonable about his complaints and made several attempts to talk about other resident problems. Once he was directed gently back to the subject of Emma, he asked if perhaps his expectations were too high. We spent some time processing his feelings about the level of care he provided versus the level of care they could provide. What we discovered was that an important ingredient was missing: love.
You see, no one could ever provide the kind of care that he could provide because he loved her so much. This transition was breaking his heart. He needed to see her daily, yet he knew that his visits would not be remembered by the next day. It became exceedingly painful for him to leave her, especially these past two days, for she began to weep. No matter what he did or said, he could not make her stop.
We talked about the area of the brain known as the hippocampus. This area is one of the first areas of the brain to be affected by dementia and has several functions, including indirectly affecting emotion regulation. Thus, as dementia progresses, it becomes increasingly difficult to control emotions. Many studies have shown that people are aware that they are losing control of their daily living skills. This often creates anxiety, fear, depression, feelings of abandonment and even hopelessness.
When I asked him what it was that may have led her to weep, Walt said that he it may have been because he informed her of what his doctor had recently shared with him — prostate cancer. Since Walt has had a history of prostate cancer, he was having some incontinence issues. His doctor recommended he have minor surgery to remedy this problem, which would include an overnight stay in the hospital.
When Walt shared this with Emma, she became upset and began to cry. This could have been for a number of reasons — perhaps she was having trouble controlling her emotions or maybe she couldn’t fully process that it was expected to be a fairly routine procedure.
People living with dementia often experience receptive and expressive aphasia. In receptive aphasia, a person can hear a voice or read something in print, but they may not understand the message. With expressive aphasia, a person has trouble communicating, even when they know what it is they want to say. In Emma’s case, it’s possible that this was also contributing to her tears. She may have felt helpless, not being able to help the man she had been married to for 62 years.
When I explained this to Walt, it led us into the realm of grief and the concept of reciprocity.
You see, he and his wife have always shared everything with one another. She has a history of breast cancer and he has a history of prostate cancer. They have raised a beautiful family together. Everything about them had always been about this beautiful crazy love they shared with one another.
When Walt was worried about something, he could always go to her. Like a guardian angel, Emma was always able to help him see things in a different light. When Emma had problems, Walt was always there for her with a soft shoulder for her to lay her head upon.
Because of this dreadful thing known as dementia, he no longer has the reciprocal relationship he once had with his Emma. He is grieving her loss ever so slowly. This loss had been unconscious to him for several years, even before Emma’s diagnosis. Somehow his brain had been duped into thinking she could still share in the important decisions vital to their wellbeing. He could no longer ask her to sign legal documents, ask her to drive, balance the checkbook, go grocery shopping or manage the family business. This loss had been unconscious to him until now, once it was spoken.
Walt now understood that his negative reaction to the staff at the memory care facility was based upon beliefs he once held which were grounded in 62 years of blissful reality. As Emma’s reality changed, Walt struggled to hold onto this old way of thinking and he was now face to face with the grief and loss of reciprocity.
Often times, when home care is introduced or an individual is placed into long-term care, things are easily managed until the family is present. Negative responses to outside care are often subconscious and they do not even know it. Every family member is impacted by dementia and each one of them has formed a unique, reciprocal relationship with their loved one throughout their lives. Empathy and understanding of this will pave the way to a better relationship with the family and better care for their loved one.
*Please note that names and images have been changed to protect the privacy of the individuals involved in this story.