Don't Feel Guilty!
by Beverly Bigtree Murphy, MS., CRC., Caregiver
More About Beverly..."When love is not expressed or demonstrated by others to the person with Alzheimers Disease, that lack of love deeply isolates the caregiver as well. What affects one has to be absorbed personally by the other because when you truly love someone, you want and need for them to be loved by others."
"He Used To Be Somebody"
"George was an 80+ year old gentleman who had been caring for his wife (with late stage Alzheimers Disease) at home until she became wheel chair bound at which time he was forced to institutionalize her. He was traumatized by the decision. He wanted to be a continuing force in her life, so he drove 60 miles a day to be with her. He arrived at his support group meeting in tears: The doctor at the home had yelled at him for spending too much time with his wife.
Before anyone could respond to his plight and the insensitivity of that doctor, the group leader jumped in with this remark!
I believe the group leader was responding with what she thought was a positive and supportive thing to say, but how supportive was it? I think she missed the boat. This man was honoring his commitment to be with his wife in the only way he had left. He was determined that his wife shouldnt feel abandoned, and more importantly, that he hadnt abandoned her. What was missing from all the good advice was acknowledgement that his commitment gave him a sense of peace, and purpose, and resolution about his loss of her. His need to grieve and to let go in his fashion was totally ignored. He left this particular meeting feeling somewhat abused and even more isolated by yet another authority figure in his life.
Debi took her mother, Marjorie, who was in the mid-stages of Alzheimers Disease, to a church event hoping she might respond to the familiarity of the service and rekindle memory of acquaintances in the congregation. It started out to be a simple afternoon with Mom. In Debis words
One cant help but wonder
what baggage that therapist was transferring to Debi.
what over inflated sense of importance drove her to intrude on Debi that way.
.how her approach could possibly be considered helpful.
Grace is a long distance caregiver. Her father was moving into the late stages of Alzheimers Disease, and she had just learned his wife (a second marriage) was looking for a nursing facility for him. It was Graces first support group meeting. She had two siblings living near her father, who were a presence but unable to contribute much in help. Although unhappy about the wifes decision they nevertheless supported it. Grace was frustrated in many levels.
She began to cry and the last words she uttered were these: "I feel so guilty."
The support group leader leaned forward in her chair and said in her most supportive tone, "Oh please, dont feel guilty."
Why Do Caregivers Face Guilt?
It seems to me we caregivers cant win no matter what choice in care we make.
The phrase: "Dont feel guilty," is a conundrum that carries the same intent as asking a man if hes stopped beating his wife yet. Being told not to feel guilty is in and of itself an affirmation that the caregiver has reason to feel guilt.
It is as if guilt is the only explanation with which outsiders can categorize the connection we caregivers continue to feel towards our people in spite of their loss of cognitive abilities. That attitude results from bias. It does not the result from an intimate understanding of what guilt is.
Having been through the entire range of feelings that accompany this disease in the care of my husband, I can say that guilt is probably the last attribute that should be attached to those of us facing this level of care.
What a demeaning act to tie all of that emotion up into three little words: "Dont feel guilty."
'Guilt' is nothing more than another one of those cliched labels, imposed on caregivers by people unprepared to deal with those dying of this disease and those of us who care for these dying. Personally, I think the word is not only overused, it is so glib a comment that it should be eliminated from the counseling language entirely. Its use shuts the door on any significant dialogue.
If It Isnt Guilt, Then What Is It?"I would remember and recall in minute detail the day Tom could no longer tie his tie, the first day he walked into the living room with his shoes on the wrong feet and the first day he lifted the telephone receiver upside down and couldnt figure where the voice was coming from. The hardest part was the expression on his face when those things happened. I came to refer to those events as the little deaths. 'Little deaths' that were mourned completely in their own right when they happened and little deaths we faced together until Tom was blissfully let loose of his awareness of those passings. I wasnt as lucky as he; I got to see it all. What he had been and how he must feel took over me at times sometimes leaving little room for my own feelings. I was the one who got to watch and mourn the loss of every nuance, of every motion, of every task that allowed him to function independently on the most basic of levels and the final event, death, wasnt even in the picture yet."
Excerpt, "He Used To Be Somebody," by Beverly Bigtree Murphy, Chapter 6
Make no mistake about this; Alzheimers Disease is a terminal illness and perhaps the one emotion that bogs us down the most is that of Grieving. It is the main emotion that drives this train from the moment that first loss is noted until the person dies.
Dealing with the grieving is a very necessary part of this caregiving task and you cannot deal with it until you recognize its existence. How we process our grief is what lies behind the anger, the depression, the feelings of helplessness and the feelings of abandonment. We not only mourn the physical loss of our person, we also mourn what might have been, what should have been and unresolved differences that are felt to be out of reach now. In the process we face our own mortality, sometimes for the first time in our lives.
While accusing someone of feeling guilty doesnt help very much and trust me on this one, it is an accusation acknowledging the grieving does. This is something friends, professionals and family members alike can relate to and help process. Unfortunately, few do. Instead we are violated with unwanted hugs, sad looks and language that only shuts down the need to talk. Graces support group leader was a prime example of this.
As a member of that group I offered Grace the possibility that what she was really feeling was more akin to grieving than guilt. The decision to institutionalize her father meant that her father was getting worse. She was being faced with his dying and she wasnt ready for it, and, her inability to be there with him only heightened those feelings.
I noted that each and every member of her family was also dealing with grieving issues in their own way. The long-standing family dynamics were more a response to how that was unfolding than anything else. Her whole body language changed and she said she had never thought of it in those terms, but it made sense and she began to weep, as did many of us in the group. We launched into a poignant but healthy discussion of loss and personal fears of the event we were all facing. It was one of the most enriching meetings Ive ever attended. The lessons to be learned are these:
Something holds us in these relationships and that needs to be supported if we are to survive intact. The bottom line is that we are faced with a long road that always ends in the death of the person we care for. Platitudes and empty cliches simply dont cut it. We need something more.
"Let me not pray to be sheltered from dangers but to be fearless in facing them."
Rabindranath Tagore, Fruit-Gathering
Books I Recommend
- C.S. Lewis Through the Shadowlands by Brian Sibley. Lewis chronicled meeting and falling in love with Joy Gresham, who died after a long battle with Cancer in this book. (There were also two movies made with the title, "Shadowlands," either of which I recommend).
- A Grief Observed by C.S. Lewis. This book continues the story after Joy's death. It is the most poetic deeply personal account of what it means to watch and grieve over someone you love that I have ever encountered. It is rare that a volume such as this one enters ones life. It gave form to feelings I was unable to express and provided the words that will remain in my heart as my expression of my loss of Tom.
- Necessary Losses by Judith Viorst. Ms. Viorst covers the range of losses that occur in life. Dying is not the only loss we face in life. Every change we experience in life brings with it an element of grieving. I found this particularly helpful in recognizing the grieving process in the loses that occurred throughout Toms illness.
- On Death And Dying by Elisabeth Kubler-Ross. This book is essential. It was one of the first written about the grieving process and I maintain that to understand the true feelings we experience as long-term caregivers, we must also understand the grieving process that permeates every aspect of care, every change we witness, and every step that leads to the final process of the dying.
On the Internet
- National Hospice and Palliative Care Organization: This agency is a constant source of information, support groups, and services available to caregivers facing terminal illness, including Alzheimers Disease. Hospice was a lifesaver for me and I cannot encourage caregivers to reach out to them soon enough. Frankly speaking they were the only organization that understood what I was feeling and supported me in my decisions regarding Toms care.
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