"What are you doing here? Why are you driving 60 miles a day to be here? There is no need for you to do that, you should be getting on with your life. She doesn’t even know who you are"

Before anyone could respond to his plight and the insensitivity of that doctor, the group leader jumped in with this remark!

"Don’t feel guilty! You’ve done all you could do for her. It is time for you to get on with your life. Besides, winter is coming and driving that distance every day is dangerous. There is no need to sacrifice yourself when she doesn’t even know who you are anymore."

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 shouldn’t feel abandoned, and more importantly, that he hadn’t 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 Alzheimer’s 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 Debi’s words…

"My mom was still able to walk but she needed to be guided. I also had to help her sit and stand and hold her cake and coffee for her. While there, a stranger approached and identified herself as a family therapist. After ascertaining that I was caring for my mother at home and she did have Alzheimer’s Disease, this stranger launched into a litany about co-dependency and why, for my own good, Mom should be in a nursing home.

‘Your mother’s role,’ she said, ‘was to provide a place for you and to have no expectations of you owing her anything in return. If you’ve been made to feel this way then she has successfully manipulated you into a false sense of responsibility. You are operating out of guilt, and guilt is a useless emotion.’

She handed me her card, told me to call her if I needed help sorting that out, (presumably at an hourly rate,) and after forcing an unwanted hug on me she faded into the crowd from which she had sprung. All this said in front of my Mom. The questions I have are these:

• Who asked her for her opinion?"

One can’t 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 Alzheimer’s Disease, and she had just learned his wife (a second marriage) was looking for a nursing facility for him. It was Grace’s 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 wife’s decision they nevertheless supported it. Grace was frustrated in many levels.

• She felt she was out of the loop and the last to know what was going on.
• She felt her father’s symptoms were over blown and he wasn’t ‘that bad.’
• Most of all she felt cheated. Where her siblings had managed to eke out a relationship with their father while he could still relate to them, she missed out because she wasn't there.

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, don’t feel guilty."

Why Do Caregivers Face Guilt?

It seems to me we caregivers can’t win no matter what choice in care we make.

• If we keep our person home we are guilty of martyrism or co-dependency.
• If we make the nursing home choice, our mixed feelings about that decision are devalued and we are still accused of being guilty of martyrism or co-dependency.

The phrase: "Don’t feel guilty," is a conundrum that carries the same intent as asking a man if he’s 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.

• Caregivers are people who are dealing with regret, feelings of failure, of anger and grieving.
• Caregivers also suffer from a vague indefinable sense of wondering if they were given more respite, more tools, more encouragement and more help, that perhaps they might be able to keep their person home longer.
• They wrestle with vows, obligations and promises they may not be able to keep.
• They are painfully aware that care expenses define who can and who cannot afford help at home. For vast numbers, the cost of nursing home-care leaves caregivers literally trapped at home regardless of their preference in care. For many others it dictates placement in facilities that are far below the standard we want for our loved ones.
• They live in homes, the structures of which make home-care exceedingly difficult for our people if not impossible.
• They have family members and friends who have a great deal to say about how they do the job but who also abandon them during their greatest time of need.
• They are inundated with nothing but negativity and reinforcement of a bias that many just aren’t able to question let alone fight. 
• They also deal with a feeling of relief that is very difficult to admit let alone integrate, a feeling that goes hand in hand with getting a good night’s sleep after making the nursing home choice and knowing they have also begun to say goodbye at the same time.
• And, for what it is worth, those who make the nursing home decision are far from removed from the continued care of their family members. In many ways the care becomes more demanding and more involved because it is removed from the home. It isn’t as if you just drive them up and drop them off and you are ‘off the hook.’

What a demeaning act to tie all of that emotion up into three little words: "Don’t 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 Isn’t Guilt, Then What Is It?

Make no mistake about this; Alzheimer’s 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 doesn’t 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. Grace’s 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 wasn’t 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 I’ve ever attended. The lessons to be learned are these:

1. It is time to stop telling us to not feel guilty about choices we don’t want to make even though we may have to make them.
2. It is time to throw the word ‘guilt’ out of the jargon and start listening to what caregivers are really groping for, a forum where they can express their frustration, their loss, their grieving and their anger without fear of reprisal or judgment and where they can expect information, tools and resources instead of myths and clichés.

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 don’t cut it. We need something more.

- 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 one’s 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 Tom’s 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.