March 28, 2007

Yesterday, my friends Sydney, Colline and Susan moved their mother, Frances, to an assisted living facility. I've know them for years. They're like family to me. I came to know the family through Frances, who cared for her own mother at home for years. Frances helped to start a support group at Decatur First United Methodist Church 30 years ago. They asked me to lead it because of my experience at Wesley Woods. The founders were five women who, like Frances, had the responsibility of caring for mothers at home. They laughingly and lovingly called themselves "Dutiful Daughters."

The group grew over the years, served hundreds of "daughters," and later, a few sons and couples. It met monthly, and I was privileged to meet with them. The group was open to anyone. Word of mouth channeled new people to the group. The original five "Dutiful Daughters" became expert supporters as they lived through the deaths of the mothers they so responsibly served. They found themselves comforting others in aisles at the grocery store, over the back fence and in Sunday school. They were naturally therapeutic people who'd "been there."

As Frances aged, you could begin to see signs of the ravages of brain disease. Sydney and her husband, Bill, began to coordinate shared responsibilities with the other sisters all doing their part as they were able. This phase lasted several years until yesterday — when the time had come. Frances' condition was irreversible; it was affecting the health and well-being of the family. It had caused clear and present dangers for herself. And she didn't really know anybody anymore.

Sydney wrote me last night —

"This is too hard!!! Make it stop! I guess today went ok. Colline was ready to bolt and run with her, and Susan almost threw up. They led her away and then led us away. The lunch time report was that she was talking and laughing with her table mates and that she's a dear. My head knows she's ok. My heart is broken."

The irony in all of this is that Frances faced these same issues 25 years ago with her mother, Sydney's grandmother. Frances wrote about it in a booklet entitled "Dutiful Daughters" that the support group produced. Frances' story was called "...loved me the most." Here's what Frances — a generation ago — had to say:

At age 87 my mother came to make her home with my husband and me.

We had felt that keeping her in her own home as long as possible was best, and we did that with help for a number of years. As her health failed and symptoms of Alzheimer's disease increased, we chose to bring her into our home to live.

She was gentle, quiet, loveable and as easy to care for as a person in her condition could be. However, we were not prepared for the changes in our lives that having her with us made.

My husband and I had just retired from our jobs and we had looked forward to having time to travel and pursue other interests. Of course this was impossible now, because Mother could not be left alone. Consequently, we both became frustrated and I began to feel conflicting emotions. I wanted to take care of my mother, and at the same time I felt resentment for having the responsibility.

My sister and two brothers helped with her care for a time but as her condition worsened I was not given the help or support I needed. This was very discouraging to me.

In retrospect I realize this conflict with my family was as much my fault as theirs. I had chosen to care for Mother — thus they saw it as my responsibility. I failed to expect or require enough help from them.

If, in the beginning, the decision for Mother's care had been ours, rather than mine, and a plan made with all of us contributing and sharing, I think we could have avoided much misunderstanding and heartache later.

I cared for Mother because I really wanted to, even though I was drained physically and emotionally with her constant needs night and day. I felt tenderness and love for her and received a great deal of satisfaction in caring for her. I kept her clean, dressed her in pretty clothes, put a ribbon in her hair and made her room attractive with pretty sheets. I used lots of color, plants and flowers and potpourri for a nice fragrance.

It was particularly frustrating not to be able to communicate with Mother. There was so much she could not understand. But even in her confusion she never lost her gentle and cooperative spirit. She lived in a time long past, and I discovered if I took her seriously and entered her world too, I could often relieve her anxiety and give her comfort.

If Mother was worried about her mother (long deceased) we would talk about what we could do for her. If she concerned herself with some job in the past she thought she hadn't done, we would plan (pretend) to do it together, etc.

It was a challenge to cook and provide nourishing meals for her. I felt tremendous satisfaction in discovering new ways to prepare her food. One was a delicious fruit shake I would make for her by mixing several different fresh fruits and pureeing them in the blender.

Mother had difficulty chewing a tossed salad and I learned to put all of the ingredients in the blender and serve it as a cold soup.

There was no way she could get this kind of attention in a nursing home and I wanted to keep her as long as possible. But I needed help!

One great help in learning to cope was the understanding that our support group at church provided. We became a group of friends, all with aging parents, who almost felt like a family. We listened, we shared experiences, we cried and we laughed together, we supported each other and gave comfort and suggestions. Most of all, the understanding of our common problem helped us through these tedious and trying times.

More help came from Wesley Woods Health Care facility. When I learned they would take Mother for respite care I felt a great load roll off my shoulders. I knew I had a place I could take her for a short stay. I could get a much-needed rest and have time to do some traveling. I found tremendous help also in having sitters come in for several hours a week.

The most special and appreciated help was from my husband. His love and support were never-ending. He didn't complain but listened and understood when I complained. He let me cry when I needed to cry. He calmed me when I was overwrought. He learned to do almost everything for Mother that I could do, and she responded to him very well.

Our children were a source of needed support. They gave their "Granny" extra love and attention and showed in numerous ways how much they cared. They missed having us free to take part in their family activities, but they were behind us one hundred percent in what we were doing for Mother.

As her condition worsened last year, we had to have nursing care part-time in our home. Through a family member I knew of a practical nurse who would come in a few hours each day.

Then the last six months of Mother's life, a move to a nursing home was a necessary decision, though very traumatic. In some ways, the experience I'd had with respite care with Wesley Woods took some of the fear away and helped me make the change. At this point, Mother was aware of very little. I continued to look after her carefully in the nursing home but they were able to give her nursing care I could not provide at home.

Mother died peacefully at age 93. I had lost the one person on Earth who loved me the most, but I was ready for her to go. I had given her more than five years of my life, but how much more she had given me!!

Though this was one of the most difficult periods of my life, it was a time of growth, of practicing patience, giving love and understanding and receiving love. My faith was deepened, learning to depend more on God, and I was given an insight into family relationships I would never have had otherwise.

I have felt very little guilt, though I remember the times of despair, the times I was short-tempered and impatient. I see mistakes I made and the way I could have done better. However, I know I gave Mother much loving care and I focus on this rather than dwell on what might have been.

I was blessed in so many ways and I am thankful to God for this time he gave me with my mother.

There are generations of "Dutiful Daughters," some of whose lives we've touched, and many others that are hidden to us. Our job is to support them — and to see that their stories get told so that it gets easier in this country for families to shoulder the burden and for people like you to help them do it.

Frances, you were a dutiful daughter — and you raised dutiful daughters, sons-in-laws and grandchildren. You did your part — for the person who loved you the most! (Though Sydney, Colline and Susan run a close second!)

We have a duty to tell your story.

Larry

William L. Minnix, Jr., D.Min.
AAHSA President and CEO

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