Someone said, "Once you open a can of worms, the only way to get the worms back in the can is to get a bigger can." I know it sounds strange, but that old saying kept running through my head as an audience's responses took over a meeting where I was supposed to be the speaker. It was a gathering of people who were giving care to aging or ill loved ones. Many of them were caring for parents or spouses with Alzheimer's. I simply announced that this session was not about the loved one or the illness, it was about them. I asked them to tell me what the care had cost them, what they had lost. The meeting exploded and I never got it back. 

I can only list a few of the responses from that day, and other days with similar results. Since that day, I try to open the floor so people can share what care is costing them. Some folks have said they lost:

THE PERSON: "Alzheimer's took away my husband. I live with a stranger now but I must act like I feel the same way about this stranger as I did my husband. I can't grieve the loss, but the husband I knew is gone."

COMPANIONSHIP: "Care dominates and leaves no time for the communication that made our relationship so dear."

TIME: Full time care is truly the 36 hour day. Even part time care for a loved one not living in the home with us, can consume every spare moment of our lives leaving no time for ourselves or for the rest of the family.

FRIENDS: Too often they don't know what to say or how to help, and feel so awkward while visiting us that they put it off until it has been so long they would now be embarrassed to come, so they stay away. We become lonelier and lonelier, lost in caring.

INTIMACY: A young mother who was caring for her husband through a long and ultimately fatal disease told me that during a recent hospital visit, she had hugged her husband for the first time in seven years. It was not a lack of love on either of their parts, it was the care taking up all of the time and energy either of them had. 

SPONTANEITY: "I can’t even go to the grocery store for a loaf of bread without preplanning the trip. Every detail of my life must be thought through well in advance to provide coverage for my absence. You cannot imagine what it took for me to be here today."

PEACE: "Once our family was at peace with one another. Now we squabble over every detail of the care, the money it takes, the type of care we are receiving, the location of the care, you name it, and we will fight over it. What is it that causes all of the anger to come out when parents need care? I don't understand it, but believe me, our family is in the middle of it."

HISTORY: At first, I did not understand what the person meant when she said she lost her history, but now I do. My wife and I traveled by car as much as possible. We had wonderful conversations on our trips. One day I began to notice how many of our conversations started with "Do you remember when..." We talked about our history; the time we took the kids to Disney Land, the time we went to see Roosevelt's home... If communication had died between us, one of the great losses would have been our history and the ability to talk about it. One of my daughters has gone through a divorce. She says one of the hardest things about that loss is she has no one to talk with about the memories of when the kids were young. 

Those are some of the comments from just one such session. I could fill up several more blogs with differing comments from other sessions when I opened up a can of worms, but the most important thing and the most healing thing this blog can do, is open up to those lines of communication. Hopefully you have someone to share your experiences with. If not, comment here or email me, I am here to listen.