My journey into helping families with chronic illness took an unusual path. My grandmother was widowed in 1984. She was about 70 at the time. Soon after, we built an apartment onto her home where my mom could oversee her care. My grandmother was actually doing fairly well. My mom was still working, and their relationship, in addition to being daughter and mother, was really a companionship. They had their evening meals together. They did their shopping together.
In December of 2000, my grandmother had a heart attack. She was given three to six months to live. But, we had a plan: my mom was going to take care of her. Then, two months later, my mother passed away. I became a caregiver to my grandmother.
That began my journey into elder law, and my journey in dealing with families with chronic illnesses.
There are so many lessons from my journey with my grandmother, but one that really sticks out to me at this moment is this: she really did not understand why she would survive her husband, her three brothers, her parents, and all three of her children. I think of all the battles that she and I fought together over the next year paled in comparison to her trying to get her mind around that fact. Why did she have to live to see all of that?
I thought of this story recently, but on a different level. A month or two ago, I had a family come see me, John and Betty. Though they were both still working and a very vigorous couple in their late 60’s, John had been diagnosed with dementia-like symptoms. Even finishing a sentence was difficult. Betty would spend her day working, only to come home and need to address the issues with John. She was exhausted.
We began working with the family. We had one of our care coordinators (in this case a social worker) assigned to John and Betty to help guide them through the process of dealing with a chronic illness, as well as aging issues.
We had a second meeting scheduled with the family, and the care coordinator gave me a heads up: John and Betty were really in distress. The care coordinator was afraid they were angry about something, but she could not put her fingers on it.
When John and Betty came in to see me, I made a special effort to set aside some time to visit with them. In the beginning of the conversation, they related that they felt as if they just did not need help. (Remember that John, many times, could not even finish a sentence.) Betty said, “I am still working, John is still strong as a bull and he gets a lot of work done around the farm.”
I kept visiting with them. Finally, and in tears, Betty said to me, “We are just not supposed to be here now in this condition.”
During the rest of the conversation, it became so evident to me how much she loved John and hated to see him go through what he was going through. But, even more evident, was John’s heart pouring out his love for Betty. He had always been the strong one. He was still the strong one, and he was afraid he was losing that ability. He was afraid that instead of Betty leaning on him, he would have to lean on Betty.
Once all of us realized what was going on, my law partner and I, as well as John and Betty, felt the tension lift from the room. I think just recognizing our fears helped us talk about them and share with each other. Though I left the room and let the care coordinator finish up, I heard laughter coming from the room later on. I knew that some bridge had been crossed.
It does not matter if you are 27 or 87, bad things can happen. You can wake up and find yourself in a position that you never thought you would be in. Many of us are going through that type of journey now. It can make us question so many things that we take for granted in our lives.
My grandmother was never a complainer, but on a handful of occasions she did ask me why she survived all of her family. I wish that I could tell you that I said something profound. I did point out to her that because she was still around, our family, from all sides, got together once or twice a year just to be in her presence. I moved my grandmother to live in the same town with me. We were together the last four years of her life. That experience taught me that many little things are just as important as big things.
Though I have been practicing law for 38 years, though I have been working with people with chronic illnesses and aging issues for almost 15 years, I learned something from John and Betty. I know that their days ahead will be difficult, but I know that they will love each other to the fullest extent that they can, and they will appreciate every moment they have together.
My hope for all of you is that when you do face a situation like this, as is John and Betty and as did my grandmother, you be willing to let people help you. Many times a guide is important.