The tension rolled off Sherry in waves as she entered the room. The whole atmosphere changed as she walked in.
I was assisting in facilitating a “Careversation” for an organization with which I volunteer. These are hour and a half meetings to share basic information, suggestions, and resources with caregivers. The information shared is fairly generic and I was on hand to offer some more detailed specifics and guidance should it be needed. I asked Sherry what brought her to our gathering.
“My mother lives in an assisted living and…” and she was off. The words tumbled out in breathless succession, very staccato, almost like bullets. It was as though she had been holding them in for quite a while.
After a bit, I put my hand on her knee and said, “It’s ok, we have plenty of time. Take a breath and relax a little. Would you like something to drink?” I got her a cold drink before we continued.
Sherry was in her mid-fifties. She shared that her mother was 86 and had a condition that now rendered her wheel chair bound. Cognitively, it sounded like her mother was fine. But it was evident she was extremely demanding.
“I had a very special bond with my father”, she said. “ We were best buddies. We just had this incredible rapport. It was wonderful. And I promised him as he was dying, that I would take care of Mother.” And she launched into a frantic historical account of all that had happened with her mom and all with which she was dealing.
The details were kind of fascinating to me. I was amazed at all that Mom had demanded over the years. Everything from “Two weeks after Daddy died, Mother told me to find her a realtor and start packing up the house, she wanted to move” to “I am out of Tylenol and need you to get some for me right now.” Apparently, those tasks were never presented as a request but always as a directive. I have to admit, I thought Mom sounded like spoiled brat
Over the last ten years since her father’s death, her mother’s physical health had changed and ultimately Mom needed to move to assisted living. “She complains every single day that I did not move her in to Pecan Hill Place but she cannot afford Pecan Hill Place plus their rules about residents in wheelchairs really would not work for Mother,” Sherry told me. “Plus, Raintree, where Mother is living, is ten minutes from my house. Pecan Hill Place is at least a thirty minute drive for me”
Now, Pecan Hill Place is considered the most prestigious assisted living in the area, but I knew from personal experience that while it is beautifully decorated, the care is no better than Raintree, in which Sherry had placed her Mom. In fact, Raintree is a newer facility and is also beautifully decorated. If décor and atmosphere were the measure, I would say it is entirely equal to Pecan Hill Place. But clearly, as Sherry had shared, there were other factors that were and should have been considered in the decision of where her mom should live. But apparently, prestige was most important to Mom.
And of course, all of the details did not really concern me. What I was concerned with was Sherry. Her hands fidgeted as she talked. She was pale and she seemed utterly exhausted.
“My daughter and three grandchildren live two streets over from me. I would love to be more involved with the kids. I can’t attend their sporting events often, or do much with them as Mom always needs something. And my daughter was just diagnosed with a severe chronic illness and I am really worried about her. And last night my husband said he was going to divorce me if I didn’t slow down and spend some time focusing on us.” Sherry sat back in her chair with a sigh.
And here we have it folks – the issue of boundaries for caregivers. Admittedly, Sherry’s situation is extreme. Her mother sounds like a spoiled diva to me. But nevertheless, the issue is an important one, and is nearly always a challenge for caregivers. We tend to develop this over-the -top sense of responsibility when we become caregivers. We take on the task of not only physical care, but emotional care as well. We think we can do it all, including making that person happy. Sometimes it is exacerbated by some promise we may have made, to the person for whom we care, (“I promise I will never put you in a nursing home, Mom, “) or to someone else as Sherry had to her dad.
Yes, I realize that our presence, or bringing Dad his favorite dessert, or taking Mom on an outing, can certainly contribute to the happiness of the person for whom we care. But we, as the care-giver, simply cannot provide for all the needs of another person. It is not possible. Yet, many of us try. And it is usually to our own detriment. Hence, all the statistics out there about caregiver health declining or even dying before the person for whom they care. To me, it truly is about survival, OUR survival. And Sherry was the extreme example.
Don’t get me wrong, I, too, am guilty of that which I see in other caregivers. I fret over every detail of Mom’s care. I bring her favorite snacks. I have decorated her room in her favorite colors. I place her favorite photos so that they are in her line of vision. I hire private caregivers to spend time with her during each day – to not only provide her with some conversation and social stimulation, but to assist with her care in the nursing home where she currently resides. I feel guilty that she is in a nursing home, yet given her care needs, it is the best place for her to be. I worry about her happiness, yet my Mother was always a somewhat negative person. She usually saw the glass as half empty. So why should I presume I could make her happy now? I have a difficult time truly relaxing when I am away. On vacation, I worry constantly. And here is the thing – my mother has a serious condition that has no cure. She is and will continue to slowly decline. There is absolutely nothing I can do to stop it. And at this point in her illness, sometimes I struggle with the guilt that the care we have given her is actually prolonging the inevitable. Is it possible that we provide too much care?
That is probably a question for further thought and discussion. For now, however, it is important to talk about boundaries. We need them, and set them in other aspects of our lives. I think it is critical that we do so when it comes to our being caregivers.
Sherry told me that she was actually on her way out the door with her husband for a date night when her mom called about being out of Tylenol. Sherry said her husband was furious that they “had” to take a detour to the drug store and then to the assisted living to deliver their purchase. I suggested gently to Sherry that Tylenol wasn’t a life sustaining drug. And that more than likely, the assisted living would have it on hand. I also advised Sherry to listen to her dad and what I called his “other voice”.
I said, “Sherry, I know you told your dad you would take care of your mom. But you also told me that you and your dad shared a special bond. It sounds like he loved you very much. Do you think he would be pleased to see you so stressed and exhausted? I think maybe Dad would want you to take care of yourself too. Maybe you could imagine hearing his voice tell you that sometimes. I think you were as important to him as your mom was.”
Sherry looked almost shocked. “I never thought of that,” she said.
We have heard the analogy a thousand times, if you are on the airplane and the oxygen masks drop, it is important that you put on yours first, before you help the child or someone else who is with you. I roll my eyes each time I hear that analogy. But I should not. In fact, I think that setting boundaries is a lot like that oxygen mask. Setting boundaries will help you survive so that you continue your role as caregiver as long as you are needed. Coach Frank Broyles, the winningest coach in college football, took care of his wife with Alzheimer’s. He has written a guide for caregivers in cooperation with the Alzheimer’s Association called Coach Broyles Playbook for Caregivers. One of his key points is that in football, it is crucial to protect the quarterback – that person leading the team.
I can only hope Sherry will set boundaries. I will continue to try. I hope you will too.
Hang in there, Sandwiches. We have miles to go before we sleep.