The comment wasn’t a comment, it was a plea:
“Please help me with the ‘right’ words to say to my sister,” Nancy wrote. “She won’t visit our dad or help in his care because she says she just can’t bear to see him this way and she wants to remember him how he was.”
Countless care partners find themselves in the same situation as Nancy. It’s frustrating, painful, and stressful when you don’t getting the support you need from others. But we can’t control their thoughts and actions.
My reply to Nancy came from the heart. I responded:
Everyone deals with the changes dementia produces in someone they love in different ways. Some people really can’t bear to see other people change, whatever the changes might be; some people want things to remain the same even when that’s impossible. Some people cannot abide suffering. I understand that–having to watch loved ones suffer is torture for me. On the other hand, some people don’t have an empathetic, sympathetic, or compassionate bone in their bodies. I’ve experienced the tragedy of that firsthand. So have thousands of other care partners. The only person we have control over is ourself, and sometimes we feel we don’t even have that.
If I found myself in this situation, I might try something like this:
“I understand how you feel. It’s really hard to watch Dad decline and not be able to do the things he used to do, or to relate to me in the same way he used to. I feel sad Dad is ill. Really sad. But I have found a way to see him as he is now from a new perspective. Not as someone less than who he used to be, but as someone different than he was in the past.
I still see his core and spirit, which to me remain the same. I’m happy and grateful I can still connect with him and keep him company at this time when I believe he really needs me. I think about what he would do if I were sick, or facing a challenge, or whatever. And even though it’s hard, I want to hold his hand because I think it’s the right thing to do and because I love him. I think about what I would want if I were in his place and I try to do things I believe will bring him pleasure and joy.
I understand you don’t feel the same way I do, and for you it’s too painful. My wish would be that you would try to see him in a different way, as the person he used to be and still is at the core of his being. But I understand if you’re not able to do that. Just because I wish it, doesn’t mean it will be so.
I remember Dad as a vital, engaged, dynamic person full of passion and energy. And I still se those qualities in him despite this disease. I want to celebrate who he is right now as well as the person he was yesterday, last year, 10 years ago and even further back.
I don’t believe this disease can take away who Dad is. I value him as he is, just as I also cherish the memories of who he was and the relationship we had. I don’t believe Dad will be gone until he dies. I understand it may be too painful for you and I’m sorry for your pain.”
That’s what I would truly feel in my heart, and that’s what I would say. I believe we have to speak our truth, and then detach from the outcome, all of which is easier said than done.
“That’s my truth, Nancy,” I answered. “You have to find your own. When you do and when you speak it, you will be free to joyfully do what you must for your dad and you won’t waste energy trying to force your sister to behave in the way you think she should. What is right for you may not be right for her.”
I closed with a qualifying note: “It’s a whole other kettle of fish if your sister has legal responsibility for your dad and is neglecting his care in some way. If that were the case, a completely different course of action would be required.”
All of this said, an equally valid and necessary response in these and other situations when all the right things have been tried and failed might be to tell siblings, family members and others to “Stick it!”, forget about them and move on.
You gotta do what you gotta do.