“…you’re the only one who truly understands what he or she needs.” – Gail Sheehy, Passages in Caregiving
Gail Sheehy’s Labyrinth IV is Playing God.
“By now you’ve become a seasoned caregiver. You’re good at it and the only person your loved one trusts. You also believe you’re the only one who truly understands what he or she needs. You consider yourself heroic, partly because others tell you so. You are Playing God. But the truth is that we can’t control disease or aging. And if we keep trying, we will be overcome by stress and fatigue. When all our efforts fail to protect our loved one from inevitable downturns, the failure will feel like our own.”
“What to do: Eventually, we have to accept that some things are totally beyond our control. Clinging to unattainable hopes simply causes more suffering. But we can change one thing—our own attitude.”
Sometimes our family dynamics are such that we have external stresses and difficulties that add to the problems we face as caregivers. Perhaps we have siblings or others far away who don’t really understand our day to day struggles, who don’t agree with what decisions we have made or how we are caring for our loved one. It can be really awful.
If any family member who is not the primary caregiver is reading this, I would urge you to be really understanding and supportive to the caregiver. Of course, you want to help and be included in whatever way possible given your circumstances. But you aren’t doing it and you really need to flow power, love, understanding and support to the one who is. The best way for you to help the one who is sick, the one you love dearly, is to make sure that their caregiver is in good shape. Don’t overwhelm with your list of questions for the doctor, or what you think they should do. Instead listen. Be kind. Understanding. Offer help they need and don’t bypass them. Offer them respite if you can. Come and sit with the ill person so that they can take a bath or have lunch with a friend. Try to honor the roles each of you have taken and trust in them to do their best. Don’t be critical. Let them “hat” you on how to care for them and then don’t go around changing everything. Be respectful. You aren’t doing it. Thinking you could do it better while you get on the airplane to fly home is pretty awful for the one who is doing it.
This Labyrinth is so important for those who have done everything and yet their loved one seems to be getting worse. I can’t tell you how much we feel we have failed them. This is very often – uncharted territory and it’s pretty rough.
I remember after my mother passed away in my home, all I could focus on was what I thought I failed to do, or what I thought I should have done better. And yet, she died at home with us, gracefully, dignified, comfortable, at peace. Right where she wanted to be. It took me a while to let those nagging little moments go and look at the bigger picture. And the bigger picture was pretty amazing.
When I chat with friends who have lost their loved one, particularly in Myelomaville and they are recounting the details of those last moments. Sometimes it was unexpected and so there was a scrambling around trying to figure out what to do or what was happening. I remind them that for some reason we tend to focus on this or that, which we feel we could have done better. Something we should have known or done differently. I urge instead to try to focus on all the wonderful things done over these past years. Sometimes its as simple as not realizing their loved one was dying and trying to save them and then feeling guilty about that afterwards. All that was done to them in those last days or moments. Let it go. You did a good job!
I would imagine for some of you, as it was for me, the statement that we are “Playing God” seemed a tad offensive. But if you kept reading, I hope that you got the intention and the idea that is being expressed. If you couple this with the five stages of grief and add to it, bargaining, it can get quite stressful for you. And of course there is the denial, which plays prominently in this scenario. Denial that they are getting worse and slipping away and we have no control. Recognizing this and changing your point of view can be immensely helpful – to both of you.
Those who have been there will understand this clearly. Those who aren’t there, hopefully in reading this, it will prepare you if you ever are. That little moment where you’re losing it and you suddenly remember, “Oh yeah….” I hope that this will bring you a calmness and that you will allow yourself to transition into that new place you need to be for this part of their journey.
One of the things I reminded myself of often with my mother and then again later with Dave. It wasn’t about me, it was about them. It was making sure I was doing everything I could FOR them that they wanted. Not just everything I thought they should have. I will tell you from my own experience, and this may not be true for you, but it was damn hard to remember it wasn’t about me, but them! I was doing it all for them, but sometimes what I was doing wasn’t what they needed or wanted. Each time I was able to remind myself of this, a calmness would come over me. A spiritual release if you will. A letting go of something I was holding onto so tight my knuckles were white. Each time I was able to release this strangle hold on an idea I was holding on to, I was able to see what was happening and then do a better job of what they needed from me. It was easier.
When I tell “Our Story”, toward the end of it, I talk about how you are stripped of everything unimportant in your life. You have no control over what is happening. The only thing you have control over is how you deal with what is presented to you at any given moment. Ride the Wave.
Oh, and if I ever get here with Dave, I’m counting on all of you to remind me of this!
Love these articles Lori. You are helping many!!!!