Letting Go and Holding On

One of the challenges Jon and I have noticed about this journey as caregivers, is how very difficult it is to find the right balance between assisting Susan with a task and assisting her with her dignity. It’s very hard for Susan to let go of things that she can sometimes do, but sometimes can’t or sometimes shouldn’t. It’s usually little things – like carrying a glass of water around the house or a handful of stuff up and down the stairs. It could be something very important to her but not so much to us when we have so many other priorities on our minds. Sometimes, it’s no problem at all. Sometimes she can’t do it safely and knows it. Sometimes she can’t do it safely and doesn’t know it but Jon and I do. And sometimes we’re mistaken. Part of the dying process is learning to let go of things and we talk about that a lot. But as Susan points out, it can’t be done overnight, especially for someone who has always been so competent. Knowing exactly how best to get someplace or where to park doesn’t go away just because you’re not the one driving. Taking things away from her – even with all our good intentions as caregivers – sometimes results in some verbal wrangling, albeit brief, that only adds to the stress of it all.

I think parents and teachers get lots of practice at the process of helping, then letting go as children grow, develop, and master new things. Experiencing that is both scary and rewarding. But this is just the opposite. We’re not talking about someone’s development; we’re dealing with someone’s decline. We’re not the ones letting go – she is. I noticed the same difficulties when my sister was the primary caregiver to our mother. The caregiver wants to help, to take annoying tasks away, to keep the loved one safe, and to balance all of that with whatever the caregiver needs to do for himself. But the loved one wants to reaffirm her own value as a competent human, to offer thoughts, ideas, and expertise in the activities of daily life no matter how trivial. It turns out that helping someone who is not always helpless is a steep learning curve.

Because of Susan’s decline, it’s very difficult to tell from one moment to the next if we’re dealing with a sharp, rational thought process or if we’re dealing with the effects of the brain tumor. She is often confused and frequently has trouble converting her thoughts to the right words – but not always. Short-term memory is a big problem. In addition, her mind is tormented by an overwhelming, sometimes anxiety-producing flood of thoughts. Some of those thoughts are constructive, accurate, and right on the money. Sometimes they’re not. Often, they are things we don’t think she needs to worry about. But when we step in to rescue her from being a hostage to her own unnecessary control needs, we sometimes get a backlash because she’s unwilling or unready to give up the dignity of having thoughts and choices. It’s very stressful and takes a lot of energy for the caregiver to figure out the right response. In fact, it’s probably impossible – which adds an element of guilt for not getting it right.

Her decline is more and more obvious. For several weeks, pain management has been a growing issue. We’re constantly trying to determine how much regular, baseline pain medicine she needs in order to avoid too much breakthrough pain yet not so much that she falls asleep in the middle of a sentence. The more morphine she takes the more cognitive function she gives up. The less morphine she takes, the more she’s in pain. Her balance and mobility are much worse. She uses a walker more and more, even in the house. Her risk of falling is considerably higher. She uses oxygen occasionally for shortness of breath (that was particularly handy for our recent visit to the higher altitude of Estes Park). And yet she continues to formulate future plans and future projects and hold on to as much as she possibly can. It turns out that the dying process is much more complicated than I ever anticipated, even though we’ve been informing ourselves about it for years.

How will Susan know when it’s time to let go and die in peace? How will the rest of us know when to signal to her that it’s OK? There is only one answer that consoles me: We have to let go of our human concerns and hold on to our faith in God, Nature, the Divine, or whatever superior force we rely on to help us cope with life’s challenges.

Let go – but hold on. It takes a lifetime to master.