Shared story: unique grief, today’s victories, a blip in eternity

Today’s shared story comes
from Bob Willson,
who brings his wife from her nursing home to spend time with him at their home in Burlington, North Carolina, almost every day.

My wife, Sue, suffered a major stroke in October 2016 while undergoing a cardiac procedure that was supposed to lessen the risk of stroke. Ironic, I know. Whether you are a caregiver for an Alzheimer's patient, a stroke survivor, or an accident victim, some things will be the same for each of us depending on the activities of daily living requiring our assistance.

Patience

We can all use more patience, but I've always believed that if you pray for more patience, you surely will get it. Patience arrives after weeks, months, or years of missed appointments, changed schedules, canceled vacations, the weather trashing whatever activity you had planned, or unscheduled hospital visits where you sit for hours waiting for someone, anyone, to come help your loved one.

Calling

Mark wrote about caregiving now being his calling. I've reflected on that and I think it's a fair conclusion. I'm reminding myself of the answer I have given to anyone asking what my epitaph should be: "He did what he said he would do." I promised to love, honor, and protect her, in sickness and in health, "as long as we both shall live."

It’s not just that my time has come to honor that part of the vows, it’s that it hasn’t really surprised me all that much. Oh sure, I bristled when the primary care doctor at Sue's nursing home met me that first day in 2017 and said, "Welcome to your new reality." But as time has taught me there will never be full recovery or anything close to full recovery, I've come to rejoice in the small victories and make them big.

Bob and Sue before the stroke (top) and dancing in a physical therapy session. Her smile has never left her.

I've been telling Sue for five years now that "small steps are big stuff." I've always been the glass-half-full guy in our marriage, so I now make a big deal out of small wins, and I try to end each day not only with "I love you," but these exact words: "We had a good day didn't we?"

Grief

Everyone who contributes something to Mark's blog is in unconventional grief, grieving all the losses with someone who is still alive. I can't do anything about it, try as I may, but I now acknowledge it for what it is. For some, anger wells up and overtakes their outlook. That has not happened to me but I can understand the reaction to life making one negative turn after another, always away from what you had planned. I guess what I am doing is assigning greater importance to the little victories than I am to the disappointments or missed opportunities. I hit the pillow and I'm gone for the night without any "woulda, coulda, shoulda" keeping me awake.

Frustration

Two things really bug me: frustration with explanations of how Sue is doing, and the few people who will now really sit with us and just be there for us and with us.

People who haven't seen us in a while ask me how Sue is doing. They don't want to hear that she is slowly slipping away from me, so I answer that '“she's about the same” or “she's holding her own.”

They don’t want to hear that she is slowly slipping away from me.

I understand that these questioners are acknowledging your presence but are not looking for a long conversation. I am surprised, though, that they expect improvement to be the goal. Of course it is, but when it is not going to happen, they don't want to hear it or deal with it. And you don't want to keep repeating it; otherwise you are both in an awkward conversation you don't want to have. I will have that conversation with Mark and others whose path is ongoing like mine. But if major improvement is not in the cards, then making the best of a declining reality is a worthy pursuit.

As far as people coming to visit, they have pretty much stopped. There are now two people who come to sit with Sue and simply talk to her. I cherish their friendship, and we welcome each visit. Sue cannot usually form words to talk with them, and they understand. So they talk for her whether or not she can answer.

Fear . . . and faith

My biggest fear is that I will pass away first, so my goal is to outlive Sue. I’m taking as good care of my body as I can, because I don’t want my burden to land on our children any more than the deaths of parents cause for any of us.

Two things really keep me going. First I acknowledge that this is but a small part of eternity, and in the long run this will have been a minor hiccup. Easy to say, but I count on it every day. Lastly, this five-year unchosen journey has not only deepened my faith and reliance on the promises of God; it has highlighted elements of my character that needed refining.

Sue gets a puzzled look on her face when I tell her every night that she is such a blessing to me. If you’re a caregiver, you likely know what I mean. I thank Mark for starting this blog and I hope you, too, are blessed by our collective journeys.