Caregiving As A Community

by Kathleen Koles

Link to Bulletin

Good morning. I spoke to Paula a while back about sharing

reflections on the “Burdens and Blessings of Caregiving”. But I want to also talk about caregiving as a community.

As most of you know, I’ve worked at the Sam L Cohen Adult Day Center as their Registered Nurse since 2015. Before, I worked as a Clinical Consultant at Unum insurance company in their Long Term Care Benefits department. We took care of claims for clients who had cognitive impairments and who needed supervision for health and safety. We also managed claims for people who had the physical need for assistance with basic tasks such as bathing and dressing and toileting. My very first clinical job was as a nurses aide in a nursing home. And over 20 years ago, my former partner and I took her mother out of a nursing facility and cared for her at our home. She had suffered a stroke and needed assistance with everything and had a cognitive impairment. She was my dear friend and I loved her. It was my privilege to care for her and be with her when she died.

It was one of the most difficult things I’ve ever done. I also know it was one of the most important things I’ve ever done. It was also exhausting.

I share my background with you because I want you to know that I’ve journeyed along this caregiver road. And unless you’ve done that, you might have a vague idea of what it might be like. But, truly, it’s like telling someone who has never walked what it feels like.

We find ourselves in the role of caregiver in various ways. We have babies. They are dependent on us for everything. We have pets and THEY depend on us. I think of those situations as voluntary caregiving. Generally, we choose to have children or pets and think we know what it will all entail. We are sometimes- often- mistaken. But overall, in those circumstances, we become caregivers by choice.

The caregiving I’m talking about today is different. A spouse, partner, parent, child, relative or friend becomes physically disabled and needs our help with basic tasks either

short term or long term. Or they develop a cognitive impairment or dementia and need verbal guidance for what used to be simple things. We don’t pick these situations. They can be thrust upon us suddenly- someone suffers a debilitating stroke. Or our role as caregiver evolves gradually- the initial stages of dementia when perhaps we can leave our loved one alone when there is just slight memory loss. Time goes by, the disease progresses and they need more and more supervision- watchfulness for their safety. And our role as caregiver expands and becomes more consuming.

I’ll talk about the burdens first. I won’t sugarcoat it. There are many. Utter exhaustion from staying up all night when someone with dementia is dressed and ready to go to work when they retired many years ago. When someone we love no longer recognizes us. When we are weakened by the physical strength required to get someone in and out of a chair, on and off the toilet, in and out of the shower. And the harsh truth that people don’t talk about: just because a marriage or partnership is long

in years does not mean it was always loving. Or consider the adult child caring for a parent when their relationship may be fractured. And here we are, caring for someone who may have betrayed us in the past and our wounds have yet to heal. And what about the person who needs the care? Who has been forced to exchange independence for dependence and ask for help with the most basic of things. There can be loneliness and a sense of isolation. We often no longer can do the things we used to do which brought us joy.

It sounds grim, I know but let me talk about the blessings and I won’t sugarcoat those either. The rhythm of a caregiver’s life and their loved one changes and quite often for the better. The busy – ness of past years melts away because it has to for us to shift focus. We are forced to slow down and in that slowing down, there are holy moments of peace and quiet- moments you may not have experienced together in a long time. You might learn new things about each other. You will laugh. Your love may grow. These can be times of infinite grace.

Whatever the nature of the caregiving situation, one common denominator I’ve seen time and time again is that caregivers often politely decline or outright refuse help of any kind. Or they will accept help only out of sheer desperation. Why are we, in general, so reluctant to accept help in this circumstance? We pay people to fix our cars, our furnaces, maybe do our lawn care or help with things around the house. But when it comes to accepting help with full-time caregiving, one of the hardest jobs we will ever have- we say, “No thanks, we’re fine’.

In preparing for today, I spoke with a friend who has worked closely with caregivers or “care partners”, providing direct care and participating in support groups. I asked her about this reluctance to accept help. She couldn’t come up with a definite answer either. But, she offered the following thoughts: some people seem to feel there is a stigma in even needing care to begin with, a stigma associated with dementia, a desire to protect the dignity of the one who needs care- that they may

appear “less than” they were. Then I asked her what causes people to accept help. She said some people learned about caregiving from others; maybe they saw their parents caring for their grandparents. And if they witnessed that accepting help made it easier, they might be more inclined to get help sooner. But the usual reason people finally accept assistance is that they just reached the end of their rope.

Yet, it does not have to be that way. In the Gospel today, Jesus calls His apostles to ministry. He knew He could not do what He was here to do alone. He was not on the earth for a solo stint- Jesus knew He needed help. And if Jesus needed help, what makes US think that there is shame in asking and receiving help? There shouldn’t be shame because, quite simply: God wants us to live in community. He has ordained it.

In the book, “That Man Is You”, Father Louis Evely wrote: “Yes, God could’ve done everything all by Himself but He so made the world that things wouldn’t be as good that way. He’s chosen to need ‘us’. He’s willed that we be necessary to Him for

the fulfillment of His designs. “You’ll do greater deeds than I.” He’s permanently set up the universe in such a way that God with man and woman can accomplish more than God alone.”

This church community is, to me, quite a slice of heaven. You know the difficult times I’ve had in the past and you took care of me. Through friendship, meals, visits, cards, and prayers. This past August, something became crystal clear to me. We show up for each other. Eileen Foley had an art show at the University of New England. At her opening, all the members of this church who could be there were there. And that day, I realized that this is what we do. We show up for each other-for the good things-for the tough things. And we are very good at it. We take turns taking care of each other.

In the Gospel reading today, Jesus calls His apostles by name. If He physically walked into this church now- who would He call? Well, He would call:
Michelle, Beth, Ada, Heather, Irv, Ron, Judy, Denise (name members present)

He would call all of us to serve. He would say “Come follow me”.

We are each a little stone in the mosaic described in today’s reading. We are present day apostles in God’s ministry. And caregiving is a ministry and I’d like us to start thinking of it as a community ministry.

Many years ago, I had a brief personal crisis and the opportunity to see a mental health therapist. I went about all the activities of my life during that time and I don’t think I missed a beat-well perhaps one or two. But for about six weeks, I needed help. At the end when the crisis had passed, I told Ed, my counselor, “I would have made it through this without coming here. I would have come out on the other side. I am strong and resilient. But I would not have come out on the other side with the richness, the insight and growth had I not come here for help.”

For the present and future caregivers- yes, you might make it through it all without asking for or accepting help that is offered. Someone to sit with your loved one for an hour while

you take a nap. Someone to pick up your groceries – whatever it is that would make one part of your day easier. You are, after all, strong and resilient. But if you pray for the particular strength (and it does take strength) to accept the helping hands of these present day apostles among us, the people sitting here today – like our Lord did- imagine how your caregiving life would change for the better. I guarantee you will come through it and out on the other side richer, more empathetic, more grateful, less exhausted. And you will be surrounded- totally enveloped by the untold grace only God, His love and His community can provide.. Amen