Shared story: There is life after caregiving! Part one: Our journey

Today’s shared story is by Phyllis Girdwood, a volunteer adult ministry associate director at a satellite campus of Community Christian Church (Naperville, Illinois) located in a senior living community called Carillon in Plainfield, Illinois.

“How long, Lord?” That question resounds in every caregiver’s mind often, maybe several times daily.

It echoes at the beginning of every long, hard day, and at the end of most dark nights as you sink exhausted into bed.
It reverberates when you must take tough trips for tests or doctor appointments, or maybe anywhere with your loved one.
And it recurs in the midst of any of a myriad of other duties that this role requires of you.

Whether you’ve been caregiving for a month or a decade, you’ve asked this question. And every time it comes to mind, you likely dismiss it because you don’t want to know the answer! You know that the end of your 24-7 caregiving will mean either your loved one’s condition requires their moving to another location, probably a nursing facility, or their final homegoing and permanent change of residence.  

Let’s try to remove any guilt this question brings, and admit it’s not really about their condition, but rather focused on doubts about our emotional strength and physical stamina. Hopefully, you’re learning some healthy ways to manage stress and getting some relief and breaks from these demands. If not, please seek help from other family and friends, and an occasional break to renew your spirit and energy.

Difficult diagnosis

My husband, Larry, was diagnosed with Stage Four lung cancer, which knocked him off the kidney transplant list. Further tests revealed that the cancer was “treatable, but not curable.” It took us a while to focus on the “treatable” (what we could do) versus the “not curable” over which we had no control.

Kidney failure turned out to be a blessing in disguise, as his best option was a simple daily pill for the cancer. Simple, but expensive. Its $100/day cost required that I continue working my state job for the insurance to cover it. That powerful pill kept the cancer at bay for almost four years, while kidney disease was controlled by diet. When dialysis was inevitable, we opted for home hemodialysis five times weekly, which he completed with my assistance.

Phyllis and Larry Girdwood, about 10 years ago.

During that time, he was able to continue ministry, we enjoyed a dream trip to Hawaii early on, and several vacations and trips to our kids, taking dialysis with us on the road. By the time cancer metastasized to his back and then his brain, his body could filter the radiation and then chemo treatments necessary to slow it and avoid pain.

Meanwhile, I continued to work full-time with a daily hour-long commute followed by assisting with a four-hour dialysis treatment at night. We finished most nights at midnight before sleep and the next 6 am alarm. That schedule continued his last two years until cancer finally ended his almost five-year battle.

Blessings then and since

We were blessed with an amazing church family who took him to treatments and a couple of friends who assisted with dialysis and did their best to care for any needs they could. It was still an exhausting time, made a bit easier by the blessing that we had more time together during dialysis and that the meds never altered his mind.

During the following months and now years, I’ve learned that God will guide and restore your life after caregiving too, when you’re open to His Spirit’s leading.

Our oncologist finally gave us a time frame, suggesting in August of 2013 it would be a matter of weeks. After four weeks, his weakened condition made dialysis too difficult for him or me to do, so we went to a center 15 miles away three times a week. His brother, our associate minister, and I shared those trips while I managed the rest of the caregiving at home. I had to trust his care to others and specifically a dialysis team who had a lot more experience with that but didn’t know my husband like I did. It was one more step in giving over, not giving up.

We also began hospice care at that point. Every morning as I left for work, an aide arrived to assist with baths and other care. The RN came late morning to assess health needs. Our associate whom my husband was mentoring, came almost every day for lunch followed by sermon prep and other ministry areas in the afternoon.

And I must give credit to our granddog, a sweet little Maltese who was his constant companion for four months, living with us while our son and daughter-in-law relocated from Baltimore. When my husband had to move to a daybed closer to a bathroom, she would sleep with him and come jump on my bed if he stirred in the middle of the night!

Weekends were more difficult without hospice, though our family and friends came to help as their schedules allowed. Many of these were “last visits,” which we treasured and enjoyed from out-of-town friends and family.

Posing with family membrers during their Holiday Weekend not long before Larry died.

One of our most treasured memories is a “Holiday Weekend” with all of our immediate family. Larry asked if we wanted to do Christmas in September, and my daughter-in-law suggested we celebrate as many holidays as possible so we’d have those memories when they occurred the following year.

We began with our usual Thanksgiving dinner followed by reading the Christmas story and a simple gift exchange.
We celebrated New Year’s with dessert and sparkling juice.
Next was an Easter egg hunt in our backyard and sharing the resurrection story with contents from the plastic eggs.
Finally, we covered the patriotic holidays with sparklers and flag-waving. Those memories still brighten those holidays for me nine years later.

Re-ordered priorities

When your role is over or reduced by added help or moving your loved one, it’s time to re-order your priorities: How much/how often does your loved one need you now? We all know those who spend every waking moment with their loved one in a nursing facility. While our intentions to share every spare moment with them are good, this can be just as exhausting as full-time caregiving. Each situation is different, so try to assess how much you’re actually needed and how your presence helps or at times hinders those caring for your loved one.

Might your loved one need some time alone, too?

Next week, Part two: How I coped after caregiving