June 23, Lessons Learned–Daughter as Main Caregiver

Helping Dad through his illness

By Deborah Tompkins Johnson

Special to the Gazette Packet

In the article published in honor of Father’s Day, I wrote about realizing my dad expressed his love through generosity. Today, I am sharing lessons I learned as I assisted Dad after he contracted a rare infection in 2016 and later had escalating symptoms due to several chronic health conditions from 2016 through most of 2019, when my dad died, due to heart failure.

What an experience it is to be the daughter but many days feeling and having to act as the parent, making decisions about where to live, what to eat, finances, health care, etc.

Through it all, I learned some lessons worth sharing.

Lesson One: Listen Intently. Nurses and doctors may make statements in a routine manner because they are constantly giving advice and instructions to many patients and caregivers. Every single statement they make to us as caregivers warrants thoughtful consideration. We must also intently listen to our loved one, even though some statements might seem to be made in passing.

In one instance, I remember a surprise visit to Dad. When I entered his apartment, he said, “Don’t surprise me like that. I have a weak heart.” I took it as a joke as that was Dad’s manner. On the other hand, I knew he had been diagnosed with congestive heart failure at that point. As I think back, I believe during those months, Dad was in more discomfort that I could see or comprehend. My Dad’s stature remained strong until his very last day. Dad was a retired army officer, fought in Vietnam, had solid muscles and always had a deep, hearty voice. To say he was a commanding figure is an understatement. However, I learned the way people look or carry themselves does not always indicate their condition.

Lesson Two: Have meaningful and deep conversations. Dad and I were together a lot, but upon reflection, I realize we had not had enough of the deep meaningful conversations needed given Dad’s health challenges. He told me Army stories. We talked about Sunday morning sermons, world matters, American politics, sports, family and friends’ birthdays and other special dates. Oh, did I say sports? However, it would have been cathartic had I broached even deeper conversations about my mother who died at 39. I was 15, my dad was 43. Or about my brother Stephen, two years older than I, who died at 42 years of age. Oh, how we could have reminisced, laughed or cried together. I could have asked him many more times, “What are you thinking? What’s on your mind, today? What’s on your heart?” Do ask. Do tell.

Lesson Three: Personal Touch — So Important. I would always greet Dad with a hug and kiss and did the same as I was preparing to leave his apartment, hospital room or rehab center. It is difficult to share the following: My Dad had a portion of his lower right leg amputated two months before he died. I still greatly grieve the loss of a portion of his leg. But whenever I saw Dad after the amputation surgery, I would always touch and lightly rub his thigh a few inches above the amputation site. Don’t forget the personal touch.

Lesson Four: Pull out the family photographs — often. Early on I had taken some old family photo albums to Dad’s apartment. Additionally, I created photo albums for him of recent events and visits with family and friends, especially the album for his 90th birthday party in 2018. Still, I wish I had pulled the photographs out and looked at them with him more often. I say, reminisce together with photographs and scrapbooks regardless of age or state of health of your loved one. For we know not the day or the hour.

Lesson Five: Provide stationery and greeting cards. For as far back as I can recall, Dad was faithful in sending greeting cards to family and friends for every occasion. Providing your loved one with an ample supply of cards and stationery, allows them to be an instrument of outreach. Sending notes or greeting cards provides the opportunity to be proactive in offering happiness, hope and encouragement to people they know and love, but are unable to socialize with as they once did. Often the recipient of the card will make a call of thanks. When your loved one is in the hospital, in rehab, or assisted living, those phone calls from your loved one’s relatives and friends are precious.

Lesson Six: Encourage them to listen to music. We know music can soothe, relax and uplift. On his own I think, Dad found a television channel that played music 24-7. It even made me happy when I would go into his room or apartment and hear music. Yes, do help fill the void of silence by providing some means of having music available to them.

Final Thoughts: I hope you will consider the lessons listed above. Very personally, let me also share that I prayed a lot for my dad. I also learned it was important for me to pray with my dad. Once again, while the lessons learned above can be helpful, most meaningful is to do all we do for our loved one with love and compassion. It is not just the support, but more so the love and caring compassion that our loved one and all of us need. We have heard it before and it is written, Faith, hope and love, but the greatest of these is love.