The Gifts of Care Giving – Time!

By Patricia Butin

My friend Tom lost his mother last week. This week he is too sick to go to work. His mother was his last parent to pass. His father died five years ago. We spoke on the phone every day these last months, as he tried to be at his mother’s home several times a week to do for her the things she could no longer do. She lived alone, at the age of 93, still able to be up and around, to cook and drive her car. But it was obvious that she was steadily losing ground. Tom is 70, the oldest of five, retired, and even though all his siblings are still living, they live away, some in other states, and still employed, so could not be there to help her on a daily basis. Tom is prone to depression anyway, and my talks with him often ended up with his despair, knowing her time was short, being very palpable. But each time, I would say to him “consider each day you still have her as a gift. Use that time to get to know who she has been after you grew up and left home.” For Tom’s mother, she was able to stay in her home, a gift beyond measure for our elderly as they come to the end of their lives.

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Side bar

According to caregiveraction.org/resources/caregiver-statistics, more than 65 million people, 29% of the U.S. population, currently provide care for loved ones with health and age related issues. They spend on average 20 hours a week providing such care. Approximately 66% of family caregivers are women, 49 years of age or older, and 39% of them still have children under the age of 18 living at home. There are currently public discussions in many state legislatures regarding what to do to help such unpaid helpers because such care giving has become so increasingly prevalent. Elder-care paid leave from jobs, tax exemption, both at the state and federal levels, better access to help resources via the phone and/or compute, are many of the issues being considered.

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The overwhelming facts of our rapidly aging populace is that not every ailing elderly person requires a nursing home situation and many of those who do lack the financial resources to one.  According to the latest statistics from the Center for Disease Control and Prevention’s (CDC) newest numbers, 1.4 million residents occupy 15,600 nursing homes, 69% of which are for-profit establishments. The need for even more at-home care givers will also rapidly expand along with that aging population. But many have non-life threatening health issues that still preclude their living alone and so need some form of care.

While such situations may seem to be daunting to those suddenly thrust into the position of providing care giving, there can be an upside to taking on such responsibilities, especially where siblings or parents are the ones needing help. I believe these benefits are gifts of time to us. I have come to that conclusion after being fortunate, in my lifetime, to take care of several of my loved ones as they neared the end of their journeys.

When I was ten, my brother and I were sent to live with our mother’s mother who was at that time caring for her own 80 year old recently widowed mother. Great Grandma suffered from uterine cancer but would not undergo radiation treatments prescribed by her doctor. She was living in an apartment at my grandma’s home. We called her Ma and she was a lot of fun to be around. After school, we would run up to Ma’s bed-living room and play Wahoo with her while she told us stories about her own childhood and how she had come out to Iowa in a covered wagon. What a gift it was for us kids to be able to spend that time with our great-grandmother, and a gift to her to be surrounded by people who loved her. She believed the cancer would take her before the pain came and she was right. She left us quietly one night in her sleep. I have never forgotten her will power and the resolve she taught us by her example. Her Wahoo game board hangs in my living room, reminding me always of those gifts of time.

My mother’s mother suffered her first stroke at the age of 81. The doctor told my folks she would have to go to a nursing home. Dad said “No”! They took her to their home and cared for her there, with Dad helping as much as he could while still working 50-60 hours a week. Five years into that period, Dad suddenly died. Soon after, Grandma had her second stroke and from then on was bedridden. The doctor again said nursing home and Mom said”No”! With the help of a hospital bed, hydraulic lift and a commode, she cared for Grandma alone for another five years. During that time, I would go out to Mom’s several afternoons a week and stay with Grandma so Mom could have some respite time. In spite of two strokes, Grandma never lost her speech ability nor suffered any cognitive ability. She simply lost her strength and so could not take care of herself. During those afternoons, I would help her bathe, trim her toenails, comb her hair and make sure she took her meds. We had time, a chance to visit, watch her favorite TV shows, and she would tell me stories about her childhood, her family, her two marriages, and her struggles raising her children alone. For me, living close to these two strong women was an insight into how my life might look like when I was an older adult, from marriage through middle age and beyond. An insightful gift many young people miss. For my grandma, she was in a safe, loving environment, surrounded by those who loved her. Her gift from us.

In January of 2002, my brother Morris was diagnosed with lung cancer. Doctors thought it was operable, but while we were trying to decide which of our houses (his, mine or our mother’s) we would sell to pay for such surgery, the cancer spread and surgery was no longer an option. He was gone by November. In the meantime, because he was a self-employed dog groomer and breeder, Morris had no health insurance, and had just started the application process for Social Security. He was 63 years old. I worked close by so we talked every day on the phone. I was able to take him to his radiation and chemo treatments and help him get his affairs in order I stopped by after work each day to eat supper with him. I also made sure he took his meds, I cleaned his house and fielded phone calls from his many friends and former customers. We had a chance, on those days, to reconnect as adults, to talk about our childhood, and to learn about special times in our lives as adults that we missed because we didn’t live together during those years.  Morris never married or had children, and our mother was not able to take care of anyone at her age (she was 83 then). The months went by too fast and after he passed, I was grateful for the great conversations we had about our lives, something I would have missed had I not spent that time with him. Such a treasured gift!

Two years later, our mother had a spine injury that landed her in a nursing home for rehab. I was still working full time but would stop there every day after work and eat supper with her. One night she was upset and with tears in her eyes, said she knew she would have to be in that place the rest of her life. “No, Mom. When your 17 days of rehab here are up, (that’s all Medicare allowed at the time), I’m taking you home with me. You don’t need to be here after that.” I’m not sure she believed me because she was pretty quiet the rest of the meal.

But that’s what I did. Because she was able to be up and get around on her own for the first year, we were able to make it work. I was still working full time but was able to get some help in each day while I was gone,  to fix her lunch and help her with bathroom chores. When I got home at night, we ate together and spent the evening talking about our day and reminiscing about old times. Eventually, Mom was diagnosed as being in the mid stages of dementia, and began to lose memories and her ability to be up and around. I had a hospital bed brought in and she was bedridden after that. Because Mom, like her mother had no systemic health issues (cancer, heart disease, etc.) she didn’t need to be in a nursing home for care. By each evening, the effects of her meds wore off, she tired early and began to lose mental ground. But she occasionally told me how grateful she was to be at home, surrounded by her loved ones, and not alone. She did want me to stay in her room by her bed at night when she was awake. She never expressed it but I knew she was afraid to be alone. I discovered many things about my mother in those long evenings of conversation. We tend to think our parents’ lives begin when we are born, so we don’t always know what they were like before us. This is the gift part. If you are lucky, as my Mom, her mom and me, each in our own situations, were through these care giving family episodes, you have the time to learn about those years before they are lost forever, and so add to the family chronicles. More importantly, our loved ones receive the gifts of our time and devotion and care when it matters most.

If you are faced with the need to provide this loving care for your loved ones and can adjust your life to do so, do not be afraid or reluctant to become a care giver. The rewards are life-enriching for you and life-affirming for them.  Such gifts.

Now that his mother has passed, my friend Tom is struggling to deal with the unexpected emotional toll, the primary reason for his being sick now. His is a typical care giver aftermath when a parent, especially one you helped take care of at the end, passes. But he has told me how grateful he is that he had that time with her, and he is comforted in knowing they shared that mother-son love, always.