Born to give
Contributor: Shelia Sims
Recently I was talking with an individual that seemed overwhelmed with their “lot in life.” They asked me “how do you do it?” They were referring to what is and has always been second nature to me – taking care of loved ones that are in need. The difference, I told them, was that I was “born into it.” I would be at a loss without it. It helps fulfill me but it is not without a cost. I reassured them however, that they are not alone in their feelings of sadness and stress, of insufficiency, frustration or pain.

As John Donne wrote, “No man is an island unto himself,” we are all connected. After that conversation I reflected on my own life and the opportunities that I had over the decades. I have from time to time been referred to as a “caretaker” but I never seriously considered the term more than loosely. After talking with my friend though, I looked up the formal definition of “caretaker” and found: “One that is employed to look after or take charge of goods, property or a person; custodian.” My opinion is that our changing roles in society, and the growing population of persons needing assistance at various levels, leave this definition lacking.

As most of you reading will immediately recognize, today’s “caretakers” are usually immediate family members who give from their hearts and without compensation, at least financial compensation. Our compensation is much greater; it’s in the twinkle of an eye, a smile, a touch or maybe something as vague and undefined as our personal innate knowledge that it is just the right thing to do. When I say I was “born into it,” I mean that literally. I was the last child born to “aging parents.” But I never thought of them as “old.” My mother was always there when family members were in need. It may be something she considered as simple as going to clean house weekly for an uncle who was left with four small children when is wife died in child birth.

Cooking a large meal for the family while she was there was no small feat either. While I played with the children, she worked and hummed. She seemed tire less because she never missed a step when we got home; there were seven more to prepare dinner for. My father was one of the first men to be there when a family member, friend or neighbor needed a hand, whether it was the result of illness, death or routine need, such as putting up a fence or building a barn.

Respect, responsibility and generosity were the cornerstones of our education in the home. My father had adult onset diabetes and nearly lost his life before it was medically diagnosed. His recovery was slow and never complete. He was insulin dependent. My mother’s attention to the details of his diet, her recognition of his symptoms, assisted him in living a long life. By the time I was 10 years old, I had learned to monitor his caloric intake, how and what he could eat and how often he should have snacks.

He had always loved to hunt and fish, but when once my brothers were grown and gone, it was considered too dangerous for him to go alone. I became his right-hand “man.” I packed our cooler and went with him into the woods hunting with or without the dogs, by day or by night depending on the prey. I learned the advantages of fishing quietly and the enjoyment of nature in my father’s company. I remained close to my parents, assisting one of my brothers with their aging care and health crises.

When my father passed on, I must have un-conscientiously slipped an aging aunt into his vacated slot. She was, for all intents and purposes, alone in that her two children lived at great distances. I spoke with her daily, visited multiple times weekly to help with housekeeping, cooking, laundry and medications. Before the need arose, I took her to visit assistive living and nursing homes. As her medical surrogate I wanted to know that I knew her preferences for later life care. As her health deteriorated she wanted to stay in her home as long as possible.

I screened applicants for room and light housekeeping. I assumed her financial affairs as well as responsibility for home maintenance and repairs. Finally, she came to live with me. Eventually her level of medical need resulted in nursing home care for the last few weeks of her life, but I believe that for her last 25 years I truly helped her maintain her dignity, independence and quality of life. The experiences with these family members prepared me to support my children in their quest for quality of life.

I have twins that have mental health problems. They are often difficult to deal with and their doctors offer little to help. They both have addiction issues – it seems to be their way to try to self-medicate. They are both bipolar. One has substantial anger issues. They both have high IQs but are their own worst enemies. One has added physical inabilities resulting from a serious auto accident a couple of years ago. He has recently undergone a cervical fusion and is scheduled for a multi-level lumbar fusion next month. He has permanent although minimal neurological deficits from the cervical injury.

The degree of lumbar damage remains to be determined. He is married to a young lady that has bipolar disease, multiple personality disorder and also has addiction issues. In twelve years of working, she has never been able to hold a job longer than a few weeks. Their only child has epilepsy and other seizure activity of an unknown etiology. The seizure activity is present daily, although it may not result in an all-out seizure frequently.

My granddaughter also has been diagnosed with ADHD and Central Auditory Processing Disorder. She is in the second grade this year and the school is providing her assistance. I am presently working with a pending claim for both Social Security Disability and SSI for her mother and SSI for her. Now that it appears my son will have some long-term physical residuals in addition to his mental health issues, I will be pursuing a Social Security application on his behalf as well. Further, the family’s total impact results in unstable housing and I am working with them towards housing assistance in an attempt to reach some degree of family stability for both housing and education.

The other son’s addiction and mental health issues have driven a wedge between him and his children. He is now divorced, but fights battles for weeks or months on end with alcoholism and other drug dependency issues. He started self-medicating in search of “peace” but through the years his addictions have only added to his burdens, exacerbating his anger and on more than one occasion resulting in his incarceration.

I re-married about a decade ago. My wonderful husband has a litany of medical problems, has been physically unable to pursue his life’s interest or travel to any extent for more than 20 years. He now has very limited ability to ambulate and relies on his power chair. He is very hard of hearing and to say that communications are difficult, at best, would be an understatement. He frequently misunderstands, but when a person repeats loudly – he often accuses the speaker of yelling. He suffers daily anxiety attacks and refuses medication unless dispensed personally by me.

His visual acuity is severely limited and cataracts have now clouded even that. Although doctors told us several years ago that his pulmonary and cardiovascular systems were failing at an alarmingly accelerated rate, that he was not a candidate for any surgical intervention. He is Coumadin dependent due to his high frequency of pulmonary emboli usually resulting in extended hospitalizations. His mental health is failing and he is always applying a “conspiracy theory” to society in general, people that he has minimal contact with, his extended family, his doctors and occasionally I am included in whatever conspiracy is afoot that day.

No matter, I still love him, respect him and use the resources ingrained in me by my parents, available to me through society, extended by the growing knowledge of the medical community and granted me by God’s Will to make his remaining days as comfortable and peaceful as possible.

I write this, not for your sympathy or empathy, but only to say, whether you are a fulltime, part-time or occasional “caretaker,” you are not an island. Do not try to “go it alone” and do be sure to respect yourself and accept responsibility for your own wellbeing. Unless you take care of yourself, you will be unable to take care of those you love so well. Be generous to yourself equally. Charity starts at home, so be charitable to yourself while you are giving of yourself.