By Patricia Schuler, M.A.
"Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together".
-Vesta M. Kelly
Becoming a family caregiver is not something that most people plan to do. Usually it just happens. It can happen when you give birth to a special child with physical or learning disabilities. It can happen if you had a sibling that survived a car accident but lost significant abilities. More commonly, it happens when a parent ages.
I suppose my first encounter with caregiving occurred back in 1978. My father had cancer for three years before any outward signs of it appeared. Only in the last three months of his life did the disease seem to visibly take over. For me, those three years seemed an eternity and despite 27 years having passed, my young mind could not accept seeing my father as anything but invincible. The memory of how cancer ravaged his body is something I can't ever forget - or forgive, if you can understand that. It was tragic on every level as cancer always is. The ordeal took its toll on everyone involved, especially my mom. She worked full-time while my sister and I were in school and nurses tended my father at home during the day. Each night, mom woke up to administer dad's medication several times.
Bringing a terminal patient home to die was unheard of back then, but it was my father's wish. My mother respected that and made it happen. Those months were grueling for her and all of us, both emotionally and physically. We were blessed with thoughtful friends and neighbors who helped with cooking and errands, but couldn't erase the pain.
Almost twenty years later our family had another shake up when mom was suddenly diagnosed with a heart arrhythmia. Several surgeries resulted in use of an implanted defibrillator, then a pacemaker/defibrillator combination to treat it. All of my old anxieties about my dad resurfaced as I feared losing my mom. In fact, I later came to realize I may have been a part of mom's problem. Sometimes the best of intentions can have negative effects on people we care about.
Part of Mom's treatment required quite a few medications that had side effects; one of them was memory loss. Because my aunt had just recently died with what seemed to be Alzheimer's disease, I panicked. I had moved in with mom and slowly started to become a caregiver. My anxiety caused me to take over everything. I did the cooking, the organizing, the bills, the shopping, managed her medications, and researched all of the latest medical and pharmaceutical information related to her condition. It was my attempt to find control of the situation. Luckily the memory loss improved as her condition stabilized and my fears of Alzheimer's disease were alleviated. I learned that there are many causes of dementia such as brain injury, strokes, and infection, HIV, Parkinson's and brain tumors in addition to vascular related dementia.
As fate would have it, mom later moved into a senior residence in 2004, where she is now. Interacting with other seniors has brought out the more independent side of her. Despite learning so much about family dynamics in the course of earning my masters degree in psychology, my own psyche fell prey to all of the emotional vulnerabilities one faces in a crisis. These human vulnerabilities are what bonds us to each other but also make us sometimes dangerous to one another!
One of the hardest parts of any parent's illness on an adult child is the acceptance that our parents are vulnerable and that we may have to make decisions for them - even telling them what to do. It's all there in the ten commandments- the fundamental rules of our Christian-Judeo society - we must honor our fathers and mothers. They were our first authorities in life and we've loved them unconditionally.
One of the best things about modern medical research, especially in the health and psychology arena is that we are armed with so much more information about everything than we were back in 1978. We are living longer and healthier. The baby-boomer generation is aging and it has never been a better time to be a senior. More services are being created to serve seniors and as they grow, the industry will get more competitive - making the seniors the beneficiaries of that.
Almost 75% of all baby boomers will reach full retirement age in the next decade. Unfortunately, according to the NYS Council on Children and Families, about one in three New Yorkers 50 years and older report having some kind of disability - usually a physical disability. That means that their expenses for medical services can be four times greater than for individuals without such disabilities. The same report says that the expenses are greatest among individuals who live alone - most often women. On a positive note, home care services have been linked with a reduction in admissions to long term care, making people independent longer and keeping the costs down.
We are leaving behind the days when nursing homes were the only option left when Alzheimer's disease or other disabling diseases set in. Home health agencies have become an established part of hospital discharge plans for those patients that can't manage alone. As our society grows in compassion for the issues that seniors face and seniors lose the fear of being abandoned, a more positive and healthier lifestyle for everyone may progress.
Adult children often find themselves feeling guilty, believing that they ought to be companions to their parents - especially when ill parents resist care from others. The resulting feelings of helplessness to handle it all can be overwhelming. In today's world the truth is that often times there isn't the time to devote to caring and giving one's undivided attention to anyone, even when the desire to do so is there. There are career demands, child-rearing demands and marital demands. Senior patients understandably don't want to give up their independence and their adult children don't want to take that away from the strong and competent parents they've always known. With the mounting pressure that often ensues, family relationships can become too close for comfort.
This is where services such like home care come in. Buffering the stress between family generations, a caregiver can offer a much needed ear in addition to reprieve from tasks family members can't do or don't have time for. Many of them develop strong bonds within the family and become a vital part of care. Most of the seniors needing assistance worked hard their entire lives to build and provide a home for their children. With declining health, their home is what provides comfort and solace. This is what home care is all about. The clients of Home Instead Senior Care range from those that vitally need us to those in which we provide convenience.
In my new role as Community Service Representative I hope to learn more about the needs of seniors and their families; their hopes and wishes. Like it is with children, when we make life better for our parents, we are paving the way for our own old-age. As we strive to improve life for ourselves, our children will benefit from that. Also, they say you can judge a society by how it treats its elderly and it's poor. With the right amount of education and caring, I think that we're on our way.
2006 Patricia Schuler