(Note: Karen was responsible for her father’s care for 14 years. Ralph Henderson died in a Toronto nursing home in 2000 at the age of 93.)
Nobody thinks they will become a family caregiver. One day you are a daughter or son, occasionally helping out your parents. Seemingly overnight you become a case manager, disease specialist, chauffeur, researcher, care advocate – all in support of an aging parent.
How did it happen?
Let me tell you how I became a caregiver for a 78-year-old father who at the time suffered from spinal arthritis, vascular disease, forgetfulness and an overwhelming sense of displacement after the death of my mother; let me share how a 14-year caregiving journey completely changed my life.
What I am talking about is the new mid-life crisis.
I am the third of five children, one son and four daughters. I’m responsible, caring, sensitive, an achiever…prime caregiver material. I took on the caregiver role unknowingly; never in a million years did I expect to become a parent to my parent. My siblings were more than happy to let it happen. Remember the phrase: get the family involved.
My mother died in 1986 quite suddenly but very painfully from cancer. I was never given the chance to be a caregiver for her; she died too quickly. But when caregiving does start, it can happen gradually or suddenly with a desperate phone call in the night. However it starts in all probability you won’t be ready.
My dad was living on his own after my mother’s death; I would go up for dinner, shop and generally watch over him. But my relationship with him had problems. Many times I drove home after these visits in tears, feeling frustrated, angry then guilty about my anger. How could I be so heartless with an aging parent who had lost his wife, most of his friends, who was so lonely? It didn’t occur to me, however, to sit down with my father and lay things out on the emotional line – to stand up for myself as an adult and to redefine our relationship. Remember the words…define the relationship.
Just after I had finally convinced my dad to allow a housekeeper in his home, he suddenly broke a hip. Surgery was successful; during rehabilitation, however, he had a stroke and lost a good deal of his communication ability. As a result of the previous years filled with anger, guilt, frustration now made worse by bedside vigils and more constant demands, I felt myself falling apart but I didn’t understand how. Nor did I take the time to find out.
My father moved home from the rehabilitation hospital to his home with the housekeeper and I moved into a living hell. You may think I got off easy because I wasn’t living with my father…not so. Phone calls came morning, noon and night because something new had been added to the mix…increased cognitive impairment or dementia. I knew he had been clinically diagnosed vascular with dementia but to me that meant increased forgetfulness. Nobody sat down and told me what dementia is… how it would affect my father’s view of the world and how it would affect mine. I didn’t ask. Remember to ask questions.
I found I was operating like a personnel manager, locating appropriate help, supervising, evaluating. I was a banker, a medical advocate, a researcher…you have to have an expertise in more than you can possibly know about when you become a caregiver. I cried a lot. And I didn’t feel appreciated. Remember the word exhaustion
Six months later I was diagnosed with depression. I remember it clearly; an overwhelming feeling swept over me… I felt completely unable to cope, as if someone had plucked my mental capacities from me in an instant. The stress had finally won. I went on medication and heard all the sage advice – set limits, you’re doing more than anyone can expect – but it took me years to assimilate these very simple directives. I learned that until you are ready, no one can make you change, set limits, be good to yourself.
Remember the words caregiver stress.
The following December we decided to move dad into a retirement home. I had to coerce one of my sisters into getting involved in the moving process but I finally got some relief from the verbal harassment. Guilt, however, took its place. How could I uproot my father from his lovely home?
I constantly had to remember his multiple health problems – crippling arthritis, increasingly severe incontinence, aphasia (the inability to speak) and a dementia which now caused him to become disoriented and fall. I’ll never forget the first time I saw him on the floor, unable to move and help himself. But guilt still reared its ugly head.
Try to forget the word guilt.
Things went along uneventfully for about 9 months. My father had a beautiful smile; I did everything I could think of see that smile. But I could never get away from the heartbreak of watching a man who I knew was once my capable, commanding father unable to identify a tree or eat without a bib.
Suddenly dad had a second major stroke. I was told to gather the family; I was told dad was going to die. I prepared myself for this; I knew it would be a release for him. But I also had to admit that it would be a release for me. But he did not die.
Remember the phrase emotional roller coaster.
He couldn’t return to retirement home level care and so began another painful odyssey…selecting a nursing home, a decision my siblings (who had arrived for the funeral) and I made.
So I completed the last step of this incredibly painful journey; I placed my father in a nursing home where he lived out the last three years of his life. I believe he was well cared for. A male companion spent time with him when I could not. He went on outings, saw movies, had the 24-hour care he needed. In his lucid moments he wanted to go home. I knew he couldn’t. Somehow I lived with this.
So what does all this mean? Research indicates I was a fairly typical caregiver. What it doesn’t indicate is how my life was changed forever. I lived with sadness and guilt as companions while I watched my father slowly deteriorate. I was his only connection to what he once was – a huge burden but also an immense honour. Who I was and what I did, directly or indirectly were responsible for all the happiness my father felt.
The emotional costs were high: at times I still feel lost. I still ask: Why me? Was I meant to be my father’s keeper? Why couldn’t I get a better emotional handle on this experience? How could I, “little miss perfect” lose control over my life?
I lost work opportunities; I lost a personal relationship. I lost sleep, self-confidence and my health. I felt isolated from and terribly angry with my brother and sisters. I was lonely…people who weren’t caregivers really couldn’t understand this pull you have to a parent.
But caregiving also changed my life for the better. The formation of Caregiver Network and How to Care gave me personal direction I’ve needed for years. I have become inventive and knowledgeable about the roles of caregiving and long term care and it’s now my life’s mission to pass along to others what I have learned.
Most of all caregiving for me was a journey towards self-knowledge. I have found emotions and capacities I didn’t know existed within me. I’ve also been forced to recognize some limitations!
I loved my father, difficult as he was. Today I appreciate the moments of joy we had together and am eternally grateful I was able to reaffirm my father’s dignity and freedom of choice until the last day of his life. There was no one else to do it. Remember to appreciate the joy.
Every caregiving experience is unique; there are no rules or handy templates.
However what I can tell you is this; try and prepare yourself. Ask questions; gather information. Define your family relationships. Set limits. Recognize signs of stress and ask for help. Be good to yourself. Value yourself. Do your best; celebrate your achievements.
Remember to make plans before you find yourself in crisis. Face the realities that aging parents will inevitably present.
The opportunity to be a caregiver can be the hardest thing you ever do. But it can also be a great gift, worth every pang of guilt, every frustration, every heartache and every joy.
Did you know…?
For the first time in human history significant numbers of human beings are entering
middle life with one or more parents still living.
- By 2016 Canada will have more seniors than children under 14 years
- The over 85 age group is the fastest growing in Canada
- In 1960 only 16% of us had a surviving parent. By 2010 60% will have a parent living
The need is greater than ever for Canadians to plan for long term care because we are living longer and have fewer people around us to provide care when we will need it.