Living With Polio
When the “Cared For” Becomes the “Caregiver”
presented at FICCDAT Conference, Toronto, Canada, June 2011
I found my mother’s diary recently – the one she kept during the 1950s when we were an Army family living in England. She’ll be 100 in 8 weeks. She lives with me, deaf, unable to walk & rapidly losing weight. She has dementia which roller coasters between inconsolable agitation and sleeping for days. During her lucid moments, she’s sweet – fascinatingly childlike – and still capable of the reciprocal love for everybody she has always had.
Mom kept this diary for five years – the five years following my onset of polio paralysis in 1952. My own memories of that time are vivid, of course, but as I read this treasure of history, now from perspective of “caregiver” myself – I realized quite profoundly the impact of those events were different for her. Gave rise to may thoughts…such as the concept of BURDEN.
I never thought I was a BURDEN – she never described me that way – learned it from others outside the family – society. Yet, raising four kids, often alone, woman’s work, one with extra needs at a time of no formal community support couldn’t have been easy.
All children – even one of triplets – have no idea of the anxieties, stress, sacrifices, responsibility and “burdens” of caregiving. Yes, BURDENS – isn’t it interesting how we never think of or describe child care as a burden in the same way we think of it when someone in the family is disabled and dependent?
At the back of the diary she had tucked a scrap of paper with some notes she wrote later…
We had just moved to a small village – I knew no one and my husband had just left for northern England. The day he left one of my children took very ill – in fact she was taken (away) by ambulance. It was not long before the hospital phoned – the health inspector told me to get there in a hurry as she was dying and to bring my husband. How could I do that? I was at home by myself with four children ranging in age from 10 years to a few months. Fortunately, the health inspector offered to drive me and his wife came and looked after the children.
When I arrived at the hospital I found she was in a coma…. As I was going out of the door of the hospital – someone spoke to me in a loud voice saying “God Works in a Mysterious Way, His Wonders to Perform.” I looked around to see who was talking to me. I was alone. There was no doubt that was a heavenly message. I realized then that I was to cast my burden on the Lord. I found the 23rd Psalm very comforting.
It was amazing to me the simple practical kindness of people in a much less complex society.
The health inspector and his wife came to help? Would this happen today? (Perhaps – in some small village somewhere in the world?)
There were no formal support systems – no social workers, grief counselors, no family. My mother turned to her religion which – only strengthened because of this and sustained her journey throughout the rest of her life.
it was not easy then. Parents could visit for an hour on the weekends. Patients didn’t have phones. Once home again – 2 years later – the daily job of dressing and undressing an 11-year-old, appointments, dealing with frequent illnesses as well as the ups and downs of three other children fell to her. In the early years, I was life-threateningly sick often. In the first 18 months of my coming home, there were 118 diary entries relating to appointments, the fear of polio whenever a sibling was sick, and dramatic emergency situations, such as my father flying back from Europe on a Sabre jet in ½ hour because I was supposedly dying again.
March 29, 1955 – Received word Audrey very ill (shock). Went to hospital. Condition very bad. Herb called back home. “Returned home – Moulin to London by Sabre Jet in 38 minutes. Customs closed and landed at Marsden.”
What were her support systems? Friend’s parents included me – new neighborhood – introduced herself and new friends. I was informally “adopted” by a button salesman who came to the door and his wife. They had no child of their own. Before long I spent weekends there, even weeks during the summer, and mom went off to visit her friends elsewhere – even to Holland. (Fun for me – never thought of it as “parent relief” or “respite care” – neither did they. On several occasions, a live-in au pair was hired – but the havoc caused by one who left my toddler sister alone and another who chased my brother with a knife wasn’t worth it. Ultimately, my mother’s religion and generosity towards others carried her through thick and thin.
And then there was her advocacy – the battle to find a school that would take me when even the school for handicapped kids wouldn’t (I was too handicapped), to find a doctor who would sign the medical for University entrance when our own refused (what’s the point?) To get me into Girl Guides, on school trips, to look puzzled when someone suggested a lovely place for kids like me.
First and foremost, she was a MOTHER to all of us… (me lying about therapy)
My mother lifted me until she dropped me at age 75 – not because I wanted that. I had a lift and everything in place – but from her perspective it was quicker, easier, faster and I, a busy career person with a full-time job at this point didn’t argue too much. By this time, my sibs had grown and gone, my father died age 60. I was the wage earner – she managed the home front. As mother and daughter we were good friends, respecting and enabling each other’s independence. She did the daily basics – I worked out a shower once a week at work. She had her daily life and projects and went on trips when she wanted and I did likewise, having learned how to make my own arrangements by age 16.
As she began to age I began to see where I came from – the independence, the determination, the single mindedness of purpose. It was aggravating – but also funny. Sensitive to her needs, I slowly introduced a high school student getting me up in the morning a few times a week and gradually increased it. She did not protest – she saw the years that were coming.
As mom’s abilities declined I began to juggle the home front along with mom’s increasing dementia, some CCAC caregivers coming in for her – which I also had to deal with, work pressure and aging myself. A merger at work tipped the balance. My body – which had previously co-operated simply refused to be bossed anymore. It was a bad time.
Major illness for 2 years and bouts with near death – had to leave work & take care of the two of us in a better way. Both of us were major care recipients now.
My mother’s early experiences as a mother and caregiver gave me much food for thought:
Why is it that against all odds and in spite of so many challenges, with very little family support (my three siblings are deceased) many severely disabled people needing support themselves take this on in a variety of ways – rather than place your parent in a nursing home.
- Greater understanding of dependency & all that means — helplessness, lack of control, and powerlessness, vulnerability
- Deep sense of gratitude for what parents did for us and it can be seen as a time for “reciprocity”
- Know what “abandonment” would feel like
- Greater tolerance, acceptance for human frailty and decline
- There is greater knowledge of the resources and what to do, better honed advocacy skills
- May have equipment in the house which is useful for parent — or you know where to get it
- Not easy to visit — in some ways easier to have parent stay with you – greater control & supervision
- Might blend with your own support needs
WHAT HAVE I LEARNED by being “care recipient & caregiver”? What can we learn from the past? What have we gained & lost?
- Easier to be an advocate for someone else than for yourself (Shock value)
- How to get angry and be constructive – learning the tools for effective change
- What a “miracle” life is as all of us journey through it
- Responsibility of caring for her is like running a business – dealing with times, schedules, disagreements between workers, different personalities, messes left, lateness and so on (much harder when you’re not the paymaster & no supervision & reluctance of fear of complaining)
- Need to look after yourself well, eat healthily, get out often, do enjoyable things, put your head someplace else & get good sleep
- How to optimize the unique skills of many separate caregivers
The BURDEN isn’t my mother. It’s the formalized caregiver system on which she is dependent:
- Policies, rules, personalities, paperwork. Health and safety, risk management, liability psychosis (this is the burden not just for the client and family members supporting him but also for the workers)
- Constantly coordinating and troubleshooting
- Fragmentation of what’s allowed and (unsupervised) workers discretion in what they will do – abuse of each other and you’re in the middle
- Greater costs — toilet paper, food, use of your space and cleanliness – lack of privacy and your own time – listening to the complaints and needs of others.
In a family, “care” gets done in an integrated, holistic efficient and non-clinical kind of way. Chores are not fragmented, disallowed, acts, perceived as lesser or greater status of importance. (E.g. toenails, housekeeping, taking garbage downstairs – everything can become a dispute and the client is in the center of it all trying to sort it out.) That’s the BURDEN. Seeking, finding, coordinator multiple people for each fragmented task. That’s the BURDEN.
COMPLEX CONTINUING CARE – has little to do with the client and everything to do with today’s system. It’s not the client at the bottom of the hierarchy.
- Clinicalization of “aging.” Why is it so easy and quick to get a myriad of professional experts into your home (OT, PT, Nutritionist, etc.) and so very hard to get basic everyday maintenance? Why are PSWs lowest on the hierarchy when, in reality, they are the most essential?
- If childbirth is a normal part of life and not a “medical” issue. Why then is aging?
- A social issue – not medical one. Why is the extremely costly medical system driving all the initiatives? Is Quality of Life derived from a bath?
- Why isn’t the support derived from a person’s interests and activities. Inability of decision makers to realize my mother’s home is her castle – health and happiness much more related to having everything tidy or help to bake cookies than having a bath.
In spite of the continuing, increasing complexity of the system, I am very lucky to also have some incredible caregivers who deliver support in a holistic way, that respects and honor who my mother was and is – hair, finger nails, trips to the store. Who are willing to soldier on with me – in spite of the challenges. Without them, she would be long gone.
Family-based care, as given during childhood, can be optimal given that tasks of daily living are not “fragmented” and separated but flows smoothly in an integrated way.
We can’t go back – but what can we bring from the past and apply to today’s world
- Autonomy – clients’ choice of the care that they need
- Disability is not so much of a “health” issue as it is a social living issue – need to de-clinicalize people. Need to think more about enhancing their abilities and interests and priorities rather than prioritizing bodily needs which aren’t going to improve and only need maintenance
- Need to look at the least cost approach and a holistic non-fragmented approach
- Other simpler funding models…
You might think I am unique – but there are others – same reasons
Janet, a 30-year-old adult with cerebral palsy, moved into a nursing home with her elderly father so she could keep an eye on him and ensure his needs were met – as well as her own. She was, after all, just another one of the residents – powerless to make much of a difference. After her father died, she moved into a supportive housing situation with attendant services appropriate to her age and stage of life.
Linda, a young woman with severely limited mobility due to juvenile rheumatoid arthritis, moved into support service living unit for physically disabled adults – mother moved in with her. Over time as her mother aged, the support staff began providing support to the mother as well. Her care needs, including dementia, increased – many discussions about moving her out into a nursing home, which Linda resisted fiercely. This did not happen, and eventually she died at the age of 92.
William, a 40-year-old man employed as an account executive and severely disabled with progressive muscular atrophy volunteered many hours to create a supportive housing units in the city where he lived. When completed, he left his parents’ home and moved in. His mother, soon thereafter, was diagnosed with Alzheimer’s disease and before long was in a nursing home. William maintained responsibility, control and decision-making power by visiting several times a week, joining boards and committees in the facility.
Mary Jane, a 55-year-old retired manager, also with severe limitations due to juvenile rheumatoid arthritis, also a power wheelchair user, keeps in touch daily with her elderly parents who live two hours north of Toronto as well as with other family members living in that area to ensure their needs are met. She also regularly takes the accessible Greyhound coach, to and fro, depending on scheduling wheelchair transportation services i.e. WheelTrans (as did William) to accomplish this.
Nancy, 65-year-old post-polio paraplegic now dependent on oxygen and assisted ventilation at night as she aged, was lucky enough to be able to move in to her own apartment for seniors at the same time as her 85-year-old mother was admitted to a nursing home connected to it by tunnel. Previously they had been living together and receiving CCAC and attendant outreach from two different agencies. Nancy has been able to continue receiving outreach attendant services several times a day, maintained supervision and advocacy for her mother, as well as be able to spend some time with her mother every day until she recently died.