Sunday, April 21, 2013

Burden of a Family Caregiver

Alzheimer’s is not a high profile disease that attracts funding. Reality is that in most countries, the burden of caring for the victims of Alzheimer’s falls on the families. Unfortunately, Alzheimer’s  funding isn’t ‘sexy’ in today’s world. Breast cancer and child leukiama, for example, are.  They attract research funding much more easily (and add prostate cancer to “the non-sexy” list).
In my family’s case, the financial burden fell on my father. Nursing homes are expensive. At the time, my ‘retired’ father had to pay over $2,000+ per month after tax for my mother’s care. This on top of the normal day to day expenses and any medical needs she had.
Others are not so fortunate and have to dissipate their retirement fund – if they have any! Add to this the emotional and healthcare of the caregiver themself and dealing with the stress, the potential loss of social interaction, and the pressure these stresses place on relationships and family members and its not hard to understand the burden caregivers have to manage. 
My father enjoyed working but because of my mothers illness my parents weren’t able to enjoy the typical retirement lifestyle. When asked to speak on behalf of caregivers he stated “I worked since I was 17, paid all my taxes, become a self-funded retiree but felt I was being financially penalized because my wife had the misfortune to contract Alzheimer’s disease.”
My mother was cared for at home for all but the last months. Simple tasks she used to do became tasks we did, for example buying clothes or any shopping trip; we had to quietly communicate my mother’s condition to salespeople without her knowing.  This involved carrying a small business sized card that we discretely slipped or showed to the shop attendant.  We found it easier eventually to just frequent shops that were aware of my mother’s condition. She gradually lost the idea of how to use a knife and eventually a fork. We had to devise “mom-friendly” meals.  By the time she reached the nursing home; she had to be fed by hand and only on pureed meals. Toileting became a problem as she became doubly incontinent.  Incontinence pads were resented, protective pads/sheets required on beds, chairs and car seats. Any dignity or privacy was basically lost to her.
During her respite stay, the staff said that she was still very “aware” and unable to come to terms with her inability to perform physical tasks; my mother was very frustrated and made life difficult for herself and those around her; Although very, very rarely violent, tried to escape through window. Eventually, she had reached a point beyond our care and where professional attention was required. She could barely recognize my father and didn’t always recognize myself, my brothers or sisters, let alone her 5 grandchildren. This was a harrowing time for all of us and became the start of an extended grieving process.
The result was we placed her into a ‘dementia specific’ nursing home where she was free to roam around and had several activities she could do without being able to wander out of the home, due to locked doors and windows.  All under the supervision of remarkably dedicated and underpaid nursing staff.   My father found it difficult to ‘pluck up’ the courage to take the step feeling that it was the beginning of the end and the real end of his 49 year marriage. He and/or a member of my family visited every night to be with her and assist the nurses where we could, but she couldn’t walk, by shortly after could scarcely talk. 
One of the really sad things was that she didn’t ever get to enjoy her grandchildren, nor did they get to enjoy her. Her inability to recognize them, their age and the confusion about ‘grandma’s’ condition, helped in the family making the conscious decision of not taking her grandchildren to the nursing home.
Did my mother undergo mental torture as she struggled to talk to us? I’m sure she was but how could we really know?  She couldn't tell us! . What we can relate is how gut- wrenching it was to hear my mother repetitively say I don’t want to live my life like this”;“I’m frightened”. A tough time for any caregiver knowing that you really cant help and can only try to distract or make comfortable.
There is still no forecastable pattern to the disease in any one person. Geriatricians are unable to predict with any accuracy how quickly, widely or deeply any one sufferer will be affected. In my mother’s case, she lost her physical abilities before her mental capacity to understand. This of course created much anxiety and confusion for her and difficulties for us.
As a nation, and in my own country of Australia, most caregivers i meet have the same hope ... that somehow more funding and research will be done to reduce the incidence of dementia and therefore reduce the number of sufferers and the resulting trauma of the caregivers. But until a solution is found there is a need for more support facilities for the caregivers – day care, respite care, and permanent care, less financial impact on caregivers, more professional caregivers with better pay, more community education on Alzheimer’s on how caregivers access facilities and support systems.
Finally, a need for more community education and understanding that dementia should not be considered a dirty word and is currently something that could affect you as a caregiver or a sufferer at some point in the future.


  1. burden of caregiving - Caregiving for parents, spouses, and other relatives is becoming increasingly common, yet perceptions of the caregiving burden are not fully understood.

  2. i totally agree ... i often say to others that the only people who really know what its like to be a caregiver is another caregiver. reality is that alzheimer's research is not a 'sexy' research topic like other just as needy reseach topics like child cancer and breast cancer for example. these attract large amounts of support yet Alzheimer's and dementia research still stuggles to have funds to fully comprehend the illness. but that is also a topic of a tottally seperate blog