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Our Story ... A Reflection and a Promise Kept

OUR FAMILY MADE A PROMISE ...
in the last days of my mothers life .... we promised her to do all we could to make it possible to deal with Alzheimer’s, either through research dollars, donations of time and energy or in assisting other care givers. to date we have done this and we will continue. My father accepted a position on the National Alzheimer’s research board in Australia, As a family, we have donated time to tell our mothers story, created a multimedia cd for caregivers, made donations to the nursing home our mother was at and financial donations to research funds. We do this willingly, with the knowledge that every single cent we can gain will help other families in the future and in time we hope rid the world of Alzheimer’s. In my opinion, no single person deserves to end their life without the dignity and self esteem that this disease steals away.

Like many people faced with a family member diagnosed and the realization that someone needs to care for that person, I felt confident I could cope with a little forgetfulness. I naïvely set about taking on a caregiver role. But as the disease pursued its relentless destruction of our lives, I began to earnestly search for information to better understand what I was dealing with. It was about awareness and finding solutions to the day to day problems being faced as a caregiver. Later this process became a promise made to share strategies that have seemed to work.

Today, having gone through all the stages of the effects of caring for a person suffering with a dementia (Alzheimer's in my case) it is my belief that when you (the Caregiver) feel that you are all alone, that no one realizes what you are going through, and you don't know where to turn for help, then I hope that you will turn to these pages and find the understanding and support you need and deserve.

No one understands caregiving for a family member better
than another Alzheimer's caregiver.

Maybe the best explanation is to reflect back briefly on my families personal experience and my own thoughts.

EileenAlmost everyone at some point can look back on specific times in their life that resulted in a change. That point where one minute you think you are reaching a peak in a life where you feel relatively successful, happy and healthy, the next moment, your life as you knew it, has been altered forever.

My first experience with Alzheimer's was in my late teen early 20's living in Sydney, Australia. My grandmother was diagnosed with Alzheimer's and my parents naturally became the primary caregivers. In the later stages, I recall my grandmother being moved from Melbourne to Sydney to live with us, a typical solution as a carer for those not wishing to look at the nursing home option quite yet. Eventually the inevitable happened although the death certificate lists Anorexia and other medical issues as her demise rather than Alzheimer's.

JMBMy mother was then also diagnosed, but in hindsight I believe this was kept from the five of us 'Kids' for a period because of my mothers private nature in combination with her generational perception. Now in my early 30’s and with the availability of the world wide web (although somewhat limited) I sought information and options, I either felt embarrassed or just didnt want to face the reality of the situation itself. Even though our family expressed a desire to keep her home as long as possible, it affected everyones lives somehow. We were fortunate in that, overall the family support and the financial situation our father had achieved throughout his working life provided a better than average ability to manage a caregiving role somewhat adequately. The family spent a difficult and costly 10 years scrambling around to find solutions to the problems Alzheimer's presented.

 

 

 

We did what we could through the various stages of the disease, keeping her at home for 10 of the eleven years of her suffering, but eventually my mother was placed in a dementia-specific ward with 20 other patients to care for 24 hours/7 days at very low nurse to resident ratio. My father would go each evening, and my brothers, sisters and I whenever we could, to help the nursing staff wherever we could. Each time watching, waiting and hoping that the inevitable would happen soon for her sake and the others in the ward. But in the end, like so many other caregivers, I found an appreciation of what’s important and the value of life

.BettyIn addition to my mother's battle, my grandmother also suffered Alzheimer's before her passing. My story is even more complex in that I was actually adopted. In late 2010, I discovered my natural family and believe it or not also found that my natural mother (pictured left) was in the later stage of battling Alzheimer's. In fact, she passed away the following year before I had the opportunity to meet her personally. So my exposure to Alzheimer's in one form or another can be traced back almost 20 years.

BUT... The story here is not my mother’s, my grandmother's, or even my natural mothers battle. I would like to believe that the sufferer reaches a point where they are not really aware. However, in all honesty, was my mother undergoing mental or physical torture as she struggled to talk to us? I’m sure she was but how could we really know?  She couldn’t tell us! The story here is the emotional burden that the family and the caregiver has to burden.

Watching the person you love disintegrate before your eyes, and slowly. Trying to run house and job but being careful to tread a delicate line of support without appearing to support, having to preserve someone's dignity and sense of purpose, and then in addition dealing with a social life that slowly ceases to exist. These are all burdens that the caregiver willingly accepts, but as was the case for me, I also needed to learn how through " trial and error' (probably more error).

Personal Note to Caregivers

There is more of our story throughout this site and in the tips sections ... Overall I am hoping you find this a resource you can use to find possible solutions to your role as a caregiver. The only thing I stress here is these are suggestions only and may not work in your situation.

The basic rule I used was "Think outside the box"

Caregivers cannot do it alone.

On one particular night I was more than a little frustrated and angry. I asked one of the nurses caring for my mother how they cope emotionally with dealing with her and the others in the dementia specific ward each and every day. I didn’t expect her answer, but it sure put a lot of things in perspective. Her response was simply “she isn’t my mother … to me she is my patient”.

Caregivers must take care of themself. This may seem impossible when so much attention is required by the person being cared for, but if the caregiver gets ill or is overcome by depression, he or she can’t do a proper job of caregiving. Caregivers make a long-term commitment to a 24-hour-a-day job.

Feeling not up to it is a normal, common reaction. But with planning, the job is manageable.

 

What Others Caregiver's Have Said

"Take one day at a time and don't worry about the past (it is finished) or the future (it will take care of itself)."
(Carer, Qld, Australia)

"Celebrate and enjoy what he/she can do now - don't focus on things that have been lost."
(Carer, NSW, Australia)

"Whatever works at the time is right."
(Carer, Qld, Australia)

"It's a very 'up-and-down' condition - a bad day does not mean all future days will be the same. Tomorrow may be much better."
(Carer, Canberra, Australia)

"You may meet with resistance if you insist on doing things your way. Much more cooperation can be obtained from gentle leading and softly spoken explanations."
(Carer, ACT)