Our Caregiving Story

Like many people faced with a family member diagnosed and the realisation 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

This entire site is about supporting the Caregiver.

  1. Its purpose is not to give medical advice or look for a cure.
  2. It is meant to help caregivers, to protect their well being, to support them, to be with them from the first vague signs of the disease through each ensuing stages

Letting other Caregivers know that they are not alone
and that there are others going through similar experiences,
even more who have already been through those experiences and more.

According to the Alzheimer's Association, home caregiving is likely to increase. Unless a cure is found, the number of Alzheimer's patients - now approx 4 million in the US - is expected to grow to some 14 million by 2050.
(more Statistics ... click here)

Its about awareness and finding solutions to the day to day problems being faced by caregivers and sharing strategies that have seemed to work.

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.

My Personal Experience

Almost 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. As one of five (5) siblings, an Australian, only in my early 30’s, at the time whenever I sought information and options, I either felt embarrassed or just didnt want to face 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 woking 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.

My mother was eventually 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 and sisters 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.

In 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 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 her dignity and sense of purpose, and 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).

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 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