My wife Shirley was diagnosed with Alzheimer's at age 54, but she probably had it for 5 years before that, and hasn't worked since age 52 due to the disease. A diagnosis took 2 years, and during this time not knowing what was wrong greatly added to the challenges.
Many of those with Alzheimer's dementia (AD), before diagnosis, have no idea what is happening to them and try as they might, end up quitting their job, are shuffled out by being asked to resign or worse yet being laid off (in other words FIRED) by their employer with no thought of accommodating their disability, which I believe is a legal obligation for the employer.
Her undiagnosed AD and this situation put tremendous strain on our marriage, the quiet moments sharing our life together were gone, and it's pretty well the same for all who are affected by early onset AD.
In a strange twist, I have a difficult time remembering my wife as the person I married and the hopes and aspirations we had for our life together are mine alone, with no way to make them happen. Her memories are gone. It is often said those with AD die twice. I now know what that means.
Our kids have been great in dealing with this, and do their share of providing support and care. They have their own lives working hard to achieve a happy successful life; a nurse, a teacher, and a construction contractor. They have lost a parent, guidance counsellor, supporter and staunch cheerleader, and on top of that they have to look after a parent far too early. And the burning question is, will they succumb to the same fate?
Without a timely diagnosis and support, many couples sadly end up in separation or divorce. The untold costs are huge, not only in the lost productivity of both the one with AD, but with the spouse who is under a significant amount of long term stress without adequate support. Finding better treatments and a cure is indeed a priority, and that needs more resources to make it happen.
The diagnosis of AD wreaks havoc on even younger families with children still attending school, which makes the situation much more complex than those who experience late onset AD in their 70's and 80's. Caregivers are still working and it's a huge challenge to be a caregiver, care coordinator and breadwinner at the same time.
Sadly we had to move Shirley to a care facility as she could no longer remember to eat, turn on the TV or feed the cat. Not only can't she remember when to do these tasks, she no longer knows how to do them.
Shirley is the youngest resident in the assisted living facility by far. Those with early onset (under 65) are still active, physically well, and need social interaction. Many of the residents where Shirley lives are in wheelchairs, haven't the ability to socially interact, and require a much higher level of care than those with early onset AD.
The amazing thing is she can carry on a very engaging conversation for several minutes with a stranger before it becomes apparent she has a problem. There is very little opportunity for this simple interaction in her current care situation.
Shirley constantly walks the hallways to get some exercise and attempts, with the help and blessing of the staff, to create some activity with the other residents, many who are old enough to be her parents. I can't say enough about the staff, who try to do what they can for everyone, but unfortunately it's often the lowest common denominator that rules the day. For example, music time is filled with songs from the 40's and 50's most of which were popular BEFORE she was born!
The answer is to create a care facility in Calgary where all the residents are in there 50's and 60's to create a meaningful life experience for the early onset group for the short time they have left. And this is not difficult to accomplish, all the early onsets affected in care homes today are scattered throughout the system. All that is needed is to move them together into one central facility. No added costs.
While Alberta leads the country, and in some cases the world, in many areas, it's almost embarrassing that once productive Albertans are not afforded an appropriate and meaningful level of care and support.
Please find a way to make this happen. Thanks.