Alzheimer’s is such a cruel disease. I cannot deny that all diseases have their own set of horrible elements to contend with but Alzheimer’s is horrible because it steals the identity of the person afflicted with it. To watch someone deteriorate from a vibrant individual to someone who is losing “themself” is heart-breaking.
My father lived with Alzheimer’s for a number of years before he suddenly literally deteriorated over just one weekend. Up to that point he managed to cope relatively well with most things but looking back now I know how much of the fear he must have kept to himself. I can only imagine how terrifying it must be to feel your sense of control slowly slipping away from you and how brave he was to go through what he did with so little complaining. Maybe he felt by not talking about it would make it not real? That is, until he got to the stage that he could no longer – or was unable – to talk about it. After that horrible weekend, the downward spiral was somewhat quick and he was bed bound within a year. Nevertheless, throughout the entire time, the one and only thing he ever desired was to be with his family. He had a smile that would brighten up the room every time he saw me.
One thing that became overwhelmingly obvious throughout Dad’s illness is the almost non-existent support for the elderly in the community and how little understanding of what Alzheimer’s really is. I must admit I was guilty of that too before Dad got sick. There is too much of an expectation that once someone is over a certain age, the only alternative is to shove them away into a nursing home. Why is that? Is that what we all have to look forward to? To be forced into giving up our home, families, partners – our lives - just because we have gone past our “used-by” dates? Our youth obsessed culture is far to quick to abandon the elderly relegating them to “silly old bugga “ status and often they are unfortunate to become dependant on institutions or carers that see them as nothing more than “a job”, or even worse, as an inconvenience. Where is the justice in all of this? In one-way Dad was fortunate that he had us to be his voice and fight for his needs. What about all those out there that have no one? Who stands up for them?
Dad stayed with us at home – his own home - right up to the end. It wasn’t easy but we would gladly have continued no matter how long that was going to be. My main challenge throughout the entire time we were caring for Dad was to try to give him a sense of worth and dignity. The little bit of so-called assistance we got was really no more that just talk. Unfortunately, the time for counseling quickly passes and the need for real support and real action is there every single minute of every single day. However, we quickly hit brick walls whenever we tried looking for it. I guess the point I am trying to make is that Alzheimer’s is not going away. In fact, it is a quickly growing social issue. Society is aging yet so little is being done for that much valued part of the community. Sure, we hear about developments on Alzheimer’s research every day and - do not get me wrong – I think that’s great. Please, let us have more. But what we also need is a greater support system for all the elderly so they can continue living their life as long as possible with real worth. Not just talk but actions. And thirdly, a change in society’s attitudes so that the elderly continue to feel valued and respected. With that comes a greater understanding of the elderly, what challenges they have to face and what Alzheimer’s really is so that they are no longer seen as dittery, silly and a nuisance. In reality, greater care for the elderly of today is making sure we will be properly taken care of in the future. After all, god willing, we will all be elderly one day.
My dear Dad - frail and tired - gave up his battle on this day, two years ago.