Is there anybody there? OH YES!!

In the last few weeks, I have been looking around and finding other blogs and writings about FTD.  I was amazed at how many of you are out there! And excited too. It means that awareness is on the increase. It means that more people are shouting about it.

I have been moved to tears by more than one account of the daily life of a caregiver for a loved one with FTD. I am amazed by the strength, the courage and the tenacity with which these people hang on to the fragments of  someone who is so dear to them.

I want to reassure, hug, make it all right. But of course I can’t.

I want to tell them it will all be ok, that their sacrifice will be worth it in the end. But I can’t.

In the year that has passed since the bastard disease stole away the last vestiges of my husband, I have become aware of a growing movement. Dementia is in. The ‘aging population’ as we are known – Boomers, the Sandwich generation, call us what you will, we know it’s around. We don’t want it.

We look for ways to avoid it. Diet, exercises, brain games. You name it. We will go the ends of the earth to avoid it. Alzheimer’s Disease is becoming the plague of the 21st century. But there are other plagues that chip away at the brain. Frontotemporal Lobe Degeneration, Pick’s Disease, Primary Progressive Aphasia, Behavioral Variant FTD. A positive myriad of acronyms and initials.

And that’s before we even start on the physical conditions – cancers, other neurological conditions – Parkinson’s, Motor Neuron Disease, diabetes, obesity. The list goes on and on. No single thing is more important than another. Until it happens to you. Then it becomes your life. Your whole world. The new world replaces the old one.

The world of the caregiver – and I can only speak from watching people through my work and my own experience – the world of the caregiver of someone with FTD is strange. Other caregivers may compare it to their own life. And I’m not saying it’s worse or better. I’m saying that it’s unique, mainly because of the young age of the affected person. FTD and Early-onset ALzheimer’s Disease affects people as young as thirty years old.

It’s hard to advocate and lobby for a single group of people. Everyone thinks their cause is the most deserving.

Because they are closer to it.

Because it touches them every day.

You might think that would make them self-serving. Uncaring of the plight of others. You would be wrong. Because they all know how it is for anyone who cares for another human 24 hours a day, 365 days a year. They are kindred spirits.

I am truly humbled by what is going on out there. I took care of my husband for three years before the kindness of others allowed me to spend time with him, loving him, being his wife instead of his caregiver.

People with FTD need people who understand and love them. I have been reminded of this during my excursions into the blogging world.

Raising awareness is another tool we can use to fight the bastard disease. The writings of caregivers give us insight into the progression of the disease. Not just the disease, but the love that goes into every day.

The love that overcomes the frustration, the anger, the resentment. Right now, it can’t conquer the disease, but it will not be for lack of trying.

5 thoughts on “Is there anybody there? OH YES!!

  1. Dear Deborah
    Since writing my blog (and you finding it) I have been so heartened by your responses. I feel that you I am conversing with a ‘like-minded’ person. Sadly, you are a bit ahead of me in the caring experience but that makes your comments and advice all the more special. X


    1. Thanks Toni
      I hope that my experience can help someone find their way through the terrible ordeal.
      I have been contacted by many people who have a loved one at various stages of FTD.
      I think I am still in a daze from my own experience. My life will never be the same again of course. I am living “half a life” but it’s an ok half and one that Is ok for right now.
      Thoughts are with you as always


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