'I hate Alzheimer's...'

(The person who posted this powerful and moving statement online is happy for it to be copied.)

I hate Alzheimer's because, many years ago, it barged its way into my dear wife's life and began the ruthless, agonisingly slow process of squeezing the life force out of her.

I hate Alzheimer's because, not only did it take away the pen with which she could write new memories but, with cold-blooded efficiency, it also began the process of erasing the memories she had already written.

I hate Alzheimer's because, even as our two sons and I hugged each other, sobbing at Brenda's bedside after she had passed away, it brazenly stood there, hands held aloft saying "Don't blame me! It wasn't me that killed her - it was the pneumonia or heart problems or loss of swallow-reflex" and yet it was the Alzheimer's as surely as any drug-pusher or illegal gun-supplier is responsible. It may not have pulled the trigger but it certainly provided the weapon.

I hate Alzheimer's because, if I had bought a punchbag on which to take out my frustration over the many years of Brenda's decline and even if I had knocked seven bells out of it at regular intervals and even if I had kicked and clawed and battered it again and again and again, today it would still look as unscathed and unbothered as the day I bought it. Alzheimer's would have simply shrugged it off with a cocky "Is that all you've got?"

But, you know, Alzheimer's, we are going to get you. Every penny we raise, every test we do, every trial we endure, every hopeful lead we see falter and fail takes us one day nearer to making you a hideous nightmare of the past and you will no longer cast that awful shadow over mankind. I truly believe that with all my heart and we will get you.

I promise.

Looking Back

I was recently looking through my wife's last filofax because I needed her national insurance number. She used the filofax very successfully for a few years to help her keep organised and to remind her of things she needed/wanted to be able to remember. I didn't find the NI number there, but I did find all sorts of details that she'd jotted down over the years (we replaced the dairy pages each year in the leather case but kept all the other pages). The handwriting ranges from normal (she had lovely handwriting) to scrawls that were very hard to decipher and often contained repeated letter and syllables.

Amongst the things she wanted to remember are family birthdays then (later) family names, her daughters' favourite animals, places where she lived and worked, etc.  Reading these notes, or just thinking about them, brings tears to my eyes.

Perhaps the most moving notes are references to her youthful travelling adventures. At the age of 18 she did VSO in Ethiopia and was introduced to Emperor Haile Selassie! She also drove coaches overland to the Soviet Union.

The things she was trying to remember are amongst those that make us who we are.  No wonder she wanted to cling on to them.

Now, needless to say, she cannot drive, read or write, and her conversation is very limited. But, perhaps because of her personal history, she still gets some pleasure from travel, despite all the difficulties she has to overcome.

You can look back at the earlier phases. Difficult as they were to come to terms with at the time, you would give anything to be back there now. 

Of course, we are both lucky. My wife is generally calm and contented. She is physically healthy. I am deeply affected by some of the stories I read online from people who are not so fortunate.

But, for all those affected, it's a horrible disease. And to see aspects of the person disappearing is perhaps the hardest thing.

Going home

When my wife was at the lowest point in her decline last autumn, a professional arrived just at the point when she had fallen down and was either refusing or unable to get up.  She kept saying: 'I want to go home.'  'I assume this is where she lives?', he asked.  When I confirmed that it was, he nodded sagely.  I have since learned that this is a common feature in the progression of the disease.

People ask why.  Some conclude that, as so often in the case of older people with the disease (and as often in the case of older people generally) the person is harking back to their early years, safe and secure at home.  They may be.  But to me, it seems more general than that.

Everybody seems to have some concept of 'home' that may have similarities to the home they first knew but may not.  Even people who have had awful early experiences usually pick up the idea of what home is supposed to be.  We all talk of feeling 'at home' in comfortable places and a host will say 'make yourself at home'.  And we have sayings like: 'Home if where the heart is.'

It seems quite understandable to me that when someone's world is falling apart, they would like to 'go home'.

The most important point to me is that I can't remember the last time S said this.  It must have been a long time ago.

Who am I caring for?

Am I caring for a dementia sufferer?

Or am I caring for a woman who has:
daughters (and sons-in-law),
grandchildren,
a husband,
a father who's still alive,
a brother and sister-in-law,
stepsons (and step daughters-in-law),
many friends,
an interesting and varied career to look back on,
a deep love of music,
many wonderful, and some very sad, memories,
etc, etc, etc,
and who now has dementia?

There is a difference.