Alzheimer's update

The first thing most people say to me when first learning of June's Alzheimer's is "But how are you?"

I think this is probably an empathetic response based on their own experience with the disease either as a professional or someone who has been challenged with it more directly.

You see, to care for someone with Alzheimer's is not an easy process and it only ever gets harder.

When you love someone and witness their struggle but can do little to relieve them it leaves you quite numb and becomes all consuming. Much of the time you are grieving for a person who is still alive. The professionals all warn you that things will only get worse but you cling on to the faintest of hope that maybe it is a misdiagnosis and a miracle will happen. On a good day (haven't had one for some time) the glimmer of normality lulls you into a sense of false security and you find yourself celebrating the tiniest of successes only for the stark realisation to quickly snap you back to reality.

Doctors, nurses, psychologists and friends all tell me how important it is for me to have a life and not to let the circumstances overwhelm me. They mean well of course and as I say I understand that this is a natural response from people who know they cannot help the actual patient so try and do the next best thing. The problem is this disease makes you bare your soul and strips you naked of emotion. The guilt is always there. Why June, why not me or someone else who was less good than a woman who has only ever spread love all her life.

I often contemplate when June first showed signs of dementia and I have worked it out to be a fall she had in Weymouth two or three years ago. June fell through a bus shelter when she leaned against what she thought was a glass siding which turned out to be smashed. The fall itself was nothing major, a cut shin and abrasions to her head which the local hospital x-rayed and found nothing amiss, but June's reaction was just out of character. June is tough but she looked so forlorn when she staggered towards me and she cried like a baby. At first I thought it was just shock but as the day went on she seemed more and more distant and was not responding in the normal way to concern. June spent the next few days in bed and I was very worried about her as everything seemed doom and gloom in her mind. The GP thought it was shock but I knew it was more than that. I'm not saying the fall caused the condition, I just don't know, but I do know that nothing was ever the same again after the fall. June became terrified of falling, terrified of cars, terrified of Christmas. I found her sometimes saying "June and Trevor" to herself just as she does now. The ever present smile was no longer there when I caught her unguarded. Yes, the clues were there but I was in denial.

Since June was diagnosed officially just over a year ago things have worsened rapidly, almost on a daily basis. At this moment in time June can no longer cook, clean, shop, dress, bathe or leave the house and she is incontinent. All these things she could do to some extent at Christmas. Now a good day consists of getting up out of bed. It takes a lot of reassurance and a lot of cajoling. June is aware of her condition which makes it worse of course. We do not use the actual name, preferring to call it anxiety caused by memory difficulties, but she knows. She tells me every day she wants to die, she wants to shoot herself. She tells me that she has given up hope of getting better and feels she is only going to get worse.

She sees things and hears things that stop her leaving her bedroom. The kitchen is often guarded by some unknown entity. She used to try and go to the shops but invariably never made it past the porch. I asked her was she scared of losing her way home but she told me there was somone stopping her leaving the safety of the porch. The frustration is now etched on her face as she is such a dignified person.

The worst thing for me is the mood swings. If I forget to buy sugar I'm inconsiderate, if I show even a glimpse of frustration I'm accused of being evil. This is from a person who has no malice no temper and so it is at these times I am more aware than ever of her struggle.

Fortunately the Lord gives me strength and June and I together will overcome. What would I do without my faith? Well I'm trying to hold down a full time job as a writer/publisher. I'm dealing with printers, newspapers, retailers, wholesalers, salesmen and the media on a daily basis. June is always here by my side, often in the sofa bed I put up in my office to save me the walk to my bedroom! I don't know how the Lord works, I long since gave up trying to second guess Him, but I do know that all this is for a reason. It might be as the consequence of sin but I rather think it is something else, something too complicated to even express. God only gives us what we can endure. He knows what is best for us. That goes for me, June and every one of you!