Married to Alzheimer’s: ‘You do not acquire instant sainthood when you become a full-time carer’

For me, my garden is a calm, reflective place. Digging, planting, weeding, I find it easier to think things through. I have recently been pondering what I would say to people who find themselves caring for someone living with dementia. Things I wish I had known or had been told at the beginning. Of course, it’s a personal list, but I hope it will help at least some people going through the same experience.

Dementia is a difficult disease to diagnose. We can all be a bit dopey and forgetful. How many times have you got to the top of the stairs and forgotten why you are there? This is not dementia. Signs of confusion are the clearest indicators that perhaps something more serious is going on. Tony began to mix up fictional characters in the book he was reading with reality. That is when I decided his symptoms needed to be checked.

Do not allow yourself to be shunted out of the doctor’s office with their blithe assumption that you will be able to cope. That would not be the case with any other long-term disease. It should not happen with dementia. It does though, for too many of us.

Along with the emotional impact of Tony’s diagnosis, trying to find out where to go, who to ask and what information and support was available, was unbelievably wearing. Make sure you at least get a starting point before you leave the doctor’s surgery. The Alzheimher’s Society is an invaluable and ongoing source of help.

Other people’s reactions

The person with dementia can find it difficult to accept their illness, but the reactions of other people, particularly family members, might be surprising and unhelpful. Even when the evidence is clear, some refuse to accept the diagnosis. I have certainly found this to be true.

At first I tried to explain to them why their acceptance was important, in being able to respond appropriately. Now, though, I realise it would have been better for everyone if I had not allowed myself to become distressed by their lack of understanding and support. Not everyone reacts well in a crisis.

A critical lesson to learn as a carer is to focus on the positive, prioritise what is helpful and move on from what is not.

Don’t panic. Don’t assume it is all immediately downhill from the diagnosis. There may well be a good few years before things begin to get really difficult. Tony was diagnosed about eight years ago, but it is only in the past nine months or so that I am having to deal with the full-time, serious impact of him having a degenerative disease.

Face up to the fact that palliative, or end-of-life, care has to be discussed sooner rather than later. With everything else going on this can be a really tough one. Finding the right moment is the first hurdle.

We had friends over for supper some time ago and the subject of hymns as a source of social history came up. An opportune moment to talk about favourite hymns. It was easy enough then to move on to discuss how we would like to die, given that we had probably left it too late for a rock-star ending. I am now pretty clear about Tony’s preferences.

If you want to talk to someone, the Irish Hospice Foundation has a lot of experience in this area.

Truly awful days There will be good days, not-so-good days and then there will be truly awful days. On the bad days, when you feel your head may just explode, you are allowed to shout or grumble at your partner,

just as you would in any marriage. I do.

You are a human being. You do not acquire instant sainthood when you become a full-time carer for someone with dementia. With the best will in the world it is hard to answer a repeated question as if for the first time, or listen with rapt attention when you have been told the same story again and again.

Have fun. Make a joint bucket list, and then do as much as you can. You will need these memories to hold on to when the person you love starts to retreat from life and from you.

Tony had always wanted to go to Languedoc. He is fascinated by Cathar history and stories of the Holy Grail. We went last summer and I took lots and lots of photographs. That same journey would be difficult, if not impossible, this year.

I have been reliably informed that red wine is full of antioxidants, and they are brilliant for reducing stress levels. I am not suggesting for one minute that carers need to turn to alcohol, but occasionally the sound of the cork being pulled from a bottle of wine can be one of the most wonderful and soothing sounds.

Relax and enjoy a glass; it might even qualify as one of your five a day.

Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer’s disease.