‘People with dementia often accuse their partner of an affair’

Married to Alzheimer’s: I’m now into my difficult second week without Tony, writes Steph Booth

Steph Booth with her husband Tony. Photograph: George Skipper

Steph Booth with her husband Tony. Photograph: George Skipper

 

So, I’ve done it. After all the frazzled days, feelings of guilt and downright exhaustion Tony has gone into respite care for two weeks. I’m now into my second week without him.

The first few days passed in a daze. I was so tired I barely functioned. It was as if, with the stress removed, my brain and body went into shut down. It must have been adrenalin keeping me going during the last few, difficult weeks.

Tony, although far from pleased, did not put up much of an argument about going into respite. I would like to think it was because he could see how exhausted I was. Realistically, it was probably because he cannot be bothered to fight any more.

I am crying as I write this just as I cried when I drove away from the home after leaving him there

Driving to the home he continually ask how long I would be away for and wanted reassurance I would be collecting him soon. This time he did not accuse me of planning to run off with my “fancy man”. I have heard from other people it is quite common for people with dementia to accuse their partner of having an affair. It it was not so terribly sad it would be funny.

Tony is so small now. Shrunken. Without fire. Without sense of purpose. The man he was is now gone. He is fearful of a world he can no longer make sense of. I wanted to hold him tight and soothe away his fears, but I was no longer capable.

Truthfully, though my heart was breaking for him and for us, I looked at him and saw a burden I could no longer deal with.

I am crying as I write this just as I cried when I drove away from the home after leaving him there.

I rage at the cruelty of this disease. I rage at the researchers and medical professionals who say stupid things and clearly have yet to understand this disease. I rage at myself for running out of strength and I rage at God for doing this to us. Why pick on us? What did we ever do to deserve such a trial?

I took two weeks respite and walked away from everything. I have friends in Tel Aviv and I went to stay with them. Six days and nights when I was responsible only for myself. Sunshine, sleep and the company of friends. Enough time and rest to know I not only wanted, but needed Tony home with me.

I know that as a carer it can seem the giving is all one way, but I know that is not always true. Tony and I had, and did so much together and although these are no more than memories now they can sometimes jump in to our present.

One of the advantages of him only having long-term memory is occasionally he will remember something. It is even more special when it is something I have forgotten. Tony can then take credit for remembering – which delights him. It is a rare and precious moment we can talk about together.

However, this sudden recall can be problematic. Some weeks ago Annie, our rescue cat, ran away. Like all our animals she wore a collar and name tag with my telephone details.

Twice I was phoned by people who had found her some way from home. I tried to keep her in, which meant locking the cat flap which seriously inconvenienced our other two cats, Rosie and Finn. Annie finally escaped when Tony opened the door to stand outside for a smoke. So far, she has not come home.

Fond of her though he was when she lived with us, Tony has mostly forgotten about Annie. However, as with other coherent thoughts that sometimes descend from the blue he will ask me where she is. I tell him she is probably in the garden. He accepts this and forgets about her again – although on one occasion he insisted on going to look for her.

Having got down into the garden he forgot why he was there and sat down on the bench. I took him a mug of tea and a packet of chocolate biscuits, and he was content.

Eddie, our old rescue lurcher, likes to sit with Tony: two elderly chaps together. Eddie is very calm, quiet and particularly fond of chocolate-biscuit moments. Hobnobs are rated highly by the pair of them.

I am not supposed to know about this – dogs are not allowed biscuits, or chocolate – but I turn a blind eye. Tony finds Eddie’s presence soothing. He is an undemanding, friendly companion.

I have, in various capacities, visited care homes. Beyond a few exceptions, there is a marked lack of pets. I have seen old ladies shuffling along with dolls in their arms. I have seen twiddle muffs. These are usually knitted and have things like buttons attached to them for twiddling with. Why? Why are the elderly and dementia sufferers particularly, infantilised?

An easygoing Labrador, or affection-loving cats make better and far more responsive companions than bits of plastic, or knitting.

As those with dementia shut down before our eyes, we do not have to speed up the process. We all need affection, and enabling those with dementia to give a real response to and interact with that affection is a positive experience. I know someone will shout about health and safety, but for goodness sake.

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