Married to Alzheimer’s: How much would I give to still be a wife and not increasingly a carer?
Steph Booth with her husband, Tony: ‘Family, friends, acquaintances ask after him. As the one in the caring role I am assumed to be all right. I must be if I am coping.’ Photograph: George Skipper
Tony and I have always had a pretty tempestuous relationship. We are both strong characters and perhaps, it is a peril of being married to an actor. If I had a pound for every time he announced – always in a grand, theatrical manner – he was going to leave me, I would be a wealthy woman.
He never has gone, though. The drama of the moment is the thing he relishes and I point out he would be mad to leave me. But now with the Alzheimer’s, Tony is leaving me and I will not get him back.
We share a home, but increasingly not a life. Everyday companionship like routines last thing at night: cleaning teeth, finding pyjamas kind of conversation. “Where’s the cat?” “Have the dogs had a wee?” “You did lock the back door, didn’t you?” The usual, humdrum stuff of all marriages. Followed then by the more intimate, personal exchanges of togetherness – snuggled up in bed and sharing pillow talk.
How we take these moments for granted. Tired, we just want to turn over and go to sleep; we can always talk tomorrow.
It is only when those moments are slipping away we realise how precious they are. How much they are the glue that binds any partnership together. How much would I give to keep them and still be a wife and not increasingly a carer?
The shared laughter, interests, gossip, bitching, planning, hopes and dreams – all disappearing. So much depends on us being able to remember things that happen during the day. Events, chance encounters we would once have shared.
Hopefully, we are still some way off Tony completely retreating into the hinterland of his mind. Sometimes I wonder if reaching that final stage might not actually be a blessing for him.
He is aware of what is happening and can become very frustrated. These are the hardest times for me.
Trying though it can be to answer the same question repeatedly, it is nothing compared to the fury and misery that swamps him as he vents his frustration. I cannot do right for doing wrong.
I feel hemmed in by his increasingly skewed vision of the world as his ability to make sense of everything is gradually eroding.
During these periods it is hard not to feel he hates me. I hang on to the knowledge this is the disease and not my husband speaking, but it can be almost too tough.
Lack of sleep
My lack of sleep during these episodes is the real killer. His unhappiness makes him tired, so he spends a lot of time asleep in the armchair in front of the fire. This means he does not sleep well at night and wakes me in the early hours to talk or, worse, to rage.
A few months ago I went to see my GP. I wanted him to give me sleeping tablets – not because I was having difficulty sleeping, but I thought they might help me sleep through Tony’s attempts to wake me.
The sleeping tablets idea was a complete non-starter. I was offered anti-depressants instead to help me cope. I failed completely to get across I was not depressed, but simply exhausted.
I feel I am gradually becoming invisible. Another symptom of a disintegrating marital role. Where once we were seen as a couple, the focus now, inevitably, is on Tony and the progress of the Alzheimer’s.
Family, friends, acquaintances ask after him. As the one in the caring role I am assumed to be all right. I must be if I am coping.
It seems only those who have gone through a similar experience, or know my situation well, will ask how I am.
I know this is a common problem and there are carers support groups out there.
I have been strongly encouraged to get involved with these groups. I do not know if I am being contrary when I do not want to join them. I do not want to be defined simply as a carer.
Enough of a challenge
For me, living with Alzheimer’s is enough of a challenge. I really do not want to spend precious respite time talking about it. I am still me.
I am increasingly anxious I am losing a sense of who I am. I need my friends and my own life beyond Alzheimer’s.
I notice strange, little things about myself now. I find I am repeating the same thing several times. A habit I have learned to help Tony, but of course not necessary in everyday conversation. A social tick that can, at times, be acutely embarrassing.
Loneliness is one of the hardest things as life becomes increasingly circumscribed. Accepting invitations to meet up with friends and family, or enjoy other social occasions now depend on whether it is a good or bad day for Tony.
F Scott Fitzgerald wrote in The Great Gatsby, “The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.”
Although, he refers to entirely different circumstances I understand the sentiment. I know that sense of helplessness and sometimes, overwhelming desperation.
But then, there are still occasionally the wonderful highs Tony has always brought to our relationship. Hard though life can be I still want him here with me. I always said he would be a fool without me and I without him.
Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer’s disease. While they lived in Cavan from 2003-2005 Steph wrote a column for The Irish Times. She will be writing occassional pieces about her experience caring for someone with Alzheimer’s.