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How do you cope when your spouse suffers from dementia?

By Bunmi Sofola

“I began losing my husband nine years ago,” said 72-year-old Charlotte, a retired  industrial nurse. “We were both in our early 60s when he became strangely forgetful and disoriented. I can’t quite pinpoint when Idowu, my husband—that is to say the man I married—disappeared, but that man no longer exists. The diagnosis of Alzheimer’s didn’t happen until three years ago, but by then it didn’t really need a name. It was abundantly clear that something was seriously wrong.

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“His doctor’s abroad had told me what to expect but I never realised it was going to be this hard. Idowu forgot about the diagnosis as soon as they were made. I wasn’t surprised. Only what I didn’t appreciate back then was that I was experiencing bereavement. Life rolls on. You make adjustments, you get on with it. But when you are least expecting it, grief comes crashing in and knocks you off balance. I can be watching TV, or preparing dinner and wham! It hits me. My husband has gone. I’m left with a husk of the man. Why him? Why me?

“The progression is slowly downhill. Last year, I could leave him with the carer the children got for us for a few hours to go shopping or see a few friends. Now I can’t. He scares the carer when she couldn’t cope with his cantankerous ways and we’ve had to change carers from time to time. Even at nights, he’s likely to get up and wander. He’s still smart, personable and able to sit through a TV programme. But he has no idea what year it is or whether his mother is still alive. He can’t manage money and he no longer goes out on his own. Occasionally, he mistakes me for his first wife and this gets me into a rage.

“As any carer of patience with dementia would tell you, rage is a significant problem. It brings you sharply face-to-face with your human limitations and leaves you with a residue of regret and guilt. You want the best for the person you’re caring for. Actually, you want for them what you would want for yourself—to be treated with patience and good humour, and never, ever to be made to feel like a burden or a nuisance. But to deliver this ideal, hour after hour, day after day, is more than mere mortals can manage”.

According to medical experts, “Dementia sufferers experience a massive loss of self-confidence, so when they find themselves in a large group, even of people they know, they tend to fall silent rather than risk saying something daft. But one-to-one with a spouse, they’ll feel confident enough to bring out one of their tried and trusted list of questions.

They have absolutely no recollection that they asked the same thing five minutes ago. It is like those magic writing pads used by kids decades ago—you wrote something on a little plastic screen, pulled the doofer  across, and the writing was wiped. That’s a useful image for the effects of dementia. Question, wipe, event, wipe.

“Living with the consequences of this repeatedly wiped slate would try the patience of a saint, let alone a carer with a short fuse. Unresolved loss is another source of anger. When someone you love dies, you mourn them, then gradually emerge from intense grief. You move on with your life and reach the point where you can enjoy memories of that person. Dementia is a kind of bereavement too, but there’s no funeral, no period of mourning when the world handles you with kid gloves, and no eventual coming to terms with your loss. It just goes on and on.”

“I don’t always rage,” continued Charlotte. “Sometimes, I weep instead. This is probably the better option because it provides me with a safety valve without impinging on my poor husband. Like many Alzheimer’s sufferers, his emotional rader is now kaput. He usually looks at my tears with complete indifference or even laughs at them. I try to leave the room when I feel the tears welling. I’m fortunate that he is being monitored by an excellent team apart from the permanent carer we have.

“But every partner of a sufferer needs their own little arsenal of coping strategies. Prayer helps me a lot of the time. So too does a nice big glass of pinot grigio. Going to visit friends and relatives is good —but only if I can go alone. If I’m accompanied by someone who keeps asking, ‘How far is it now?’, it makes matters worse. When we first got my husband’s diagnosis, I came to terms— I thought—with what it would mean to us.

He was on a one-­way street and I must see him safely to the end of it; that there will likely come a time when he no longer knows me, when he can be cared for by any competent person; then, when my work as his chief carer is done, I’ll be able to pick up my own life and do the things I want to do.

“The realisation that this may not be how things pan out has been a slow and unwelcome downing. My husband, who apparently now has the heart of a 20-year-old athlete may well outlive me. The word ‘rage’ hardly covers how I feel about that. But rage, like guilt, is a futile emotion. In any unhappy situation, one must either make changes or accept things as they are. I can’t cure my husband’s dementia but I can stop putting my life on a frustrating hold…”

 


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