Caregiver's story
Living with Alzheimer's
by Hadassah Khan, Caregiver, South Africa
I never thought that I had a raging temper, or was highly volatile, living with my husband for some years before I hospitilised him, brought out areas in my nature I didn't think were possible. I resolved to throwing slippers at this man, shouting at him, and sometimes wanting to throttle him.
Of course, after these outbursts, I was truly contrite, - until the next time I felt myself losing total control. I know of course that he was not responsible for the things he did - such as arguing about getting into the bath and trying to sit in the bath, the wrong way but it didn't help to reason with him.
He was beyond reason. He broke a drawer and steadfastly refused to acknowledge this of course he had no memory of this and similar incidents. He would answer the telephone and not give me messages. He had no idea how to put on his clothes, and instead of undoing buttons on his shirt, would simply rip the shirt off, scattering buttons like confetti.
After I was persuaded by my family to institutionalise him I suffered a mild breakdown. My immune system went hay-wire. I was really ill, couldn't eat, lost weight and my hair (and my face wrinkled!) But in this time I started eating, felt reasonable - not happy this can never be, but at least everyday happenings do interest me.
A good deal of life is sharing and with a partner who has dementia this is absolutely impossible. It is a very lonely life being a carer.
When a partner dies there is a period of mourning and after an unspecified time, the living member of the marriage can get on with life but in the case of being a carer the sick person is always in the background and cannot be forgotten.
No matter how one travels, the thought of the patient is always there in the background, President Reagan, has said that he feels that Alzheimer's disease is an ongoing funeral, I call it a living death.
There are many emotions from which one suffers. The first important one is guilt. Because of the nature of the illness, sufferers are not easy to handle. They may be aggressive, uncooperative and then the carer has to cope. At the beginning of the illness it is not easy to 'tag' the illness. You just think it's old age. But then when it does penetrate, you feel guilty at remonstrating, being angry and even being horrible.
After the guilt, you then feel pity, dreadful pity at the indignity of your husband or wife. And, of course, remorse for not being able to deal with the sufferer's mood swings.
The career has to be positive about the future. And the carer's life has to continue, albeit alone. You have to survive. You learn to eat alone - not easy.
A difficult thing to accept is the reaction of friends, and their behaviour towards the carer. Usually people don't know how to react, so they don't ask about the sufferer. I think out of embarrassment. And this just hurts. The sufferer is not dead. Just mentally not on this planet. But the carer is very much here and needs not pity, just empathy.
My first reaction to friends who wished to visit my husband was to say 'no please' because one is protective and embarrassed at the change they will find. It is not pleasant seeing a once robust, intelligent person talking nonsense and resorting to the first ages of man, written so succinctly by Shakespeare.
To see a person after 47 years of marriage diminishing slowly in front of you is not easy.
