Dementia, an incurable condition that affects many old people, can have serious effects on loved ones, as Samia Abdennour discovered "In sickness or in health, for richer or poorer:" these were the vows my husband and I took over 46 years ago. The first 40 years of our marriage were pure bliss -- happy, healthy children, a beautiful home, interesting work, many friends, occasional travel. Our financial situation was secure, and we had no immediate problems to blight our life. All this was still true only a few years ago. However, suddenly, and with no previous warning and for no apparent reason, things began to take a different turn. My husband began suddenly to flare up at unexpected moments with strange accusations and ideas. Because these attacks were few and far between, at first I could not understand what was happening. Either I would retort angrily, or I would sulk, but I never attributed the change in his behaviour to illness. Instead, I believed it was due to his feeling dejected because of his retirement or was due to the pains he suffered in his back and joints. I tried, but found myself to be incapable, to pinpoint incidents that might trigger these changes. I just told myself, "patience! It will pass. Just wait and see." Later, I realised that this was definitely the wrong attitude to take. I should have sought psychiatric help there and then, but I was too confused and too flustered to think properly. However, had I done so, finding out that my husband's behaviour was due to a sickness of the mind, and that his accusations were involuntary and unintentional, would have saved me a lot of pain. Instead, what I actually did was to try to find excuses for his behaviour, telling myself that the cause was the slow and gradual deterioration of his health. He had by then nearly lost his eyesight and hearing, and he was losing his mobility. He had to be helped when doing the most basic things, like sitting up, walking (even a few steps to the bathroom), eating, bathing. Then he developed an attitude of complete apathy. He would stay in bed most of the time with his eyes closed, and I never knew whether he was actually sleeping or whether he was pretending to do so. He lost his joie de vivre, wouldn't talk unless spoken to, refused to listen to music, couldn't watch television, and was even reluctant to welcome friends when they dropped in. Slowly and surely, such visits became less frequent until they practically stopped, and my only means of communication with friends was via the telephone. This self-imposed withdrawal made my husband extremely dependent, constantly demanding things, necessary and unnecessary, just to make sure that I was around and not out of his sight. Everything now centred around him and his needs. I was stuck at home, unable to leave for simple chores. My home became my prison. Coming to terms with this new aspect of my loved one was a very difficult process, as it also entailed the loss of my own freedom. His illness began to take hold of me, physically and mentally. The strange feeling of losing him mentally, even while he was very much alive physically, brought various emotions to the surface: disbelief, helplessness, guilt, sorrow, rebellion. I found myself swinging between a desire to care for him and be there whenever he needed me and a desire to be able to live my own life, to go out, meet friends, play sports... just to be me. I felt let down. How could this be happening to us, to my husband and me? We had both been extremely active previously, and we had always done things together, such as sharing resources, friends and ideas. Now that he had become uncommunicative, I felt insecure. Without his energy and stamina, life was frightening. I was now faced with the task of taking decisions -- minor and major -- on my own, when once we had always done that jointly. After two and a half years of caring for him at home, mostly on my own, the situation became untenable. I was on the brink of exhaustion, and I had to face up to the prospect of looking for an adequate long-term place of residence outside our home, which I eventually found in Dar Fouad Habib (DFH) for the elderly. The decision to place my husband in DFH was one of the most difficult I have ever made. However, it was easier decided upon than actually done. Moving my husband to his new surroundings was far from easy, and it needed wily arguments on my part and a lot of coaxing from the children. For my husband to be deprived of his home, his bed, his books, his computer and his music was unthinkable, even though in recent years he had hardly used many of these things. He argued that these objects were his raison d'être, his stronghold. When we finally managed to admit him to DFH, he was at first submissive, but then, when it had dawned on him that this was to be a long-term arrangement, he became furious and quarrelsome. Now, four months later, he has settled in quietly, and though he still longs to be at home in his own bed, he agrees that the efficient care he receives at DFH is doing him a power of good and that it is not available elsewhere, least of all, unfortunately, at home. Regarding my own decision to live at DFH as well, on the one hand I feel that this is my fate and that I have to accept it graciously, remembering "in sickness or in health." However, on the other hand I am not convinced that the arrangement is good for my own mental health. Arguments battle themselves out in my mind, and trying to understand my own feelings is beyond me. I know that my husband is happier knowing that I am around, and I do not want to let him down. Yet, at the same time being cooped up all the time with patients suffering from dementia is gradually getting me down. I tell myself that I must find a way to divide my time between my loved one and my outside life of work and friends. Time is the best healer, and I hope to be able to solve this problem. Once I can overcome the negative feelings of despair, rebellion and guilt that haunt me, I will hopefully resume my old life. Talking over my experience with a psychiatrist friend, I found that what I had been going through was not uncommon, though few people have the courage to admit it. The psychiatrist said that society is still unwilling to accept the notion that dementia is an ailment of the brain, just as tuberculosis is an ailment of the lungs or hepatitis of the liver. Dementia patients, she urged, should never be shunned or mocked. They should be treated with the love and respect they once enjoyed from society.
