Don's diagnosis of Alzheimer's disease was not a great shock as I had suspected it for some time. He had never had a serious illness, never been in hospital so I always thought he would survive me by many years. In early 1998 I was sure there was a problem looming but I was the only person to see it. Not even the doctor could be convinced. So we just went about as normal and planned our lives ahead. In 1999 I was determined to have some notice taken, once again it was dismissed as advancing years. In October 2000 I was given a referral for Don to see a neurologist who was sure it was Alzheimer's disease but wanted a spect scan done to rule out other problems. It was confirmed by the scan and Exelon was subscribed - this played a major part in slowing down the progression of the disease. It prolonged his normal life and we were able to make some vital decisions about our future.
We had happy memories of our travels in late 1999 and up to April 2000, so glad we had experienced the wonders of India, Nepal and other countries, knowing we never would again do these journeys together.
I do believe the drugs have helped Don and although we were told that it was not a cure I did expect that their effectiveness would last longer. From October 2002 to February 2003 a steady decline was occurring. I was not prepared for the rapid progression which has been taking place in Don's journey through the disease.
I wonder if other carers feel the loneliness I am experiencing. Family members ring often and visit when possible, for which I am grateful. I have wonderful neighbours who give us both support and offers of help. But the loneliness I feel is the loss of Don's companionship and friendship. Having said that, at times I feel a little resentful, it creeps up on me when I am tired and I realise I'm not just looking after his personal care but all the chores we shared are now my responsibility - alone. His health has to be considered, incontinence to be worked through, nails to be cut, shoes to clean, visits to the barber shop, off to the doctor, medication to be given, teeth to clean, car maintenance, tyres to check, even filling the tank. I never did these things. How much air should go into the tyres for instance? As a carer there was so much I hadn't thought about. Add to this the cooking, shopping, cleaning and washing - easier when I was younger but so tough when you are in your seventies. Our lives have always been busy as we are parents of nine children and life has been tough at times.
Don is the kindest man I have ever known, gentle, sweet, loving and sharing, tolerant, considerate and patient. When diagnosed with Alzheimer's disease he cried and said he would get better. As time passed he realised this was not going to happen. Exelon was not going to allow him years and years of a normal life. I'm glad he isn't aware of what he is doing and saying. All the problems that happen in Alzheimer's disease which are destroying his mind are what he was afraid of happening. I can't begin to imagine what it would be like to have the disease - the frustration of not being able to remember the words you are searching for, the terror you must feel, anxieties, hopelessness and disappointments in not knowing your future, not having the freedom to do what we did before.
We look at photos of the children, grandchildren and great grandchildren. A few months ago Don could remember them, now he doesn't know their names or faces. He no longer knows me as his wife, he tells people I died or went away but that he loves his carer (me) or the office lady (me) or the cook (me). Don is taken on outings with Respite Options. The volunteers do a wonderful job giving up their time to take groups to various locations, prepare and serve their meals, talk and walk with them. Thank you.
Carers of dementia sufferers are very special people. Not all enjoy good health and most are elderly. Five to six hours a week respite is not enough time off from a 24-hour/7-day a week job. We badly need a daily respite centre where our loved ones can be left with confidence. Our needs should be of great concern to the Minister and Councils to hasten decisions on future projects and adequate funding must become available.
Alzheimer's disease is a source of amusement to some people. Recently I had a really bad day and an even worse evening. The Logies were on TV and Don Lane was being presented with a "big surprise" - a Hall of Fame placement. Why did he have to say such a horrid joke about Alzheimer's disease without considering the feelings of others? I do have a sense of humour and can see the funny side of things but as long as people make fun of dementia there is less chance of getting support from the people who count. We need to be taken seriously and participate and support Dementia Support Awareness Week in September in every way we can.
You were my strength and now I have to be yours
You helped me make decisions, shared my thoughts, my dreams, my love
We did everything together - we were an extension of each other
I've read that I will lose you twice
I doubt I will survive once
The feeling is unbearable
I pray for you that you will not feel pain
I pray for myself that I will not get dementia because who will care for me?
I have written about the man without Alzheimer's disease and the man with Alzheimer's disease. I can guess what the future holds for us. I pray that I have the strength to make the right decision at the right time for Don's benefit not mine.
I have a wants list. I want or need Don:
My tears are falling, my heart is so sad, if only I could make you whole again and take away your fears.
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page updated
14 September, 2007
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