A shadow of themselves
How do you cope when someone you love no longer knows who you are? Joanne Appleton talks to three women who are all caring for someone with dementia
It’s easy to joke about ‘losing your marbles’ when you say something silly, or forget where you’ve put your glasses. But for the carers of around 700,000 people with dementia in the UK, ‘losing your marbles’ is no joke.
Val’s husband Peter was 53 when he started to show signs of forgetfulness and a lack of concentration.
“The worst aspect of the whole situation was that he looked so well,” remembers Val. “There seemed to be the unspoken question from others of ‘how can anything be wrong with him?’
“Peter would go to great lengths to explain what an item was used for, what it looked like and where we could buy it from because he couldn’t remember what it was called. Any form of measurement totally confused him, and instructions would have to be explained in the greatest detail. He had the same awareness of danger as a toddler, which caused problems for his job as he drove a fork lift truck. Eventually he had to leave work altogether. ”
As the condition progressed, Val found she had to form a new relationship with her husband.
“His very essence and personality changed completely. At the start of our marriage Peter was the ‘rock’ and I was the emotional flyaway. As the dementia grew worse, our roles reversed and he became the one who slammed doors, threw things and wept in frustration and despair. The worst thing was I couldn’t talk to my best friend about the problem and how it was affecting me, because he was my best friend, he was the problem and he was affecting me.”
Peter was diagnosed with Alzheimer’s disease in 1994. This is one of the most common forms of dementia, along with vascular dementia. In both conditions, the person’s ability to remember, understand, communicate and reason is affected due to progressive changes in the structure and chemistry of the brain. The progression of Alzheimer’s disease tends to be gradual, whilst vascular dementia is caused by small strokes, which can cause a sudden deterioration in the person’s symptoms
After six years of coping with Peter at home, with only some respite day care, Val’s already poor health deteriorated to the point where she was faced with the heart-wrenching decision of finding a care home where Peter could be looked after full-time.
“I tried to explain to him that the reason was my failing health, but he felt he had done something wrong and wanted to correct it. Placing him in a home was the worst decision I have ever had to make in my life.
“After he left, I found myself totally adrift and fell into a deeper depression. I was grieving for the loss of my husband and no one seemed to understand. Gradually, with prayer and counselling, I came to accept that I had done the wisest, most loving thing. I had given of my best, but Peter’s needs had overwhelmed me. Thankfully my faith remained intact.”
Val was advised to go to a support group. She wasn’t sure how much it would help, but she discovered the group genuinely understood what she was going though.
“We helped each other so much by sharing experiences, including bewildered and angry tears, but also with a much needed sense of humour. It was truly amazing to be able to talk with people in a similar situation.”
Peter has now been in residential care for more than seven years. In that time his condition has deteriorated to the point where he can’t walk or talk, but he is able to laugh, shout and whistle very loudly. Everything, including feeding, has to be done for him.
Val continues to visit him. “He does seem to enjoy my company,” she says. “He hangs onto my hand all the time I am there. The Professor who diagnosed him said that the last memory that would go was that I was special to him in some way.”
For many people, caring for relatives with dementia is one more thing to juggle with everything else they have to do. When Helen’s aunt showed signs of dementia, she decided to buy a house closer to Helen so she could be ‘looked after’. Before she managed to sell her current house, however, she became ill, and had to move in with Helen.
“It was a very difficult time,” admits Helen. “She found the way we ran our lives very strange, becoming concerned when I would leave the washing up while I ferried children to evening activities or washed clothes on days other than Mondays!
She thought my 14 year old daughter was being lazy when she sat around doing homework, as she had gone out to work at that age. We also all had to cope with her getting lost in the middle of the night when she went to the toilet and couldn’t remember where her bedroom was. She would switch all our lights on looking for an empty bed!”
Helen’s aunt eventually moved into her own house where she lived for nearly six months before going into a nearby specialist dementia care unit. During this time, Helen visited her at least three times a day to cook, fetch shopping, clean or take her to hospital appointments.
“I found that sorting out care at home for her was very difficult, as she didn’t see why she needed it and kept telling people she was alright and could do things herself. I also had to deal with a backlog of things such as getting her eyes tested, her hearing aid upgraded, trying to get underwear that fits, replacing shoes with holes and so on!
“Thankfully our children were old enough to leave at home together, and people at church were also very supportive. They ferried my children around and did all sorts of practical things, otherwise I would have never have coped!
“It was also very difficult to visit my mother, or my in-laws because of the amount of time my aunt took up. Now she is in a home I am mostly just a visitor, although I am trying to sort out her money so that she can stay in the home for the rest of her life.”
While Helen has had good support from friends and family, Pauline found it difficult to get people to understand why she moved her mother from three hours drive away to live with her.
“We began to notice that Mum’s house wasn’t as clean as it used to be even though she was very house proud, and she would overstock on household items. My brother phoned her several times a week, but she would have lucid conversations with him and he initially found it hard to understand our concerns. You had to spend a longer period of time with her to realise that things weren’t as good as you first thought.”
For Pauline, the last straw came when her mother nearly overdosed on Warfarin tablets because she couldn’t remember when she had last taken them.
“A fall probably would have resulted in a very nasty bleed,” says Pauline. “I was all for taking her to live with me straight away because I didn’t feel she was safe to live on her own. When we received the official diagnosis of vascular dementia in August 2006, the consultant told her she needed to move nearer her family while she still had the ability to make friends. In his experience, those with a faith made friends more easily!
“We couldn’t move her straight away, so a neighbour (who wasn’t a Christian) took on the task of giving her the tablets every day, and other friends got shopping for her and checked food in cupboards. A few in the church were supportive, but on the whole they didn’t recognise her needs because they didn’t see Mum for any period of time. In fact, one elder phoned me to say she was perfectly alright; I would kill her if I moved her, and that God would look after her.”
When Pauline and her family had her mum to stay at Christmas, they ‘forgot’ to take her home. Although she was sad, Pauline says her mother was also glad that she didn’t have to say goodbye to all her friends. The family had experience looking after a child with special needs so were realistic of the kind of care she would require.
“Mum lived with us for three months, but in the end we realised that it wasn’t going to work and we needed to make an alternative arrangements. Having worked in care homes over the last ten years, I knew what I wanted and what questions to ask. I found one I really liked just five minutes from me and Mum moved in a week later. She is so much better there – she has made friends, has company all the time and the carers love her sense of humour.”
One of the biggest stresses for Pauline has been trying to sort out her mother’s finances to enable her to stay in the home. “We are selling her house, but don’t know if it will be enough. Had she spent her money and enjoyed it, she would have been eligible for help from social services.
“You don’t want to have to deal with that side of things, speaking to faceless people who say they can’t speak to you because you’re not the person on their file! When you explain that person has dementia and won’t understand what they’re saying or remember any memorable password they say ‘data protection’! But all you have to do is to write a letter and get the person to sign it – so where’s the protection in that!”
But despite the problems, Pauline says that having her mum nearer has helped their relationship. “We had never had a good relationship, but I understand her so much better now. I am so grateful for this time and the healing to me and our relationship that it has brought.”
When asked what is the hardest thing about caring for someone with dementia, Val, Helen and Pauline all say it is not knowing the future, and how the condition will progress.
“People are surprised that Alzheimer’s doesn’t affect the life expectancy of older people,” says Helen. “Friends tend to assume that my aunt is likely to die quite soon, whereas she could well be like her mother who suffered from fairly severe dementia for over 20 years.”
But faith in a God who knows the future is a great help. “My wonderful husband is now a shell of what he was,” says Val. “I cannot say if I want him to live or die. But I am glad that is God’s decision, not mine.
“I also have God’s own promise that he will never, never leave me or forsake me. With him and his might, strength and love I know I will endure to the end. That changes everything.”
For more information about dementia, and support for carers, contact the Alzheimer’s Society, Devon House, 58 St Katharine's Way, London E1W 1JX Helpline: 0845 3000366 or visit www.alzheimers.org.uk