Living with dementia May 2009

Cathy Sargent's husband, Alan, was diagnosed with Alzheimer's in 2000.

Here, she shares some of her diary extracts in the hope they may help others in some way*

Introducing Alan
Alan started to develop dementia when he was 52 and it progressed very rapidly. He is now 66 and has been in care for nearly seven years. He lives in a nursing home in St Leonards-on-Sea, a 40-mile drive from my home in Kent. He hasn't known who I am for many years and visits are very painful.

He is unable to do anything for himself, not even sit up in bed. He has his good days and his sleepy days. On the latter he is allowed to remain in bed and sleep as much as he wants. On his good days he is put into his chair and wheeled into the common room.

When Alan went into care it felt like a bereavement. I couldn't stop crying. l made a book on his life illustrated with photographs because I wanted the staff to know the person he was; outgoing, confident, active in local politics and the National Trust. A man who enjoyed cricket, rugby, holidays, the company of family and friends, a very loving and much loved husband.

Diary extracts (2000)
23 May
When I was in the middle of ironing, Alan removed the plug from the socket and said I was not to continue. When I told him that I had only a few more items to iron, he said that he wouldn't allow it.

When I put the plug back in, he immediately took it out again. I didn't do this again, as I was a bit concerned that he may pick up the hot iron and burn me with it. He said that I knew I was in the wrong and asked why I didn't just admit it. He also mentioned that I had not paid to use the iron.

31 May
Alan became very agitated prior to setting out for our appointment. He thought someone was going to murder him. When we were in the car he said that it was me who was going to murder him. I told him that I loved him and asked him why I should want to murder him. He said he didn't know but that was how he felt.

16 June
Alan got up before me and I went back to sleep. However, I was awakened by a pillow being pressed firmly over my head. I said, 'Stop it Alan, you're smothering me.' He said, 'That's what I'm trying to do. You've stolen my credit cards.' I soon managed to free myself and helped him look for the missing cards.

An hour later he was tearful and apologetic. However, later in the morning he was calling me 'scum' because he couldn't find his diary and assumed I had stolen it.

10 July
Today was not a good day. Alan insisted that some folders I had in my hand were his and tried to grab them from me. He ended up pushing me, shoving me to the ground, slapping me and forcing me into the study. He then stood over me threateningly with his fingers digging into my arm. I made the mistake of biting his hand and he slapped me hard across the face twice.

He then started shouting to non-existent people in the house. While he was distracted I managed to scramble into the loo and lock the door. He kept banging at the door trying to get in. After about 15 minutes when all seemed quiet outside I came out. He then treated me as though nothing had happened and wondered why I had been crying.

,p>1 September
Aricept was prescribed again. (It was originally prescribed in June but Alan hid the tablets from me).

 

2001
10 January
Frankie from Crossroads spent the morning with Alan. She said he was no longer on tenterhooks for the last hour wondering when I would be back. In fact when she said I'd soon be back, he didn't seem at all interested!

11 January
We were summoned to a case conference where all the professionals charged with looking after Alan could meet him and discuss his ongoing care. The whole thing was a complete farce. Alan's key worker, who had called the meeting, had to rush off before it started due to some crisis at home.

Our own GP, Alan's care manager and the early onset dementia manager, were also unable to attend. The meeting therefore consisted of Alan's psychiatrist, my Admiral nurse, Alan and myself. It lasted for ten minutes and things will continue as before.

14 January
I went walking in the morning and Alan happily watched the cricket on TV. He also managed for the first time to play one of his CDs on our new music centre. I had put sticky labels on the three buttons he had to press.

2 February
Alan still sees his attendance at Park Lodge (day centre) as a job and has again asked me when the money will start to come in! I have told him that he won't actually get any more money; it will just mean that his benefits will continue to be paid. He seemed quite happy with this explanation.

I didn't want to say anything to him that might have the effect of him not wanting to continue at Park Lodge. Betsy says that he is a lot more relaxed since he has started going two days per week.

17 March
We went to a St Patrick's Day lunch run by Alzheimer's Society. I told Alan that we would have to look quite smart so not to put on his old jeans. Needless to say, on went the jeans and he was most annoyed when I asked him to change.

Nevertheless, he reluctantly agreed to change and then told me that the trousers I put out for him were totally wrong. Although I won the battle, I lost the war! He was quite disagreeable to anyone who spoke to him. When one lady asked if he enjoyed his lunch, he said 'no'.

28 August (holiday in Cornwall)
I was awakened at 1.40am with Alan pulling all the bed covers off the bed. When I asked him if he was too warm, he told me to shut up. He would not allow me to put the covers back on the bed and was very aggressive. I was in tears and very upset. He then pulled the pillow from under my head and told me to get out.

When I made no move to get out of bed, he pushed me out. When I asked him why he was doing this, he said it served me right. I sat on the chair in my nightie but didn't dare to pick up the duvet to put around me as I thought any movement from me would only provoke him further.

I cannot remember when I last felt so unhappy. I sat for what seemed like ages, but may only have been about an hour, hoping he would go to sleep. Suddenly he turned to me and asked me in a very concerned voice what I was doing sitting there. He also couldn't understand why there were no covers on the bed.

We put the pillows and a sheet back on and then went back to bed. By this time it was 4am. When I was sitting in the chair during the night I decided that I couldn't take any more and that it was in everyone's best interest if we cut the holiday short and went home.

2002
12 January
We had an appointment with Alan's psychiatrist. I told him I had noticed a significant decline in Alan's powers of understanding what was being said to him and in communicating with others. Aricept discontinued as it was no longer effective.

8 April (crisis point)
Again Alan would not get into the shower and kept pushing me away. He would not clean his teeth or let me clean them. He also would not allow me to shave him. He looked and smelled terrible. His hair was all greasy and lank. The ladies from Crossroads were quite shocked by the deterioration in his appearance.

In the afternoon Frankie rang and asked me how I was. I told her that I felt I had run into a brick wall and that without co-operation from Alan there was no way I could cope with his personal care. He is bigger and stronger than me and easily able to resist every move I make. She took the situation very seriously and felt that a crisis had been reached.

Alan went into respite care for nearly two weeks and this gave me a chance to recharge my batteries. To cut a long story short, Alan didn't come home. I rang his CPN and told her that I couldn't cope. It was arranged for him to go to Priority House, the psychiatric department of Maidstone hospital, where he stayed for 18 months.

Today
I realise now that I have moved on. Much as I love Alan, I have started to rebuild my life without him. I visit him two or three times a month. This is to fulfil a need in me to be near him. I have no way of knowing if it makes any difference to him.

*Cathy and Alan's sister, Stephanie, both felt Alan would have wanted the maximum impact in raising awareness of the effects of dementia, which is why they are happy for the extracts to be published.

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