Living with Alzheimers – the Carers Story | By Joyce my Wife

I first noticed a change in Tom about 10 years ago, both of us had full time jobs so I brushed the little things off as a bit of stress from his work as he had a stressful job.

But as time went on Tom became more and more withdrawn and he was becoming more absentminded, silly things at first like he would put the milk in the microwave, leave the lights and TV on, put the bolts on the front door but leave the door open, he even went to work one day with different shoes on each feet.

Then over the last 5 years he never spoke to me unless I asked him anything and even then the answers would be short. When I used to ask him was anything wrong he used to snap at me: ‘Nothings wrong –  why would anything be wrong just leave me alone!’

Tom handled all our finances since we got married in December 1970 and everything was paid through the bank. I had been diagnosed with an underactive thyroid and was finding it very tiring working with babies and toddlers so Tom said to me ask if you can do 2 days a week instead of full time so I asked and they said I could only do one day a week so Tom told me to just leave.

Tom taught me to play golf to a decent standard and we had a few good holidays but as time went on I noticed more changes in Tom he looked worried when he came home from work. What’s wrong I used to ask but time and time again he would saying nothing just leave it I don’t want to talk about work, so I left it.

Then one day he came home and he told me they were doing a re-organisation in work and they wanted to take some of his staff off him.

One Thursday when Tom was on leave playing golf he got a phone call off work saying that if he really wanted to leave they would offer him an enhanced package but he would have to let them know by Monday. Tom told them to get the package ready for Friday and he would discuss it with me over the weekend and let them know on Monday morning.

Tom picked up the paperwork on Friday and the figures added up as Tom was able to start a new job the Monday after he was to finish which was in 4 weeks time. Tom sent an email to the Personnel saying he accepted the package and that he would be finishing on the date stated.

On the Tuesday Tom set off in good spirits and told his staff that he was leaving. He also had a meeting with people from outside industries that morning and told them he was leaving in 4 weeks. Tom went back to his office and was told that one of the directors and two other managers wanted to see him, so Tom went off expecting a thank you for your services talk but what he got changed him for ever.

He was told that there had been a mistake and that they may be able to let him go in the future but they needed him to stay (and this is only what I’ve been told by the personnel – Tom just stared at the wall, he did not respond to anyone talking to him he then just got up and walked out of the building).

That day I came home from the golf in a great mood and when I walked in the house I saw Tom’s clothes all the way up the stairs I went up and Tom was under the bedclothes shivering. I said what’s wrong, what’s happened? He could not speak he was stammering every word. None of it made sense.

What had happened to my Tom who had left the house that morning because this was not the same person? I took Tom to the doctor straight away because I’d never seen him like this before.

We were very fortunate that we had a very understanding doctor who at first treated Tom for depression but as time went by she said there’s more to this than meets the eye so she arranged for Tom to see a psychologist.

Tom went to the psychologist for months and seemed to improve then he just nosed dive back down his memory went worse so the psychologist arranged with our doctor for Tom to see a psychiatrist who wrongly diagnosed Tom with bipolar and put him on lithium which they increase every couple of weeks until he was on 800mg per day Tom was like a zombie, never spoke, always asleep never wanted to go out I was losing him, so one day I said to the psychiatrist I don’t think those tablets are working in fact I think they are killing him.

So the psychiatrist said she would like Tom to see the head psychiatrist and Tom saw him and was then only seen by him, he got Tom off lithium and arranged a series of tests and brain scans over the months, one day he came to see us at Home and said I’ve some good news and some bad news.

The good news is you don’t have bipolar. The bad news is you have young on set dementia and the early signs are its Alzheimer’s. I felt a strange relief that would explain a lot of things, Tom just looked dazed. The psychiatrist then said I’ll leave that with you for a day or so to sink in then we’ll talk.

Then another bomb shell hit me. Tom had stopped paying the bills and was hiding the unopened letters in his draw under the bed so I was shocked to see that we were in dept I felt physically sick Tom could not understand it and said put them back.

I contacted one of the debt charities that arranges with your debtors to pay off each month and an arrangement was put in place.

Tom had been put on Aricept and overtime I could see a marked improvement in him but he was still not my Tom. He had always been very intelligent, could work out any problems do any job.

It was heartbreaking seeing him not in control, a shadow of his former self, he was disappearing I was losing him, I realised that I was grieving for him, I wanted him back.

Eventually we were offered a 6 week 1 day a week course for service users and their carers. We enjoyed going to this and than something was asked that was to change our lives for ever. They asked if one of the service users would like to be part of the Year of Action on Dementia (YAD) committee and I said Tom will do it, I will not describe the look he gave me but he agreed to do it.

Anyway Tom went to the meetings and I noticed that he was regaining his confidence and seemed to have a purpose in life again he had a get up and go about him. Tom helps out at the Everton pass on the memories group twice a week and gives talks to GPs and medical staff about living with dementia, he has also done videos TV and radio.

I was bursting with pride when he won the Merseycare positive achievement award and the overall winners’ prize in 2013.

We downsized our home to a bungalow which we both love and more importantly we are debt free. Tom is very happy doing his voluntary work helping people with dementia and for the first time in years I have stopped grieving and have drew strength from what Tom is doing, I now encourage family carers to be positive.

Don’t get me wrong, life is not a bed of roses living with Tom he can be a pain sometimes and a bit snappy because when he thinks he’s right, he’s right but now I just walk out of the room for a minute and then when I come back in he is as right as rain.

I know I’ll never get the Tom that walked out the door all those years ago back but he has taught me that even if he is only here in body he can still hear me even when the day comes that he cannot answer me he has told me he will hear me.

Joyce Dunne

This is the second in a series of 3 articles over 3 weeks. Please follow: @Memory_Moments to keep posted as they appear.

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 Joyce my wife – A Carers Story – Living with Alzheimers (1182 KB)