Living not Suffering with Alzhemiers – Tommy’s story in 3 Parts

I’m Tommy Dunne I’m 61 years old and I live with Dementia.

This is a summary of my story from the last few weeks. As told from the Inside!

Part One: As told from the inside – out

I thought you had Alzheimer’s not Dementia a lot of people will say so let’s clear up this misunderstanding straight away:

Alzheimer’s does not stand alone it is Dementia and Dementia is the umbrella that all the others sit under.

Next the saying that we suffer with Alzheimer’s or Dementia.

We do Not suffer. There is no physical pain. You do not have a headache or migraine symptoms. You are very frustrated and lonely yes, but there is no physical pain – so please stop saying we suffer from it. It causes fear to people who are worried about getting Dementia.

Since I learnt to talk again (when you are diagnosed with Dementia you go into a shell) I was able to tell people and the medical profession what it is like to live with Dementia and the loneliness that goes with it.

When you are in a full room it can be the loneliest place on earth. 

People will talk over you, around you, about you but never to you.  Then people used to come up to my wife while I was standing or sitting by her and say to her “how’s Tommy it must be very hard for you” and “how are you coping with him”  “I don’t know how you do it?”.

It was around this time that I realised that when you have Dementia you developed a super power, the power to become invisible in public.

Sometimes I felt as if I was at my own wake and when I heard my wife saying “I feel as if I’ve lost him I’m grieving and want my Tommy back” my heart use to break, I mean I don’t feel any different a bit stranger but not different.

So when did I start to get my life back? It began at a meeting of Service Users and Carers in 2012 (a service user is a new name for patient i.e. I use the services of Merseycare Mossley Hill hospital therefore I’m a Service User (S/U).

For the rest of part one of my story: http://bit.ly/1hXQPID

Part Two: the Carers Story By Joyce Dunne 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But as time went on Tom became more and more withdrawn and he was becoming more absentminded, silly things at first like he would put the milk in the microwave, leave the lights and TV on, put the bolts on the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!’

… 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. …

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.

For the full story of Part 2: http://bit.ly/1ce1V7Y

Part Three: People don’t know how to talk to people with dementia, they don’t realise we still have our intelligence.

‘Alzheimer’s, I thought they said Alzheimer’s that can’t be, I can think, I can function, does this mean I’m going to be put in a home and have to spend the rest of life sitting in a chair in a home where my family would visit me every week, and then that week would go to every fortnight, then every holiday.’

Fear ran through my veins, my blood ran cold, I imagined being still able to think and not being able to communicate with my family, and the only words they would speak to me was “are you OK, you look well”  “its nice here, nice and cosy” and then being given a pair of bed socks and a bunch of grapes.

Believe me, there’s a lot rushes through a brain that’s not supposed to be working at this time.

I withdrew into a shell and would stay in bed till late, watch daytime TV (the same things over and over) and go to bed early. This is what I thought you did when you had Alzheimer’s, you could not contribute to society.

I’ve heard it over and over again, You suffer with dementia and that was the one thing that terrified me, that I was going to be suffering all the time, but as time went on I never had any pain, so I asked other people who attend some of the support groups I helped out at if they suffered, without fail everyone of them said they did not suffer.

When I’m in a room full of people I know, I feel the loneliest person in the world, because people will talk over me, around me, about me, But never to me.

Yet when I’m in a room with strangers, they talk to me, until I say the magic words “I’ve got dementia” and hey presto I turn invisible, Yes you gain the power to become invisible when you get diagnosed with dementia.

People don’t know how to talk to people with dementia, they don’t realise we still have our intelligence. You see it with people in wheelchairs, people talk to the chair. With a blind person they speak to the guide dog, but dementia is an invisible illness because we look well.

Tom

This is a summary of the series of 3 articles over the last few weeks. Please follow: @Memory_Moments to keep posted and to catch up on all the articles.