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 the third in a series of 3 articles over the last 3 weeks. Please follow: @Memory_Moments to keep posted and to catch up on all the articles.

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A Brief Blog - People don't know how to talk to people with dementia A Brief Blog – People don’t know how to talk to people with dementia (1105 KB)

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.

You can download this article here:

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

 

Living with Alzheimer’s Not Suffering with it

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

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

There are well over 100 types of Dementia and Alzheimer’s is just one of the types of Dementia for example lets say Dementia is a Car so there are many manufactures’ of cars then there are different models of cars i.e. VW polo, golf, Ford fiesta etc but they are all Cars just a different type. So you cannot have Dementia or Alzheimer’s.

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).

The course was to last 8 weeks and after that well get on with it. A question was asked if any S/U would like to volunteer to help with the Year of Action on Dementia group as 2013 was going to be the Year of Action on Dementia. My wife/carer Joyce said Tommy will do it. I was a bit shocked as I found it hard to put a couple of sentences together but I agreed to do it.

I attended a few meetings thinking that I was just going to be a token figure for the minutes but at the meetings while the group was talking I remember thinking that’s not right, it should be.. and the next thing I knew everyone was looking at me as I had said it out loud the group then asked me to put my point of view and they all listened and said this is what we need to know and from there it when from strength to strength.

I got involved in more groups within the group and found out that Innovate Dementia was starting to help the needs of the S/U and build round them not build it and try and make it fit.

I was filled with the most important thing a person living with Dementia needs. Hope.

In 2013 I was asked to do a talk at the opening of the Florence Institute on what it was like living with Dementia, this was going to be a big challenge.

The day came, the Lord Mayor of Liverpool and other dignitaries’ were there, I delivered my talk you could hear a pin drop my god I thought they are actually listening to me, at the end some people were crying and people came up to me and said they didn’t know and that I had inspired them to look at how they treated their own loved ones.

At this meeting I met Chris Clarke and Henry Moody from Everton football club and they invited me to the launch of their Pass on the Memories Group the following week I said I was happy to attend and again this was a life changing decision.

When I attended Henry asked me if I would like to attend the group which I did and I loved it so much I became a volunteer to help at the other groups that were growing within the group to the extent that there are now 2 different groups on Tuesday and Wednesday’s am/pm every week.

I am in a Merseycare video called living with Dementia which is on their website under videos and have spoke on the Tony Snell radio Merseyside show about living with Dementia and appeared on BBC northwest twice.

We need to get Service Users out and about (they will not want to do it at first).

Talk to the S/U as much as you can and listen if they respond, keep up to date with things that are happening now and happy times from their past, Yes there are times we repeat ourselves but please understand it’s the first time we said it, if you keep saying you just said that we will withdraw and not speak. Get them involved in S/U groups

Don’t keep telling them someone is dead if they ask for them just say where do you think they are and it will pass why cause people to grieve everyday the feelings are real and grieving hurts.

We are still the same person, we are in a maze we can hear your voice but don’t know which direction its coming from, keep talking to us we will come back, we may look and sound as if we don’t appreciate you but that is the illness talking and acting don’t give up on us.

Why can we remember things from the past and not recent memories?

I can tell you the memories from the past have been made and stored so can be recalled, with Alzheimer’s the memory is not made in the first place because the electrical signal that carries the message over the gap between one part of the brain to the other gets blocked by a build up of protein so it shorts the message out just like they use to jam radio signals during the war.

So how come I live well with Dementia?

I was lucky that my wife Joyce gave me the initial push and still had belief in me otherwise I would have done exactly what the illness wanted and that’s withdraw within yourself, sit in till you get cabin fever and can do nothing for yourself.

I still feel it now and again trying to pull me into a place within my brain from where I will not be able to get back, but by keeping busy and helping others understand the illness I found that loneliness is Dementia’s greatest friend and that conversation and company is its greatest enemy.

 Tommy Dunne

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

You can download this article here:

 Living with Alzeihmers Not Suffering with it (1186 KB)

Nantwich Museum and National Cycle Museum now featuring here

In our first week from officially launching this website we are really pleased to welcome 2 museums which have been added to our resources page.

The National Cycle Museum in LLandrindod Wells in Wales: The museum houses hundreds of cycles in period settings, including examples from 1819 through to the present day. A great cycle down memory lane. Those living with Dementia are welcome – no charge for carer. Wheelchair friendly/ facilities.

Nantwich MuseumNantwich Museum in Nantwich Cheshire: The museum tells the story of Nantwich through the ages from the Romans to the present day. The Museum has developed a dementia session which takes place on the first Monday of each month at 2pm; taking different themes, having making activities, with refreshments, giving people time to chat and meet others.

We are always looking for more resources and organisations to signpost people to – so please let us know!

 For more information follow this link

Thanks for the Memory launched

Thanks for the Memory website was launched at the beginning of 2014 to promote events to:

  • Promote memorable and enjoyable events to bring back memories for those attending
  • Raise awareness of the issues families face caring for those living with dementia
  • Create links to organisations who provide support and resources
  • Offer a platform to promote events
  • Provide information on organisations who can put on local events

If you want to get involved, can help or want to put on your own Memory Moment please contact us on this link