Living With... Dementia

Kevin BarrKevin Barr worked for our Open Doors Dementia Service from 2016-2017 as their Network Facilitator and is one of three service users living with dementia that have been employed by Greater Manchester Mental Health Foundation Trust (GMMH).

Kevin feels passionately about raising public awareness of  dementia and strives to help and support people to maintain a fulfilling, meaningful and productive quality of life.

Kevin a retired as a solicitor when he was diagnosed with early onset alzheimer’s dementia in May 2014. Kevin became worried about his memory when his father, aunt and uncle had dementia and he became concerned when he also started to forget things. Kevin went to see his GP and was then referred to the Salford Memory Assessment Team, where he undertook a memory assessment.

“When I received my diagnosis, I felt devastated and unsure what the future would bring. I was reassured by my consultant Dr. Noble that you can live well with dementia and there is a lot of support in Salford for people receiving this diagnosis. 

I was firstly invited to attend, together with my partner Mary, a Post Diagnostic Course. Over several weeks, we were provided with information and guidance of how to live well with dementia and what to expect in the future.

Early this year, at one of these meetings, it was announced that the Open Doors Dementia Service was looking to recruit an additional facilitator to set up a new support group. I decided to apply for this role and was lucky enough to be appointed.

At the monthly meetings we chat about our experiences and exchange information about services and various other support groups in the Salford area. Information is also given about research and discussions are encouraged but there is no pressure to participate. This is left up to the individual group members’, who are welcome to join in if they so wish, and indeed they often do once they become familiar with other members of the group.”

Read Kevin's Dementia Diary below.

Don't Stop Believing - June 2017

This month we went over to the Isle of Man for a couple of days. We flew over from Manchester Airport.  Mary’s cousin Lorraine met us at the airport and took us to The Sound for a coffee.  The Sound is a café which overlooks the sea with great views and we could see ferries passing in the distance on their way to Ireland.

We had a really good time and stayed at a hotel in Douglas.  On the Sunday we went on the steam train which travelled along the coast and finished at Port Erin. The only incident which could happen to anybody was when I went to the bathroom during the night and then went out on to the landing and the door shut behind me.  Luckily Mary was to hand and pulled me back into the room with my lack of clothing, which could have proved very embarrassing.

We have also been to Nottingham University where my daughter Ellie has completed a fashion and design degree.  When we arrived at the hotel I confirmed that we were meeting my niece and asked Mary her name which I knew began with E.  I do have a niece called Elisa and it caused me concern that I had forgotten my daughter’s name.  When I was reminded that it was Ellie my daughter, I did remember and of course knew who she was immediately when I saw her later on that day.  This is of course a concern to me that as the dementia progresses I will forget people and names and especially people who are close to me.

We went to Irlam Live to see Alexander O’Neill and chose a spot not too far from the toilets so that I wouldn’t get lost.  We sat down and of course I needed the toilet. I did get lost and my watch started ringing, it was Mary saying ‘where are you’.  I told her that I was near Mr Whippy and she said she was looking at Mr Whippy but couldn’t see me.  I then asked her 'could she see the Irlam Live sign?' and it turned out there were two Mr Whippy vans and I was outside one and Mary was looking for me outside the other.  I then saw her frantically waving and coming towards me.  Thank goodness for my watch because if I hadn’t been wearing it we could have been looking for each other for ages. 

Another sign of my dementia which concerns me at the moment is that when I am made aware of something which is going to happen in the future I will continue asking if it is tomorrow because I believe it is going to happen tomorrow. It doesn’t make sense but that is what my mind is telling me.

I have registered for the Memory Walk at Heaton Park on 30 September which is also my daughter’s birthday.

On the whole it has been quite a good month and I am still believing

Don't Stop Believing - May 2017

It’s been a quiet month and not much has happened really.

My dementia is slowly progressing and it has been pointed out to me by a certain person that my reading skills are not what they use to be. I am blaming my age because I have reached the ripe old age of 62.  My other half disagrees, but I am right...

In order to try to combat this we have decided that I will read out loud from a book each day and the book I have chosen is ‘Living your best with Early-Stage Alzheimer’s' by Lisa Snyder.  This book is essential reading but normally I wouldn’t be bothered reading it because I find it hard to concentrate for long and then forget where I am up to.  Several times I have had to start all over again. I am finding it so helpful but at the same time it can also be difficult because it is happening to me and that can be scary.

Nevertheless the book offers invaluable tips and advice on how to cope effectively with the condition.  What is so important to me also is maintaining hope and humour which I think is essential for this very difficult journey.

Mary is still leaving me a note every day and particularly on a Wednesday to tell me to wait until she picks me up at 12pm for The Book Club.  Despite this I still leave the house when I am ready but luckily I also receive a phone call to my watch which is on my wrist telling me to go home and wait for her to come at the correct time.

I am afraid that I am still putting things in silly places and mislaying my wallet on a regular basis.

Next week I will be meeting with a friend whom I haven’t seen for at least 37 years and I am looking forward to it so much, especially because I know I can remember the great times we had then even though I can’t remember what I did this morning.

During the past few weeks I have noticed on the television that there have been adverts highlighting the fact that the number of people living with dementia is at an all-time high and this figure will continue to increase which makes it so important to continue to keep raising awareness and push for more research and find a cure and this is why I will continue to keep believing especially with Dementia Awareness Week around the corner.

Don't Stop Believing - April 2017

Mary and I went to Harrogate this month for a short break. When we arrived we parked down a back street behind the hotel and Mary walked round to the front of the hotel to ask if there was somewhere we could park. 

She had parked across somebody’s drive because there was nowhere else to park and thought it would be okay just for a short while.  Whilst Mary was gone a couple of women came out of the house and were annoyed because one of them said she came to visit her son once a week and told me we had no right to park there.  I didn’t know what to say and got out of the car and drove it down to the road where Mary was just walking back. 

The traffic flow was one way and we had to go round the block again eventually parking behind the hotel.  This upset me a great deal and on reflection I should have shown the women the card I have in my wallet saying that I have dementia and perhaps they would have been more understanding.

Later we went to a cash machine but I couldn’t find my bank card.  I kept looking through my wallet but it wasn’t there and I haven’t found it since.  Luckily the branch was open and I was able to withdraw some cash and report my card as lost.  A new card arrived a few days later.

I should say that we then went on to have a great time, the hotel was lovely and we had a very enjoyable evening and the food and atmosphere was excellent.  We agreed that it definitely warrants a further visit.

On Wednesday afternoons I usually go to the book club as part of my role with Open Doors.  Mary left me a note to say what day and date it was and that I should be ready at 12pm when she came to pick me up.  Judith the nurse from the drug trial called in the morning to take some blood and I then took Harvey for a walk.  I hadn’t been in long and still had my walking gear on when Mary arrived to pick me up expecting me to be ready but I wasn’t, I hadn’t even had a wash or brushed my teeth and I don’t know where the morning had gone.

Mary was very annoyed and shouted at me which really upset me because I had completely lost track of time.  I had a quick wash, brushed my teeth and changed my clothes but it was now 12.30 and I was already late.  We were just about to leave when I realised I hadn’t got my wallet.  We looked everywhere but couldn’t find it.  Mary phoned the bank to report my card lost but was so long on the phone that she was also late going back to work and by this time we were both extremely upset and Mary kept crying.  In fact she was so upset she didn’t go back into work that afternoon.

It’s a learning curve and Mary tells me she regrets the way she handled the situation and now understands that even though she had left me a note telling me to be ready at 12pm, my perception of time is so different and, perhaps she should have given me a ring at 11am to remind me to have a shower and then again at 11.30am to check I had done.

Mary is of the opinion that my condition has deteriorated since I have been taking part in the drug trial and we made the decision that afternoon that I would not continue to participate any longer and I have now withdrawn from the trial.  It may be that I was taking the placebo and my condition has deteriorated on its own but I will be interested to find out.

Since I have stopped taking the drug I do feel a little better and not quite as bad.

I am still believing although this month has been a very difficult one.

Don't Stop Believing - March 2017

I was 62 years old on the 21 February and Mary put together a Memory Box for me.  I understand the idea is that I can build upon it and put into the box whatever I want to such as writing a letter to my daughter Ellie and telling her how I feel about her or I could make my own notes and add some more photographs.

I may have dementia but I can also use the memory box to record current things which are happening to me and making my memories of the future.

I appreciate that as my dementia progresses it is becoming more and more difficult for me to express into words what I mean and this is so frustrating sometimes. Even now I can’t take a message on the phone and although I sound to the caller as though I understand them and tell them 'yes I will pass on that message', it isn’t as easy as that. I took a message for Mary, which was for her to call back to arrange an appointment for a scan but I found it so difficult explaining it to her.  She eventually realised who had rung but we couldn't find the number which I was certain I had written down, but it had somehow disappeared.

Time is still a problem for me and especially remembering the days of the week.  I wake up in the morning and don’t know what day it is.  Mary is still leaving me a note every day reminding me.

I now have a watch and the hub has been downloaded to Mary’s phone.  There is a tracker on it which gives Mary details of my whereabouts and sends an alert to her phone.  It doesn’t give my precise location but shows I am nearly where I actually am.  On a Wednesday I go to the book club at Eccles and Mary will leave me a note telling me not to leave home for the bus until 11.15 am.  I know it annoys her because I never wait until then and am always early.  Last Wednesday her phone alerted her that I was actually in Eccles at 10.30 which is far too early and I had to kill time until 12.30.

I have also started the trial for the drug called mastitinib and I am taking two tablets a day one in the morning and one in the evening for a month now.  I think I am on the placebo because I haven’t had any side effects at all and don’t feel any different but we won’t know until the six months are up.  I understand even the doctors and nurses don’t know whether I am on the actual drug or the placebo.

Time is a big thing with me, I seem to be obsessed by it, constantly checking my watch, which is very interesting at the moment because I am wearing two. I know it would be logical for me to put away my old watch and wear the experimental new one, but I can’t and keep putting them both on.

It’s been another up and down month and I have had moments when I have felt low.  These seem to be when I am on my own and don’t have anything to occupy me.  I feel it is so important to try and keep active and if it wasn’t for the dog and Open Doors I wouldn’t have any sense of purpose and this keeps me believing.

Don't Stop Believing - February 2017

Another up and down month.

It was my sister’s birthday on 24 January and Mary and I had been to Bents (garden centre) to buy her a birthday present.  On the way back in the car I said ‘what shall we get Bill’ and Mary said it’s not Bill’s birthday.  I had forgotten that Christmas had been and gone and thought the present for Yvonne was her Christmas present.  What was more disconcerting was the fact that I couldn’t remember Christmas.  I asked Mary what we did on Christmas Day and was very upset when she told me, but I couldn’t remember.  We further discussed what had happened over the Christmas holiday and I started to remember.

It is the most awful feeling when you can’t remember things that have happened and my mind was a complete blank.

Another incident which is of concern to me is that one Tuesday evening when Mary had returned from visiting friends I was taking Harvey for a walk and hadn’t realised his harness was twisted and I had also put on his lead but in addition put on a second lead and was in the process of putting on a lock which is used for his cage when Mary intervened and this caused a terrible row and a great deal of upset. 

I thought I was being accused of mistreating Harvey but I wasn’t and didn’t realise this at the time.  Mary didn’t go into work on the Wednesday because of my behaviour and she admits she didn’t handle the situation very well she got very upset. She couldn’t find the phone number of our social worker because she wanted to tell somebody, as she felt she couldn’t cope and needed help.

During the course of Wednesday when things had calmed down and we talked about it I realised that my behaviour was a little worrying but even now I don’t know why and I appear to have forgotten.  The only explanation we can think of is that, it was a moment of confusion and there is no explanation as to why I did it and I just hope it doesn’t happen again.

My losing things continues and one Saturday after walking Harvey I came into the house and my glasses steamed up when the heat hit me.  The next thing I can’t find my glasses.  Considering I can’t see a thing without them it is unbelievable that a search had to commence and we eventually located them on the radiator in the hallway.  That same evening I went to put my slippers on and one was missing. Another search ensued and I found it in the kitchen.

I am still confusing the days and times and wake up each morning not knowing what day it is.  If I am asked to put my coat away I will go into the kitchen and then realise I should be going into the hall.

I have now started the drug trial for a drug called masitinib which will run for six months.  It's early days and I will keep you all updated.

Also on Friday I will be getting a watch from Manchester University.  There is an app which can be downloaded to a phone and Mary will know exactly where I am at any given time.  This will be useful for when I take Harvey for walks and will ensure that I won’t get lost because I can be tracked.  It makes Mary feel better because she will also be able to contact me through the watch.

Although it has been a difficult month, I am still believing and hope the rest of the month and March is better.

Don't Stop Believing - January 2017

Happy New Year everybody and I hope 2017 is the year they find a cure for dementia.

I think that Christmas is a time for families and especially children.  Following my diagnosis in May 2014, however, that Christmas was awful for us because we were still coming to terms with my diagnosis and we were worried about what the future may hold.

Since then I have enjoyed the last 2 Christmases and am looking forward to many many more and I wish the same for us all.

There has been no significant change in my dementia, I am still forgetting and losing things on a regular basis.  I have recently lost Harvey’s harness, a pair of gloves and my hat.  We have searched everywhere but to no avail and Mary is convinced I have another house and that’s where everything is.

What is becoming very obvious is that I am a lot better when Mary is at home.  Since she has gone back to work I have felt lonely and on some days quite bored.  This has caused me to check my emails which is not a good thing.  I did promise to wait until Mary comes home from work and we will check my emails and respond appropriately together.

I took a look at my emails on my own and responded to them absolutely convinced that I had received them that day.  In actual fact they had been received a couple of weeks previously and Mary had told me about them and we had responded to them. Of course I had forgotten this.

Some sort of red mist comes down and It doesn’t occur to me to check my sent box to see if I have responded previously because I am convinced they have only been received that day because I have forgotten that I had read them before and I was convinced that they had been sent that day even though the date at the side showed differently. 

The lesson to be learnt from this is to check with my secretary first because, as you will all probably agree, sometimes our mind can play tricks on us and this is what happens when you have dementia.

I attended Trafford General Hospital on Monday this week for tests to see if I am a suitable candidate to participate in a trial for a drug called Masitineb.  The trial is for 6 months and I will be monitored regularly during that time.  I understand Masitineb is used to treat cancer and I will keep you updated of how I am affected, if at all, during the study and, if I feel any better for it.  I may be taking the placebo of course but this will not be known until the end of the trial

All in all it’s been a quiet month and haven’t stopped believing.

Don't Stop Believing - December 2016

This is the third instalment of My Dementia Journey.  This month I have had lots of ups and downs.

On Thursday evening 01 December 2016 Mary and I had a disagreement and I took Harvey out for a walk to calm down.  I walked in an area which I wouldn’t normally take so late at night which was a quiet country lane.  I let Harvey off his lead and became aware of some youths behind me who were laughing and joking.  At first I took no notice of them but they caught up with me and pushed me over.  Harvey was barking and jumping up and down.  I was shook up and they ran off.  When I got home it was after midnight and Mary was about the to ring the police.  I told her I had been mugged and my wallet stolen.

In my wallet are 2 bank cards and pin numbers.  Also my driving licence with my address on it.  We phoned the banks and then the police.  Mary went upstairs and found my wallet on the bedside table with everything in it.  The police came anyway and took a statement.

One lesson learnt from this horrible experience is that I shouldn’t walk Harvey along a quiet country lane so late at night.  I should walk on a public highway which is well lit up. 

Another night I took Harvey for a walk and the next day couldn’t find his harness.   This is a mystery to me and I still don’t know what happened but his harness has not been found.

Time has also been a problem this month in that I seem to lose track of it and think that I haven’t enough time to do something when in fact I have.

I’ve had moments when I have felt very low and can’t explain why but I think it may be because although I have come to terms with my dementia, the changes still concern me and these are proving difficult to deal with.  Although these moments are happening I try to remain positive.  As a result of my low self-esteem and lack of confidence, however, this has put a strain on my relationship with Mary and I am upset that this has happened.

Another Christmas is nearly upon us which is the third one since my diagnosis and my Dementia Journey continues and hopefully so will future Christmases and I won’t stop believing.

Don't Stop Believing - November 2016

The first instalment of ‘My Dementia Journey’ last month told how Mary and I are learning to adapt our lives to make it easier to live with dementia.  Mary now leaves me a note each day saying what day and date it is and if I have any commitments that day.  I am pleased to say that on the whole it is working but last Tuesday I was due to attend The Dementia Café at Roe Green and Mary forgot to leave me a note saying what time.  This resulted in my arriving at about 10.30 am instead of 1.30 pm and I missed the meeting.  I am sure this won’t happen again and I will try to remember to ring Mary if it does.

For the past month my life has been ‘up and down’.  One day is a good day and another day is a bad day.  A good day is when I am free from stress which is usually caused by forgetting or losing something. Trying to find something or to remember something can be really stressful. 

I lost a key this month which I haven’t done for a while not since we installed a key safe in the hallway.  Mary went on holiday to Turkey and I lost the car key.  Luckily we have a spare one and the lost key turned up on Friday.  I was making a cup of coffee and found it in a cup.

Before she went to Turkey Mary told me she wouldn’t ring me every day because of the cost.  I forgot this and came home from walking Harvey at 10 o’clock in the evening and decided to give her a ring.  In Turkey it was midnight and I woke Mary and Olivia up.  The phone calls continued and I understand her phone bill this month is £55. 

I remember a song which I use to like several years ago.  The group was an American group and they wrote a song about two young people growing up in America.  The name of the group is ‘Journey’ and the name of the song is entitled ‘Don’t’ stop believing’ which I find quite apt.

On the whole this month has not been too bad and I am feeling okay.

Don't Stop Believing - October 2016

Every person who is diagnosed with dementia will experience a different journey but they will have similar symptoms and the way they deal with these will not be the same because every person has a different personality and home environment.

My working life before dementia was very different.  In my little world I was an important person who was able to advise people who had problems in their life.  I made difficult decisions and employed several people.  Whereas that character is still with me I am having to come to terms with the fact that dementia has taken over my life.  My brain plays tricks on my mind and I cannot rely on my judgment to make decisions.

I regularly forget what day it is and have bought a day clock to help which I forget to look at.  As a result of this I will look in my diary and not knowing what day or date it is I will think it is Tuesday when it is Monday and it may not even be Tuesday of the same week. It may be Tuesday of the next week.  This has resulted in my seeing an entry in my diary and panicking because Mary has gone to work and I don’t know how I am going to get there. 

The logical thing would be to ring Mary and ask her but I am not thinking in a logical manner.  In any event I do not like asking Mary by telephone because she has a job and I do not want her to get into any trouble with her employers.  The result is that if I have the car I will go to the place in my diary only to discover there is no meeting there that day and I will come home and realise what has happened.  I then feel ashamed and won’t mention it to Mary but it always comes out in the end.

This has happened to me during the past couple of weeks on a number of occasions.  If I have a number of appointments in my diary I get confused and am constantly asking Mary when they are and what day it is.  We discuss before she leaves for work what I have to do that day but as soon as she walks out of the door I will forget. 

I have read emails and misinterpreted the contents because my ability to differentiate has been damaged which has caused me to do things I would not normally do if I hadn’t got dementia.

This has caused me so much anxiety and upset.  I feel I have now come to terms with this and Mary and I have discussed it at great length and I have finally realised and am coming to terms with what is happening to me and the progression of my dementia. 

I will not let it continue to do so and we are building up my confidence and self-esteem again.

Mary now leaves me a note every day telling me the day and date and also what, if anything, I have to do for my role with Open Doors.  The note also tells me to ring her if there is any doubt or confusion before I act upon it.  I hope to be able to give you a positive update in a future installment.

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