About me
About me
My name is Danny and I was diagnosed with vascular dementia when I was 52 years old. I was working at a shelter for homeless ex-offenders at the time. After the initial shock of my diagnosis, me and my family were able to find the support we needed and found the positive aspect of having a diagnosis - meeting new people. I am sharing my story to help others who are in a similar situation.
My Diagnosis
My diagnosis
I was diagnosed four years ago. I was working night shifts in a hostel for ex prisoners who were homeless. When the computer system changed, one of my colleagues spent the night showing me how to use it and by the next morning I completely forgot. The manager pulled me aside the next day and said that something was wrong. I went to the GP who referred me to the local psychiatric centre. At first, they weren't sure if it was dementia or depression, since I was only 52 at the time. After some tests they sat me and my wife down and told us that I had vascular dementia. It is called a silent stroke, which is what it says in the name, you don't notice that you had it. It was a complete blow. We were told that they would see us again in six months, they did not signpost us to any services or anything. My wife and I felt that our world had come to an end. Getting any major diagnosis is quite a blow to you. After we came home, my wife looked up the number for Alzheimer Scotland, and the next day a Dementia Advisor came and spent a bit of time with us. My children were teenagers at the time, and our Dementia Advisor, Fiona, gave then quite a bit of information as well. We got involved in various groups: sing-along groups, supper clubs, the Every Voice Choir, and I am also heavily involved with the Scottish Dementia Working Group.
QUOTE1
"In these groups you are meeting people who are going through the same situation as you are, and the peer support is invaluable. For us, getting the diagnosis has not been positive, but having the diagnosis and meeting other people has been a very positive experience."
My day to day life now
My day to day life now
Most of society still see someone with dementia as being over 70. I went to the bank the other day and was trying to pay money in through the machine and I ran into some difficulty. I went to the cashier and she was a wee bit belittling. I have a card that says I have dementia, and when I got it out and showed it to her she said, "I didn't know people your age could have dementia". After that though she quickly got my problem solved. I also always carry a bottle of water with me, because if I don't, I get very slurred speech. My medication gives me a very dry mouth and people think I have been drinking alcohol. I carry my water and my wee card in my wallet just in case I get into any problems. I think the more that society is exposed to dementia happening to people at a younger age, the more stereotypes will diminish. I wasn't able to carry on working but I know people whose employer has been very helpful, and they managed to continue working after their diagnosis. Obviously if you get diagnosed younger, you still have a mortgage and other responsibilities that need to be met. I was very fortunate that my employer put together a good package that enabled me to live to a satisfactory level. That also meant my wife could work part time, which means I can attend the choir and other activities.
Moving on
Moving on
After the diagnosis, it's almost like a grieving process. At first, you deny it has happened, you get angry, but at some point you accept it and move on. I have accepted it and moved on. When I was a social work student, James McKillop, one of the founder members of the Scottish Dementia Working Group came to talk about dementia and that was very informative. Now as part of the SDWG myself, I have had the pleasure of speaking to students as well. It is good to help educate people. I am also happy to share our lived life experiences with other people to make their experience as smooth as possible. It is also good to tell people who are newly diagnosed that their feelings are perfectly natural.
Quote 2
"It is possible to live well with dementia. You cannot change your diagnosis, but you can change your attitude towards it and your attitude to other people."
The impact of lockdown
The impact of lockdown
Throughout lockdown, I was in the shielding category. I have always been a bit of a technophobe, and I much prefer talking to people face to face, but lockdown made me realise that I had to make the effort to reengage with the groups again to get the support I was needing at the time. I feel for other people who are living alone. I am fortunate to live with my wife and two grown up children, so I always have company here. For someone to go through a similar situation on their own must be very difficult for them.
My advice
I have spoke to people who are newly diagnosed and don't want to get involved with any services. For me though, I think at the time of diagnosis, to know there are people going through the same experience, and having the same feelings can be a positive thing. To go through it all on your own, you can be stuck at the anger stage thinking 'why is this happening to me?' Whereas my attitude is 'why not?' I would also say to people, be open about your diagnosis, and discuss it with your immediate family. There are still some people in my family years on who don't know how to react when we get together. But it is what it is, you cannot change it. All you can change is people's opinions towards it. Dementia is not the big scary thing it's made out to be. To people that don't have dementia, I would say 'don't make any assumptions'. When you are younger and have a diagnosis, you can give the impression that you can do various tasks that in reality you can't do, but people still expect you to. You have these wee coping mechanisms that help you through the day that most people don't think twice about. Please be patient and understanding.
Quote 3
"I am not any more special than anyone else.
Sometimes these things just hit you and it's how you deal with it that counts."