Dementia Interview – Interview with Tommy Whitelaw on Caring for Loved Ones with Dementia

We had a chance to catch up with Tommy Whitelaw to learn more about his Website and his campaign to raise awareness for dementia and for the caregivers for those with dementia: Tommy on Tour.

Below you can find the full audio interview as well as the full transcript from the interview.

Interviewer:  Hi Tommy! Can you do me a favor and just introduce yourself a little and tell us about your cause.

Tommy Whitelaw:  Well, my name is Tommy Whitelaw, and I live in Glasgow in Scotland. I care sometimes for my mom Joy, who’s 72 and has vascular dementia. I’ve been touring for my mom for five years now, and for the last year, I’ve been raising awareness on caring for a loved one and dementia.

Interviewer:  You’ve got Tommy on Tour which is a small movie, and also your blog. What has inspired you to embrace this mission to provide the awareness? Is it your mother? Are there other factors?

Tommy:  I think it’s like anything. You don’t plan your life that you’re going have, [inaudible 01:01] the experience of someone at some point. We realized that my mom needed care, and I decided to take some time off work to care for her. That’s resulted in me being her long‑time carer. The result of that was I felt very isolated and lonely during that, and I wanted to find out how others managed. Sadly, I find that many people struggle to do that, if it was possible, invited help. I’m trying to raise awareness so that people could understand what it’s like, and the life changes. When the life of someone you love changes, and that changes your life. I’m trying to make people understand what all of that brings to people.

Interviewer:  So tell me a little bit about the tour you’re on. It sounds like you’re going around Scotland trying to raise awareness. What have you done? Where have you been? How’s it been going?

Tommy:  I used to, in my previous life on tour, I spent quite a lot of time in North America. I toured with bands, and this is my version of what I used to do. I’m doing a tour by foot. I did the “Rock On Scotland” last year, and that led to the… I get 22 hours free time a week from caring for my mom, and I go to tour groups, so residential care places or events. I speak about life caring for my mom, and I show the short film that I made. The reason is, my campaign, I’ve asked people to write to me and share their experiences. [indecipherable 02:50] Tell me how their life has changed, and what life is like caring for them.

At the end of my campaign last year, I took off. I went to [indecipherable 03:00] , handed them over to our Scottish government. My campaign has since continued to grow since then. People write me, they’re sending… I call it “Life Story”, Van calls them love stories, because that’s why you care for someone, you care for them because you love them.

Interviewer:  So what have you learned through the caregivers that you’ve connected with?

Tommy:  Sorry, pardon?

Interviewer:  I said, “What have you learned through the caregivers you’ve connected with?”

Tommy:  Many people do this, and they do it because they love someone, but many people became very lonely and isolated doing it. Once you become someone’s….you know in life has an illness like dementia, you begin to get isolated from your social life, from your friends, and it takes away confidence in many ways. Then in my life, for a couple of years, the only people I had contact with were nurses or hospitals, or doctors, discussing my mom’s care. I think you have to make people, the way that hospitals understand what it’s like if someone’s getting [indecipherable 04:21] , waiting for someone that… I want to encourage people to get involved, and give them a little bit of help.

Interviewer:  You find that there’s comfort knowing that others are going through the same turmoil and struggles that you or other caregivers are going through?

Tommy:  Well absolutely. I think other people who [indecipherable 04:42] vitamins quite often feel very lonely. I actually think I’ve got, this is new to me, am I the only person doing this? Am I the only person waiting for someone? Is this it? Then more and more, I’m making contact with people all across Scotland who are living a very similar “Life Beyond.” We’re feeling this is a moment of isolation. I’m trying to bring that to the forefront. I think that involves, in my case is dementia, but I feel that is for any form of care.

I think for the older generation, you have to celebrate them. You have to respect them, and you have to understand the life they’ve lived, and the life of the families that are trying to care for them.

Interviewer:  What advice would you give for somebody who’s caring with a loved one with Alzheimer’s or dementia, especially when they first start out care‑giving for them?

Tommy:  Well, the best advice, and [inaudible 05:47] is try and find people. I understand [indecipherable 05:51] assistance here and over there. Find an organization who has set up and equipped. Don’t be afraid to ask for help, and don’t be afraid to ask questions. I think many people think “If I ask questions, people think I can’t cope.” I find that what helps is to be able to join hands with groups, recognized groups or organizations who are connected to supplying group care and don’t be afraid to ask for help. I feel sometimes if you don’t ask, you end up reaching a point of crisis, when maybe if you had just asked for help beforehand, you might not have reached that.

Me being a Scottish man, I find it difficult to ask for help, but now I understand that I need help, and not just to care for my Mum. I need advice and I need help in order to do the best job of that.

Interviewer:  What would you say… Is there a way for society as a whole to make a difference?

Tommy:  Absolutely. I feel that in Scotland and the UK here, that in the case of dementia it’s quite severe sometimes. I think the numbers, across the world, of dementia are increasing. I think we have to bring it to the forefront, and all aspects of caring for older people. I think it has to be brought to the forefront. You have to discuss amongst each other the best ways of improving it.

Mostly, you have to ask the people who are in a caring position. You have to work with them and find out, “What would make your life easier? What can we do?”

I think some things you work through policies and decisions that are already put in place without asking the people affected, how they live and how they feel. If we can answer those questions in the best possible way, we will find the best answer for treating people.

Interviewer:  You’ve been doing this for the last… The Tommy on Tour ended last year, correct? Your walk around Scotland?

Tommy:  Yeah. I did the walk last June. I did the walk for a week. I just walked around Scotland for a week. Since then, I’ve had quite a bit coverage on television and newspaper articles here. Since then, people have continued to write to me. In fact, I go back to our Parliament, which is the equivalent of your government now. I go back on May the 9th to hand over the next set of life stories that people have sent me.

I’m encouraged by your government here. They’re actually taking these life stories and reading them. I believe if we can share our life stories. People who have cared or are caring, if we can share our life stories, that will direct people to a better way of caring in the future.

We can show where we never got help, or we didn’t understand how to get help. That will help government and local authorities put in place a better system of understanding.

Interviewer:  Have you seen any changes start to take place, or just simply that it’s the beginning process of that?

Tommy:  Dementia, you know, with dementia we have great organizations here. They’re working hard. I think, with all aspects of life, there’s many people vying to get their [indecipherable 09:33] . I think that, with dementia, that the numbers are increasing. People are living longer, and the number of people with dementia is on the increase in general. I think now is a really important time for us to put strategic things in place in order to be ready for the next 10, 15 years.

If we don’t watch it right now, I think we’ll see major, major problems over the next 10 or 15 years.

Interviewer:  How is your Mom doing today?

Tommy:  My Mum’s doing well. She’s out today, actually. It’s a sunny day here in Scotland, you don’t get very many of them, and we sat out in the garden. My Mum’s just sitting here. She’s just sitting having a look at me wondering what I’m up to on the phone, but she’s doing OK.

With dementia being long‑term, you have no cure for dementia, you take each day as it comes. Today’s been a good day. I’m thankful for today. Today’s been a peaceful and good day. The sun is shining and my Mum’s sitting here with a big smile at me, and I’m happy for that.

Interviewer:  That’s great. How are you doing?

Tommy:  I’m OK. I think like anything, I have my good days and bad days, and that’s all determined by how my Mum is. Dementia is a really difficult process of always segregating stuff, in my case, the greatness of my Mum, and dementia is fighting to take that away, to take away my Mum’s awareness and her abilities and her memories. My days depend on my Mum. If my Mum’s getting through the day the best she can, then I get through the day the best I can. We wake up every day, and you see what dementia brings, and we try and deal with it.

I’m still learning. I think caring for someone with something like dementia, just when you think you’re getting the hang of it, it always changes. It moves. It moves everything a little bit. Moves it to the right and you’ve got to readjust yourself. Then you think, “Well, it’s going to be like this from now on.” Just as you’ve got the hang of that, it changes again, so you’ve got to keep actively adjusting your life.

Interviewer:  Since you’ve been doing this awareness campaign, are you finding support in that, in itself, or do you look to outside sources to build your support system?

Tommy:  I’m learning as well. There’s one good thing about campaigners. I believe that we all would like, in all aspects of life, we would like better things in place to help us. There’s a great tragedy of good things that are there that people aren’t aware of. I think we have to be careful. What I’m trying to do is, if I find a good service or people doing good work, I try and make people aware of it, because I think the tragedy of help that’s not available, but perhaps the biggest tragedy is help that is available, but we don’t know about it.

I think we should promote the therapists, their practice, to encourage people to come and get that help, and get help they deserve.

Interviewer:  Yeah, I absolutely agree. Tommy, thank you for sharing your story. Is there anything else that you want to add or feel that needs to be said?

Tommy:  Well, there is one thing, and it’s in the case of dementia, but I would like to say this to anyone. Never look at someone as an illness. Never look at someone as a person with dementia, always look at the person under the illness. I’ve often said this and I’ll keep saying it, that my mother has been a [indecipherable 13:35] . She’s been a wife, she’s been a mother, she’s been a work mate, she’s been a friend, she’s been a good member of our community. All too often you don’t accept the person with dementia.

So if I were to say anything to any of you, always remember the person behind the illness, and respect them of that illness. Celebrate the person behind it, remember them for the person, and help them for the person they are.

Interviewer:  Thank you, Tommy.

Tommy:  Thank you very much.