Louise Smith

My name is Louise Smith. I’m 68 years of age and I worked full time up to two years ago. I was diagnosed 12 years ago with COPD. I just thought it was asthma and then the last three years it got progressively worse in so far as my quality of life was going down all the time. Christmas of 2018 I was admitted to hospital with a thing called RSV, Respiratory Syncytial Virus.

With the lung disease, I ended up being in isolation for almost nine weeks. Nobody mentioned palliative care and then twice after that, the following year, coming into 2019, I was admitted twice to hospital and they were all three, four and five weeks stay.

And it was only in December of last year, last Christmas, that they put me on steroids and antibiotics for about 10 days. And the day after Stephen’s Day I realised I wasn’t getting any better so rang the D-Doc [out of hours] and they said there was no ambulances, couldn’t be an ambulance for four or five hours, maybe. But because my breathing was so bad they would send an emergency ambulance for me. And I was admitted to resus immediately. Now I didn’t realise I was that sick; to me it was an exacerbation of the COPD.

When a doctor came in one evening and he said: “You don’t realise how sick you are, and neither do your family”. “Now,” he said “I have the palliative care team coming in tomorrow.” When he said palliative care I thought, immediately I thought, this is it, my number is up. I’m not going to see my granddaughter again and my whole idea of when I left work was to go and spend some time with her but obviously it didn’t happen, because I got so ill.

My daughter came in and spoke to the palliative care team and they were saying like they were there to support the family and to support me through this and they were referring me to St Francis Hospice. My God, I was absolutely terrified.

Now I had worked in the community for almost 30 years. I worked alongside presidents and ministers and the whole lot and I loved my job. I loved the people. And I still wanted to do it when I left, I wanted to volunteer and be involved in everything. I just love helping people and giving advice and information and all of a sudden then I was the one, I felt so vulnerable and alone, when I thought it’s only for people who have cancer and who were dying.

And then I had my first appointment down in St Francis and when we got there I was introduced to Debbie. She was my physiotherapist. She shook my hand, she made me feel so welcome. She asked me about myself and she was like I was 40, 50 years ago. She made me feel so relaxed and then she got me walking on the corridor, the six minute walk, and whatever. Can I say those big boulders that were on my shoulder from January, all of a sudden I had two people who were lifting these boulders off my shoulders and when I came out of there, I actually bounced. My footsteps were lighter. I couldn’t wait to get back.

And then of course I was into my fourth week and COVID happened. I took an exacerbation and got very very ill and I was sent for tests. That was like a nightmare, I was sent into Croke Park, on my own in the car driving in, like going into a futuristic movie and that waiting. I waited for 19 days for the results to come back.

The only people I had was the hospice, my palliative care team in St Francis, they would ring me. I had, Julie would ring me, she was the OT, Debbie would ring me, the physiotherapist, and the nurses was ringing me. When you can’t breathe at night it’s the most terrifying experience, but to know that my group are there 24/7 I just have to pick up the phone to say I was talking to you last week and you’re a bit wheezy, I’m going to ring your GP. They don’t take control but they motivate you not to neglect yourself. You wouldn’t get that service anywhere else. That palliative care group of people I have, they have brought me to where I am today, because hand on heart, I would have given up. They care. I love them, I really do.