An interview with Mrs Armelle Thomas as a carer for her husband 18 November 2022

We would like to thank Mrs Thomas for sharing her and her husbands story.

RJC: So for this interview I wanted to talk to you about you and your husband’s experience, when he became unwell and the lead up to being referred to palliative care, which you told me about a couple of days ago. To share your thoughts and feelings around palliative care and the care your husband received. But before we do that, let’s talk a little about your history.

AT: My name is Armelle Thomas, I came to England in 1968. I have lived in the London Borough of Hillingdon since 1969. I worked in the cosmetics industry and also as a Market Research Executive Interviewer. I met my husband Tommy's in 1969, we got married in 1970. I was 24 and he was 48.

He volunteered for the Royal Air Force at 17 and a half in 1940. He was in a Special Duty Squadron, helping the resistance in France. And in 1946, when he left the Royal Air Force, he became a founding member of British Airways.

RJC:  Can I fast forward you a number of years? Not that I want to take you back to those times, but can you tell me when your husband first became unwell and just before the time, he needed palliative care. What was the journey like for you up to that stage?

AT: Ah well! I remember so clearly, we used to travel and take nice holidays and in 2004, Tommy had an angina attack, so we stopped flying. Well, I didn't want him to have a heart attack or stroke, you know, while he was flying or on holiday abroad. So we never flew again.

At the beginning of September 2004, we went to see our GP, which we did regularly. And can you believe it, of all places, Tommy had a heart attack in the surgery. He nearly died on the floor of the surgery and was rushed to Harefield and was in intensive care for a week. They saved his life.  And so from there on, really I became, I suppose, his carer, not that I saw myself as a carer. I was his wife. That is what you do.

You know, as a carer, you are under the radar, we don’t cost anything. We are invisible and I felt alone and invisible.

RJC: Had anyone spoken to you then about palliative care?

AT: Oh no, nobody had spoken to me about palliative care until 2015.

In July 2015 I knew that my husband wasn't well. I mean, you know, I had lived with him for 46 years. I knew him well, and I knew something was wrong.

When he was in hospital, I stayed by his side, when he was discharged, I was told he was dying, by his own doctor.

RJC: I know how hard this is for you. You talk about it as though it happened yesterday. Can I ask where did he prefer to die?

AT: It still feels like yesterday. Where to die? Oh, absolutely, at home. When we saw our GP and sat down, he said. I'm afraid there's nothing I can do, which we knew. So he said. I'm putting palliative care in place, which to me meant the Doctor putting palliative care in place.

Two weeks before his death Tommy came down the stairs and he fell. He was so weak by then.

RJC: And was the palliative care support, had that been coordinated?

AT: There was no palliative. What we got was rapid response. Rapid response is there to put you back on your feet, it is not palliative care. I said this isn’t palliative care, they refused to refer us.

RJC: I thought you said that the GP said he was going to organise palliative care.

AT: Yep. He did, and the nurses didn't do it. Tommy was taken upstairs to bed and he never came down again. And he died 2 weeks later. Now when you talk about palliative care, why couldn’t he have had that service immediately?

So the first night we had rapid response. came in, very unpleasant. went upstairs. They called him by his first name, John, which is a no no. Nobody ever called him John in the UK.

RJC: Did they not ask how he preferred to be called?

AT: Oh no, of course not. They called him John, which irritated me. He was a war hero, he was decorated. The least they could have done was to ask. So two of them came in, went upstairs. There were unexpected because nobody phoned me to tell me they were coming.

And I said, can you help me to feed him? Oh no, we don't do that at night. Right. So I said, well, can you help me washing him? Oh no, we don't do that. So I said, well, what do you actually do? Why are you here?

And then, because it was raining, they refused to remove their shoes, we've got carpet everywhere. I had put a very large cloth down, to protect the carpet. So they objected to it, for health and safety reasons.

I was losing my husband. I wanted the very best care, and I had the worst nightmare. And they couldn’t take their shoes off and told me about health and safety reasons.

AT: I made a sign, which said, my name is ‘Mr Thomas. Can you please give me care, compassion, dignity and respect? Thank you’.

AT: The following Saturday night. It was still the first week. He was in spasm. And I was on my own. Still no palliative care. And I didn't know what to do. I didn’t want Rapid Response. Tommy didn’t want to go to hospital. I was told any problem call 111 because you now have a Coordinate my Care plan. So I called 111.

I went through all the questionnaire which was totally irrelevant, and at the end they said, what's happening, I said my husband is dying. They said we are calling the paramedics. I said I can't have paramedics because my husband wants to die at home. They came and settled him down and me.

The next morning the district nurse arrived, she looked me in the eye and she said to me, ‘Mrs Thomas, your husband is not a priority. There are people dying in Hillingdon today. Somebody else will have to die for you to get palliative care and you will get a healthcare assistant or nurse, or no one at all.’

My stepson was with me and he took all the details and he read them the riot act. And that afternoon. Harlington Hospice phoned me and said you will have a nurse tonight.

RJC: So are you saying, that is what it took to get palliative care?

AT: Yep. At 10pm, Jenny arrived, she had delivered palliative care for 20 years, and she called us, Mrs Thomas and Mr Thomas right through. She stayed with us all night. And we were blessed to have her for five consecutive nights, and on the Thursday night, she said to me, Mrs Thomas, I will not be here tomorrow because I've got my day off. But I will see you at the weekend. I said he would not be there at the weekend.

AT: Getting back to the district nurse. When they arrived, the first thing they said Oh, we can't have that bed. We need a medical bed. And I said, well, we don’t want a medical bed.

RJC: You mean the bed in the home?

AT: They called it a hospital bed.  You know, this meant I couldn't sleep with him. I refused and said no. This started a dispute. So my GP convinced me. But this wasn’t about me or Tommy, it was about them. I mean this is insensitive, it is cruel. I'm still traumatized about this.

We had slept facing the same wall for 46 years. They changed the bed. Tommy never recognised he was at home. He was in his bedroom. You know, and they even managed to destroy that. I had to reassure him he was in his home

I pushed the two beds together so I could cuddle him. He could hear me and he could feel me. To the end, that's all I could give to him. But it was important that I did.

RJC: You mentioned the five days of the palliative care nurse. What did you feel about the palliative care nurse?

AT: She was wonderful. She was a dream.

RJC: Can you just tell me very quickly what made that experience wonderful?

AT: The complete opposite to all of the others. The care, the compassion, the dignity, the respect.

RJC: What would your vision be for palliative care? Maybe that question is too big, but what would you say?

AT: Care, compassion, dignity and respect, doesn't cost anything, right? It's not about money. You come in and you are a guest in that person’s home and you behave as a guest. I was told about tasks. My husband is not a task. I was told my husband was not a priority. Yes, he was. He was a priority to me after 46 years. He was my husband, my lover, my mentor, my teacher.

I will never have a district nurse in my home, never. To answer your question, palliative care nurses, need to be trained in compassion and respect, that is the most important when someone is dying. You live your day, like it is the last and not medicalise someone. The palliative care nurse we had was wonderful, but we hardly had her, I had to experience trauma before we got her.

AT: They have traumatized me to certain extent. They were telling Tommy a week before he died that he had to wash himself. I said, that's your job. That's why you are here. These people never had customer care training about care, compassion, dignity and respect. No way.

AT:  I didn’t want Tommy to experience what he did, or me, but he did. It is the same for anyone, let people die with their dignity. The parts of their lives which are important to them, please respect it, even if you don’t agree, respect it. Our Palliative Care Nurse had all of that compassion, but the damage had already been done.

RJC: I would like to end the interview there, we have spoken for over 2 hours and I found it moving and passionate. I would like to express my thanks and we will catch up soon.

AT: Thank you for giving me all this time to really express my feelings.

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