Keith & Pat ' Interview 29
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In early July last year Keith’s wife Pat was diagnosed with breast cancer and had an operation to remove cancerous tissue in the August. Shortly after the operation Keith describes how he knew that there was still something not quite right as he noticed that Pat was not as spontaneous as before and was becoming frustrated when she had trouble articulating herself. People told Keith that this was to be expected after an operation, but he maintained the belief that it was more serious than that. His suspicions were confirmed when Pat was taken back into hospital for further tests and she was diagnosed with terminal cancer. The cancer had spread and she had a large tumour in her brain. Pat did not want any treatment as she felt prolonging her life by a few months was not worth the ordeal of treatment. Everybody respected and understood these wishes.
Once at home Keith had help and support from the GP, Macmillan nurses and his children while caring for Pat. He had no experience of caring responsibilities and found his new role as a carer very demanding. After about four weeks the GP and nurses recognised that he would struggle to continue care responsibilities and suggested that Pat moved into a hospice. Keith was very impressed with the hospice; he described how tasks were carried out with calm efficiency and the atmosphere was pleasant. Pat was happy and very well cared for there, however after a few weeks she decided she would like to return home. Keith was concerned as he realised how daunting and difficult providing care at home was going to be. However he realised how important it was to fulfil Pat’s wishes, which meant he knew he would find a way to cope.
Keith completely cleared a room and installed a hospital bed and equipment in preparation for Pat’s return. He describes how when she arrived home her spirits were instantly lifted. Keith often lacked confidence in his caring abilities as he believed he was ill-equipped and inexperienced. He was very relieved to have help from Macmillan nurses, the GP, district nurses and Marie Curie. Keith cannot fault the help he received and describes these health professionals as ‘amazing’. After a few weeks at home, Pat’s condition deteriorated and the GP warned them that Pat did not have long left to live. During this time their children took it in turns to stay at the house with Pat and Keith. One morning in November, Pat died with her daughter and Keith at her bedside.
Keith explains how everything happened very fast from Pat’s initial breast cancer diagnosis in July to her death in November. Although he never got to the point of desperation, he did find everything quite overbearing at times. After Pat’s death he became quite ill with shingles and now has on-going problems because of this. Keith describes times of humour and camaraderie during Pat’s care and believes this helped them to cope with the situation. Keith misses Pat very much and describes her as his ‘soul mate’.
After Keith's wife returned home from a hospice, local agencies organised care and equipment...
After Keith's wife returned home from a hospice, local agencies organised care and equipment...
And it was very well done indeed in terms of the equipment and the other items that were necessary kept coming. There, there was never any delay, never any kind of, “Oh, we haven’t got that.” It was all available.
And when she came home from the hospice, you said lots of equipment was supplied. Was that organised by the hospice or something else?
Coordinated between the hospice and the local, there’s a, like the, the bed was from one sort of source. One of the things I, I can’t make clear, there was a coordinator at a town outside our own town who, again, was in contact with me and explaining about what the availability of services and equipment. So again, no, I didn’t have to ask for anything. It was like a package. Now, if you remember, I referred to, it would be perhaps, of some help to have a kind of a list of things, things you need but with those kind of very important and large items, it, again, the logistics were very, very good indeed. So the bed appeared, then the hoist and then bed pan, not bed pan, commode, all those kind of things. Didn’t have to ask for them. It’s remarkable really. I mean we hear so many complaints about the National Health Service but I can’t, again, there’s not, not one thing in that, of that kind of organisation that I could in any way, adversely criticise.
Keith describes himself and his wife as soul mates. There was no embarrassment taking care of her...
Keith describes himself and his wife as soul mates. There was no embarrassment taking care of her...
The, the important thing from my point of view was attempting to keep, she wanted to come home and therefore my objective was to try and make that as natural as possible. So I did attempt, not very successfully, to cook, under her guidance, she was a really excellent cook, and so I did those things for her. Certainly, cleaning her when she was, that was when the carers were not, you know, in between carer visits. And gradually there was no embarrassment there. I mean there’s always that first difficulty where Pat would say, “No, I don’t want you to do that.” But very quickly that was overcome and just everything then from that I could do to make life easier for her and more comfortable.
And again, I think the number of years a couple are together are, I can’t put a kind of a term on it, but after you’ve been together for, you know, I don’t know, ten years, twenty years, you are, as far as I’m concerned, it’s unfortunately become a hackneyed phrase, you are soul mates. I mean because although you have friends to circulate with, have nice social experiences, when it comes to it, it really is the two of you and you’re so comfortable in that kind of, comfortable little, I think almost an unawareness of how comfortable you are. And it is just so, so natural from the, and I mean it, from, I retired on a Friday and on the first Monday Pat said to me, “What are you going to do?” And I said, “Well, hopefully we’re going to have a good comfortable and rewarding togetherness.” “I understand. I know that, but what are you going to do?” I said, “Strangely enough Pat, I’m going to read.” And she said, “What, what do you mean read?” And I said, “I’m.” It was April, it was a lovely day, lovely morning, we’d have a fairly leisurely breakfast, first breakfast of retirement and she said, “Well, what are you going to read?” And I said, “Well, it may sound strange, I’m going to read Wind in the Willows.” And I’m only saying that because she said, “Well, if you’re going to read, I want you to read to me.” And from that first day I read to Pat and I mean read to her out loud, not weekends, not Saturday and Sunday, and while I read again, she was a very good knitter of lovely garments. And while I read for anything for forty five minutes or more, she would knit. And this went on right up to the time when she was here home ill, and at last, she said to me, “Keith, there’s no point now in reading.” But in that time we probably read together something like two hundred books of all kinds of, you know, from all genres from sort of whodunits to thrillers to classics. So it was a, again, a very, way of having a bond, because even with tiffs, you know, it never prevented us reading together the next day, never.
So it was a very useful bond, to say the least. And I, again, I think this situation where you, when you’ve been together a long time, you know one of you has got to go. It’s most unlikely in, unless in the case of an accident that you’re going to go together.
Keith respected Pat's decision that she didn't want further treatment. She felt it was too much...
Keith respected Pat's decision that she didn't want further treatment. She felt it was too much...
Well, again the Macmillan nurse was extremely helpful. It was she who made, no, I don’t mean made, who gradually, conveyed to Pat and got her to understand that it was end of life situation. And from, I can’t remember the how, how what, what time it arose but Pat did say to me then, “I don’t want any treatment.” And I said, “Well, let don’t say that without thinking about it. Let’s together see what you feel as and when it becomes nearer, if you like.”
It then really got to a stage where the doctor, our doctor was here and he talked with Pat, made clear to her that there were improvements that whatever she may have heard or like, like experienced maybe with other people’s situations, that there had been some quite good improvements in the prospects of longer life. But also talked with her about, and again not with me, but I was here but he, he talked direct to Pat, the, strain of treatment because it wouldn’t she wouldn’t get that from her local hospital but would have to go to a more central, larger hospital for, for the treatment and said to her that, even that can be really wearing, disturbing make people feel that it’s too much and, and the, the additional length of life that you get may not, may, may be considered disproportionate to the kind of treatment that you’d have to undergo. And she said, “Well, it’s not that. I just don’t want to, to go through with this. I realised that it that I’ve got a short time to go and if it’s unlikely, therefore, that it can be extended by a considerable period then, and it’s not weakness on my part. I’m not doing this because I am I am weak or can’t.” Because she again, she was stoical person and she said, “I just don’t want to go through that kind of treatment if it’s going to be a short period of time.” She said, “I’ve read and I know of people who have said, ‘if I can only get an extra month or six months I’m prepared to do it,’ and I.” She said, “I feel that now that’s for me.” And then she said, “I’ve thought very carefully and I just don’t want that kind of treatment.”
So I was, I did I wasn’t censorious about it. I didn’t in any way feel that she was letting me down, no, not at all. I was I just felt that I didn’t it didn’t even occur to me to try to talk to her out of it because I knew that that’s what she wanted and I don’t think any, as I say, I don’t think it was any character defect and if there are some people who want to fight for a day or, you know, whatever but there are others, and I’ve talked to one or two other people, who now some of them, older people who say, “Okay. I’ve had enough.” You know, and are quite cheerful about it. I mean they’re not, not making a, a big issue about it but there’s a whole mass of us, a whole raft of people out there aren’t there, who say, “No, life, life begins at eighty.” You know, and maybe that’s for a lot of people. It could be for me but I, as I say, it didn’t it, it wasn’t something I went to bed with in terms of, of, “Oh, this is, you know, I just can’t bear this.” It was just one of saying, “Okay. That’s Pat. She’s made her decision. I respect it.” So that’s how it was.
When Pat said she wanted to come home Keith didn't hesitate. Pat was a home bird and coming home...
When Pat said she wanted to come home Keith didn't hesitate. Pat was a home bird and coming home...
Similarly, how did you feel about her decision to die at home?
Oh, I fully, I mean Pat, Pat really I mean you get this expression again, don’t you, a home bird and that but she was in all respects. I mean no, no different from millions of other mothers and, and wives. I mean she, she really was, I mean this environment, wherever we were, I mean we never talked about houses and values. It was, wherever, whatever your accommodation, that’s your home and that you, it don’t matter whether it’s a hovel or whether it’s a mansion. It’s what you make of that in terms of, and we’ve been together all that time and so I felt, when she said to me, “I want to come home.” There was no doubt in my mind.
So you had to be here to expl..., realise what it meant to her when she when, when she came through that door. It was extraordinary and the, as I say the, no, in any way, no implied criticism of the facilities, the hospice or anything else. It, she was she was morally uplifted as soon as she came through that door and you can just you could see it in her. You could feel it in her and it, it was the remarkable increase, again, in her spirits and that’s all I can say. So, no, I had no hesitancy in agreeing, well, it wasn’t agreeing, in saying, “Yeah, you come home.” And, as it turned out, it was a it was a wonderful development and I’m sure, although you can you can never be completely knowing in terms of what that individual feels, but I’m sure it made a great difference to her. And, when I say difference, a feeling of, of great comfort. So no, I had no doubt.