Mary & John ' Interview 11
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Initially Mary felt concerned about John’s health and wanted him to see a private consultant as he did not seem to be getting anything from his GP; but John refused. It was some time later while Mary was away in France that John was taken into the Accident and Emergency Department of their local hospital with a urinary infection; unable to walk unassisted, unable to coordinate, confused and with weight loss. Fortunately her daughter was able to be with him until Mary was able to get back.
While John was in hospital he had various tests, but they were not told the results so why John was unwell was a mystery to them. Mary asked the consultant to contact her and she was told there was a worrying shadow on John’s lung and ‘something nasty’ going on in his body. Mary thought this sounded threatening and talked to a counsellor she knew who said he thought it was cancer, but despite numerous test over the next few weeks it was still unclear what was wrong with John.
Every day Mary would visit the hospital hoping to see an improvement and that John would be better, but instead she saw a decline in his health which she found very frightening. Both John and Mary felt afraid as John’s condition deteriorated but both of them tried to hide their fears from each other. Mary felt she had to be strong and to cope, but she felt very agitated that John was declining and no-one had talked to her about a diagnosis or a treatment pathway.
John found the hospital ward very noisy and felt his sleep was disturbed. Also he and Mary were aware that another patient on the ward had died and this was very sobering and depressing. Mary arranged for John to be transferred to a BUPA hospital where he had his own room. Within 48 hours John had a treatment plan and Mary felt more relaxed that he was now being taken care of in a way she would like. Further tests resulted in the diagnosis of cancer and he was referred to an oncologist.
John was unsuitable for chemotherapy and was put on palliative care; Mary did not understand what palliative care was but wrote to the nursing station asking to be told if John’s condition was terminal. The consultant spoke to Mary and told her John’s condition was terminal and he only had a few weeks left. Mary felt she should discuss the options with John, but his health declined rapidly.
Mary was grateful to a nurse who explained the dying process to her as it helped her to be prepared and to be strong. She wanted John to just think he was going to sleep, not to be fearful or in pain.
Mary had a mattress put in John’s room so she could stay with him and was with him when he died. The experience of John’s last moments was awe inspiring for Mary and has changed her life.
Mary felt that the day after John’s death she was on auto pilot. Her brother-in-law helped with all the hospital paperwork, including an agreement to have a post mortem. He also took Mary to the undertakers. As the youngest in the family she was not used to having to organise funerals or make decisions and now suddenly it all seemed to be her responsibility. There was a great deal of paperwork arriving for Mary to deal with and she spent a lot of time in her study trying to understand the various bits of paper. John had always looked after all the finances so it was initially daunting for Mary.
Her daughters, their partners and their children came and stayed with Mary at this time, but she found it difficult to cope with being sociable and would spend long periods in the office, organising the paperwork and organising her thoughts.
Initially living with the loss of John was almost unbearable, and Mary didn’t think she could ever survive such pain, but as time has gone on she has learnt to take each day at a time and to plan her days.
Mary kept cleaning the house so it would be nice for John when he came home from hospital; she hadn't realised he would die in the hospital, and felt guilty for having spent her time that way.
Mary kept cleaning the house so it would be nice for John when he came home from hospital; she hadn't realised he would die in the hospital, and felt guilty for having spent her time that way.
When we look at time, do you feel you had time yourself? When John was ill, did you have time for you at all?
Well, that’s one of the things that I feel guilty about strangely enough. That because I thought he was going to come out, because I didn’t realise that he’d gone in there and he would never come home again, I tried to keep a balance of things. So I thought, “When he comes out I don’t want him to find that the house has fallen apart.” So I tried to do my housework within reason obviously, because I had to be there every day. I didn’t once, I needed my motor to be running because I was the one in charge now. So I belonged, both of us belonged to various groups and organisations and classes and what have you, so I tried to keep up with my work for those things so I would try to find time in the day to do those things. And so I wasn’t at the hospital at the crack of dawn every morning and there, you know, but then I suffered guilt afterwards because I didn’t know he had such a short time and nobody had said to me, “Your husband is on palliative care and this is a terminal illness and you know, you need to make the best of your time.”
There was no dialogue like that going on. There was no dialogue at all so I was spending my time, doing, looking after the house or, or catching up with my bit of work, you know, my embroidery for my next class or whatever and then going in and then spending time into the evening and so on. And it wasn’t really until the last couple of days that I spent the sort of time I should have been spending there but in time, I’ve come to terms with that. In time I have realised that John lived his life very fully, right up to the end, and I guess that’s all I was doing. I was living my life as fully as possible.
Mary's husband was still on a hospital trolley in wet clothes the day after he went in as an emergency. Their daughter complained and he was admitted to a hospital bed.
Mary's husband was still on a hospital trolley in wet clothes the day after he went in as an emergency. Their daughter complained and he was admitted to a hospital bed.
Well, the first person to get to my husband, because I was away in France, was my daughter, our, our younger daughter, and she found that he had been admitted on a Friday and here she was on Saturday morning and he was on a trolley. He wasn’t on a ward and he was wearing the clothes that he had been admitted in and, at that point, when he was admitted, he had a urinary infection, so he was actually lying in wet clothes, wet and dirty clothes.
And he had tried to get up and go to the toilet and he wasn’t able to co-ordinate, at this stage, or walk properly, so he had fallen and he’d broken his glasses and gashed his eye, and then that had been put together with a couple of butterfly stitches. And there was food and drink lying about. It had been brought to him but he had been unable to feed himself and so it was taken away again or just left there. And so finally my daughter started to agitate for things to be done and she said, “When, I’m going to take his glasses round the town to get them repaired and when I come back I want to see him on a ward in a bed.” And that’s what happened.
Mary found it difficult to make decisions at the undertakers and chose the most expensive options because she wanted the very best for her husband's funeral.
Mary found it difficult to make decisions at the undertakers and chose the most expensive options because she wanted the very best for her husband's funeral.
And we, he took me to the undertakers and that was a kind of surreal oh, experience, you know, I think I thought to myself, “Oh my goodness. I can’t believe I’m in an undertaker’s place.” I’ve never been in an undertaker’s place in my life, you know. It had always been someone else’s responsibility, you know. My eldest brother sorted out the arrangements for my parent’s funerals. My brother-in-law had sorted out the arrangements for my parents-in-law’s funerals and I was used to being the youngest in my family and now, all of a sudden, I was the last one left. And I had to make decisions.
So we sat at this table and there was a side of me that actually, you know, inappropriately wanted to laugh because if my husband had been there we’d have been joking and saying, “My goodness, you know. There’s, what is this? Is this the, you know, these people are like the Addams Family,” [laughs]. And there was a there was a grandfather clock chiming somewhere, you know. It was all sort of a bit gloomy and we sat round the table and they said they gave me a catalogue and they said, what kind of a coffin did I want and I’d said, “Well, you know.” And they said, “Well, this is the less expensive end of the range and that’s the more expensive.” And I just turned the page to the most expensive and I said, “I’ll have that.” And I just did the same, whatever choice I was given I would say the best and the most expensive [laughs]. And, at the same time, there was this questioning voice in my head off, “Yet can you afford it?” Because he was the one who looked after the finances, not me. He’d always looked after the finances but my thinking at the time was, “Well, he deserved the best. He deserved the best so he’s going to get the best.”
We were planning that year to have a combined party because we were both sixty. We were both going to be sixty that year and our daughter was going to be thirty, our younger daughter. So it’s and we were going to have a combined party and we had a caterer, our favourite caterer, who had done family occasions before and we were going to ask him if he would do the party. And I rang him up and I said, “We were going to ask you to do the party but really sorry, but would you do a funeral?” And he went, “A funeral?” And I said, “Yeah, I’m sorry to tell you, you know, my husband’s died.” And he was really shocked because he and my husband got on really well and he said, Oooer, I’ve never really done a funeral but since it’s his funeral, we’ll do it.”
So, yeah, so they did and yeah, that all passes off almost in a, you know, I couldn’t be specific about it because I was in a bit of a daze to be honest. I know that I know that they keep giving you choices, you know, and later on, it occurs to you that you might have made a different choice but I just I made a choice at the time, you know, and they said did I want him to be kept overnight in the church, you know, and I can’t ask him. I can’t say, “Would you like to be kept overnight in a church?” You know, [laughs] so I thought, “Ooh, well, what if someone breaks into the church and then, you know, it would be and, you know, there are some funny people around at night.” And it felt insecure so I said, “Oh, no. Keep him in the undertakers.” You know, and, “Would you like him to be brought to the house beforehand?” So I said, “Yes, oh, yes.” Because he loved his home and I know he’d miss his home and so they did.
Mary talks about her change of perspective since her husband died. Now she is building her life one day at a time, seeking to include interesting and enjoyable things.
Mary talks about her change of perspective since her husband died. Now she is building her life one day at a time, seeking to include interesting and enjoyable things.
I just have to find my own way of being on my own and that has been the hardest thing for me. That is hugely, hugely difficult. I can’t describe, it’s like climbing up a precipice actually, learning to live on my own without reference to a family.
If you were talking to somebody else who was starting on your journey, what advice would you give them about that, living on their own now?
Actually, well, I find that my days have been built up in little ways. I don’t try to bite off huge chunks. I just bite off, I take little nibbles and so I try to I tried initially, to get through one day and then I would say, “Okay. That that’s one day.” It’s like turning over the pages of a book and I felt that it must be that because everybody dies, eventually, it’s a natural process so it’s got to be part of life and so I assumed that I was in a process and that if I just went with the flow, that things would evolve, that I didn’t try to control everything because it was beyond my power to do that. So I guess I lived one day at a time. I and then, you know, after a while, you are able to look back and see that you’ve come that far. When I got through the first year, I thought, “Oh well. That’s a year.” You know, and now I look back and think, I’m kind of surprised that I’ve survived nine years going on ten.
And looking back now it’s been a journey, how do you see yourself now?
Actually, I see myself as, as quite changed in, quite radically changed in many ways. I guess I was a huge perfectionist and a huge agitator and I’m not now because I’ve got a different perspective because this has happened and it was huge and I know that what is left is the last part of my life now. And I’m better prepared if you like, in that way, that emotionally I know what the score is. I spend a, a certain amount, quite a lot of my time trying to make this better for other people, to make this experience better for other people. But I, I feel that it’s up to me how I survive. I am in survival mode now. I don’t have that very rich tapestry of life that I had before. That’s no longer my, but I can survive badly or I can survive well and so I try to survive well. So I do, I do build into my days a certain amount of social activity, so that I get to see other people and I know what’s going on in the world around me. And I try to do interesting and enjoyable things. But nothing is the be all and end all anymore. If I had to relinquish it and pick up somewhere else then that’s what I would do.