Lynne ' Interview 26
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Lynne’s mother was diagnosed with breast cancer in 2009. She had a lumpectomy and afterwards attended regular check-ups. She stayed in good health for about a year, but then near the end of 2010 it was discovered that the cancer had spread to her lungs, liver and neck. Lynne’s mum was offered chemotherapy to treat the cancer, but she opted against it because with there being no guarantee of its success and her being 84 years old, she decided it was not worth going through such a drastic treatment. Lynne’s mum asked how long she had left to live and she was told that they could expect 12 weeks, but in fact she died only 6 weeks later.
Once at home a Macmillan nurse visited and a district nurse arranged to come twice every week, however Lynne was very dissatisfied with the quality of care from both agencies. Lynne had assumed that they would receive the help they needed during this time but was surprised to find that a lot of the care duties were left to her. This put Lynne is a difficult situation because she worked fulltime and any time she took off she was not paid for. Lynne was astounded that the reason they couldn’t receive more help was because she worked fulltime. This meant she had to juggle working fulltime with caring for her mum, which impacted on her financially and left her mum without sufficient care.
As her mum’s condition worsened Lynne really began to despair. Her mum’s mouth became sore and she was constipated to the point where she was unable to eat much and she started losing weight rapidly. Her legs became very swollen with a blood clot and she was in a lot of pain. Lynne called a Macmillan nurse who visited on two occasions and filled out some forms, but no practical action was taken to help. Lynne felt desperate as she couldn’t stand leaving her mum in pain at home while she had to go to work. Every morning Lynne spent hours getting her mum out of bed, washed, dressed and comfortable with a phone to hand. Lynne would come home at lunchtime and call her mum every hour to check she was okay. The district nurse continued to visit twice a week, but Lynne describes how this nurse did very little to help. Lynne explains how she felt very lost and confused about how and where to get care from and describes how she was, “stumbling along trying to do the right thing”. She would have really appreciated it if someone sat her down and explained to her exactly what options were available.
Eventually, Lynne managed to get some suitable help when she called a hospice who suggested that her mum came in and stayed for a few days to assess her condition and give Lynne some respite. Lynne was very impressed with the care the hospice provided; they gave her mother morphine for her pain, treated her constipation and immediately diagnosed her sore mouth as thrush. Lynne was so relieved that her mum was finally getting adequate care, but was also ‘extremely angry’ that the district nurse had not previously recognised and treated these problems which had persisted for weeks.
After just one day in the hospice her mum seemed much happier and more comfortable. She remained happy for a couple of days and then on the fourth day she became very weak and lost consciousness. Lynne was unsure what to do and a hospice nurse advised her to go home to rest and come back the next day. During that night Lynne received a phone call from the hospice to inform her, that her mother had died. Lynne is sad that she was not with her when she died, but is also relieved as she doesn’t know how she would have coped with her death.
On reflection Lynne believes they did not have a good experience and were let down by social services in terms of the care her mum received. However, Lynne is incredibly relieved that her mum was in the hospice and comfortable before she died. She advises others in similar situations to do lots of research and not just rely on the system to help.
Lynne lost pay whenever she took time out of work to help her mother; she sometimes had to make...
And my mum was getting worse. And I couldn’t get her to the doctors and her legs started to swell, so I was coming home, but what was happening was, we all work full time here. There’s myself, my husband, my daughter, her husband and my son, we all work full time and my mum, she wasn’t particularly bad, at that time. This I’m talking January, but she wasn’t good.
And she’s eighty four and quite frail, very tiny. She’s only four foot ten. So I used to get up in the morning, make her, her breakfast, make sure, and sit her here, move the coffee table to her side with the phone on so if she needed me she could call me. And then I’d come home in my lunch hour to see if she was all right then go back to work. And then one of us would ring her on the hour, every hour all through the day just to make sure she was okay. And she was obviously being in pain and getting worse and having terrible trouble with her medication because she couldn’t swallow. So we tried to get her liquid medication.
And one day I came home, one lunchtime, and her leg was really swollen and it didn’t look right. So I called the GP, who eventually, came out after three hours and she had a look at it, phoned the local hospital and made an appointment for her to go that day and my mum went there. I had to take her, have a, obviously, a half day off work. If I don’t work I don’t get paid so I’ve lost half a day’s pay. We sat round there for about four hours but it they diagnosed her with a clot in her leg. So I had to take her every day to have an injection in her stomach at a fixed time, so it was either mornings or afternoons. Again, every, all the time I’m having to go to work, come out of work, lose money. I mean my work were really good, when I think back, because I had an awful lot of time off. Every day I was having to have at least, taking my lunch hour at ten in the morning and then trying to make the time up or just not getting paid for it.
Well, what about your colleagues? You said you had to make phone calls sometimes in an open plan office about difficult subjects. What were your colleagues like?
They were really good. When it was, it got, got a few, bit hairier on occasions and one of the, my colleagues suggested I go into accounts and shut the door, use the phone in there but couldn’t do that all the time and, at the end of the day, I’m at work, I’m supposed to be working not making personal calls all day.
So yeah, you know, that was good. It’s just sometimes when you’re discussing your mother’s personal illnesses with a Macmillan nurse is not good really. It shouldn’t happen. You shouldn’t have to be put in that position and really, the whole thing revolves around money because I shouldn’t have had to be at work or I should have been at work and somebody should have been looking after my mum. You know, trying to sort of keep the home going, feed the dog, cook dinner for the men, keep up with the washing and making sure that there’s food here for everybody and then look after my mum and keep a job and drive her backwards and forwards to here and there and everywhere. It was really, really traumatic and really who helped me? Nobody. Nobody helped me.
Lynne lost pay whenever she took time off work to help her sick mother; she was angry that her...
I mean, you know, we don’t earn huge great amount amounts of money. I mean I don’t earn a lot of money and I was losing half a day’s pay every day. Care costs a fortune and we couldn’t afford it and to be quite truthful, I don’t see that you should pay for it not when you’re tax payers and you’ve paid in all your life. I just think it’s all wrong.
So that’s a bit of a slap in the face and there’s my mum, eighty four, worked all her life, paying tax on her pension and can’t get help.
When Lynnes mother started to go downhill Lynne took over all the cooking, shopping, cleaning...
So at what point did you start having to do things for her?
Really from Christmas time. She was starting to really go downhill, and she was getting forgetful as well and I said to her, “Look. Don’t cook. I’ll do.” I’d already said to her, suggested that I’d cook anyway but I said to her, “Look. Leave all of that. I’ll do it. I’ll do it.” So I was doing all her cooking. I was doing her washing. I was having to do, make her bed and change her sheets on her bed. Do all the cleaning because she used to say on a Saturday, “No, I’ll clean the kitchen. I’ll clean the kitchen.”
But she couldn’t really do it but we just let her do it and then, when she was sort of resting, we’d have a little clean round when she wasn’t looking or when she didn’t know because we didn’t want to upset her. So really properly looking, I mean probably for the last year or so I will, I was doing all the shopping, all the washing, all the gardening because she couldn’t it. She just couldn’t do it and she loved her garden but just couldn’t do it.
Lynne assumed that help would be organised for her but it wasnt, so she tried to find some...
So when you were told that she didn’t have very long left what were your expectations of what kind of help would be provided and what care?
Well, naively, I thought it would all be organised through Macmillan. I just assumed that they would arrange for somebody to come and help but it doesn’t work like that or not here it doesn’t anyway.
Well, everybody, every number you get given you ring and you’re told, “Oh, no. We don’t deal with that here. You’ve been given the wrong number. Try this number.” I think I had six different phone numbers that different people in different departments of social services gave me.
Well, I would have liked somebody to have sat down with me and explained, you know, what would happen later on. What medication they would give and when’s, you know, what’s available and how you get it. What the disease can do to, to people? What to expect? You know, I didn’t kind of expect it to be so quick. And guidelines, just some, any information would have been good. Nobody gave me anything, just a book from the hospice, which was a bit late. Could have done with that before.
Lynne was angry that the district nurse had dismissed her mums complaint of a sore mouth. When...
So I took her into the hospice and they were just such a lovely, lovely kind people and the nurses came over and they got my mum comfortable in bed and took her temperature, were asking her questions but my mum never wanted to make a fuss. And I said, “Oh, hang on a minute. She’s also saying that it hurts when she eats.” This had been going, ongoing for three over three weeks. And the nurse opened her mouth and looked in her mouth and said, “You’ve got thrush in your mouth and your throat.”
So I am now extremely angry because my mum’s been at home, she’s had a so-called nurse coming in twice a week telling the nurse she can’t eat because her mouth is sore, nobody bothered to look in her mouth. And so within half an hour of being in the hospice we’ve had thrush diagnosed. They’ve given her an injection for painkiller. They’ve given her stuff for her to take and put in her mouth for thrust. They’ve taken her blood pressure and everything else and made her comfortable and then they, after about a couple of hours, when she was comfortable and settled in, they said that I should go. So I went off to work.
But I’m sure I’m convinced that if the thrush problem had been sorted out earlier, she then would have been able to have eaten. I mean literally, she more or less starved to death. Had she been able to eat, she probably would have lasted longer. She would have been stronger.
Lynne couldnt imagine being a professional care worker, but taking care of her mother felt very...
Were there any good aspects of your caring experience?
No. No, I couldn’t possibly, I admire people that do it. I couldn’t do it. It’s not for me. I couldn’t ever be a nurse or a carer. In fact, I’ve got a friend who works in a school and she does caring. She does respite care for quite severely mentally and physically disabled children and I just think she’s wonderful because I couldn’t do it.
But you looked after your mum?
But she’s my mum. It’s different when it’s your mum. I’d do it for my, you know, for my son and my daughter but I didn’t like bits of it I must admit. You know, my daughter said, “Oh, Mum. I can’t wash her down below bits and, you know, that’s, you’ll have to do that.” What do you do? It’s your mum. I can’t have my mum not being clean, you know. She was quite dignified and I couldn’t see her not clean.
Do you think your relationship with your mum changed over those few weeks that you were caring for her or was it the same as ever?
No, we got closer. People used to come round and she’d say, “Oh, Lynne’s doing a wonderful job of looking after me.” She said, I said, “Mum.” She said, “Oh, I’m a pain. I’m being a nuisance.” I said, “No, you’re not. You’re my mum. You’ll never be a pain. You’ll never be a nuisance.” And then I sung that song to her, “He aint heavy, he’s my brother.” And I explained what it meant so I said, “You can be, you’re like that song. You’re not heavy, you’re my mum.”
And it was really bizarre because when she was in the hospice the first couple of days, when she was okay, she hold my, she said, “I’m going home now.” And she’d hold my hand, “Okay. Thanks darling. I love you.” My mum was never really one to say, “I love you.” I mean I knew she did and she’d sort of do little things and pat my hand or touch my face but she never actually said it but, those last sort of couple of days before she stopped talking she did. That’s her last actual words to me were, “Love you.” Because we used to joke about saying, “Love you.” You know, they do that now, don’t they? As we were going, my daughter and I and my husband and my son and we were leaving on the Sunday night and she said, “Love you.” That was and then we all laughed and the next day we went, I went in the afternoon and she just could just about wink, just wink at me. She couldn’t she didn’t talk and next day she didn’t even open her eyes.
Lynne was angry that the funeral directors expected payment so quickly after her mothers funeral...
And is your life getting back to normal now or not? How do you feel about things?
Yeah, I suppose now. I mean I was, the first sort of week after, there’s just nobody prepares you. As much as, my mum was very organised and she’d got life insurance and she’d got a will and she told me what she wanted at the funeral and what flowers and all the rest of it that’s, you know, nobody was to wear black. But the reality is, yes, you just run around because you have to go to register her death and everybody wants, you have to write to all these people, HRMC about the pension and all these different, and the mortgage company and all of that side of it and arrange a funeral and pay for the funeral. And, you know, no sooner have you had the funeral and then they send the bill in and they give you seven days to pay the bill and yeah, it’s just, it’s all about money. Everything to do with death is about money, whether there’s money in the pot for you to have a carer, whether you’ve got money to pay for the funeral, whether you’ve got money to do this and yeah, it all revolves around money I’m afraid. The only people that seem to get rich are the funeral directors [laughs].
So was it a good do, her funeral?
Yes, it was. Don’t remember too much about it but everybody that went said it, I did her proud. We did a church service, just one hymn, just the Lord is my Shepherd and the guy that took it, we know. He’s not a friend but he’s an acquaintance. He also my, married my daughter and our son-in-law last September, so it was quite and he did mention that in the service. And yeah, we had Dancing Queen to going in and then we did a civil service at the crematorium. So she had two and then she was cremated. In fact, her ashes are still there in a box. I haven’t, yeah.
Have you thought about what you’re going to do with them?
Yes, my mum wants, when my dad died my mum bought a grave from the council at our local cemetery, which is now full up. They’re now building a new one but we’ve got one of the last plots. So we’ve got the grave there with the headstone and everything and my dad’s ashes are in there. She wants to go in there with my dad. But I’m really cross again, with the council because they won’t let me dig the hole in the grave to put the box of ashes in. They have to dig the hole and they charge me three hundred pounds plus VAT to dig a hole. So everybody is on the take as far as I’m concerned.
The money that people want to do things and I just said to the guy, “Look. I’ve been on a manual lifting course. I’ve got hard hats. Steel toe capped boots and a high vis. I’m quite happy to dig a hole to put my mum’s ashes in.” He said, “I understand what you’re saying but I can’t do that because everybody would start doing it.” So, for the moment, Mum can stay here for, she can stay here in the warm.