Sarah ' Interview 23
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Sarah cared fulltime for both of her parents who had Parkinson’s disease in the years before they died. She started off by travelling to and from their home in London, then eventually, when their conditions worsened they moved into the flat which was attached to Sarah’s family home. Sarah remembers how her mother was relieved about this new living arrangement and settled in better than her father who found it harder to accept the change. Sarah describes how her parents needed 24 hour care; it was an intense time and a massive shock to suddenly be responsible for caring for her ‘ageing and poorly parents’.
Sarah believes that it is very important that carers take the time to look after themselves, not least because they have to be well to carry out care duties effectively. She attended meetings for carers and discusses how this helped her feel supported. She also organised for carers from a private agency to help for some time each week, which allowed her to have some respite. When she needed to go on holiday, her brother was able to step in and take over care responsibilities.
Sarah’s father was admitted to hospital after collapsing and he died two days later. Once in hospital his condition deteriorated and the family had the chance to say their goodbyes. He died during the night time. She discusses how it was a relief he didn’t seem to be in any pain. She describes how after his death, it was simpler to take her mum out to concerts, parks and gardens because they no longer needed someone at home to care for her father.
Months later, Sarah’s mother had a fall and was taken to hospital to have a knee replacement and remained there for 12 weeks. Once discharged, it was hoped she’d pick up and recover, but Sarah remembers thinking after two days that her mother had come home to die. One week later Sarah’s mother died peacefully and Sarah describes this process as an ‘amazing experience’. She remembers how during this final week her mum enjoyed her surroundings; she saw the snow in the garden, listened to music, looked at paintings and had flowers and candles in her bedroom. Sarah believes that once she was at home she felt comfortable to die there. Sarah was with her mother when she died and describes how it was very peaceful and seemed painless.
On reflection Sarah feels it helps her now to know that she was there for them both, made their final years happy and could not have done anything more for them. She recognises that she was very lucky that they had the financial means to be able to buy in care; she had great family support and believes she would not have even entered into providing the care without this. Sarah was very close to her parents and describes caring for them as a long haul but a privilege.
Becoming a carer to her elderly parents happened gradually but still came as a shock. Besides...
Becoming a carer to her elderly parents happened gradually but still came as a shock. Besides...
I mean I think with most carers it’s, and people’s conditions often creeps up on doesn’t it? You, you don’t necessarily choose to take on the care of someone. It’s something that happens and comes to you but in my case, because we did choose to take on them living with us and us looking after them in the same house, albeit in a separate sort of flat so they had their own space. That was helpful. I think even though I knew my parents and I knew the flat I think it’s, it was a massive shock to suddenly be totally responsible for your ageing, poorly parents. But I think it’s a bit like, I remember being told after childbirth people, you know, women saying, “Well, if somebody had told us it was going to be like that, you know, I wouldn’t have done it.”
And, and someone saying, “Well, we did tell you but you can’t know until you’ve done it.” So you can’t know until you do it but I think get as much support as possible, because it is there, not as much as people want and especially if you don’t have finances to help. But it’s not always about money. It’s about your mind-set and about not being afraid to cry on a friend’s shoulder or ask, you know, ask all the time and it is sometimes difficult knowing what you can ask for specifically.
Sarah remembers her mother's death at home as very peaceful and very natural, with her family...
Sarah remembers her mother's death at home as very peaceful and very natural, with her family...
And the family… when… I mean we’re a good family. We sort of stick together. There was myself and two, my husband and two daughters at home and we didn’t even, particularly, we didn’t have much conversation about it. I mean it, it caught us out that Granny was going this way but, at the same time, I, yeah, perhaps it wasn’t a surprise. I don’t know or having realised pretty quickly that you couldn’t see how she was going to get better it was just a question of keeping her to us and her having us near and being at home and having flowers and music round. And, you know, we I put new curtains up in her bedroom window and everything and she’d taken all that in before she’d sort of taken to her bed, well, taken to her bed, couldn’t get out of bed.
And it, well, she was an immensely peaceful person actually in herself. She was a very calm person. She was sort of still waters run deep but, and that helped because it was like she was really being herself and I think when you think about it, being in hospital’s such a public place isn’t it?
So it was very natural and very organic and very, funny word, holistic sort of thing. She like was in the bosom of the family, which is where she’d been and where lots of women are anyway and it was just, often those little funny things where you think like, you know, the fact that she had the pretty curtains up that were new for her coming home and lots of flowers, which we always had anyway and then, when it became that she was in bed, you know, we’d lit candles, which was probably more for us than for her but it was nice through the night that we were with her and there was just candle light.
And, on top of that, it was the week of the snow and it meant, well we live next to a big school and the school was off so there was no traffic outside, so it was immensely peaceful and it was like my mum had ordained it somehow because she was so peaceful. She loved beauty. She loved the outdoors. It was just amazing and she’d seen the snow and on top of no traffic, the snow muffled the sound anyway. So there was like an incredible peacefulness about it and my twenty three old daughter’s put in an order for a death like it so I think that’s quite a good recommendation.
Sarah believes the healthcare services they received were particularly good in the small town...
Sarah believes the healthcare services they received were particularly good in the small town...
But yes, I think this is one of the reasons I like living where I do, because it’s a small market town and we lack a lot of things but in terms of people being interested in people and local professionals and networks are sort of closer. You somehow trust them more than, it’s easier to get, we had a consistent GP, for instance. We just about, Mum and Dad just got, always had the same person do the home visits and we never took them to the GPs. They always did home visits and very quickly when you asked them. So it was actually a fantastic service that we got.
Sarah was slightly sad to see the equipment go after the death of both her mother and father...
Sarah was slightly sad to see the equipment go after the death of both her mother and father...
You said before they came that you’d managed to get some equipment in from various agencies. How quickly was that collected afterwards?
I think I phoned up for some of Dad’s and that was collected pretty quickly and my mum’s, I was less inclined to ring. It was like, it was the bed she died in and I didn’t, and it was Christmas and it was snowy and I didn’t sort of rush to ring up because it was also, I mean things like the, the toilet aid and the shower stool and some things were joint anyway. And, in fact somehow word got to them and they rang me up. I hadn’t got round to making that so, fair enough, because obviously a hospital bed could, was an expensive thing and could well be wanted elsewhere. But actually, the hospital beds we were given were better than the ones in the hospital I think. They had more buttons on for, they were really good. I couldn’t believe when the chap called, he had this pantechnicon, like a removals van, and his job is to collect up the aids around the place and we had, we got it all into Mum’s bedroom. And it was it was a bedroom full; wheelchairs, Zimmer’s, toilet seats, you name it, you know, shower stools, the bed and he came and collected them all and that was very bizarre. And for me, I mean just because that had been like the accoutrements of our lives for so long but then it didn’t belong to us and they’re not pretty anyway. And we didn’t need them so they went but it was it was a sort of, it was hard seeing that go off, which, because it was, you know.
An ending.
Yeah.
Sarah found supportive comments from her parents' GP helpful and thinks that all professionals...
Sarah found supportive comments from her parents' GP helpful and thinks that all professionals...
And, you know, being very supportive and very mindful and saying, “You must look after yourself and look out look out for your own health and well-being.” And everything and the GP said, as he left, because Mum and Dad were in their mid-eighties when they came here. He said, “This could go on for a long time.” And that really was, I mean he, he said it almost as a throw away remark as he left but it made me switch in my head because I think it was such a tall order looking after them you just thought, “This is, none of us are going to quite survive this.” But somehow that gave me a gear change. I thought, “Right. This isn’t going to finish any day now. Let’s go for the long haul.” So I sort of, in my head, I switched to thinking, “Well, you know, let’s say it could be ten years not, you know, one year or two years.” And it turned out to be three for my, just under three years for my dad and three and a half for my mum. But it was it was a sort of seminal moment that, actually, just the GP saying that.
And I think from that, when I’ve been asked about how services and things might improve for carers, I think it for professionals to always be very mindful of what they say and it can make or break a carer’s day if you get a bit of support or not. Or a comment like that was, I told him afterwards. He was really good and came round and visited after both Mum and Dad died and I said, “When you said that, that really helped me” because it was just how you sort of approached it psychologically I suppose.
Sarah and her brother planned simple funerals for their parents in the little cemetery chapel....
Sarah and her brother planned simple funerals for their parents in the little cemetery chapel....
So did you find that organising the funeral fell to you?
It, well, it did we did, my brother and I, yes, we took it on. We’re rather a do it yourself family and we did do it all ourselves and my brother actually trained as an actor originally, so he was, he wanted to officiate and, and we simply had, we had it, Mum and Dad just liked things simple really and we had it in the little chapel in the local cemetery where the burial was. So it was sort of old fashioned these days but sort of, because actually, as it happens, the crems are a long way from here so although Dad might have preferred to be to be a crem because he said that once. One; I don’t think he was that bothered and two; for Mum, it was it meant that she could be at Dad’s funeral, that it was just local because it would have been too far to travel to the to the crematorium, as it happens, from here.
And my brother and I, we just, you know, we both we chose poems and wrote things and got cousins to say things and didn’t involve anybody else actually, apart from friends and family. Obviously, it was a funeral director, who was lovely and local and very good and we did the catering ourselves and it worked very well for Dad. And it was a nice chapel because Mum and Dad obviously, not being in their home area and being the age they were, there weren’t a whole lot of friends of theirs who could attend. But the carers, I mean the agency gave, I found out the agency gave the carers time off to come to the service, which I think is fantastic. I still haven’t written to thank them.
So they were just very personal services and then, because it was in a chapel and a cemetery, it was just a short drive down to the actual woodland burial site and Dad conveniently died, he liked things efficient. He conveniently died in March, which was when they put the, one of the two months they put the trees in and at before the end of the tax year, so that was very helpful [laughs]. And Mum, obviously, was at Dad’s and we just did a personalised for her but with, with her music that she’d chosen. And it wasn’t too snowy at that point so it was yeah, can’t say a rerun but it was, you know, it worked so well and we were happy with what we did for Dad that we just followed the same pattern for Mum, which just felt right really.
Sarah hired care workers for sixteen hours a week to look after her parents who both had...
Sarah hired care workers for sixteen hours a week to look after her parents who both had...
I’m quite good at getting help when I need it and I got everybody I could think of involved, even before, and they were good locally, even before Mum and Dad came here, got help through the local agencies with a care manager setting up what they call a care package, although I don’t think there’s a lot of care or a lot of package in the care package, [laughs] but through the best will in the world, I mean it’s just how it is.
You know, if you’ve got a different carer coming in for forty five minutes, although we’re lucky locally because a lot of, it was often very consistent staffing so we got to know the carers well and they sort of, that that was a nice sort of added thing. And we got, amazing, we got good equipment through the occupational department even, we got hospital bed for them each before they even came here. So people took us at our word of how, what their condition was and everything and we were well set up to start with and that was very supportive.
But over time that went because the carer didn’t go but the problem I came across after six or seven months, I sat down and did some sums because I was managing all the money, and because Mum and Dad had money in the bank they weren’t eligible for much care. Although because I’d gone to the agency we did have some through the, I forget the authority now, but the through the local, what would have been social work department because it was set up through them. But after seven months I did some sums and it was costing far more to go through what you’d assume would be a subsidised local authority system than it was to go private.
So that was an issue which I raised and didn’t have the energy to follow up very much but the sort of, yes, as a family we paid... more for the same carers coming to the same couple at the same address for the same needs and tasks and the same time of day and, because of their system, because there were two of Mum and Dad and not one and because of how the system had been changed and they assessed separately, even so it was the same agency and the same carers it was more expensive going through them. So I stopped it because who wouldn’t because we were paying more, which was a crazy, crazy situation to have been in and, but as I say, it took me seven months to have the energy to sit down and look at it really.
We had rather assumed that going through the, the state, the welfare system, that would have been subsidised but it turned out not because the agency charged a higher rate to the local authority than they did to private customers, as it were. And then somehow because there was this quirk of it being two people, but we can’t be the only family that had two people in the same household having care coming in.