After your mum died, did you have any counselling? Did you get any support?

Yes, [the hospice] provide bereavement counselling, which is on-going. I’m still a part of that and I find it useful, particularly in the early days when there wasn’t a lot that made me want to get out of bed in the morning. I was in a very, very sort of small place where nothing mattered and it was nice to know that there were people who would just let you whitter about it. Go over it again and again, talk about anything else, who didn’t judge you. Who weren’t trying to tell you, This is how to grieve. This is how to be bereaved. This is what you need to do But would just let you find your way. Possibly, there were little nudges that I didn’t even notice but these are very skilled people so I imagine there were, but they were all good and it’s still good.

it’s nice to have that secure place. I know that for people who are unlike me, you know, completely, fully able or people who are elderly so I have a friend who they’re seeing. She’s an older lady and they go to their home. So it’s a, you know, it’s a comfortable environment. I like their room there. it’s just a quiet little room where you just sit and it’s your space. it’s your time. And there’s no judgement and it’s nice.

Did you have any counselling prior to your mum’s death?

No.

No, so it was afterwards.

Yes, but, having said that, because all of the resources of [the hospice] were available to me I probably, I had a kind of counselling that wasn’t official, if that makes sense. You know, I had the consultant. I had the nurses. I had the other staff. Most of the other people were trained. They know how to look after you even if you don’t know that you’re being looked after and certainly, with, with people like the chaplain. There were probably conversations that happened that would have considered counselling in a real sense but that I wouldn’t even have noticed. So I think because I was in a slightly unusual environment I probably did receive it without knowing it.

Did you find that faith has sustained you during caring or subsequently, since you lost your mum?

Well, my faith is very similar to hers. Slightly potted but it’s very strong and I found that, yes, it, it helps me in the sense that I just know that she’s in a special place now. I don’t have a fear of death that I had before, which is very strange. I think it’s important to have something to believe in, if you have no faith you can believe in other things. There are other ways. it’s quite comforting to know that for us, there is a God however we choose to believe in that God and I know it, it gave her something that you can’t really put a finger on and for me, I would gain any comfort knowing that she was feeling comfort and happy because even if I hadn’t shared her belief, I would have been happy sharing it in a sort of slightly more distant way.

Yeah.

But I do know that the night that she died I felt that there is definitely a presence.

And I was blessed with having her in my arms when she died. So it was what she wanted.

And was that good for you to know that you were able to be there at that moment for her?

It meant so much to me. I was I was worried that I would be denied that by circumstances. Not everyone, not everyone would want it but not everyone would be given that chance anyway.

But it was beautiful because what I’d wanted and what I truly believed happened was that she went from one pair of loving arms, straight to another. They say you need to let them know that it, it’s okay to die because she was holding on for me, to an extent and I thought, How, how do I do this This again, was earlier that evening and because my father died two months before I was born and I knew she always missed him I said to her that, I’d been a bit selfish having her all to myself for forty six years and maybe she’d like to go and play with him for a while. So I know who was waiting.

Did it cause financial
Yes.

ssues for you?

Yes, carers, certainly with live-ins, that they cost a lot [laughs]. We were lucky because Mum had no income, apart from the state pension, so we qualified for you know, full state help but if you didn’t that would that would be really, really difficult for people, especially if they they’re assets were small your assets would be used up very, very quickly if you had to have long term live-in care.

We, as I say, we were heavily subsidised, which helped us enormously, but even I mean a pension is only a pension and day care was going up all the time. It was it was very, very reasonable. It was only about seven pound fifty a day, but we were having it three times a week because I didn’t want her to be bored at home all the time. I wanted her to be out and doing things so I mean the day care that was available had to be Alzheimer’s specialist and they did lots of stuff and then there would be outings and things. So yes, I mean there are financial burdens. We weathered them well but I can see that it would be very difficult for some people. I mean for a start, I’m working, which helps.

I was lucky that I wasn’t talking to a member of staff or having a chat with a friend outside the room for the coffee, gone home to get something, although actually by this time I was I’d decided I’d moved in and I just wasn’t going to go anywhere if I didn’t have to but I did need a break from sitting in the room and so it could have happened, as I say, when I was having my shower in the morning or visiting the loo, anything.

Those moments, you can’t define that is the moment. They were able to give me signs and some of which I could see for myself as to how things were getting worse and, as it happened, it was quarter past three in the morning when it did happen and I was almost asleep. I was so tired. It was it was quite an extraordinary experience because I’d been holding her, with, my little sort of couch bed. We’d had her bed lowered so it was at the same level so we were like together and I could hold her. And I’d got awfully achy from being in one position for a few hours so I’d rolled over on to my other side and I’d put her arms around me so that she was holding me, you know holding her little girl, and we were so comfortable and I could feel myself drifting off to sleep and in my head I was saying, You really shouldn’t go to sleep But I’d had very little sleep the night before, if any, for a similar reason really.

I knew she was very, very ill and it had been very noisy at the hospice the night before. There’d been bells going off every five minutes and then because Mum was, needing turning, they’d come in and turn her every couple of hours. So you’re not going, it’s not going to be a quiet night and I was really exhausted and suddenly I’d heard her catch her breath. She’d done this earlier in the afternoon so that there was no breath and then there was sudden breath and I heard that and I [gasps] and I, I whizzed around in her arms so I was actually awake and with her and she died moments later.

Oh, nice.

And that was meant to be. And it was odd. I knew the moment she’d gone I was just holding her, and I knew I had to call the staff because they needed to know and I was quite, quite calm, in a way. I didn’t push the emergency button. I thought, There’s no point If they’re going to come running, they’re going to think they’re needed. they’re not. it’s merely to let them know but I didn’t want to let go of her so I didn’t want to go and physically tell them myself so I just rang the bell and the night staff came in and she said, What is it And I said, My mum’s gone They checked her pulse and it wasn’t there and they said, Yes, she she’s she has And they just left me for a while and I just sat there holding her hands, crossed legs, very, very calm, about five or ten minutes and then howled.

Very difficult having someone living in your home.

It really is very difficult, especially when it’s small, and you’re someone who, like me, I’m hands on. I have to do things. I wanted to do everything I could for my mother and, you know, I don’t really want people to feel redundant but what I really needed them for was not live in but to be there while I was at work because, at that stage, I was still working.

If I’d been able, I know it’s impossible, if someone had said to me, You’ve got three more months with your mum I’d have told work, You’re not seeing me. We’ll, we’ll sort it out. I’ll go on unpaid leave. I don’t want to be here And I wouldn’t have had live-in from the start. I’d have done it myself from the other way but because I was working all things were out and I you can see this is where I get frustrated and cross and this is where, you know, all the mental repercussions come and I keep saying, If I had that time again, I should have not worried about work and I’ve been so selfish I should have just said, Forget it. I’m not going to work And I regret that decision. I regret trying to keep everything going because what did it achieve?

Me getting frustrated because I had someone living in my house who wanted to do everything her way and by her rules. I mean she was washing my dish cloths in bleach and washing the floors in bleach and I was saying, don’t do that, please, because, you know Well, this is what I’m taught to do I said, Well, yes, but they’re old tiles and I don’t think it’s good for them Well, what do you do I said, Well, I don’t use bleach And I said, And I’d rather you didn’t keep washing the dish cloths and everything in bleach in the kitchen because this is where we’re preparing food. This is food that’s going to go to my mother and if there’s an accident, bleach is very dangerous And so she wasn’t happy with me. She wasn’t happy, I don’t think, with the fact that I wanted to do so much myself. She, you know, made her own food and ate her own meals separately. She would want to, I mean, and it’s just very difficult, you’re not a family and, you know, you’re very aware of having someone else there all the time. And I was on egg shells in my own home.

Are you the only the only daughter?

Yes.

The only child. Yes, so did you feel on occasions a weight with the responsibility that you took on for caring?

Every now and again sort of frustration. it’s a horrible thing to admit but you do because sometimes you just want to whiz off and do your own thing and sometimes that wasn’t always possible. But I felt guilty when I had to start putting her into respite care to have a holiday. I thought, you know, I didn’t really like doing it and people were saying, Well, you should do it every other, you can do it every other month And I thought, I don’t want to do it every other month. I’ll do it now and again, maybe a couple of times a year Well, why don’t you just do it Well, I haven’t got anything to do that that month Well, do it anyway Why? I’ll only come and visit her every day. What would be the point Unless I had a holiday to go on, friends to visit, there was no point for me. I would do it when I had to. They were wonderful there and there was my, my original [laughs] my original ethos in this was that I would find a place where she was happy with respite and, eventually, when I could no longer cope with dementia maybe that would be the place where she could go as a care home because she would already know it and I would already know them. So there was logic behind this as well. As it happened, she only went in about three or four times in the two years preceding her diagnosis. And, and the first time I phoned every single day and felt dreadful about having gone and I only went on a long weekend to Scotland and I didn’t leave her in the whole week. I took her in the day before I went to Scotland and picked her up the day I got back [laughs]. So but I thought, no, no, you know, I’ve got to trust these people and a week’s a week. So it wasn’t easy. It wasn’t easy at all.

No.

But she did enjoy it there. She did get used to it. She’d complain about the some of the people, some of the people she’d like. She’d always complain about the food but that was already the start of something else we didn’t know about. She might have complained about some of the food anyway but [laughs] cause it’s not, you know, it is very difficult, very difficult but, yeah, it was tough, tough saying, I’m going to leave you in this place and go off and have fun somewhere

If I wanted to take her out, I brought her home for weekends, well, not for a whole weekend, but for a for a couple of hours I’d try and bring her home because I still had hopes, at this point, that she would come home but because of the dementia I didn’t want her to forget home.

So I’d try and bring her home at least once a week so she could sit in her chair over there for a couple of hours, watch some television, have a cuppa, just be normal.

Just pretend that nothing existed except her normal life. When the autumn came we went for a drive round all of the, the areas like [Place name] where the trees were just turning and she would be going, Oh, beautiful And we could do that there. They would let us take her out, bring her out, take her out for a cup of tea and wheel her all over the place. In the good weather we’d go wheeling all round the hospital, go up to the cafeteria for chips and right round the outside site so she could get fresh air. They’ve got a lovely little garden, courtyard gardens area, and I could wheel her all round

But then we did we did that for fun. You know, we’d go out for a couple of hours and I’d be pushing and we’d have an ice-cream out somewhere and I’d push back, and I mean sometimes we’d use the car, sometimes we’d just use the chair, sometimes you’d have a combinations, sometimes you’d go on the bus. It was all aboutit was about fun. It was about not allowing her to be, I mean she was someone who loved people, loved socialising, loved going out and I certainly wasn’t going to let her have any of that taken away from us. Some weekends I was busy. I needed to stay at home and do things and she was quite happy with that too. Sometimes she’d just look at you and she’s, I’d say, I’m just, I just need to go shopping. I only need to go Tesco’s, get some bits Oh, can I come with Of course you can And then we’d be out and I’d think, I’d say, Oh, Do you want to go for a ride Yeah, where I don’t know. Let’s just point the car and go

Because she enjoyed being out and it didn’t matter even if you just, even if it was a miserable day, you just trotted round a few roads, went into the countryside, watched the rainfall, came back, found somewhere for a cup of tea, sometimes not even that.

When we were talking briefly at the start, and you were saying, you know, about your social life. Did you have time out for yourself during your period of care, towards the end when you were your mother was ill?

A couple of times. I did feel very guilty about it. As I said, there was the one time, when she was in hospital, I thought I’d be okay and didn’t, didn’t work out but I did, at weekends I would sometimes go and see Mum in the hospice or the hospital in the morning and then maybe meet someone at lunchtime and then go back. Or in an afternoon I’d have sort of afternoon out to do something, well I still had to do shopping and household chores. Some of my friends, many of my friends were very, very fond of her so they were quite happy to come to [the hospice] so Mum would be asleep and we’d be sitting in the room and we would socialise that way. One of my friends came over from America and spent a week doing mostly that, just sitting with me there and then taking me out in the evening for a meal.

So yes, but I didn’t want to do it too much. I didn’t miss a day. I didn’t take a whole day off ever, not while she was, not once I knew she was that that sick. I mean prior to that.

Is that a comfort now? Is that a comfort to you now to know that you were there?

Yes. I would have hated something to have happened while I was enjoying myself. it’s not that I didn’t enjoy myself. My friends were wonderfully supportive, really supportive and they understood.

And if I could go over for a couple of hours and a cup of coffee somewhere, fortunately, some friends of mine live very close to the to the hospice and I would often go over there afterwards for a evening meal or a chat. They’ve got a, a little girl who was, what, about two and a half at the time so I’d go for what I’d call, her name’s [Name], I’d go for [Name] therapy because when you’re when you’re with a child of that age they’re just pure joy and sometimes you just needed that, something just completely different, this total innocence who’s reaching out to you.

And that was lovely. So yes, you look for things and, and, and friends were, were extremely supportive. I mean sometimes I would stay overnight at the hospice, when, when it got silly and then they’d say, Well They’d, they’d bring me bring me sort of fruit bars and things that they know I like and little treats for Mum.

So yeah, we, we found, we found an enormous amount of relaxation and enjoyment but within the caring role. I wouldn’t have wanted toI mean the, the holiday that I was supposed to have gone on with my mother, fortunately, even though it was booked online they allowed me to defer it and because again they said, Well I thought, Well, I could go. I could go while Mum’s sick But I had no intention of doing that. That wouldn’t have been right. I would have felt really, really bad about being on a holiday that we should have been on together without her alone or even with a friend, while she needed me.

Once we got to the hospice, it was another world. I can’t praise, I cannot praise [the Hospice] highly enough.

Can you talk a little bit about that? Why, why do you feel they deserve so much praise? Can you?

Well they’re a small ward but they are dedicated to end of life care so it’s something they completely understand. Nobody else is calling for attention except those people there with those needs. Having said that, it is extremely busy because everyone has different needs and there’s an awful lot of buzzer pushing.

And my mother had this added complication of dementia. She couldn’t push a buzzer for herself. If she needed to go to the loo she, unlike patients who have a good mind, can’t ring the bell for the nurse to come and assist them and sometimes she would try and get up and go on her own and she’d fall.

And the rooms and the bays all had huge windows with, they’re French doors. You could get a whole bed out. So if someone’s bedridden but still wants to go outside onto the patio in the sunshine, you can push them out.

We had tea parties outside with this other lady. We she had dogs and they were allowed to bring the, brought the dogs in to see her and we had pat dogs coming round. it’s extraordinary. The level of care is absolutely incredible. Also, they’ve got alternative therapies like art therapy, music therapy, reflexology. There’s a lady who’d massage Mum’s feet at night, which helped relax her for going to sleep.

I think I realised quite early on with the dementia that there was role reversal. Again, when things like that happen gradually, they, they I didn’t resent it. I just knew it was happening. I was aware that as things got worse and cert, certainly, once we knew about the cancer or a bit before then when she was having some small incontinence problems and there had to be more encouraging. The dementia takes away a person’s desire to wash. It may not be the case for everyone but every case I’ve close contact with, hygiene is something that falls by the wayside so, of course, this became something I had. We had a couple of battles, Come on, Mum I want to, I don’t know if I want to Then she’d be, Oh, I do want a bath

Some, sometimes they block. They have a whole anti thing. I mean given their own devices, they will wear the same clothes day after day after day after day, underwear, everything. So, you know, you’ve got to take things away and surreptitiously replace them with clean things or suggest, How about we wear that today Or, Time for the wash, let’s.. You know, and but physical washing was, you know. So we just devised this system, you know, I’d run a bath and help her in and help her out and say, Do you want your back scrubbed and so then you can do me And we’d, we’d, we’d make things a bit more like games sometimes but yes, you, you did become aware, sometimes I’d be thinking, I bet this is exactly what it was like when I was a child

I’m sure that some of the things I’m doing I’m only doing because I know that she did them for me. It was subtle but, yes, I was very aware but I was also, because I was aware of it this was an advantage because it allowed me not to make her feel it.

I used to do dosette boxes myself and they can’t give pills unless they’re in one’s that have come from the chemist all sealed they couldn’t administer those. They can offer them but they can’t do more than offer.

So you’re actually limited in what you can do and when she needed mid-day pills as I say, you know, You’ve got to try and get these into her But they’re not allowed to try and get these into her because they can only put them there and say, Take these And if she just then fell asleep or pushed them away that would be the end of that. Whereas being her daughter, I could be a little more insistent, although I mean I wasn’t holding her holding her nose and ears and opening her mouth and throwing them down her or anything but I could just keep on, Mum, you really have to. They are doing you this good I feel sick That’s why you need these pills. they’re the ones that’ll stop you from feeling sick So lots of explanation and cajoling, which is, you know, different with a carer.