Sue ' Interview 18

Age at interview: 63
Brief Outline: Sue's father was diagnosed with dementia after a stroke, although he had already been occasionally forgetful or confused. Sue, her mother and sister, looked after him at home for 9 months until he was moved to a care home after a fall, where he died.
Background: Sue is a special needs teacher. She is divorced with 2 adult children. Ethnic background' White British.

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Sue’s father had been a very active man and played golf until his problems began at age 87 when he had four minor car accidents. Sue took him to the doctor after the fourth accident because he had a bad back. At this point she discovered that he couldn’t remember what had happened in the accident to tell the GP. The GP said he would have to notify the DVLC about the accident because of his age. Sue’s father decided to give up driving then rather than take another test, which meant using taxis to get around.

In the following weeks Sue’s father had episodes of forgetfulness and confusion. Then one day he had a stroke when Sue’s daughter was with him. He spent 3 weeks in hospital and was diagnosed with vascular dementia and became incontinent at night. The physiotherapists said that he wouldn’t be able to manage the stairs if he returned home, so Sue and her sister arranged for a bed to be put downstairs, and a commode, so that their father could come home. However, he didn’t want to sleep downstairs and tried to climb the stairs, so they called the physiotherapist back in, who suggested fitting hand rails to the stairway instead and that he should be supervised when using the stairs. He became gradually worse and needed to wear incontinence pads during the day as well as at night. He stopped reading and engaging in conversation.

After a while Sue realised that her mother was feeling worn out from looking after her father, so they decided to get professional carers in to help. Social services recommended a private care agency who supplied a carer for an hour in the morning and an hour in the evening. Sue’s father was initially resistant to letting the female carers help him with personal care, but later a male carer came who he related to well. After a few months Sue and her sister decided that their mother needed a break from their father at night, so they took it in turns to stay overnight. They slept in the same room as their father while their mother slept in another room. Their father now needed supervision 24 hours a day so their mother couldn’t leave him alone to pursue her own interests. After a while his dementia was assessed as being severe and it was suggested he should attend a dementia day centre twice a week to give the family some respite.

In December 2010 Sue was phoned to say that her father had fallen downstairs. He had been sitting in a chair with a rug over his legs, he got up to try to follow his wife up the stairs, and tripped over the rug. He was taken to hospital but they couldn’t keep him in because he had no injuries and Sue’s mother had told them that they had carers at home. However, after the fall Sue’s father could no longer weight-bear, and the carers could no longer deal with him, so Sue and her family realised they wouldn’t be able to continue to look after him at home. They tried for a few days but her father refused to let them help with personal care. They managed to find a dementia care home that had a room available for 2 weeks and arranged for him to be taken there by ambulance. The care at the home was excellent but he deteriorated, was unconscious much of the time and wouldn’t eat or drink. About a week later she was phoned by the home to say that her father had woken very distressed and his breathing was low. She was making arrangements to go there but before long they phoned again to say that he had died peacefully. Sue and her family went to the care home and spent about 2 hours with him after his death.

For Sue her father’s death was a release. She had found it difficult to look after him towards the end as he didn’t like her doing his personal care. In a way she feels glad he has gone as he had no longer been the father she had known. She was glad that they had managed to keep him at home for most of the time where he could enjoy the grandchildren’s company. Although her mother had wanted him to die at home, Sue was glad that he had not as she believes the family home might have been forever associated with his death if he had. Caring for her father had a big impact on her life as she felt she had to always be at the end of the phone, and she was often late for work after helping her mother, but fortunately she had a very understanding boss. However, she feels that she probably didn’t perform at her best at work during this period.

Sue and her sister had both worked in social care so knew how to find out about what help was available. However, things didn’t always happen as expected. For instance they had difficulty obtaining a consistent supply of the right kind of incontinence pads, people didn’t always phone back with answers to queries having said they would, and carers failed to turn up with no explanation. Sue feels strongly that agencies need to take even more care over these kinds of things when dealing with elderly carers like her mother.

Three months after her father’s death, Sue feels that her life is returning to normal.



Sue describes her family’s rota to care for her mum and dad.


Would you, did you think of yourself as his primary carer or would that be your mother?

I think Mum would have been primary carer because she was there most of the time, 24/7, but she got, if I can give you an insight. We got to a good rota - I don’t know how we’re doing - got to a good rota. What used to happen, Mum was very independent, still liked to go shopping, so my younger daughter would go in Monday morning after she’d dropped my granddaughter off at crèche. So Mum would have a window of four hours to go to the local supermarket by taxi, get the shopping, have a coffee and that’s it. And then my granddaughter would stay with, my daughter would stay with my dad, because he couldn’t be left at all, you see. And then my daughter would stay with Mum and have lunch, and then Mum would have Dad on her own Monday afternoon until the carer came most evenings. Tuesday, he went to the day centre so Mum was always out all day, and one of us would go in Tuesday tea-time and that would be our night of staying. Wednesday was probably the only day that Mum didn’t see anybody and was, unless we called in because I had a long day teaching, both my daughters were doing their different things with children. My sister would maybe come Wednesday night if she could, because she was still working at the time. Thursday, my other, eldest daughter went in and would give Mum, Mum would go out all day Thursday and my daughter would stay with Dad. I would relieve her in the afternoon and stay in the evening, and Friday Mum always had her hair done so that continued. So we feel, although Mum moaned a lot, her life, apart from the time she was with Dad, didn’t change a great deal. We were trying to get her to still do the things, and I think that’s very rare for that to happen. I mean I would say my daughters were, they came up trumps. They didn’t have to do it and they were very good.

Yes, so the whole family mucked in.


That’s great.

We did, yes. Even the son-in-laws did when they could, they would go round and see Dad and, you know, sit with him.


Sue realised he mum was getting worn out caring for her dad and was relieved when they found a...


And it all happened very quickly really. We ended up realising that Mum was getting so worn out, so we, through the help of social services, got a, a care agency in. And they used to come in for one hour in the morning and one hour in the evening. The morning was supposedly to, Mum would get Dad up, because he’d get up quite early, was supposedly to support Mum in the personal care of Dad, but it was quite difficult sometimes. The agency only had female staff at the time, and Dad was quite resistant to having them do anything with him. He was a very proud man and I think, you know, dementia I gather, only sort of seeing my dad with it, you get pockets when you remember what’s going on, and on those moments he wouldn’t let anybody touch him. But luckily, a young man joined the agency and for four or five months he was my dad’s main carer, when he was on shift, and that worked really, really well, he related to him. And we managed to get Dad shaved and we had a bath seat put in. And that continued probably until about September. 


Sue often had to chase up the supply of incontinence pads for her father. She believes that...


One example was, my father, we had to order his incontinence pads, and Mum would place an order and they promised that every six weeks a new box would come and blah, blah, blah. And it never really happened. Most of the time I was driving down to the local place and having all these incontinence pads coming back in my car because they either forgot, didn’t deliver them or there was a mix-up. We got to the stage where we were purchasing them from our local chemist because they delivered some one day and they just said, Mum said, “But these aren’t the right ones.” “Well we haven’t got any of the others.” But the trouble is the ones they delivered, weren’t, didn’t fit my dad. They weren’t for the purpose it required. My father needed ones that he could pull up and down still.

Continuity and certainly getting back to people when they say they’re going to, not leaving things. You know, you get so frustrated when you think, “Well, I’ve ordered these pads. I’ve seen the order written down.” I used to go down and said, “There it is.” ‘Oh, but we never looked at that bit of paper.” And you think. I think continuity specially with, if you’re dealing with an elderly person, if you’re dealing with youngsters that can actually have the wherefore to get on the phone, my mum’s not very confident about doing that sort of thing and I don’t think a lot of people in near their nineties are. She had no access to a computer, she had no idea. So I would say, you know, you’ve got to, there’s a certain way of dealing with an elderly carer, don’t just don’t assume they know everything because they don’t. They live in a world of their own some of them. They don’t want any help but they know they’ve got to have it. As I say, we were very lucky having a family doctor because he knew my mum as well, so that was good. And that’s all I would say.


Sue felt that she had lost her father to dementia a long time before he actually died. It helped...


How do you feel that your father’s illness affected your relationship with him?

I, he wasn’t my dad, and that’s quite sad to say, but that really started way back in ‘87 when, if you went round there he wouldn’t, you couldn’t have a conversation with him long term. He’d started to become in a world of his own, even then.

But, for me, it was certainly a release. I think I, as I say, I’d lost my dad a long time ago, two years ago. The impact it had on my life, particularly, looking after him and also being aware that we were supporting Mum as well, was huge. Some, some of my friends used to say, “How did you change your father?” you know, do his personal care and I said, “Because I switched off. He wasn’t my dad and that’s the only way I could do it”, I said. There were times when he fought with me but I think he knew it was me, and he would be in a real mess, you know, personally, in every way that, and he wouldn’t let me change him or anything. And I just had to be really firm with him and, but he, he got quite physical towards the end and, you know, hitting and things like that. He didn’t want anybody to, even, it wasn’t just for the family, it was even with the nurses in the home towards the end, but they were telling me that that is what often happens with dementia, especially with severe.


Her father’s dementia caused friction between Sue and her sister: they had different views on how...


But my sister, it was difficult as well because when we were growing up I think, if families do have favourites she was definitely the favourite and, not that it mattered to me, and I think my sister, unfortunately, lost her husband of thirty years only two years before my dad died. So for her it was a huge thing to have to happen and she didn’t deal with it very well.

And did it also affect relationships within the family, maybe between you and your sister and your mum or…?

I don’t, yes, it did because my sister used to come down and take Dad out and have a whole day. I couldn’t do that because I was teaching more or less every day. And she used to say to me, “Well, if you took Dad out all day, you know, he’s a lot better, he responds better”. But when we spoke to the, I found the odd days I did take him out he’d either fall asleep in the car and I couldn’t get him out the other end, or he wouldn’t respond. And when I spoke to the dementia team, they just said, “Your sister’s just been extremely lucky. She’s caught him on a, what they call, the good days.”

And because, even my mum said, because [sisters name] wasn’t around she didn’t see the bad time and didn’t, and basically, didn’t want to know, so it did cause a lot of friction between us, yes. Because if I phoned up and said, “Oh, Dad’s had a particularly bad day.” Or, “How’s Dad been?” “Not been good today.” “Oh, you always say that.” She said, “He was fine with me yesterday or last week.” So there was a lot of not wanting to be aware of the situation and how bad it had got.

That’s the nature of the illness isn’t it?

Yes, and also, as I say, she had recently lost her husband so that was quite raw.


Caring for someone with dementia can be hard and at times unpleasant. You’ve got to make the most...


Do you have any advice to other people who are in your situation?

I would say that, yes, any death like that of an illness or anything is not pleasant at all; it’s not what people want. The ideal death is just to pass away, although that’s awful for the people that are left. I would say just try and be happy with the moments you’ve got with that person. Don’t force them to do anything they don’t want to do, especially with dementia. We did notice that with Dad. In his lucid moments, if he didn’t want to do anything he shouted at, you know, and, “No, no, no.” So you have to remember there’s still a person in there somewhere. It’s just finding a way of getting it out really and that’s, I think it’s, dementia and Alzheimer’s is so complicated.

Someone explained to me once at a day care centre I worked at that it was like having a compass that on some days fell completely the wrong way you wanted to go, so you got nothing out of the person. On the days it was good, and it was a direction you wanted to go in, you’d get a lot of clarity from them that day, and that’s how they described it. And I thought that was quite a good way of putting it.

And just enjoy the moments you have with that person, whether they’re dementia or any other illness, it’s just try and make their life comfortable and happy. I used to say, when I was helping my dad, one of the things that I said to a friend once, “I put myself in that position and think that if I was in that I’d want someone to support me going to the toilet, washing and, you know, I wouldn’t want to be left.” And whether it’s a male to female, it’s not the ideal situation but Dad didn’t haven’t any sons so it left it to my sister and I.


Sue describes how moving the furniture ready for her dad to come home from hospital meant the...


So Dad arrived home three weeks later and the physios had already been to the house to assess the house beforehand. They live in quite a large house. They do have outside toilets but it was down quite a few steep steps, which my dad wasn’t able to access. So for my mum it was a huge change. The physio said that he wouldn’t be able to go upstairs, so we organised to have a bed put downstairs. A commode arrived. In fact, for the whole week before he came home the whole house was upside down, which for my mum was quite distressing because she’d been there, well, they lived in that house 54 years now. But we had to explain to her, and this is where my sister and I came in, that, you know, if she really wanted dad home she just only had that choice or it would have meant a care home. And because he seemed to recover from the stroke fairly well, not so much mobility or the incontinence side, but he became a little bit of old dad again. He was smiling and he, he seemed very grateful if you did anything for him and helped. So I think from that aspect, for him to have gone in a home, he would have deteriorated quicker.

We got him home and he, he himself decided he didn’t want to sleep downstairs. He obviously recognised the home as soon as he got back and he actually, struggled and tried the stairs. So we called the physio in the following morning and she said that maybe we could get support rails up the stairs, which she did, and that someone would have to be behind my dad all the time. My dad was a very tall guy and slim, not particularly overweight, and I think he was quite wiry so he was able to manage the stairs, and he seemed happy to be sleeping upstairs in the room, the bedroom he recognised.


Sue reflects that she lost her father when dementia set in two years before his death. She views...


I managed this quite well because I felt that I’d lost my dad when the dementia set in when he was about 87, because my dad was a very well-travelled guy, very good at finances, he’d helped me an awful lot over my life and a great conversationist but, as I say, when he first got the dementia he couldn’t talk for great lengths. He stopped reading the paper. He was an avid reader of books when he was, even in his eighties he would get four or five books out the library. And that all stopped. And little things like we’d go in and see he’d got the newspaper upside down, and if you questioned him he’d get really adamant about it.

But my sister, it was difficult as well because when we were growing up I think, if families do have favourites she was definitely the favourite and not that it mattered to me, and I think my sister, unfortunately, lost her husband of thirty years only two years before my dad died. So for her it was a huge thing to have to happen and she didn’t deal with it very well. If I can say anything, I’m actually quite glad my dad’s gone because he’s out of that awful pain, and I knew there was no way of him coming back as the dad I remembered. And if you reach 89 and you’ve had a wonderful life until you’re 87, and I do the same, I shall be so happy.

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