Interview 47

Age at interview: 59

Brief Outline: Carer for mother who had a stroke at the age of 83. Her mother now suffers from vascular dementia and some visual loss. She is registered partially blind. Medication' bendrofluazide, perindopril, (blood pressure) omeprazole, (gastric resistant tablets) citalopram, (antidepressant); senna and/or movicol, (laxative) calichew (calcium/vit D3 supplement) alendronic acid, (bisphosphonate ), detrusitol, (urinary continence).

Background: Is a married mother of two children and is carer. Ethnic background/nationality' Scottish.

More about me...

This woman's mother had a stroke at the age of 83 she is now 84. Her stroke was due to a haemorrhage. As a result of the stroke her mum now suffers from vascular dementia. Her main problems have been with poor short term memory. She has also experienced visual hallucinations for example complaining of people being in her bed at night. Her daughter also thinks that her mum's personality has changed and thinks she has become much less tolerant and more likely to snap, she has also noticed that her mum flirts more with the male nurses.

Her mum was in hospital for quite along time after the stroke and they had mixed experiences of care. Initially she was encouraged to be independent but in a third hospital she was not allowed to do anything. They have however received some good help from social services in setting up a care package and good advice from the local community rehab team which has allowed her to return to sheltered housing. 

She has a care package arranged for getting her up and dressed in the morning and putting her to bed at night. Her daughter and other siblings visit every day and provide her meals. 

They have recently had problems with her mum falling and has started to wonder if she needs to take on more of a caring role, for example staying with her overnight. Friends and family have, however, encouraged her not to as she has other commitments looking after her daughter's children and needs to look after her own well being.

Her mother has loss of peripheral vision (hemianopia) and sometimes she does not brush one side...

With the Hemianopia do you think she ever doesn't, you know maybe, clean part of her hair or'

Sometimes yes, uh huh. Some-, oh yes sometimes, uh huh.

Can you talk about that?

Yes sometimes, [the carer], oh, the carer she gets in the morning, she makes sure she's looking really nice, she brushes her hair and everything. But then if she's, through the day it can be a bit of a mess, maybe if she's had a wee lie down or of she falls asleep, or what have you, and she does kind of, miss things at the right hand side and this is also a problem, she can knock on, she can knock her head on a door if she's entering a door. In fact, she really worries me at times. She's always standing behind you so when you turn to go back she's sort of backing away from you and she's got a unit in the living room and I'm always waiting for her to bump her head, she's always getting a bump on this side, this side, this bit here, she's always bumping, and again that is because that's obviously due to the, you know, the shadowy part of the right hand side of her eyes. And she's had quite a number of really bad ones, really sore ones, you know. 

Carer of mother who has had a stroke describes how her mother's continence problems are the most...

One of the degrading things about mum having the stroke and the dementia, is the lack of the not so much the bowels, she's not so bad that way but the urine. She's got to have, wear pads now. She's had to wear them, immediately, almost immediately after she had the, well almost, when she came up here from Kent she's had to wear the incontinence pads. She's found this a bit, that was distressing to her at the beginning but we just kept telling her that that was part of the illness as well that it's affected her that way and she accepts it better. She accepts it as a physical illness, she's happy to accept quite a lot of the things that are happening as a physical illness rather than a mental illness, the dementia. We just don't go there at all, we just make it all physical so that she'll accept it all. 

She has had a number of accidents. Quite a number of times actually. We were all down to Kent again for my niece's wedding in April and it was a wonderful time, we were all there. I went a couple of days early to help my sister out, and my brothers and my sister brought my mum down. And it was a really lovely weekend, we all thoroughly enjoyed it. And because I've got my grandson with me so much, at one point , my sister went to take my mum to the toilet, I wasn't exactly standing there so my sister took my mum to the toilet and my grandson shouted to my sister, he's got a lisp as well and he's saying, 'Auntie', 'please make sure the pads the right way up because she'll wet herself,' he's saying and it was so funny, we were all in, we tried not to let my mum see us laughing but we were all laughing because he's there when I'm, if she's had a wee accident, she sometimes puts the pad on upside down so that the urine is actually hitting the, you know, the protective part, the plastic part, so then she's maybe wet her trousers and things so although she's wearing them if you're not actually there to make sure it's the right way up she can still have accidents and this is quite, this is so upsetting for her because she's not that, that bad yet with the dementia, now and again she's, so it, it really upsets her. So we have to have them all delivered as well and we've got to keep a note if they're nearly running out and. There's a lot you've to remember, there's, her hearing aid batteries, there's the incontinence pads, the bowels she can get quite ill about the bowels because sometimes she gets very constipated and that upsets her. 

Her mum's personality has changed since the stroke she is now snappy and swears and is...

I believe that can be part and parcel of having the stroke as well because her personality's changed a lot too. I have to confess that it depends how you're feeling how you cope with it. If she's having a really bad day and she's, I sometimes call it 'black and white days' if I say black, she'll say white. If I say white, she'll say black immediately, you know, so I do get quite a number of days like that as well and it's, that is quite stressful, it's quite, it hurts your heart really, you know, it's, it can be very, very difficult at times.

When she was in the second hospital, she said she had sworn at one of the nurses, the one who was really, really nice to her as well. That upset us all because we don't, we don't hear my mum swearing, you know, that was so out of character it was, we were really shocked when she explained this. But reading that book was excellent, it, everything that we were worried about and upset about was in there and this is exactly the course it's taken, the road it's taking. So we've just got to really more or less accept it all. 

She's very flirty since this stroke. She's, the young male nurse that she really loved in the second hospital, she flirted with him all the time and he, obviously he understood what was going on and he was excellent with her. But sometimes it can be a wee bit embarrassing. I mean, when the ambulance men came on Monday, she's, she was talking about her, her boobs on Monday and oh I'm sitting there, was quite horrified actually. And it's weird, it's as if, it's as if she's young again and she thinks she's this young, lovely woman she was when she was, I think her mind takes her back to her being young. And I don't even think she was flirty then because she's, she met my dad when she was fifteen years old and it's not that she's had other boyfriends or anything but she's definitely flirty, definitely. If it's a, a male, she's quite flirty with him and she'll maybe say something and you know, and we find it really strange, this, but again, this is another change of personality that's caused by the stroke which is amazing. 

She is not always there to give her mum her tablets so the chemist came to visit and discussed...

The medication side. The chemist, I was putting out her medication on a daily basis, but then I was supposed to be not going every day, and there were some times if I had to do something for my daughter or whatever that I've missed a day, so we, the chemist himself, I thought was an excellent service, came along to my mums, he sat with my mum and I, we had a meeting and he went through everything, every medicine that she was being prescribed and told us exactly what it was for, which was excellent.

She does get tablets from the doctor, as I said the chemist came along and discussed all the tablets with us and she now gets them on a weekly basis in a bubble, which is excellent and you can see what day and if it's morning or if it's tea-time or, it's an excellent, I really think it's an excellent service. That's saved a lot of worries actually, the, you know, she's, if I hadn't the tablets laid out ready the carers are not supposed to do that so, and sometimes my brothers or my sister are not sure what tablets she gets, although it was written down, maybe couldn't find it or what have you, so that's been a wee worry as well, but this, bubble thing is just absolutely wonderful, thoroughly, thoroughly appreciating that.  

Advises others to get a care package arranged as she feels caring for a relative who has had a...

Advice, that's a hard one isn't it. Advice initially is to get a care package put into place as quickly as, as possible because that is, unless the stroke was more debilitating, unless it was a paralysis or what have you, my mum there, she was very lucky that she's not been paralysed or her speech. She did get speech therapy for a little bit because it was just a tiny little bit sort of, slurred. But her speech is fine. But if it was somebody in the position my mother's in and she could go home to get this care package set up definitely to have the care package set up and again it would depend on age and illness because my mum's having the dementia as well, if it was somebody that was in the same position, stroke wise, dementia wise, to get a care package set up, as best a care package as you can possibly do. And we really, really fought for that. Then it could be somebody that's not got, as, so lucky with family as my mum is that people are popping in and out all the time. It could be somebody that's having to do it all and that person has to really try and get a bit of time for themselves. It's got to happen, it sounds selfish, and on saying that I'm not very good at taking this advice myself but I'm definitely going to make a great effort to do it. You have to try and find a bit of time for yourself because it really is, emotionally it can drain you, emotionally, a, the victim having the stroke and you being there for them. It can drain emotionally, definitely. Sentimentally and emotionally it can, it can drain you, it's very difficult. But if you get a good care package things should help a lot. 

Her mother has vascular dementia following her stroke and they have a tuck in service to try and...

We have a book that I've asked the carers, everyone to write things in the book. I write things as well, when she's got appointments and what have you. And the carers just let me know that [coughs], excuse me, they're just letting me know, she had a good breakfast. She's got a carer who comes morning and lunch time, it's a different one at tea time, we now have the tuck in service for her for in the evening although nine times out of ten she doesn't let them change her into her nightwear. We're still happy that she's got this tuck in service because we hope it encourages her to get, she knows what time of the day it is then and they can, they don't actually put her to bed because she, oh totally, mind you they were coming quite early and it was a shame to put her to bed too early. But a lot of the time she's actually, she's not going to bed she's sitting up in an armchair in the living room. And that's quite upsetting, but my brothers, most people have told me, don't start going along at night to make sure she is in bed because I'd have to do it all the time. And that's what the tuck in service is for. And it's very hard to rely on the carers and the tuck in service when you've been used to doing it but I am learning and I'm trying not to go every day because it is expected and the trouble is when I'm not here, when I'm away on holiday or whatever, sometimes it's harder for the rest of the family to do what I do, and she is looked after between the carers three times a day and the tuck in service at night. So we've got to try and step back and let this happen.