Interview transcript

My name’s Malcolm Reed, I’m 76 years of age and I’m here to talk to you about my experience of looking after my wife Margaret. Margaret was a person that didn’t have a bad word or a bad feeling for anybody. It’s – It’s a long goodbye. I looked after Margaret, she got diagnosed in 2007 and then she passed away in 2017, so that was 10 years. 8 of those years, I was a carer for her. They did tests on Margaret and said ‘I’m going to send you to Hull Royal Infirmary and we’re going to have her assessed properly’. Which we did, we took her to Hull Infirmary, she had all the blood tests, she had all the scans, everything else. And we came back a month later, and the gentlemen that was – and understood to be the consultant said ‘oh she’s got brain shrinkage’. Now by that time I’d done some research and I said ‘yes but what is the name of the brain shrinkage’. He said ‘well’, I said ‘look I’m not happy, I said as long as you’re  going to tell me exactly what it is, I want to see the  consultant’. He said ‘it’s Alzheimer’s’, I said ‘thank you’. And at that point Margaret broke down because she lost her mother to Alzheimer’s, so she knew, in a sense, what was going to happen to her.

So we went home – went home, had a good talk and she said ‘what we going to do’ she says ‘will I end up in a nursing home?’ And I said ‘not while I’m alive’.

It was okay the first 2 or 3 years she was capable of doing things, enjoying her life, and then it started deteriorating so she had problems. Problems forgetting how to write her name, how to add money up. Things like that which was important if you were going to go out on your own. She also got a bit of a problem with directions. Now we had a dog called Toby at that point, a Labrador, and she used to take the dog out but I think the dog, in a sense, knew because he always brought her back. But when she got to a later stage, the village I live in is a good community, and people understood, and they started walking with Margaret so she could go out.

Now, at the time, I’d got my own business, a driving school, which I’d had for 43 years. It got to a point where I could not leave her on her own. So, I made a decision, I closed the driving school down and became a full-time carer.

If you don’t know the symptoms of Alzheimer’s, it’s hard for you. I did look it up, I got a lot of research, I got a lot of information from Alzheimer’s Society which I was doing some volunteer work for as well at the time. It got to the stage where Margaret then had a social worker and a mental health nurse. Now the social worker, I couldn’t fault her one bit, lady called Gill Curr. Any problems, she was there, she was helping me. Things progressed a little bit more, it got to the point I had to dress Margaret, I was having to cook for her, I had to make sure she could have a bath. So, Gill said ‘you need help’, I said ‘fair enough’. So she arranged for a company to come, with carers, and start helping me, one in the morning, one in the evening. Basically to get Margaret up, get her dressed, give her a bath, make sure she cleaned her teeth, things like that. And, it took some of that pressure off me. Now, I’m speaking now possibly as a man to a man. When a man’s worked all his life and has never looked after a house, and he suddenly finds himself looking after someone who’s got an illness and the house as well, he’s in a whirlpool. He’s got to not only learn how to look after the house, he’s got to learn to cook, he’s got to learn how to use the washing machine, the microwave, how to make the bed, sometimes, which he’s probably never made, cleaning. He’s got all the things a woman needs to do in a house and suddenly he’s got that and somebody who was quite capable of looking after him has suddenly got the point of return where he’s got to look after her. Margaret’s daughters visited occasionally, and they were very upset to see how their mother was deteriorating. Richard, the son, was actually living with his father which was Margaret’s husband and it upset him that much he said ‘Malcolm’ he said, ‘I can’t come anymore’. I said ‘Richard, I understand’. He still phoned up, he still asked, he still send her birthday cards and everything but it hit him that hard, he could just not watch his mother go downhill. And then you get to the point where, not only are you feeding Margaret, you’re having to cut the food up because she can’t eat solid foods too much, and you’ve got to make sure she doesn’t choke. Then, she’s got the mood swings. Now, Gill came to see me one week and the first thing she said, ‘what have you been doing Malcolm?’. I said, ‘what do you mean?’, she said ‘you’ve got scratches on your arms, you’ve got some on your face’ she says, ‘have you fallen into a bush or something’. I said ‘no, Margaret did it’. She said ‘oh’, I said ‘you’re not doing anything’, I said ‘I can take it’. But there’s a point there where some men wouldn’t. Margaret was a gentle person, if she’d have known what she was doing, she’d have been mortified. Gill said ‘you need some respite’, she said, ‘what we’re going to do is we’re going to arrange for you to take Margaret to nursing home-‘, I said ‘I’m not putting her in-‘, she said, ‘no’, she said ‘all we’re doing is taking her for a day, she’ll go in the morning and you can pick her up in the evening and you can have a days relax in-between’. I said ‘okay’. So we did that.

It was so strange, coming home and she wasn’t there. But I knew it was for my own health, otherwise I’d have been in hospital, then it’d have been more serious.

Again, the progression got a little bit worse, we then had to have an assessment for incontinence. So, Margaret now was wearing incontinence wear, wearing one thing and another. Again, a man, that’s never done it, probably never changed a nappy even when he’s had children, you’ve suddenly got to know the lady who you’ve lived with and you’re having to clean her and make sure she’s clean so she doesn’t get any infections etc and things like that. I can always remember one point, Lorraine, which is her youngest daughter coming to see us and I was cooking dinner and I knew Margaret wanted to go to the toilet. So I said ‘oh your mum needs to go to the toilet’, she said ‘oh I’ll take her’. Fair enough, I said ‘just make sure you watch what she’s doing and make sure she’s clean’ one thing and another. She said ‘oh I know, I’m alright’. I walked past, it was a downstairs toilet, I walked past and Lorraine stood outside the downstairs shower and toilet and I said ‘what you doing Lorraine?’, she said ‘I’m waiting for my mother to finish’, I said ‘no, you don’t, it’s a hands on job, you go in and do it for her’. She said ‘what do you mean?’, I said, ‘you’ve got to take her trousers down, you’ve got to make sure she’s not soiled or anything like that’. And I said ‘the  box in the corner has got incontinence knickers‘, and I said ‘and if it’s not, you’ve got to wash her’. She said ‘well I can’t do that’. I said ‘oh get out the way Lorraine, I’ll do it’. And that was an older daughter – one of her younger daughters. She was in her 30s at that stage. So you’ve got all that to contend with, not only possible mood swings, incontinence, sleeping patterns. She was starting to wake up, sometimes at 3/4 o clock in the morning and wanting to get up thinking it was earlier when it was 3 o’clock at night. So again, we had a talk with the doctor and he gave her medication called Trazodone. Which it suits some people but it suited Margaret down to the ground. She would take it about 8 o’clock at night and she would then sleep through the night so it meant I was getting my sleep then. Because you get so used to that person, you’ve got to – you’ve got a second sense. It’s like you feel them moving or getting out of bed and you’re awake.

You’re not getting any sleep because you’re always on that like alert system to see if she’s gonna get up because the last thing you can do is let her walk round the house because if she decides to go downstairs, she can’t cope with it, because you have to virtually hold her arms and I used to go downstairs backwards and slip up going down.

So the last thing – so in the end I actually put one of the old baby gates on top of the stairs, but I put a lock on it so she couldn’t go downstairs if she did manage to get out. Also, had from the occupational  therapist, what you call a pressure mat, so as soon as she stepped out of her side of the bed, the alarm went off. So that was again covering all aspects, trying to get it sorted out. Arranged for a person who I knew to come to the house to give her, a hairdresser, to give her a hair cuts and things like that. Chiropodist to make sure all of her nails were cut and again it’s something you don’t think of, it’s a lady thing, so you’re thinking of all this as well as trying to live. I had one thing that I used to like doing and that was squash, it got to the point where I thought, I can’t – I can’t go anymore. One of my neighbours, a lady called Elsie, I spoke to her about it and she said ‘what you doing Malcolm, go play your squash, I’ll come over and look after Margaret when you’re going’. I said, ‘are you sure?’, she said ‘yes of course’. Elsie was an elderly lady but she was actually – her job used to be in a care home so she knew what she was getting into, she knew what Margaret was like and she used to come in, and I always used to make sure there was a bottle of Bailey’s or something like that or something she could have to drink – she used to like a can of lager – I used to make sure there was a can of lager. And I said, ‘do I pay you?’, ‘don’t pay me’, she said, ‘go to squash club’. I’d come home and Elsie at times was putting Margaret to bed, which was good. But then, there was that one time when Elsie said she had a bit of a problem – I said Elsie, just let her fall to sleep on the settee. I said ‘I don’t want you trying to get her upstairs and you coming down and injuring yourself’. So that continued for a bit, till that fateful day, after 8 years of looking after Margaret, Gill Care the social worker turned up, I knew she was coming, but what I didn’t know is she walked in with Dr Gallagher and the mental health nurse. And I said, ‘what’s going on?’.

I don’t know whether people know about this but I’d got full power of attorney for financial and health. But under the Mental Health Act, if the doctor thinks you’re not capable, medically at looking after the person you’ve got, they can override it and say they’ve got to go into a nursing home. There’s no ifs, no buts.

I promised Margaret she wouldn’t go in but I didn’t have a choice.

Now, at the point she was going to – for respite to a nursing home in Scunthorpe, and I knew a lady who was running one in Doncaster, so I arranged for her to go to this one in Doncaster, and she went there, she was quite happy. But then the manageress got poached, a lady called Lindsey, got poached by another company and I asked her where she’s going. She said ‘oh they’re building a big new nursing home outside Woodland’, she said, ‘and I’m going to be the manageress’. I said, ‘oh’, I said ‘good’. So, can’t stop the lady from improving her career, she moved out and then I saw a deterioration in the nursing home. Went down to Elm Lodge where Lindsey had moved to and I said, ‘Can I fetch Margaret in for two or three days?’. She said, ‘yes, of course you can’. She went there, place was like a hotel. Compared with some nursing homes it was like a hotel. She was having respite for two or three days, one thing and another. And then Lindsey said, ‘Malcolm’, she said, ‘We’re getting that full’, she said, ‘I can’t do respite anymore’, she said, ‘we can only take full-time care’. I said, ‘fair enough’. So I took her back to the one in Scunthorpe, and did that and at that point, this is where the doctor came to see me. So I rang Lindsey up, and I said, ‘is there any chance of a full-time place?’. She said ‘not at the moment, but you’re first on the list’. She rang me about two weeks later and said ‘we’ve got a room, Malcolm, do you want to bring Margaret down?’. I said, ‘can I sort it out with the social worker?’. She said, ‘yes, that’s ok’. And by the time the social worker had tried to get it sorted out, the room had gone. So I said to Lindsey – she said, ‘I’ll let you know’. A month later, she rang me up, she said, ‘we’ve got another room, Malcolm’. I said, ‘right’. So I rang Gill Care up, she said, ‘don’t worry Malcolm’, she said, ‘I’ll sort it out, take her’. She said, ‘take her. That’s where you want her to go, take her’. So she went in. Lovely room, clean, new place. Three floors on the nursing home. One for residents on the bottom floor, middle floor was for people like Margaret with Alzheimer’s or Parkinson’s etc, things like that. And the top floor was for people with medical needs, that needed medical attention. But there was always a nurse on 24/7, on all three floors. They always gave medication, and I used to – it used to be a 40-50 mile journey. So it got to the point I was doing it 3/4 times a week and going in. And, actually, Lindsey said, ‘you’re helping the girls when you’re doing that Malcolm’. I actually got it to the point, I said, ‘what about safe guarding?’. She said, ‘well we’ve got a meeting about safeguarding tomorrow’. I said, ‘well I’ve done it with the volunteer work I did’. I actually did the safeguarding, the lifting, the hoist. I went through all the exams and learnt how to do it. And the girls used to say, ‘you’ve got as much experience as some of the staff here, Malcolm’. And I always used to say – I used to sit at a table and feed Margaret and it got to the point where – I forget the name of the thing – they assess the person eating the food and if there’s a choke risk, then they start doing puree food. It’s virtually – everything is just, you know, in a – pureed down till it’s like a soup. And Margaret was eventually onto that. So, again, like that, we used to have a Christmas dinner, we used to have parties, they used to have entertainment. The nursing home’s been – in fact, the first time Tracy, her eldest daughter came down, she’d walked in she’d said, ‘I’m pleased you put my mum here’, she said, ‘I love it, it’s absolutely brilliant’. I said, ‘yeah’. And somebody I know once said to me, he said, ‘why’re you spending all that money?’.

I said, ‘If I’d been the person with Alzheimer’s and Margaret has had to put me in a nursing home, she wouldn’t have put me somewhere that was cheap, she’d have put me somewhere like this’. And I said, ‘out of respect, I’m doing the same for her’.

It’s destroying you because you know what that person was like.

I mean when she first went in, some of the girls used to say, ‘she’s like an Olympic runner’, she said, ‘we turn round and she’s at the other end of the corridor, she’s so quick’. And it went down to the point where she needed two people to assist her down the corridor. To some people it would have been upsetting, but I took it quite funny. I can always remember going in one day and the girls saying, ‘oh Margaret, Malcolm’s here’. And she said, ‘who?’. And one of the girls said, ‘your husband’. She said, ‘no he’s not, this is my husband’. And pointed to the old fella next to her, and the girls said, ‘didn’t that upset you?’, and I said, ‘no because that’s not Margaret’. I knew, yeah it felt odd but how can you blame somebody who doesn’t know. Things went on and at 2017 she started getting to the point where she was getting bed bound and things like that. So she was in a special bed. She really deteriorated. The nurse came in and she said, ‘I’m sorry to say Malcolm, but we’re going to have to put her on end of life’. I said, ‘fair enough’. And she said, ‘she won’t know – we can’t feed her because she’ll choke. All you can do is just wet her lips and make sure her mouth is moist’. Her brother who she’d never seen for 5 years got in touch with Tracy and he turned up, virtually – he came and sat with me for three days. And he said, ‘I’m sorry Malcolm’,

I said, ‘there’s nothing you can do, Terry, it’s- it’s just the nature of the disease’.

And then, they started giving Margaret morphine. One of the nurses who came to give her the morphine injection, he said ‘I don’t think she’s going to last the night, Malcolm’, he said, ‘I’m sorry to say but-‘. 36 hours later she was still alive. I sat in that bedroom – for 39 hours. I must have fallen asleep because when I woke up, she’d gone. That was on 17/12/2017. The girls came down, dressed her. I got a prepaid funeral- so they arranged for them to come pick her up. Girls had even taken a flower and put it on her chest. And then the undertaker said, ‘do you want to leave the wedding ring and the engagement ring on?’, I said, ‘no. I’d rather you take it off’. So they gave me that and I’ve still got them now.

And basically, the rotten thing about having to clean the room out the next day, and going home, and realising that I’ve got nowhere to go because I’ve been doing it for two years. So all those journeys, I didn’t have to make.

But, as I said, the day of the funeral, all of Margaret’s family turned up, my family turned up, and the whole of the village turned up. We got about 180 people. And the lady that was catering, a lady called Sandra Bishop, who Margaret used to work for when she realised she was having a problem, not to remember what to put on the orders when she was making sandwiches. So, she came put all the catering up. She said, ‘Would you like anything for the gentlemen’. I said, ‘I want you to put a bar on’. She said, ‘do you want to give them the first-‘. I said, ‘nope, put a bar on’, I said, ‘the ladies can have what they want. Sherry, you can get them Prosecco whatever you want’. I said, ‘we’re going to send her off properly’. So do all the catering, have an open bar, and we had a good send off. Her son Richard came and said, ‘who’s all these people?’. I said, ‘they’re all the friends in the village’. And that’s where we are now.