Roger & Luise - Interview 45

Age at interview: 67

Brief Outline: Roger's wife Luise was diagnosed in 2004 aged 59, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

Background: Roger retired from graphic reproduction for the printing trade, widowed, with 2 adult sons. Ethnic background/nationality' White British.

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Luise first started noticing weakness in her fingers in 2003, about a year before she was diagnosed. She then had a few falls, and found one leg was also getting weaker. At first everyone tried to reassure them it was not MND, but Roger suspected it was. This was confirmed after electromyography (EMG) tests in August 2004. 

Her symptoms got steadily worse. They had various aids to help, including wrist supports to help her eat, a splint to support her foot, bathroom adaptations and a riser chair. The occupational therapist provided excellent support and anticipated their needs, and the MND Association helped with equipment. Sometimes, however, they had problems getting equipment they no longer needed taken away. When Luise could no longer manage the stairs they had an extension built so she could live downstairs, but they had to pay for this themselves. It included a wet room with hoist to make showering easier. For the last few months she also used a Lightwriter. 

She was a strong person who never complained, and drew comfort from her Catholic faith. Roger and his sons wanted to care for her at home themselves, and one son moved back into the family home to help, while the other son came over regularly and helped with things Roger no longer had time for himself, such as keeping up the garden. It was a full-time commitment to provide all the care, but with both his sons and supportive parishioners and friends involved they had a good team. One neighbour designed downstairs disabled accommodation for Luise.

For a while, they had one day a week respite care at a local hospice, but once Luise could no longer speak she found it frustrating and so they stopped using it. At one stage they had to have emergency respite care when Roger had an operation and was unable to lift for 6 weeks. Luise stayed at a Sue Ryder Home for 2 weeks which was excellent. She was then supposed to come home with a home care package organised by social services, but this fell through and she had to transfer to a nursing home. Her family were not happy with the quality of care in the nursing home. They also found the paid carer service unreliable and preferred to do it themselves rather than pay for poor quality care. 

Towards the end of Luise's life, they were supported by palliative care nurses from the Iain Rennie Hospice at Home organisation, and a specialist community nurse. They had seen a doctor to discuss whether Luise should have a PEG shortly before she died, but in the end her condition deteriorated too quickly. The specialist nurse asked if they were sure they did not want her to go to hospital, but Roger felt strongly that he and his sons could continue caring for her. A priest came to give her the last rites, as her breathing was becoming more difficult. She died the next day, at home in her own bed. 

They built a bathroom extension, with a large wet room and a hoist loaned by the MND Association,...

We had an extension built. There was an existing room there, a single brick construction that we had gutted, really, and made into a wet room so that we could wheel Luise in on commodes and slide her over the toilet. We had a shower facility and she could wheel her - well, drive her wheelchair into the wet room, which was quite large, and place herself just above the basin and I could wash her hair. The care was twenty-four seven, which we did all ourselves.

I have one son who was living at home, who was sort of working three days a week in London'then because his Mum was getting worse he came home to live at home and he was a great help, especially in the latter months of her life where I was having to use hoists to transport Luise from bedroom to wet room to the kitchen or the lounge. 

And of course when we moved into the extension - which was April, it was five months before Luise died - everything became a lot easier for manoeuvring. We had a ceiling hoist, a standing hoist which was a wonderful piece of equipment, which was loaned to us [by the MND Association].

Roger found strength from somewhere. It was wonderful to see his sons involved in caring for...

You know, I'm not a religious man but I think I got strength from somewhere. I really do, it was, I don't know. I mean, if it, if you knew my wife, it wasn't really a problem because she was always cheerful, you know, she never moaned about her illness and, and you know, sort of people say, 'Well why you Luise?' And she would say, 'Well why not me?' You know, 'I've drawn a short straw and that's it really.' 

So I mean I was just focused, I knew what I had to do. You know, we'd get up at certain times, well, obviously the first thing I had to do was take Luise to the toilet. Yeah, I just coped really. Probably about six months after Luise was diagnosed in March of 2005, I had reached retirement age, I retired about a month earlier. But, two weeks after my retirement I broke my Achilles tendon, so I was hobbling around in plaster for seven and a half weeks. So that was an added hazard really. 

And while all this was going on of course I couldn't do the garden. My son who lives nearby in [town] used to come over and do my garden over the weekend. My other son who was living at home was the joker of the family really. He kept his mother amused and even when I had to nip out and get some shopping or something like that and she needed to go to the toilet, he'd take her to the toilet. Lift her up and put her into the wheelchair if she was in bed and, you know, whip her into the wet room. Sort of looked like that and, did the business really. Which was, wonderful to see really because mother and son I mean, it's a difficult situation really doing the hygiene of a, of your mother. But he somehow managed that and, yes so really we had, we had a great team. 

And when I'd busted my leg up, Luise was involved with a local Catholic church, and all the parishioners would come round, knock on our door and we'd say, 'Who's that?' And there would be a shepherd's pie for four people, [Laughs], you know, amazing really and, people used to come round to visit and yeah so [sighs], it was tough but it wasn't all misery and dismal, really.

His wife got very tired but found it difficult to get comfortable in bed. Using different...

So with the OT, the specialist nurse, all this equipment we were getting, the hot summer, if you realise that, you know, you can't move anything when you've got MND so you're in bed for, probably ten hours maybe, probably ten to twelve hours because Luise used to get tired, she used to go to bed about half past eight at night. And then of course, she'd be up quite early because she wouldn't get a lot of sleep really and I used to have to get up in the middle of the night, in the latter months this is, and raise her legs up to her buttocks so she, she could be more comfortable. And then it was, so it was like a tent affect and then it would all of a sudden collapse and I'd have to get up and do it again. And, and of course the heatwave of 2006 was a nightmare for her because we, we really couldn't get the right mattress.

So once again the NHS, their loan equipment department came up with various mattresses, some that you, pumps up with the aid of a, you know, it was, a motor. And you could have different sections of it pumped up and others not, you know, to, to make you more comfortable but none of these seemed to work. But in the end she stuck to the original one that she had, which was quite nice but we thought, the others might make her more comfortable but they didn't really. And all sorts of different cushions for sitting on, because you know your muscles are wasting away, you're all skin and bone really and, and things get very, very uncomfortable. But no she, she coped amazingly really. Never moaned, never complained, always joking.

Luise had a drug to help her relax in the last days. She died at home with the support of family...

On the Tuesday I think she was out of it most of the day because we'd given her too much of this relaxing drug. Wednesday morning when I got Luise up to take her to the toilet she said to me, 'You must phone the specialist nurse and see what she can do for me.' And so I did that and she came early in the morning, also there was an Iain Rennie nurse in attendance to inject drugs into her. 

And yeah, that was it, and the last few days they were injecting, instead of giving her pills they were giving, injecting this 'just in case' drug, I think really it, it's to, really to relax you and, sort of take away any pain. I think it's a drug that they give you when you're in your last hours of your life really. I didn't know that at the time. I mean, all that I'm saying to you is, you can't really imagine what it's going be like. It's, you know, and you don't know how you get through it but you do. So the nurse arrived early in the morning. Spoke to the Iain Rennie nurse, and then she left and then the specialist nurse took me to one side and she said, 'Roger, Luise is desperately ill. You don't want her to go to hospital?' And I said, 'No', and she said, 'Well I think I'm going to have to ask you to get your sons home.' So, I phoned them up and [name] my youngest son was working in London and he came home immediately and my other son at [town], working in [town] he came. And during the day, Iain Rennie would pop in to see how Luise was and administer the injection. And [son] said to his Mum, 'Would you like the Last Rites, Mum?' So, he phoned up the priest and, and this was probably about three o'clock on Wednesday afternoon and the priest came up and gave Luise the Last Rites and it was a wonderful ceremony. All during the day, daytime we were, sometimes there were just the three of us, me and the boys and their mother, other times there'd be one, you know, just talking to Luise and holding her hand, and that went on all, all through the day. And then ten o'clock at night, an Iain Rennie nurse was in attendance. And, so about midnight I was still sort of very active with Luise, moving her feet around and her legs, try and make her more comfortable and eventually because we were, we were sleeping in the same room together so I could monitor her. That was five months we were in the same bedroom, and I went to bed about half past twelve that night, and the Iain Rennie nurse was popping in every two hours to see whether Luise was okay and at half past three that morning she'd been in at, no, I think she'd been in at two o'clock, and then at, and she came in again and Luise had passed away. I won't say peacefully because, I don't think it was peaceful if you can't breathe, because it's the collapsing of the diaphragm, the muscles that work the diaphragm just give out.

When he had an operation he needed help. Luise had two weeks in a wonderful Sue Ryder home, but...

But I think I must've strained myself, my stomach and, well, my hernia, I went along to the doctor and this was probably about September just after I sort of recovered from the leg injury and they decided that I needed a hernia repair.

So this was in January 2006, and I went in and that time I wasn't allowed to lift for six weeks. So this became a bit of a problem so we, the practice nurse of the surgery they got in touch with a caring organisation, [county organisation], and they tried to place Luise for respite for a couple of weeks, and then they were going to get a care package in. But in the end the specialist nurse pulled a few strings and got her into a wonderful Sue Ryder Hospice in [town]. And she spent two weeks there, but unfortunately because we were exercising Luise, trying to keep her still walking, we lost that facility because of the amount of staff in there, they couldn't give her the sort of one-to-one attention we were giving her at home. So she lost the use of walking then.

And then as I say, they couldn't arrange with the social services and the local council, they couldn't arrange a care package because everyone was on holiday, this was over a bank holiday time, I think. And so when also - so they couldn't get a care package in time for us, which was supposed to start two weeks into my six week period. So they had to take her to a nursing home, an old people's nursing home, which we were appalled with really. I suppose as a nursing home goes it was quite a nice place but, you know, the facilities that Luise was having at home and in this nursing home were very dismal, really, because you really have to queue up to go to the toilet. And so she was there for two weeks.