Roger and Luise – Interview 32

Roger’s wife Luise was diagnosed with motor neurone disease in 2004, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

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 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 the 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 themselves 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.

At the end of life the Iain Rennie nurses were able to administer a drug to relax Rogers wife…

Age at interview 67

Gender Male

In the meantime Iain Rennie Nurses had come in, into our, into our lives. This is another charity that’s a wonderful organisation and really they are there to nurse, well it’s Hospice at Home really, people who want to die at home. And they, they sort of monitor the drugs and, and, and they administer a, a drug that’s called just in case’, that, that, that’s the name that they call it and really it’s just, I think in the latter days of your life they just inject this drug to relax you and make you, more restful, and relaxed, and we had all these things in place.

So we would, we had Iain Rennie really to, because they, they know more about dying than doctors do, and they see that the patient is comfortable and all the stress is taken out of everything so they can relax the patient by drugs. They can also fast track prescriptions. They phone the doctor up to say what is needed. They fax it to the chemist and the chemist will deliver it, and if they don’t deliver it then Iain Rennie will. they’re a twenty-four seven service and they give good advice. That’s another wonderful organisation. So we, yeah we were very lucky.

Embed Print Transcript

Roger was impressed with the occupational therapist who was good at predicting what equipment…

Age at interview 67

Gender Male

Did they come at a time that you needed them? Sometimes they all come together.

Well, we had two people that were outstanding and that was the occupational therapist who seemed to be one step ahead of the, of the game if you like, and, and the neurologist special nurse, and these two ladies were absolutely fantastic. So that if Luise, for argument sake, needed a, a more comfortable bed, then the occupational therapist would get the wheels in motion.

And, you know, just, as soon as I got this standing hoist and what a wonderful piece of equipment it was that I just, didn’t bother any more. We managed that ourselves. But I have to say that, without these pieces of equipment we would’ve been snookered really because, and the, as I say, these two, the specialist nurse and the OT, got it all, well just they were one step of the game really. You know, if Luise needed a, a wheelchair in a month’s time. You know, three months before they’d make the arrangements. So they’re very clever really how they did it.

Embed Print Transcript

When Roger could no longer get Luise into the car he used a local dial-a-ride service that could…

Age at interview 67

Gender Male

I mean she was a wonderful character, and I, I think that’s what really got her through, through her illness. Yes so, as, as things went on, we were, after this extension we, we could gather round a, a bit more and, probably six months before she died we lost the use of our car, because we could no longer get Luise into the car. So we, so we used the sort of a dial-a-ride system where you, you phone them up in advance and you sort of say, Oh could you pick me up say nine-thirty on Wednesday And they would, because they, it, it’s like a pick up and drop off system which takes wheelchairs and elderly people around the neighbourhood. I think so we’d, we’d say half past nine one day. They’d come at ten o’clock, another day they come at a quarter past nine so you, we’d probably have to get Luise ready half an hour beforehand and just hoped that they, that they came on time you know.

Embed Print Transcript

Roger felt that the system let him and his wife down when they had to use their savings to pay…

Age at interview 67

Gender Male

The package system all went wrong because the social services don’t talk to the finance people. If you’ve got 20 K in the bank, then they won’t fund anything. So the downside of the, of the, all the care packages was the social services. But really the people that staff it aren’t to blame, it’s just the system.

Somebody who screws and scrapes and, to have a comfortable latter life if you like, well retirement, we’re both in our retirement age and needed those savings to, to live on, you know? And they take all that away, well they just won’t give you anything.

If you’ve got 20K, the person that’s ill, if they have 20K savings then they won’t give you any financial help at all.

Embed Print Transcript