Barbara is 81 and lives on her narrowboat in Milton Keynes. She’s spent most of her life outdoors, through her work as a landscape gardener, Scouting with her two
sons and in later years navigating the canal network.
Having been so active, Barbara is finding it hard to cope with the severe breathing difficulties caused by her lung condition, chronic obstructive pulmonary disease (COPD). She’s being supported by our Willen at Home nurses to stay on her boat, as she wishes, and live as well as possible with her symptoms.
The start of an adventure
I’ve been on this boat 20 years. One of my brothers wanted to live on a narrowboat. We went on holiday from here to almost the Lake District, visiting boatyards all the way. And he got one. I thought I’d love one for myself when I retire. Anyway, he changed his mind and I said, ‘I’m not bottling out – I’m gonna buy a boat.’ And that’s exactly what I did.
I went round the whole canal system of England and Wales on my own. You can start and stop where you like. Your life’s your own. People said to me, ‘Won’t you miss your gardening?’ I said, ‘No, the whole country’s my garden and I don’t have to dig it!’
Breathing difficulties
I’ve got half a lung on one side and the other side’s got a big hole in it. They said I had cancer, so they took part of my lung out. But I hadn’t. I’ve never quite got over that. It’s got worse as the years have gone on. I mean, 81’s not old, but I feel 181 when I’m trying to do anything.
My chest has gradually got so bad that I can’t get up the stairs to leave the boat now. I can get myself to bed, but I’ve got to sit on the bed for quite a while before I can actually get my legs up and shuffle in. By then I’ve had it.
Support from Willen at Home
A few months ago, a lady from the hospital came to assess me. She phoned the Hospice on my behalf to get me some support. Then Anita from the Willen at Home team came to see me. She gave me a fan for the heat and some different medication. They’re just absolutely all very nice, lovely ladies. They come and visit you and talk to you. They’re not in a hurry to go, telling me what’s available.
I’ve got a friend who’s been doing my washing since COVID. She’s wanted me out of the boat for so long. And I said, ‘No, it’s my home. I love it.’ Now she knows I’ve got Willen coming and looking after me, she’s quite happy for me to stay. This way, I can keep my little bit of independence I’ve got and just get on with it. All I’ve got to do is phone Willen if I’m desperate and they’ll be here.
Outdoor living
Everyone that I used to know has either moved their boat on because they’re young or they’ve sold their boats and gone into flats because they’re old. I don’t want to do that. I couldn’t go back to bricks and mortar. People think my boat is claustrophobic but I’ve got 11 big windows and a door at either end of it. I’d feel claustrophobic in a flat. I know I would. I’ve been outdoors and independent all my life.
My husband left me when my two boys were six and four. A few years later I moved house and a lady at the school said I should bring the boys to Cubs. I’ve been involved in Scouts ever since, 45 years. I did all the training. It’s kept me young, because I’m still young at heart. I’d go out there and do it today. All my holidays were spent camping with the kids. It kept me and the boys together.
A lifeline for many
I don’t know what I’d do without Willen at Home. Maybe a care home or something. No idea. I wish I could live the way I want to live. I want to get out and about. I’d go round again, round the canal system, but of course I know I can’t. Sometimes I don’t see anybody all week, and that’s hard.
I’m not scared about dying. The funeral’s all booked, except the date! My boys know exactly what they’ve got to do. I’ve said no resuscitation and don’t send me to hospital or anywhere like that. I don’t want anything else done to me. I’ve had enough.
I didn’t know Willen at Home existed. I’d like it to keep on, not just for me, but for everybody out there who needs it and wants to stay at home. If I can stay here on the boat as long as possible, that’d be wonderful.
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