“Jottings from a wheel chair.”
Ida is a chatty and outspoken woman who is not shy to ask for help. Ida has been in a wheelchair for the last 21 years and needs the help of others to get around. She has had a lot of tests in her life, but nobody has ever been able to find out what’s wrong. Ida was diagnosed with kidney trouble a couple of years ago. Because of her age, having dialysis would be too intrusive and not add much value to her life. Her husband was already in a care home with dementia, and because she couldn’t live at home by herself anymore, she chose to live with him. “One of my daughters lives in Lewisham, and the other one in Wales, so it doesn’t make sense to go to one or another. I’d be too far apart from the others, one has to come up 400 miles to see me. It made sense to move in with Daddy.” Not being able to walk is the only thing that keeps her in a care home, she says.
”In the beginning it was very difficult; a lot of them here can’t speak. They’re just dozing off. It was all new to me. I’m not the sort of person to go in a home. I’m quite articulate. I miss ordinary conversations. Talking about the opera, about anything really.”
Stuck in a place where you don’t belong
Ida has been living in the care home with her husband Mark for the past year. This has been very hard on her. She has trouble with the rigid care home routine, which doesn’t suit her routine at all. She’s put in her room to get ready for bed at 6pm, but she often doesn’t fall asleep until 11pm or 12am. She also feels out of place with the other residents, most of whom suffer from dementia and aren’t great for conversation.
“One friend I’ve been friends with for 82 years. We’re more than sisters. I never see her now. But every night we have a good talk.” Iris gets tears in her eyes when she talks about all the places her friend visits. “She told me she went out to the Isle of Wight. This is hard to hear… I just sit here, in my room.”
”I don’t mind going out, but I don’t want to go in an ambulance and what not, and then be pushed along the sea front. From the other’s point of view it’s not necessary to go out anyway, they’ll all be asleep the whole time.”
“You get institutionalised here. At 11am comes in the tea and biscuits. The telly is on all the time. At 1pm we have lunch… During tea I have a table on my own. Of course I do, they (the other residents) eat with their hands! The staff know... they call me ‘the lady’. They’re kind enough...After my food I’ll go up and visit Mark. He has to be fed pureed food. At teatime it’s the only time they come by. They never seem to be lacking biscuits. Other than that, no one comes to see him. He’s just lying there, all the time. The TV will be on. I know what he likes. If I had legs, I’d run there and change the channel.”
Connections that mean something
The care home is a quiet place, with residents sitting silently downstairs, quite a few with their eyes closed. Ida lives for her trip to St. Christopher’s Hospice on Tuesdays. The environment is much more lively and stimulating, and Ida participates in an art therapy class. The lady who runs the art class has become very important to Ida, a confidant.
“Through the church, Will came to see me at the care home. We obviously had a heart to heart and he noticed I was especially unhappy. My husband doesn’t speak. Will could see how this all was getting me down. He suggested I came to St. Christopher’s once a week. I was a bit worried how that would go with my sanitary pad, but he said they have nurses that could help me with that. It’s been a Godsend, a real lifesaver for me. It’s something to look forward to. I speak and actually get an answer here!”
“The first day I was drawing a tree, and soon after that I opened my heart to her. She knows all my details. She knows everything, all the difficulties I’m having...We clicked. The more I saw her, the more I opened up to her. Once she recorded some of the poems I wrote. Oh I don’t know, they’re about anything really. I call them ‘jottings from a wheelchair’. The home is full of my drawings. 3 poems of mine are up as well, and some of the pictures I made. The art classes should’ve finished, but I think they’re taking pity on me. I have this brain I can still use, and no one around here to use it with. I’m not sure when the classes will go on until but I hope they won’t stop.”
“They put me in a group here in the lunchroom. It’s so surprising, after a few times they recognised me! They’ll say ‘hey Ida!’ - I belong to that group now. I also play scrabble here! I used to play it a lot, but there’s no one at the care home I can play with. Here I found someone to play with - can’t remember what he’s called now, me and names - he is ever so pleased. When I come he’s got it all laid out and ready. We both missed our scrabble. He plays it differently, so I have to get used to that. I didn’t know there were different ways of playing it! But I know we both really look forward to it every week.”
No time to care
The carers at the home are lovely, but they’re understaffed and there is no time for anything other than tending to the most essential basic needs. The residents sometimes don’t even make it downstairs, and stay isolated in their room all day.
”Often they won’t know what I’m saying. When I ask you to get that black bag, you’ll do it right away right? I have to tell them twice… I can only have a chat with them when they’re busy with me, like when I’m being washed. ‘Hot day, cold day’, that’s it.”
“I’m there on my own. This home is always understaffed. Some days we don’t even go downstairs, there won’t be enough staff to get us down. You never know if you’re going downstairs or not, if they have enough people to take us out of our room. There are only 2 night staff. They have nothing to do with the day staff. They don’t care, they’re just there to do practical things, like changing pads.”
Being a burden
Ida doesn’t want to talk much about her family. Some things have gone “pear shaped”, and she doesn’t want to elaborate on it. She accepts the situation as it is, and feels it’s too late to change it. She would rather keep out of her children’s lives, as they are still young and should be able to enjoy it without having to worry about her.
”I don’t see my daughters a lot. Every couple of months maybe? I’m bad with times… I talk to the youngest about 2-3 times a week on the phone. She’ll pass things onto Maggie, the oldest. I don’t talk to her due to many reasons I don’t want to get into. They don’t see much of each other either. I have grandchildren but I never see them. I don’t think anyone will come by this Easter.”
“My mother lived with me, but my children were very young so they didn’t mind. And we didn’t have money to do anything, so there wasn’t much of a social life. We would just go to church. She lived until 83. My father died at 70 of a heart attack. He didn’t need anyone to care for him.”
”I think it’s cruel to let people live until such an old age. There is nothing good about it. It was better before when we didn’t get older than 70 due to all the smoking and drinking. If you turn 90, your children would still have to visit you and care for you well into their 70s! I think they should be allowed to live their own lives. I don’t have a lot of people that I see and I’m ok with that. I don’t want to be a burden on anyone.”
Ready to leave a world that’s not worth living in
Ida feels that the world around her has changed beyond recognition. She says she has been ready to die for some time.
“I was diagnosed with kidney trouble. They took me and my two daughters in a side room. There was also a nurse and a social worker and I don’t know who else – there was a whole group. We talked about how I might die. I said ‘I’m happy to talk about it! I’m prepared.’ In fact, I wanted to go. They then send you to a conservation clinic. They see you through to your death. You don’t see a doctor anymore, just a nurse. They take your blood, you have a number which goes down each time. It was 33, now it’s 11. The lower the number, the worse you’re doing. The doctor said, ‘If you were my grandma, I wouldn’t have dialysis’. I thought, ‘I’m going, I should go now.’ I’m quite prepared. But I got better. When Dad was in the hospital, they said he should go back home, in other words, back home to die. But he survived. We both did.”
“The church comes to the home. It used to be important for me. I was a member of the Baptist church before the war. It has always been there, it will never go away. But I’ve been a bit disillusioned lately. There’s no way, with all that’s going on in the world. Look at what’s happening now in Syria. I do watch the news on TV, I’m interested in understanding what’s going on in the world.”
“I don’t recognise the world anymore. I’m ready to leave it. I’m not upset about it, but I really feel sorry for the younger ones, for the state the world is in. You hear about children growing up without a father, it could be uncle Bill or uncle Bob. And families who are all on benefits, and still they’re having children! The world is getting overcrowded. Everybody is so busy, there is so much pressure for people. I enjoy looking at the grass and the trees, I can do that for hours. Nobody stops and looks around anymore.”