Why do I carry on supporting my Mum in her own home?
I was having a conversation with Almaz, Mum’s carer the other day. It’s not an easy job for either of us, and Mum has recently had a urinary tract infection (UTI), which means that at times she can barely take her weight at all, and she is quite confused and very sleepy. She has had a couple of falls and has injured her right wrist and her ribs. They are possibly fractures, but according to Mum’s GP they are the sort of fractures that are untreatable, and the probability is that if I take her to hospital for X-ray they would keep her in. As we’ve learned, hospitals are not the best place for the elderly. Infections, confusion with medication by medical professionals, and a sort of benign neglect seems the order of the day. I know Mum would be at no risk of falling, which she is at home, but she would be at certain risk of being bed-bound. Every time she has gone into hospital it’s been noticeable that Mum comes out less able than when she went in. There is some nominal physiotherapy but resources are so stretched that it’s ineffective. Muscle atrophy is a real and present and life-threatening risk.
Keeping Mum safe from falling in her own home, which is where she wants to be, is very difficult. It’s difficult because Mum has vertigo sometimes, when she just falls with little warning. She describes this as “my brain goes sideways”. Sometimes she just overreaches, trying to pick something up off the floor, or mis-judges where the chair is. When she has a UTI, she can just get weak and confused and fall. She might go for months without falling and then fall three times in a week.
Ideally Mum would be living with me, but she doesn’t want to.
It would not be too unreasonable for me to insist that Mum goes to live in a nursing home and hope that she would get used to it and would not be too unhappy. But I don’t want to.
I have visited lots of nursing homes over the last two or three years, most recently with the idea of convalescence which I thought Mum needed, weakened as she was after her last stay in hospital. I thought there would be homes out there, specifically dedicated to getting elderly people back on their feet, with physiotherapy a priority. In fact there is nothing which matches what has turned out to be a Utopian dream: my best bet turned out to be expensive (over 1,500 quid a week), down at heel, smelling of wee, and inhabited by the drooling. The other option, and there were just two within a ten mile radius of me, (and I live in a heavily populated part of the world with good infrastructure), refused to have her because of her schizophrenia. As her symptoms are limited to paranoia about a woman visiting her own home, it would not have affected them, but they would not be persuaded. As I’ve blogged earlier, the NHS option, Tolworth Rehabilitation Hospital, isn’t worthy of the name for people like my Mum, although at least it’s clean.
In the previous year I had been looking for somewhere suitable to take my Dad when he was dying and had exceeded his stay at the Princess Alice Hospice. The best, newest nursing home in the area is Brook House: it’s got awards. I had a conversation with the family Doctor the other day about Brook House.
“Don’t you think it’s time now to persuade your mother to go into a home? What about the one that your Dad was in?”
“Brook House, Doctor, is haunted by the demented. They float up and down the corridors, They were always in Dad’s room if you remember. They’d drive Mum mad. She’d hate it.”
“Your Dad took it all in very good part!”
“Yes but he knew he didn’t have very long left. He was going to die. In fact he made his mind up after a few days there that he was going to die as soon as he could. And he did. Not that the staff weren’t nice, most of them were very good to him. But if he had stayed in the hospice he would have lived a bit longer. Anyway it would be depressing for Mum. She would hate it. So as long as we can Doctor, we will keep her at home.”.
Not long after my Dad died my sister suggested that we book Mum into Brook House for some respite for me, as she wasn’t going to help out. She proposed putting Mum into one of the quiet rooms on the second floor. Maybe she didn’t know that the quiet rooms are put aside mainly for the dying. They didn’t have any available for Dad until his second week, and he said he’d rather die surrounded by the life that there was than nothing at all.
Maybe she thinks Mum is anti-social, and wouldn’t bother about being in a room on her own: Mum won’t, for instance, go to social clubs for the elderly. Mum’s problem is not that she is anti-social, but that she is quite shy, and part of that is on account of her accent. She comes from Southern Ireland, and her accent is strong still after being here since the mid-fifties, and people do have a problem understanding her. But she is very interested in other people and observant. She likes to talk to people who make the effort to understand her. She’s interested in politics, was in the Remain camp, couldn’t believe Brexit, or the current Government shenanigans with Gove, Boris etc. Putting her in a room on her own in the home where her husband had just died in a quiet area where people are looked after while they die was not a goer.
Anyway, I began this entry about a chat with Almaz. She said “I understand. The thing about your Mum is that she never gives up. Even when she falls, and I help her to get up, she’s laughing, she’s positive. She really tries to be independent. It seems impossible, but she keeps going. Her attitude makes me want to help her.”
Mum really does not want to leave her home of 36 years. She loves her home, and it’s all equipped for her to live downstairs. She now has carers in to help, which takes some of the load off me. We just about keep things going and try to keep her on her feet.
Mum has been through a hell of a lot in her life. Probably more than you. Certainly more than me or my sister. Poverty, hard work, emigration, cruelty, extreme mental illness, frequent falls, pain. That’s an amazing amount of experience, although it took just one sentence to say it. I respect all that. And she is still laughing at the age of 82 and she still wants to keep going. As long as I can, I will support her.
Good on your Mum. I so hope that you can help her stay in her own home. Hope you’re getting some respite though. I’m so enjoying reading your blog. So much resonates with the last years of my parent’s lives.