Jules Wall is waiting for me in a quiet corner of a pleasant bar and restaurant in North Dublin. She looks strikingly like her two sisters, Pier and Sharon, who are also there; the trio all have the same blond hair, distinctive features, and big smiles. There's the remains of a bottle of white wine on the table, and the waitress is just arriving with the dessert menu.
If you were a customer in this crowded bistro at another table, you’d look across and assume you were seeing three women on a routine night out, each of them with a glass of white wine in front of them. You’d most likely note the family resemblance.
At some stage, you’d probably notice one of the three is in a wheelchair, but otherwise, nothing would strike you as unusual.
I had a great life. I had plans to enjoy my lovely home in Howth, which I had worked so hard for
Jules Wall, the sister in the wheelchair, is smartly dressed, with a leopard-skin scarf, black trousers and a grey sweater. She’s wearing a necklace of large silver beads, and her oversized, eye-catching watch is pink, with glittering diamantés. Despite what the scene looks like to the other customers, this is not a routine night out for Jules. Although only 61, Jules has been a resident in a nursing home since July last year; a nursing home she is unlikely ever to be able to leave.
Jules Wall took early retirement from her job as a care worker in the HSE, in June 2015; the month of her 60th birthday.
“I had all sorts of plans for my retirement,” she says. “I wanted to read and walk and pick my mum up in my car on Saturdays and take her shopping to Drogheda. We always did that on a Saturday, and we’d shop till we dropped, and have a great time, laughing and joking. I was very outgoing. I had a great life. I had plans to enjoy my lovely home in Howth, which I had worked so hard for.”
In November 2015, Jules was at home alone, in her apartment. “The next minute just out of the blue, I could feel a terrible headache coming on, and I rang my mother, and I was crying, saying, ‘Mum, I have terrible headache in the left side of my head.’ We sometimes have headaches in our family. Then I lost my balance, not just my balance but my co-ordination. I was banging into the mirror in the kitchen, and I thought, ‘Oh my God, what’s wrong with me’?
“Next thing, my phone rings, and it was my sister Sharon. My speech must have started to drop a little bit then, because she said, ‘Are you drunk?’ And I said, ‘I don’t drink during the day.’ It was the afternoon. I decided I’d go in and lie down, because I still felt funny. My apartment is on the ground floor, and I always leave the window open for air, so I lay on the bed, I remember that.”
What was going through my mind was: will I ever get out of this hospital?
The next thing that Jules remembers is that she was on the side of her bed, unable to feel her legs. She screamed for help, and a neighbour heard her through the open window and went at once to alert Sharon Wall (53), who lives in the same apartment block.
Recovered consciousness
Jules recovered consciousness in Beaumont. “I woke up to a doctor telling me this was such a sad thing to happen to such a young, active woman.”
The “this” the doctor was referring to was a stroke Jules had had down her right side. “I didn’t even know what a stroke was, or what it meant. Nothing. It’s not in the family; there’s no history.
Jules remained in hospital from the end of November 2015 to January 2016. She regained the use of her legs, and was finally discharged to go home, with the assistance of a homecare plan to help her.
“We all had such great excitement that she had overcome her stroke,” Pier says. “We got her back to her lovely home, and she was managing to walk.”
However, 10 days later, Jules had a second, more severe stroke, also down her right side. Sharon was with her at the time, having tea in the apartment.
If I could afford carers, I'd be home like a shot
“Jules told me she had lost the power in her right leg, and couldn’t get up. It was about four in the afternoon. I called the ambulance and told them she was only out of hospital about a week, and told them it looked like she was having another stroke. They put her in a wheelchair and back into the ambulance, and that night in Beaumont, they said it was a second stroke. That was the end of January 2016, and Jules never went home again after that.”
Jules remained in Beaumont until July, and had a number of mini-strokes after that.
What was going through her head at that time?
“Horrificness,” she answers. “What was going through my mind was: will I ever get out of this hospital? I missed my home. I missed my life. I wanted my life back.”
"Jules was always so glamorous," Pier (60) says. "She loved her home. If she was buying stuff it was always for her home. She loved her car. She loved taking our mother out shopping in the car. They'd go to Skerries, Dún Laoghaire, Drogheda. She often took care of two dogs for a relative that she loved, Rocky and Marley. For us, there was so much shock and disbelief that one day she was out driving her car and doing the shopping, and the next, she was lying in a bed in Beaumont, unable to move."
Pier says that they knew things “were a little worse” for Jules after the second stroke, but they were all unprepared for the news from the medical team. In March of last year, they were told as a family that Jules was paralysed down her right side, and would never walk again. “We were devastated and crying our eyes out. I still find it unbelievable.”
The doctors advised seeking a nursing home, because regular, constant care, and use of hoists, was now going to be part of Jules’s future care plan, due to her physical disabilities. Jules wanted to remain at home in her own place, supported by a care team.
However, homecare is not covered by the State Fair Deal scheme, which was set up to offer financial support for people who need long-term residential care services, even if the cost of homecare would be cheaper. The option is, of course, open for Jules to pay privately for homecare, but that is unaffordable. “If I could afford carers, I’d be home like a shot,” she says.
‘Trapped’
After Jules’s second stroke, she was paralysed on her right side. Her eyesight in her right eye was affected, and she is incontinent. “She has no independence at all,” says Sharon. “The eye on the side of the stroke is damaged, so it’s hard for her to read, or to concentrate on a movie, and she loved to do both those things. But what Jules does have, that a lot of people aren’t as lucky to have, is that she has her speech and her memory. But besides that, she feels trapped in her own body, because she can remember all the things she used to do, but she can’t physically do them any more. Whatever she needs, she has to ring the bell and get help to do whatever she needs to do.”
I'm in a nursing home with old people, and there's no life in it
It was Pier and Sharon who had the dreadful task of seeking a nursing home for their sister. If they had ever had a vague thought about the necessity for this task at some time in the future, it was in relation to their mother, not their sibling.
“We both took time off work and made appointments to visit several nursing homes and after four we felt we had been hit by a bus,” Pier says. “Everyone else there, apart from the staff, was so old. All the directors of the nursing homes were so shocked when we told them Jules’s age, as none of them had ever had any residents that young. It was obvious Jules was going to be the odd one out, wherever she went.”
Her sisters chose the nursing home for her, based on its proximity to them, and other family members.
When Jules went to see the nursing home she is now in, she was impressed by the building itself. “It’s modern, and it smelt of lovely light wood and there were lovely flowers. I was impressed, even though I didn’t want to be there, and my home is only up the road.”
At this point of the interview, Jules is crying. “I’m in a nursing home with old people, and there’s no life in it. I’m the youngest in the whole nursing home. I was never used to that in my life. I nearly died of shock when I was put in there. I nearly died.”
The fact is, it isn’t the nursing home at all that Jules is distressed about; it’s the fact that there is nowhere else for her to go in Ireland for residential assisted care aged 61, other than to a nursing home.
“I never even thought down the line that a nursing home was going to come for me. I could never see myself in a nursing home. I thought they were only for old people. I never saw myself being there at my age. They are all older people there that I have nothing in common with. I’m the youngest person there, which kills me. I really miss the company of younger people. I’m not being disrespectful towards the old, but I am only 61 and have nothing in common with the other people there.
Is this nursing home going to be the end of the road for her in her life? Is that where she is going to die?
“I had been full of life, bouncing around the place. I loved life. I loved driving. I loved talking to all kinds of people. I loved my home. Cooking for myself, and doing all those things people do. Now I am sitting with people for dinner who are 80 and 90 and there is even someone who is, I think, 100. Some of them can’t even hear. Some have dementia.”
Although Jules finds it hard to remember some exact dates and details, due to her stroke, and now and then turns to her sisters during the interview for them to fill in a few gaps, her disabilities are physical, not mental.
For Jules’s sisters, life has changed too. “Nothing so far in my life has changed so dramatically as what’s happened to Jules,” Sharon says. “I find it so hard to accept. It’s only recently I have stopped bursting out crying about it; to see her so disabled and so dependent. Now, instead of going out socialising with my sister, I’m going to visit her in a nursing home.
“At this stage of her life, we might have thought it’s our mother we’d be looking after. But she still lives on her own and is in great health. If we had to look after the two of them, it would be a lot to bear. I was able to give my mother more time before this happened. I have less time to spend with my mother now, which is upsetting and stressful for all of us. Our mother finds it very hard, and is a bit in denial about Jules. She will say things like. ‘Try and move your leg. Try.’ She has not really come to terms with the reality of it yet, and the fact that instead of going on a lovely day out with Jules, now she is going to a nursing home to visit her daughter.”
“From when Jules was 16, she was totally independent, and now she has no control over anything,” says Pier. “Jules used to love talking about hair and make-up and fashion and now you don’t want to talk about that with her, because you’d feel kind of mean; because she can’t go out any more unless she’s with us. The three of us would always have got together for girly nights, and a lot of the times we’d meet in Jules’s apartment. Now, instead of having a girly time and talking about fashion, we visit her in the nursing home, and we talk about other patients, and other people who have disabilities. They are not the conversations I ever thought I’d be having with my sister.”
Homecare policy
The Wall sisters don’t know why the Government Fair Deal system cannot be extended to support homecare. “She has her own apartment, on the ground floor. Everything in her home has been left exactly as it was,” Sharon says. “I was prepared to go half-time in my job and work part-time, so I could help out. Even if half the Fair Deal money could go towards home-carers we could manage somehow and it would be so much better for Jules and her quality of life. But we were told its not possible. Is this nursing home going to be the end of the road for her in her life? Is that where she is going to die?”
There should be a nursing-home type facility somewhere in Ireland for younger people like me
Jules does avail of opportunities in the nursing home to get her hair done and have a massage when people offering the service visit. She praises her sisters for being her lifelines to the outside world. “They are two great sisters, two fabulous sisters,” she says. The things that keep her going are visits from family, daily phone calls with her mother, and prayer. “And of course I do my best to engage with the other people in the nursing home.”
I ask Jules if she ever feels down. “Chronically,” she admits. “I cry almost every night, because I miss my life. Half my life has been taken away from me, and I miss my old life terribly. It gets me down terribly. But I go to church every morning, and that helps. I pray every morning that God will help me.”
Jules prays for different things. Sometimes, she prays that God will let her walk again; something the doctors have told her will not happen. “Sometimes, I pray that I won’t wake up, that I’ll have strokes in my sleep and won’t wake up again. I think if you didn’t have sisters or family or someone to talk to in this situation, if you had nobody, and were on your own, you wouldn’t survive. There would be nobody to talk to. I imagine I’d be suicidal if I didn’t have my sisters. I’d want someone to take my life for me, or I’d want to go to Switzerland and have someone take my own life. There are times I think of asking someone to assist me, to take my own life. That crosses my mind. It does. Of just ending everything and getting out of this life.”
What Jules wants, and what her family want for her – to live in her own home, with supported care – is not possible under the existing system. They wonder if there are other people like Jules in Ireland, who are living in nursing homes, decades younger than other residents, and why there can’t be one communal facility for this cohort of people.
“There should be a nursing-home type facility somewhere in Ireland for younger people like me,” Jules says. “That would make things better. We would have more in common with each other. We could do a little class together maybe, and it would make a huge difference. I might have a friend my own age. Someone to talk to, a companion whom I could talk to about young stuff. Even if there was a place like that I could go to for a break, for respite. That would make a difference. It would make all the difference to my quality of life.”
If you have a story about a relative who is considerably younger than other residents in a nursing home, or about nursing home care in general, please email rboland@irishtimes.com
