Mum’s last days

Whichever way you look at it, my mother, who reached her 100th birthday last September, is now living her last days (possibly years) on Earth. Until March this year she was in sheltered housing, a misnomer if ever there was one as there is virtually no support whatsoever. There is a warden or Scheme Manager, but she’s now only supposed to be there 9-5 Monday to Friday, not weekends or Bank Holidays. In actual fact she rarely does a full week due to covering other schemes or because of annual leave. Even when she is on duty, if the alarms are activated by my mother because she can’t get up from her armchair, for instance, the warden is not allowed to lift her, similarly if she has a fall. So an ambulance is called to take her to hospital.

If the alarm is activated when the Scheme Manager is not on site it is monitored in Chester, many miles away from Battersea in London. So they would ring me, sometimes after midnight. I got to unplugging my landlines and turning my mobile on to silent so I could guarantee a good night’s sleep. Sometimes, of course, I would not be home when they rung but maybe miles away. So if I couldn’t go and check up on my mother, they’d just call an ambulance. How is that sheltered housing? How is that any different to someone in their own home ringing an ambulance, or pressing a neck alarm to call an ambulance? Yet when she moved in there in 2001 there was a warden and an assistant both living on site. In council sheltered housing (my mother’s was a housing association) there are people in the area who respond when alarms are activated, so they’ll be with the resident within half an hour or so.

My mother has had increasing mobility issues, and had difficulty getting up from armchairs and her wheelchair without assistance. Arthritis in her left shoulder due to an earlier stumble and refusal to wear a sling after the injury made matters worse, as she couldn’t put any pressure on that arm to help herself up. So the warden and her carer rang for an ambulance and sent her to hospital. She hadn’t had a fall, she just couldn’t get up without assistance, and had difficulty walking.

The hospital did tests and found nothing, except a urinary infection which cleared up within days with antibiotics. She was transferred to a Rehabilitation Unit, and was making slow but good progress with regular physiotherapy, but kept wanting to discharge herself. The Occupational Therapist gave her a ‘risky discharge’ but put in extra equipment in her flat, including a commode to be put by her bed at night, and a rail to help her get into and out of bed. Also a table was moved from the center of the living room to give her more space to move. My mother came home and demanded the table be put back in the middle of the room, refused to use the commode (and the carer piled clothes on top of it so it couldn’t be used anyway), and swore at the rail at the head of the bed saying: ‘Take this bloody thing away!’

A week after returning home she got up to get a cup of tea and a sandwich, or bread and fish paste, from the kitchen, tripped over something and fell. She activated the alarm, and paramedics were called. They checked her over, but she refused to go to hospital. Later that day she walked with her trolley from the bedroom to the living-room where a photographer was taking some photos for a magazine article. However her foot had swelled up and I couldn’t get her shoe on. Later that day she couldn’t get up from her armchair, and so when the carer came and couldn’t help her up either, we called an ambulance. She ended up in another hospital for 5 weeks. This time she had a hairline fracture in her little toe, but this healed without treatment in days and the swelling went down. She was getting regular physiotherapy in hospital, but couldn’t return home because someone had made allegations and an investigation was ongoing. I wasn’t told the details, but suspect a former carer with whom I’d had an argument because she was telling lies to me and my mother.

The hospital needed the bed, so she was finally discharged to a nursing home on an interim basis. Before her last hospitalization there was talk of her going to an extra care facility, where she’d have her own flat, but there would be carers on site 24/7. This sounded ideal, but she couldn’t go there straight from hospital because it would mean moving all her furniture, so a permanent move, and this wasn’t allowed due to the investigation. She moved into the nursing home, but wasn’t happy with it at all, although she has a big room, the staff are very friendly and helpful, and there’s a nice garden. It is also very near me and near her Luncheon Club and our favorite little park and place by the River Thames.

Eventually we were told the investigation had been dropped, evidently they were satisfied it was based on unfounded allegations, and yesterday my mother was given the opportunity to view a flat in the extra care facility. She took an instant dislike to it because the entrance to the facility was very narrow, the lift was very small (just took her wheelchair), and the show flat didn’t impress her either. The bedroom was tiny, though the living-room was a fair size. There was a small kitchen, a wet room with a sit-down shower and toilet, and two storage cupboards. I thought it was ideal, but mum didn’t like it at all.

So she now has to spend the rest of her days in the nursing home. There’s no question of her going back to her old flat as whenever she can’t get up they’ll just send her back to hospital. In the nursing home they put residents in wheelchairs all day and there is no physiotherapy (she would have got this in the extra care facility to get her mobile again).  The nursing home put incontinence pads on residents, and they get all their meals there. My mother won’t eat them when I’m present, but I’m told she eats when I’m not there, so I make myself scarce at mealtimes.

I visit most days and take her out when it’s not raining. We go to the Lunch Club once or twice a week and sometimes have lunch in a café or pub. However due to her refusing the extra care facility and medical problems (the hospital detected a heart murmur, and after 80 or more years heavy smoking her lungs are not in good condition) it is likely she will deteriorate as she no longer walks about and needs assistance getting up from her chair, getting to bed, washing/dressing, etc.

I have, of course, had to cancel holidays to a hotel in the Isle of Wight where we went in recent years. I couldn’t give her the care she needs, it wouldn’t be appropriate for a son anyway, and she is incontinent either because of her immobility or because of the pills they give her in the nursing home to make her regular. No hotel would tolerate that, and no way could she manage to get to the toilet in the night by herself.

I now realize her options are strictly limited. I can really only take her around the local parks, etc. Then back to the nursing home where they will change her pads. I tried to get her to use a disabled toilet the other day while out (very few around in London) but she couldn’t manage it, or was afraid to try without two people to assist her.

It is not all gloom and doom. There is a lovely garden in the nursing home, and although she can’t smoke inside they will, if she asks them, take her out in the garden and give her a cigaret (the nurses hold a packet or two for her). My brother bought her an e-cigaret, though she hasn’t tried it yet. Other ones I bought her disappeared from her room, as did some money and other little things. If she’d accepted the extra care facility she’d have had her own front door, but she’s now made her decision and her home will be dispersed. A few things can go to her room in the nursing home, the rest will have to come to my place or be cleared away.

it is sad she’s lost her home, but I’ve done everything I can, and in the final instance it was her choice not to take the flat in the extra care facility. It might be best after all, as she has people around her in the nursing home, and she might get lonely in a strange flat especially if she felt it was claustrophobic, despite my visiting almost every day, cooking her main meal, taking her out, and carers popping in and out.

We must make the best of it, and when she does transit to Spirit she’ll be with her siblings and her parents, and she’ll be free from all her disabilities. Most people choose to go back to their prime. I guess she’ll even be allowed her fags over there until she realizes she really doesn’t need them. Meanwhile I will visit most days, not every day as I need a break and she needs to get used to the environment. Days when she’s very grumpy I just have to leave and not visit the next day. I plan at the moment to visit and take her out (weather permitting) most days. Perhaps have two or three days a week when I don’t visit.

Thinking of myself and my own future needs, I live in a large council flat which I shared with my partner till he transited to Spirit 24 years ago next September. There are 14 stairs up to my flat, one reason mum couldn’t come to live here as she couldn’t manage the stairs nor could I get her wheelchair up and down with its motor on, and I couldn’t risk her smoking in my flat and causing a fire (the sheltered accommodation did have alarms linked to the fire station, so if they were set off firemen were there within minutes. Apparently there’s no truth in the rumor she set the smoke alarms off because she liked to see men in uniform arrive!)

Maybe, if I start to get more decepit (I’m 70 now but still fairly fit apart from a few aches and pains) I’ll book myself into the extra care facility. I won’t be able to take all the stuff I’ve accumulated over the years, but I find I don’t use most of it anyway. Just what I need.

Mum may have weeks, months or years ahead of her, who knows? However although she still pines for a home of her own she has made her choice – she was offered one and rejected it. There really is nothing else available which would be suitable in the area, so it means she’ll have to get used to the nursing home which, as I say, has friendly staff, a lovely garden, she is well looked after by nurses and carers, and she has a very large room with some of her things around her. I think she’s been moved around so much in the past few months she doesn’t want to move to another strange environment. She would like to return to her old home, but this just isn’t practical as she’d be back in hospital within hours due to her immobility and the lack of any care facility there. In fact I think they have changed the name to ‘independent living’.  It was sheltered housing when she moved in 14 years ago.