Didn’t Know the Half Of It

The tender story of a man’s struggle to place his youngest brother with autism into respite care the night of their mother’s passing.

Didn’t Know the Half Of It https://www.autismparentingmagazine.com/didnt-know-half-of-it/

Thursday 01.10.2015

“It’s  Mam,” John sounded panicky on his mobile. “Something’s not right.”

He rang her every night but tonight she had been talking faint and slurred then gone quiet. He could hear Codge, our younger brother with autism saying, “easy down” then it went quiet.

I’d just got home from work, weary and stressed from the new job and my first thought was, “I can do without this.” I gave myself a mental slap for being selfish.

I drove down through Belle Isle to avoid the traffic, usually 20 minutes but that evening crawling along,  phone going off in my pocket—John wondering if I’d got there yet.

At first I was annoyed as it was all probably nothing and similar things had happened before. Mam had been fine when I’d taken her shopping on Tuesday and if John had upset her for some reason, she would be deliberately strange over the phone because it drove us mad. Then I started worrying. She was prone to falling and this it could be a proper accident.

Mam was nearly 82 and was worn out looking after 52-year old Codge single-handedly for the 20 years since Dad died. She always said we never understood what a full-time job caring for someone with autism could be. ‘This could be it,’ I thought and panicked as I pulled up to Mam’s house.

I unlocked the security gate which I always thought kept her and Codge safe and rushed in, shouting “Mam, Mam!”

She wasn’t there and Mam was always there. Codge was alone in the living room just drawing with his felt tips and I expected him to ask me to draw for him like he always did—shops, cars, animals, streets and combinations of words that made no sense to me but had logic to his world. I would have probably got worked up if he had asked. “No patience with him,” Mam always said. He had books of drawings that I’d done going right back to 1981 and got agitated or upset if I got ratty and didn’t want to draw the daft things.

Codge just looked at me blank when I asked where Mam was.

She wasn’t upstairs but then I found her back in the kitchen. I’d missed her as I rushed in, camouflaged by her cardigan and skirt against the kitchen rugs she had covered the cushion floor with, an accident waiting to happen as I’d always told her. She was curled up against the Bosch washing machine, she always bought quality. I noticed it was full of Codge’s vests, shirts and underpants.

He came into the kitchen and said, “Mammy, tea.” That’s about the limit of his communication. I told him he’d have to wait.

Mam was still coherent but talking slurred and dazed. She had put herself into the recovery position and was comfortable. All I could do was ring 999, follow their instructions and keep her talking—I already knew it was a stroke.

Codge had gone back into the living room to wait patiently for his food.

John rang me and said he and Linda were on their way down from North Yorkshire so it would be ages. I rang my wife, Julie and it wouldn’t be long before she turned up. In the meantime the paramedic came followed by the ambulance, and everything dealt with efficiently and professionally—one of those busy night time scenes you drive by and wonder what the drama is.

I was glad Codge didn’t see Mam being stretchered out, half her face crumpled one side, with one tiny pupil and tears running down her cheek from the good eye.

“I promise Colin will be looked after,” I said, using his proper name. She needed to hear that. It was all she had worried about for years. I almost forgot to kiss her cheek before rushing back in.

Julie arrived just as the ambulance was pulling away. I had been starting to lose it a bit but nothing seemed to faze my wife and this brought me back down. She asked Codge what he wanted to eat. Mam had some lamb shanks out but all he wanted was chips and garden peas. He ate two or three mouthfuls and binned the rest. Mam said he often did that.

Everything seemed almost normal, the kitchen and living room TVs both on. It seemed like Mam could have just been pottering about upstairs. Home was full of her presence and the clean rosy smell which always reminded me of her.

I was desperate to get to the hospital because the paramedic had said we should prepare ourselves for the worst, but Codge had to be the priority whatever else needed doing. We found the social services phone number; Mam had them on the wall and in her kitchen drawers, all planned, clear and idiot proof.

I rang and got straight through, I was impressed as there was no annoying delay to endure. I asked them for help then had to start answering questions which was a bit disorientating. No, we couldn’t put Codge up temporarily as we needed to get to the hospital.  He must have his routine or there’s hell to pay. I kept mentioning Mam.

They rang back, ‘We’re having difficulties finding a place. Are you sure there aren’t friends or relatives who can put him up?”

He needed ‘respite,’ the temporary care that Mam used to get every few months to give her a break which was part of his routine. I explained he’d had emergency respite a couple of times anyway when Mam had fallen over and we’d had to take her to hospital.

I felt like swearing and shouting, “There isn’t anybody else!” But what was the point? It wasn’t their fault.

Codge would get agitated stopping at our house anyway as he hadn’t been for years and it would be alien to him. Worse, we have a dog and Codge has always been petrified of dogs. Or was that just an excuse to offload him onto someone else?

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A lot more waiting, more phone calls—perhaps he could stay with neighbors they would say. I almost laughed as Mam didn’t even know the neighbors’ names these days.  The social services had been offering to take Codge off Mam’s hands for years, so they could get their act together now.

I reeled off the excuses. The paramedic had told us to prepare for the worst and we needed to get to the hospital. Keeping Codge at home was the last thing he needed. Sounded brutal but if we could get him into care as soon as possible it would ease the transition. I can’t remember thinking this at the time but it was the logical thing to do. Again, it’s routine that autism needs. Mam had drilled that into me.

Three hours later they had found him the emergency respite which wasn’t bad going to say there wasn’t any when we first asked. I calmed down and thanked them and said you couldn’t have asked better of the social services. They come in for a lot of criticism but they did do the best for our Codge.

Just logistics now as Julie helped him pack his suitcase. Mam had one on permanent standby, ever prepared for the worst. There was a list taped inside telling us just exactly what he needed for a stint in respite. We took him to Heath Cross in Beeston.

One of the night staff was lovely. “We’ve got bedroom Four upstairs for you Colin, you like that.”

He did as there was a big double bed and the room was four times the size of his back at Mam’s, like an apartment. Seemed serene there and just what he needed now. Colin seemed content and unruffled. The staff told me all the new respite homes were built to the same spec so their ‘customers’ would not feel out of place. It worked for Codge, he didn’t even ask about Mam so we told him she was poorly and had gone to the hospital.

I had an old kid’s book in the car, one John had got me as a joke, The Brave little Mountie. I’d loved it when I was six and gave it to Codge thinking he might remember it. He has a memory like an elephant, photographic Mam used to say. He grabbed the book off me which is always a good sign as it shows he wants something. So I went away feeling he had a link to the past. That was a good thought as I didn’t know what the future would hold for him or us.

“Just make sure he’s looked after and get him what he wants,” Mam had asked for years; her mind constantly on the time she wouldn’t be there for him anymore.

Funny, we knew at the time as Julie and I drove away, that it was the last time he’d ever see our old house again. All three brothers had been born there in Mam and Dad’s bedroom. I wondered how he’d react, then put it out of my mind as there were other things to deal with. John rang and said he was at the hospital, crying as he told me Mam was gone.

Friday, The Next Day

I woke up feeling guilty because I was relieved Mam had gone so quickly. For years she had been tired of it all and wanted out and said so more frequently as the years flew by. I sometimes thought secretly he had become a burden to my mother but even when the subject of getting him taken into care had been tentatively broached she’d say, “He’s my baby and I’ll look after him while I drop.”

That had been done to the letter with old-fashioned working-class stubbornness. I bet she’d known her stroke was coming all day yesterday and deliberately held on, only collapsing and giving in when John rang and she knew help would come.

“I’ve never stopped since five this morning,” I got told every time I took her shopping and after rolling my eyes,  she’d counter with, “You’ll miss me when I’m gone.”

She was right. I was still in the middle of the shock and now I had a profoundly autistic bloke to get sorted and I hadn’t a clue. I guessed it would be pretty simple as there was already a framework in place but for the first time I was really involved with Codge’s care and it was daunting.

Now that he was safe in temporary respite I was tempted to offload it all to the state and get on with my life as I’d always done.  John was too far away to help and it was all down to me. It wasn’t fair but I could see Mam’s knowing look. ‘He’s your brother.’ No option really.

There was also the worry how Codge would react when told Mam wasn’t there anymore.

Getting him resettled was nothing compared to what she had done since Dad had died 20 years back. ‘Codge’s shield against the world,’ was the phrase she used and had just been focussed on this one task.

Whole days revolving around his routine—getting him ready for daycare, washing his bum when required because of his piles, cooking dinner only to see it binned half the time then worrying he might be ill. Stuck in together at the weekend with an explosion of frustration, 9:00 o’clock every Saturday night when he didn’t like her doing the Evening Post crossword. Like something went off in his head with a BOOM. Everything Mam had said over the years just kept coming back.

I’d imagined Mam would go on into her 90s just to prove she wouldn’t give up but she had given up the day before her 82nd birthday and her card was still in my car. Less than 24 hours since the world had changed and normal life was all around me but there was that odd thrum of grief that tells you something isn’t quite right.

I had the day off work. “Do what you need to do,” they said.

The house needed checking out first and that was bad. Mam and Colin’s beds were made up neat and prepared, even though they would never sleep in the rooms again.  I broke down for the first time when I realized what a lonely life Mam had led and the guilt thrashed me about her battling away by herself for donkey’s years.

But at least I could keep my promise and make sure everything was right by Codge. “Last act pays for all.” I think I read that in Lord of the Rings. I found the social worker’s number again and rang her to arrange a meeting back at Mam’s so I could get some idea what needed doing. There so much, it made my brain soften contemplating it all.

Neither John or I ever had to deal with Codge, Mam had always let us get on with our own lives. It was our shield as well as our Codge’s.  I had never even said thanks, just got grumpy even if it was hinted at. Recently, she had tried to involve us sometimes but we always cited excuses about our jobs or home lives.

After leaving Mam’s house I popped across to Codge’s day center. I knew where that was as I’d taken him over often enough on Mam’s shopping days when his transport had knocked which only got him agitated. I needed to take him some just- in-case-money and start to get my bearings on what went on as I wasn’t sure what he spent through the week and there would be charges from the council or something . Mam had complained about it often enough. I had her PIN number and bank card so could keep him supplied until I found out what was what.

At Codge’s day center they were shocked when I handed over £250. Well I didn’t know what he would need and surely that would keep him going for some time?  I asked them to avoid letting my brother see me as I didn’t want to unsettle Codge and try keep him in his normal routine while we got him sorted.

That plan didn’t work, they took me through to the back office right past the computer room where Codge was sitting at a PC. His eyes widened like he was scared. You could tell he knew something wasn’t right, I never just turned up at his center.

I sidled away saying, “Hi Codge.”

He was on the internet and they told me he liked YouTube, watching the intros to old kids’ TV shows and old 60s and 70s music.

Codge was into music from when we had all watched Top of the Pops together and our John had let him go on his record player which he’d never let me do. Codge had a big collection of old vinyl singles Mam and Dad had got him from record fairs and flea markets in the 80s and he always got a new record player at Christmas. Every Saturday afternoon at home, Codge went upstairs and listened to his records – zoned out with the headphones on, rapt and serene.

I was glad he had that link to our past but didn’t realize the hassle it would cost me later on.

I had a quick chat with the staff mostly about how lovely they thought Mam had been. Codge kept coming to the office door and looking more and more agitated so I fled before the fireworks started. I was leaving them to it but just felt I’d had enough with the night before.

Back at mam’s I busied myself chucking old food I found in the fridge and cupboards while I waited for the social services. There were some moldy old buns that had dropped down the back and that made me realize again how old Mam had got, as a crumb or a speck of dust had not been allowed in our house in her glory days. That made me cry again.

Soon after the social worker came, she was lovely and offered all kind of advice and help.

“Don’t worry, you’ve enough to worry about at the moment, we’ll make sure Colin is all right.”

I took that at face value as I was assured all relevant departments of the Council and Departments of Works & Pensions would be contacted.  There was so much to sort out about Mam so I wasn’t to worry about Codge for now. Mam would probably have walloped me for that as HE had always had come first. I wasn’t really listening as all the departments I would have to deal with were reeled off and that too would bite me on the backside later.

I drove off into Leeds center, beating myself up as memories came back of resenting Codge for tying down and limiting Mam’s life. Not that she had complained much, only when she was sick of the hard work and repetition as anybody normal person would be.

“If only you’d understand,” She’d said, meaning John and me.

“You’re getting too old, get him put into…..” We’d never finish our sentence.

“No.” She was unyielding like a British square at Waterloo.

I went off to the One-Stop-Shop at old Leeds Grammar School to register her death. I had to make an appointment so wandered ’round town. Codge wasn’t much on my mind now as I was thinking about funerals, house sales and our John living up near Whitby, the lucky devil. It would be down to me to do the horse work so in the couple of hours waiting, I went and bought a book on Hieronymus Bosch and a pair of Levis. It was Friday and the weekend so let the stress come later.

This article was featured in Issue 80 – Conquering Challenges With ASD


    Tony Rymer

    Tony Rymer is a print technical manager from Leeds, UK, aged 57. His piece tells the story of his mother, Marion-Rose (Mam), who died the night before her 82nd birthday and the struggle to place his youngest brother Colin (Codge) with autism into care on the night of her passing. She’d looked after him single-handedly since their Dad died 20 years prior. This is a tribute to Mam as when she got older, she realized and worried that one day she would not be there for Colin, who had always depended on her. She had everything organized and prepared just in case. Tony wrote this as a positive tale for other parents of children with autism who also worry about the futures for their loved ones. Out of their sadness came hope and help.