How I Had To Change As A Mum When My Partner Became Paralysed

Mum-of-two Caroline McCullough had her world turned upside down last spring when her partner Jaime was paralysed from the chest down in a cycling accident - she explains how life has changed for her and her family.

Caroline McCullough

by As told to Jo Hoare |

Active family of four Jaime, Caroline, Florence and Seth enjoyed an adventurous life together, Caroline a head of support services at a hospice and Jaime an Apple store manager shared childcare 50/50, splitting their working weeks across weekends to cut down on childcare costs. With Jaime now suffering a level C6 SCI (spinal cord injury) meaning he is paralysed from the chest down and can move his arms but has hardly any movement in his fingers and currently no bowel or bladder control, Caroline has had to change her entire life as both a partner and a mum.

Her friends are fundraising to make their family home accessible for Jaime and ensure that he can live as full a life as possible: https://www.justgiving.com/crowdfunding/jaimesjourney

The Accident - Saturday 25th April 2020

Saturday was a work day for Jaime and he was up early to fit in a bike ride. I always hated Jaime riding alone but it was lockdown so I couldn’t moan. I was in the bedroom with Florence when an unknown number popped up on my phone. A very gentle man told me his name was Martin and he was with Jaime on Ilkley Moor. He said he had fallen off his bike and although it was probably nothing much to worry about they had called for an ambulance just to be on the safe side, he said that I should stay put and he would keep me updated. My heart sank but with my daughter staring at me I had to brush off the worry from my face and keep upbeat. It came as no surprise when a call came a few minutes later telling me I ought to come.

Martin was waiting for us at the top of the hilI, I phoned him and asked if there was anything he wanted to say to me now on the phone rather than in front of the children. He replied “Yes. He says he can’t feel his legs”

My first sight of Jaime was him laying face down in the ground surrounded by members of Upper Wharfdale Fell Rescue and paramedics. As I approached Jaime I could hear him groaning a really low agonising sound and he was struggling to breathe. We all called out just wanting to let him know we loved him and things were going to be OK. I’ve never felt more useless and scared – my acting skills were gone as the shock started to set in.

The paramedics told me that unfortunately because of Covid I couldn’t go to the hospital. I should stay at home and someone would call me. It was an agonising wait and I was in pieces It was about 3pm when I finally heard from the doctor. Jaime was in intensive care. He had broken many bones down the right side of face and they would have to operate within the next 24 hours. It also looked as though he had sustained some sort of damage to his spinal cord and I needed to get my head around the fact that it was unlikely he would ever walk again. And no I still couldn’t visit. Someone would call me the next day with an update. The conversation was brutal I still can’t quite fathom why it had to be so harsh – many of the calls with doctors over the days that followed were of a similar vein. Rarely did the promised daily update come without me having to beg over the phone for someone to get in contact.

The hospital experience

Following the accident Jaime spent over seven months in hospital, two weeks in intensive care, then five weeks on a ward in Leeds General Infirmary (45 mins away) before finally securing a bed in a specialist spinal unit at Pinderfields Wakefield (1 hour away).

For the first few months I was only allowed as far as the ward door because I couldn’t hold or help him I’d make him all his favourite homecooked meals and place them on the floor outside. It was the only way I could think of to show my feelings and I’d pour as much love as I could in into them.

Florence told me she was scared that daddy was never going to come home again

Jaime and I would also Facetime each other multiple times throughout the day. In the absence of visiting this was a massive comfort but it was also incredibly frustrating – staffing shortages at the time were so rife there was so much I could have done to make Jaime’s life a little bit easier. Even hospitals aren’t set up for disability - the nurse call system relies on you having the physical capability to retrieve the call button and press it – often J would have to call me using voice recognition on his phone to get me to phone the hospital to get him some help.

Covid has affected hospital services in so many ways, at Jaime’s unit normally a whole range of support is offered by volunteers who provide peer support, sports activities, wheelchair skills, financial advice, driving lessons and also lots of help to the spouses and children of those with a SCI. Much of what Jaime should have received to support his rehabilitation was greatly reduced in terms of therapies -things like the hydro pool were out of the question. We are now playing catch up but ultimately it has probably had a significant impact on him achieving a much better long-term result.

The children

From the day of the accident and all while J was in hospital, Florence and Seth slept in the bed with me. It was an enormous comfort having them with me and being able to see they were safe. I was terrified something would happen to one of them. For many months after the accident I would constantly scold them for performing any activity without their feet firmly placed on the ground. I refrained from taking them on bike rides and I was the only person locally grateful for the parks being closed as we could avoid their beloved monkey bars and climbing frame. I knew my risk aversion was too severe and in their words “stopped them living their lives” but I was too overwhelmed with grief to have behaved differently.

Florence told me she was scared that daddy was never going to come home again, she thought he might die or be moved into a care home. I promised her and Jaime that he would not have to go into a care home – I would do whatever it took to stop that from happening. Which is partly why fundraising is so important to me - I can’t break that promise.

Caroline McCullough
©Caroline McCullough

Understandably Florence and Seth resent some of the changes that have come since Jaime returned home from hospital (although of course they were delighted to have him back). There are many things we currently are unable to do as a family and Jaime’s health and vulnerability means that I have to often put J ahead of the children.

Bedtime is probably when the children want to cuddle and chat most and I am often torn between them and their dad. Three nights per week we don’t have carers present and I have to half-sleep on a single airbed immediately outside his bedroom frequently getting up to care for him.

I try to make sure we sit round the table together each evening for dinner. Thankfully the children have taken some of their new responsibilities in supporting their dad very well, they are always on hand to help him out when cutlery is dropped, or drinks need poured, they will clear his dishes into the kitchen – but rarely their own!

Coping as a mum.

I’ve had so many people come up to be telling me I’m doing great etc, its lovely to hear their kind supportive words. In reality though I just feel that I’ve never had a choice but to keep going. Certainly in the first few days/weeks/months following the accident I was acutely aware that I had to keep going to deliver supplies to the ward door but even more, to make sure that Florence and Seth knew I was OK. As long as I was getting up, cooking, playing, listening and keeping up the optimism their fears were dampened. I often thought in the weeks following the accident that if it had not been for Florence and Seth I might well have curled up in a ball somewhere to wallow in my sadness and grief.

Our family home

I moved house for us the day before Jaime came home (with a lot of help from my next door neighbours). This house was 2-storeys but it had a bedroom downstairs that would just about take the profiling bed and mobile hoist that J would need.

Carpets, standard width doorframes, steps up to every external door and no accessible bathroom make it a long way from suitable but it was the best we could do. Jaime was provided with a portable ramp from the hospital but even on his first day home one of the carers slipped on this ramp causing he and Jaime to fall. The gradient of this ramp was very steep and it took a lot of strength to get Jaime up and down it. After a few weeks some friends whittled together a wooden path to help get J over the gravel that existed just after the bottom of the doorway. No-one but I was able to get Jaime in and out of the property and we ended up having to pay for less dangerous portable ramps (£800) and then a few weeks later a very kind local builder- Tim Croft- turned up with 3 men and cement and actually built a safe stone ramp from the front door all the way to the driveway.

This is currently the only modification we have made to our home and we need so many more. Sadly even though we are not in any way rich people as Jaime and I had a little bit of equity tied up in a home we aren’t be eligible for any financial support for adaptations - or at least not until we have spent over £534,000! Jaime has had to endure bed baths since leaving hospital in November and toilet on a commode in his bedroom. It is all terribly undignified for a 46 year old man. Accessible facilities cost an enormous amount of money.

Fundraising efforts

To live a full life Jaime will need on-going physio, an accessible home, adapted tools and technology, probably a few different types of wheelchair and everything we do going forward for a bit of a ‘normal family life’ like a car, holiday, days out, sports will all always cost a lot more now.

A nurse friend Louise started crowdfunding while Jaime was in hospital – she knew all too well that we were going to need some financial help. It was actually this page that acted as the backbone to even more ambitious fundraising attempts as others jumped onboard to help us and from this Jaime’s Journey was created. They help us in so many ways including raising awareness, encouraging wider support, supervising all aspects of the build and adaptations and even helping improve life for our children.

To donate to Jaime’s journey please got to https://www.justgiving.com/crowdfunding/jaimesjourney

Just so you know, whilst we may receive a commission or other compensation from the links on this website, we never allow this to influence product selections - read why you should trust us