Hello everyone, my name is Margaret. I don’t have Cauda Equina Syndrome but my daughter does.
I think my story will resonate with all of you who are carers, but I feel that everyone will recognise what I have to say that, basically, we are all affected by CES.
My working life was spent nursing cancer patients, sadly including my late husband Rod who died 20 years ago. A wonderful Father, he left me with three boys in their twenties who had left home, and Catrina who was ten years old. So it was just the two of us at home. We did everything together, dancing classes, weekends away, slowly trying to recover from our loss. We grow ever more closer as friends and manage to smile or laugh at something every day. I think this has helped us get through.
I retired at the age of 59, thinking I would spend my time trying to keep fit, lunches with my friends, and spending lots of time with my sons and seven grandchildren. Most importantly I expected to have plenty of time to watch Coronation Street and Midsummer Murders!
Before I start on how that changed, I want to say that I’m not a martyr or a saint. I can be as selfish as the next person. There are times when I feel frustrated and irritable, when I feel like I can’t cope anymore, but those times are few and far between and they pass quickly. I do see others my age flying abroad several times a year, and I do feel jealous – I’m human. However, I wouldn’t swap my life with theirs because I would have missed so much precious rewarding time with my daughter if things had been different.
Catrina has suffered with degenerative disc disease since the age of 16 or maybe sooner. That didn’t stop her love and talent for dancing and I encouraged her in her dream. She was a champion and applied to study dance at a university in London. By this time I was retired so I could zip off down the M1 to see her occasionally, however, her degenerative disc disease worsened despite having a micro-discectomy in Tooting. Things continued to deteriorate and she eventually had to return home and she got a job as a support teacher, something she loved. But in 2012 she returned to London for a visit and Cauda Equina Syndrome occurred.
There was dissension between the professionals as to whether decompression surgery was needed. Despite having being prepped for surgery and having been seen by an anaesthetist, it was decided to treat her conservatively. It was nearly three weeks before she had decompression surgery. Her life and mine has not been the same since. She has had numerous surgeries to stabilise her deteriorating spine, but that has not stopped the damage caused to the nerves by the delay in decompression. The deterioration continues still.
The hardest thing for me is to watch the pain she experiences every day. No one else sees the extent of her pain, not even close family. We have spent many nights awake, I try to help and even try watching DVDs to distract her from the awful pain, but as I get older I find I need more sleep so that I can function in the day when she needs my help. We now go to bed early and nap when we can.
Some time ago Catrina had a social worker who fixed up a package of care. This was when she was bedridden and needed to be hoisted. It worked for a while until her care went out to an agency. The level of competence was variable, some treated her roughly causing her pain, some did not respect her dignity. Of course not all were like that and she made good friends of some of the carers. We decided, mainly me if I’m honest, that I could manage the care alone, with my nursing background and knowledge of Catrina’s needs. A PA system didn’t work either, as the hours were fixed and didn’t allow for Catrina’s individual requirements. We both now share a brilliant social worker and the level of help is much better. Recently we decided to both attend courses to improve local authority care strategies. As care users we can have a voice in future care decisions to help all the people in our area. We want to promote care that is tailored to the specific situation and an individual’s needs. It’s important to us both because we really could have used that help before.
Sometimes life is a series of doctors and hospital appointments for either one of us. We compare diaries all the time. Each time a new medical problem arises for Catrina, my heart sinks. We have to come to terms with whatever is happening, be it bladder, bowels or something else. She has had many MRI scans and suffered a second cauda equina syndrome episode with a resultant CSF leak. This kept her in bed for 16 months and meant going to America for the best surgery. Catrina has been stoical throughout everything and I am very proud of her.
My own health at 73 is troubling me, I have osteoarthritis in my knees and spine, and diverticular disease which flares occasionally, usually ending with an A&E visit. A couple of years ago Catrina began to notice a change in my manner, she gently introduced me to the idea that I was depressed. Of course I said no, that I was just tired and worried. However, things worsened and one day I couldn’t stop crying. I allowed Catrina to ring the GP and before the end of the week I was taking an anti-depressant. As soon as I admitted to myself that I was depressed I started to feel better. I always viewed myself as a strong, capable women who had always coped throughout terrible times and still could. Allowing myself to be vulnerable and telling my friends and family about it, helped. I still have ‘off days’ but not very often. In the last year or so I have had three falls partly because I’m not as stable on my feet but also because of a lack of concentration. I know this worries Catrina. She is concerned I might do myself real damage. My confidence takes a knocking after each incident. We now both have safe and sound alarms to alert others if anything happens. So we feel safer with that.
I have three sons, Catrina’s brothers. One lives in Birmingham, one lives in Cardiff and my third son lives next door to me. They all have families but still try to help as much as they can. My son that lives next door, Sean, is always there in an emergency for us both, but I know that all of them would be there for us if they could.
My mindset is slowly changing about our situation, I realise more help is needed, the house we live in is not ideal for me any more, never mind Catrina. So changes are happening. Catrina is wanting independence and for me to have a semblance of the retirement that I envisaged all those years ago, So we are making plans for the future. CESA is proving to be a God-send for us both. I’d like to say a big thank you to Claire for starting something so wonderful.
Catrina always says how grateful she is to me, she worries that her brothers and their children are missing time with me and I with them. I understand her concerns, and I know she carries a lot of guilt about it (despite non of this being any of her doing). CES has affected the whole family in that regard. It has distanced our family in the amount we can see each other, but then in other ways it has brought us closer. Things like when Sean or his wife comes round within a moments notice to help us in emergency situations, or my Son Cameron and his wife when they bought us a washing machine and an iron which was very much appreciated, or when my Son Damian and his wife took me on holiday to Majorca this year for some respite. I’m very proud of my Son’s and their wives too. I know I am very lucky. My Grandchildren have grown up knowing Catrina as disabled and they look after her. Seeing that is both heartwarming and heartbreaking. And I think that sums the dichotomy of our lives. There is very real pain in our lives but there is so so much love, and that’s what keeps us going. Thank you, Margaret.
(Me & my children)