Does Being a Carer Affect Your Other Relationships?

I think it does.

We are all used to being pulled in many different directions. We are parents, partners, children, siblings, friends, employees or employers, the list goes on. We lead busy lives with very many demands being placed on us. Add to that equation carer/nurse and there is only so much of us to go round so it’s bound to affect the time and energy we have to invest in our other relationships.

Full-Time Mum

I will always consider myself lucky to have been able to be a full-time mum/carer after I had my second child Harry. It’s not what I had planned before I had children. I enjoyed my career and intended to pursue it, but circumstances made it easier that I stayed home and I wouldn’t change that for the world. Those years with my boys were hard but extremely precious too. My husband, Darryl, worked long unsociable hours to support our family so I could be at home and I am very grateful for that. Naturally it left me with the lions share of the childcare. I have to say at this point though, that when Darryl was home he was sleeves up and stuck in too. But, when you have a child with additional needs like James’ it’s not just about the practicalities of childcare. It was many, many hospital appointments, assessments, meetings and generally juggling all the arrangements that were needed to manage our lives. All of that whilst looking after two young children. With James’ development so delayed I remember thinking how I empathised with parents of twins. I had two children who were in nappies, needed feeding, were in highchairs side by side, and had I to negotiate a cumbersome double buggy as, although James was 3 1/2yrs old, he wasn’t walking when Harry was born. On top of the basic day to day childcare were the behavioural aspects of James’ care too, and the nursing side of things. Learning to insert nasal tubes, giving gastrostomy feeds, using the feeding pumps, changing gastrostomy buttons etc.

Partners

So where do our partners fit in to this hectic schedule? Not surprisingly, by the time Darryl came home, which was often not until the early hours of the morning, I was shattered. I admit I wasn’t particularly interested in how his day had gone nor did I have the energy to tell him about mine. It’s a sad fact that the breakdown of relationships amongst parents of disabled children is higher than the national average. It’s really not surprising. We all know how hard it is to maintain healthy relationships at the best of times, but with the added complications of raising a child with additional needs, lack of sleep etc many relationships don’t survive. I don’t wish it to sound like we never had any quality family time because we did, or that Darryl and I were at loggerheads all the time because we weren’t but it would be fair to say life was pretty stressful. When we did have any time to ourselves we were both shattered and privacy within your own home is hard to come by when you have carers coming in to support too.

As James got older he became increasingly possessive over my time and attention. He still is. This led to him displaying difficult behaviour if Darryl so much as walked in a room and spoke to me. I know that sounds ridiculous but it’s how James is. Often Darryl and I chatted very little about anything as it was easier not to. This has changed since James moved into his own flat 10 months ago. Now Darryl and I chat about our day when he comes home and we do very much more together.   

Siblings

So, to our other children. When Harry was born it’s fair to say that James wasn’t your average 3 ½ year old. He was unable to do anything for himself. It was hard work. It is for all parents of young children, I know.  When Darryl was here we’d each feed one child or bath one child or change one child. When he wasn’t I’d juggle. At times it felt relentless.

Susanne Was Sent To Us

We had no external help until just before Harry was born when Susanne came into our lives. Susanne worked for social services and was introduced to us so that she could support with James when Harry was born.  For many years she would come to our house for just a couple of hours twice a week to occupy James, leaving me time to concentrate on Harry. It was difficult because James often won’t engage with anyone very easily when he knows I’m around. James started a special nursery twice a week before moving on to school. As much as I always had other jobs that needed doing whilst James was out, I always tried to give Harry lots of time too as I knew he didn’t get much when James was home. I remember many times though when we would be playing with Harrys lego or train set on his bedroom floor when I would fall asleep. Or I’d nod off halfway through reading to him. Harry didn’t always get the best of me, but I always tried. 

When Harry started school Susanne would come two afternoons a week and wait for James’ school transport to bring him home. It was the only time I could collect Harry on time from school. Every other day I would be waiting at the door with James’ wheelchair to get him off his school bus and dash to Harry’s school to collect him. I was usually late and Harry would be waiting with his teacher. 

As the boys got older and were both at school Susanne would look after James for a few hours on a couple of days in the school holidays too. She would take James to her house which isn’t far from mine. I’d use those times to meet up with Harry’s friends or we’d spend hours junk modelling which he loved to do.  We made all kinds of elaborate models or we’d play games. James would never let me play a game with Harry when he was home. 

When James started to have the odd weekend at respite, we always took Harry out. We’d take him to places and do the things we knew we couldn’t do with James. We were very restricted when we had James and we tried to make up for it when we didn’t. Either that or one of us would stay with James whilst the other did something with Harry. 

Siblings of children with additional needs often have a hard time. I hope we did everything we could to lessen the impact on Harry. There were times when it was just impossible for me to collect him from Scouts because James was in bed, or get him to a party, but hopefully those were few and far between. When you have a child with the complications James has you can’t just leave them with a friend or neighbour while you pop out for 5 minutes. But I never missed Harrys parents evenings and that was thanks to Susanne who was always able to step in and have James for me. I tried so hard not to let Harry down. He might not have always realised that when he was younger but hopefully he does now. 

Mum and Dad

My parents have obviously been a constant throughout. Darryl’s parents were less hands on and sadly passed away many years ago. Mine have supported where possible. It’s fair to say they were anxious in caring for James once he started to have seizures as they’d never had any experience of this. Fortunately, James grew out of those after a few years. Mum would sit with James after school so I could take Harry to swimming lessons and once they’d mastered setting up James overnight feed they’d babysit so Darryl and I could have the odd night out. When both boys were at school mum and I would spend a day each week together. They are so interested and proud of anything both James and Harry do and I’ve tried to involve them in everything. I’m sorry I haven’t always had as much time for them as I should have. 

My Sister

I can’t write about my relationships with other people and not talk about my sister, Joan, with whom I share this blog. Like a lot of siblings, we were together a lot when younger then life takes you on separate paths. Joan moved away but we were in contact. She wasn’t close by when I had the boys but she was at the end of my email. I remember times when I would send her long ranting, emotional emails just to let it all out. She never judged me, always listened and came back with advice or practical suggestions. We all need someone like that. Joan moved back to the area about 12 years ago and we have become much closer. She was able to be involved much more in the boys lives, having them to her house for tea or taking them out. She has stayed at my house a few times too and looked after James so we could take Harry on holiday. We have amazing memories of those holidays and I can never thank her enough for that. She is my go to person when I need a listening ear, without question she is there for James when I can’t be, she will drop everything to come if I need her and I hope she knows I would do the same for her too.     

Friends

So how does being a carer affect our other relationships? I guess we just have less time for them. In the early years with the boys young and at home we didn’t have the technology at our fingertips as we do now to be in touch with our friends and I did feel isolated. My friends’ lives had taken a different turn to mine. I still kept in contact with some but those friendships waned over the years, apart from one or two. I’ve known my friend Helen since we were 17yrs old and we’ve been through everything together. If she didn’t always understand exactly what I was going through she did a very good job of listening. We still see each other for lunch regularly and it’s the type of friendship where you just pick right up where you left off last time you spoke. Of course, I’ve made many new friends whom I wouldn’t have met had it not been for James. There’s a few of us on a group chat and we are in contact most days. We’ve all been through a lot together too and lean on each other for support. We can pretty much say anything and never think the worst of each other because we understand what each is going through. We have some laughs together, too. You have to laugh.

It’s easy in hindsight to offer advice. What I will say is guard those relationships that are important to you, look after those people you care about as it’s those people who will help you through the tough times and celebrate the good times with you, but it’s hard when you are just full on caring and exhausted. However, it is so much easier now when it just takes a moment to be in contact. Friends that don’t take the time to understand what you are going through maybe aren’t the friends you thought they were. I’d once made friends with another mum when she and I spent a few weeks in hospital together, both James and her son were quite poorly at the time. We bonded over our boys. Sometime later when she visited us at home she didn’t understand when James was a little rough when her son took James’ toy from him. James hadn’t hurt him but our friendship didn’t survive. 

Use what energy you have to invest in the relationships that matter to you the most, and if you matter to them too they will be there for you when you need them.  

And I must just add, 22 years on Susanne still works for me and looks after James one day a week. How lucky were we the day she arrived on our door step!