On the eve of Christmas Eve 2014, my husband, Humberto woke up with a numb feeling down his left side. Both he and I thought he must have been lying heavily on that side through the night causing pins and needles. Anyhow we headed off to do some grocery shopping but eventually we had to leave our trolley in the shop because Humberto just “didn’t feel right”. We went to our GP Surgery but they told us to go straight to A&E, which we did. The A&E doctor immediately suspected a stroke which came as a complete shock to us because Humberto’s face wasn’t fallen on one side and he could raise both his arms, we had actually checked for these signs. An MRI scan showed that Humberto had, in actual fact, had two strokes.
Before the stroke we had quite a bit of stress in our lives and Humberto was having trouble with his blood pressure. In hindsight he had been having small TIAs but didn’t realise at the time, as the numbness would have passed by fairly quickly. But isn’t hindsight 20/20 vision.
The stress was caused by a family situation. Sadly our grandson is hooked on drugs – marijuana, cocaine and legal highs. He has behavioural issues and ADHD, so we have always worried about him. However, in his teens he became involved with drugs and by the time he was 15 years old, the situation with his mum and his siblings had escalated to the point where social services were called in to find him somewhere else to live.
We were asked to take him in. As his grandparents, we felt under pressure to do so, but we also believed we could help him, nurture him, fix him, save him. And so he came to live with us.
But we couldn’t fix him. He robbed us. He ended up attacking us when off his head on drugs and we had to call the police for help. We suffered financially as we had to cash in insurance policies. We’re retired and looking after a teenager is not cheap. We had the police turning up at all hours to arrest him. We were living in fear of what he would do next. We also feared the police arriving with news he had died.
He destroyed our lives when we were the ones trying to help him.
We felt very stressed and couldn’t cope. It was daily, constant. We weren’t offered any help in coping but we didn’t really think to ask for it. We didn’t recognise it as stress.
The stress was starting to show itself in our lives. I couldn’t sleep, especially after the assault, although I did go for counselling. We also argued about everything, even unrelated things.
All conversations with each other, family or friends revolved around our grandson, but talking to others meant reliving what was happening. We knew that people were well-meaning but we found ourselves withdrawing from others as we needed downtime from thinking about it. Eventually we even stopped talking to each other about it.
Another frustrating part of the situation was that our grandson didn’t recognise what he was doing to us. In fact, still to this day he doesn’t recognise what he has done and shows no remorse. This is very frustrating. It would make such a difference if he only acknowledged what he has put us through.
Another element to the stress was that we couldn’t resolve the situation by ourselves. It was out of our control. It’s different from a one-off source of stress, like planning a wedding, which you know is for a limited amount of time, and to some degree is under your control. This was ongoing stress from which there was no relief and no end in sight.
I myself did have the outlet of being the one who spoke to social services to try to get help for him. Humberto didn’t have that. So maybe this helped my stress levels as at least I was doing something to try to change the situation.
But anyway, when Humberto had his first stroke, we didn’t even realise what had happened. It was December 20th 2014, and his leg and arm felt numb, but the feeling passed.
Then on December 23rd he woke up with a numbness down his left hand side, which we assumed was bad pins and needles. We headed to the supermarket to do the Christmas food shop but eventually had to abandon the trolley and go to the doctor, followed by A&E where a stroke, in fact two strokes, were diagnosed.
Humberto was discharged on Christmas Eve with a leaflet and the promise of a follow up. We had been given some information about the need to eat healthy, to do exercise and to relax but essentially that was it, we were on our own.
Over the next while we felt so alone, whilst Humberto had relatively few physical after effects he was extremely emotional and fatigued. We could be watching TV and the next thing he would be crying and not really knowing why. He’s a strong man and when I tried to comfort him it would make it worse. Then not knowing how I could help upset me and it became a vicious circle. It felt like we were dragging each other down.
It was actually our neighbour who said why not give NI Chest Heart & Stroke a ring. I wasn’t sure how they could help but it had just got the point I knew we needed help from somewhere, even just for some information.
A Family Support Co–ordinator came out to our house to speak to us and just this was like a light turning on. She explained that NICHS had experience in helping people live life after stroke and described some of the services on offer. She described the Taking Control Programme. We were both actually quite sceptical about how it could help, I imagined being lectured about why we shouldn’t have smoked or whatever and being told what we should and shouldn’t be doing and Humberto couldn’t envisage how talking within a group would help. But the co–ordinator was so encouraging that we decided to go and give it a try, sure we had nothing to lose and we didn’t have to go back if it wasn’t for us. We went that first day and haven’t looked back. My initial worries about being lectured to couldn’t have been further from the truth, it is all about learning what is right for yourself and taking control of your own life back. The best word I can use to describe the programme is positivity.
I went along really as Humberto’s carer but I have asthma and diabetes myself and I got so much out of the programme for myself. The group bonded so quickly, even in that first week; we were able to share a little bit of our stories with each other, in our own words, and whilst the stories were different there were lots of similarities. Lots of people feeling a little bit lost, trying to adjust to the “health bomb” that had gone off in their lives and trying to make sense of the future.
Sometimes people got a little bit emotional but we were all able to comfort each other and even though there were times it was emotional there was no negativity. And that was the theme throughout, together with the Programme Leaders, we listened to each other, we inspired each other and we helped each other. There was a good mix of men and women on the Programme and this helped both me and Humberto feel comfortable talking and sharing our experiences because we knew that there were other people who could completely relate to those thoughts and feelings.
Each week we set ourselves action plans or goals for the incoming week. Going back one week I actually hadn’t accomplished my plan but I wasn’t made feel like a failure. Instead the group helped me to look at the reasons why I hadn’t accomplished what I had set out to and together we came up with some solutions to that problem. I accomplished my plan the for the week and that felt good. Humberto was also doing more walking because of the action plans we was setting for himself.
I suppose over the 6 weeks it was a bit of a slow awakening that we needed to start to look at our lives in a different way; that there were some things in our lives that were controlling us and we needed to take control of them. We also needed to learn to change the way we went about doing some things, for example to break some tasks into smaller steps; that not everything has to be done at once. We have learned that by pacing ourselves sometimes even more gets done in reality.
We are both so thankful to have come into contact with NICHS, sometimes I wonder just where we would be now if we hadn’t. I would definitely encourage people to make contact. A lot of people have said to me “sure why would I want to go and listen to a lot of people talking” but I explain that it is much more than that. It’s really not about wallowing in your own situation, it’s about seeing things in a different way and learning skills or tools that will help long into the future even when the Programme is over.
We remain in touch with friends met on the Taking Control Programme at the monthly support group and find that group useful as well, for example, in the near future a pharmacist is coming to speak about inhalers and medication for chest conditions which will be really useful for me. We are also looking forward to the weekly walking group that meets over the summer months.
And what about our grandson?
During the initial months of Humberto’s recovery, he was still living with us, but in May 2015, one month before his GCSEs, social services stepped in and took him into care.
Now he is 18 years old and an adult, but sadly he is still on drugs. We are still in contact with him but we usually hear from him when he needs our help.
There is still an element of stress for us both as we are still fighting to get our grandson support. We are still his grandparents so our hearts and heads will always be full of worry and pain for him. But now we understand stress better. We know that we need to manage it. If we find ourselves getting irritable and arguing with each other, we calm ourselves down. In fact, we can’t remember the last time we rowed. But we will never be able to 100% walk away from the problem.
Find out more about the stroke support that Northern Ireland Chest Heart and Stroke offers.