Brain injury can happen in seconds and change your life forever. We never think about this or take time to learn more about it as we don’t think it will ever happen to us. Well it happened to me six years ago, when my husband of three years suffered a stroke at thirty years young and our lives were changed completely.
On the evening of Friday 16th January 2009 my husband returned home from work and mentioned
he had a bit of a headache and had some difficulty in reading aloud a children’s book to our 15 month old son. He took a couple of pain-killers and went to bed around 10pm. At 6.30am the following morning I got up as I was quite restless as I was in my 40th week of pregnancy. I spoke to my husband to say I was going down stairs and he replied that he was going to sleep on.
At 7.30am, I heard my husband moving around upstairs and the he walked down the stairs and entered the sitting room and spoke to me with slurred speech and a fallen face. I asked him to sit down and asked his name and what the day was. He could answer all questions correctly but he was feeling funny and his arm movement was impacted. I rang D-Doc to ask what should I do and explained the symptoms and they asked if he could walk and if so, I should put him in the car and bring him to our local A&E which was close by. A few minutes later we were at the A&E and the triage nurse interviewed us and my husband struggled to answer his questions. My husband was put on a trolley and examined several times over the next few hours by doctors and nurses and around lunch time was given a CT scan. By this time my husband had lost all his ability to speech and was hemiplegic with total paralysis down his right side. The scan showed a clot in the left side of his brain and an aspirin was administered and the staff started proceedings to admit him to a ward. The doctors spoke with me and informed me that there was neurological damage in the left cerebellum but that they would need an MRI scan to complete the diagnosis. The hospital did not have its own MRI scanner and said they would make inquiries to see if this could at Beaumont hospital and possibly on Monday or Tuesday. I asked if they could send my husband’s CT scan to Beaumont Hospital and request an MRI sooner and if it was possible to transfer him to there as they had a Neurology department.
At 9pm that evening my husband was transferred the short distance of 10 miles to Beaumont Hospital and had an MRI scan and a full diagnosis given by 11pm that night. His stroke was due to the spontaneous dissection of the carotid artery in his neck and some of the internal lining of the carotid had peeled away and travelled up to his brain and formed a clot. The MRI scan showed a black area about the size of a golf ball in the brain which had suffered from lack of blood supply. At this stage they said there was nothing they could do to reverse the damage and that the next two weeks were critical and they would monitor him closely for any other neurological changes. I came to learn later about treatments such as the clot-busting drug, thrombolysis which breaks up the blood clot with powerful blood thinners and must be administered within 3-4 hours of the stroke. I still wonder how different things might be today, if only I had brought my husband directly to Beaumont Hospital and then he may have been seen by an on-call Neurology specialist and had the CT scan sooner and then possibly be in a position to get the clot-busting drug.
A stroke is not like a broken leg – there is not time to think about what you might do and where you might go, the clock is ticking and the longer the delay before the clot is confirmed and a clot busting drug administered the more of a person is lost. Recent research claims that every 15-minute delay in receiving a clot-busting drug means stroke survivors will have about one month less of a disability-free life, while every minute sooner that they receive the drug translates into more than one extra day of healthy life.
It was difficult to even comprehend why my husband had suffered a stroke as he was young, fit and healthy, a non-smoker and only a social drinker. After all the tests and examination of family history there was no medical reason determined for why the dissection of the carotid artery had occurred – it was just a random stroke of misfortune. It came as a huge shock to me and the rest of our families and at a time we least suspected it. Our eldest son was only 15 months old and we were due our second child that week. In any case, my husband remained on the critical list for two weeks and our second son didn’t appear until things had stabilised and arrived 15 days overdue.
From day one of the stroke, I quickly had to educate myself on acquired brain injuries and neuro- rehabilitation and work closely every day with doctors, nurses and therapists to make plans and work together to look after my husband. For the first few weeks my husband could not make any audible sound and we learnt to communicate with him by asking yes/no questions to which he answered with a thumbs up/down gesture. My husband spent five weeks in Beaumont Hospital and then a further 14 weeks and the National Rehabilitation Hospital (NRH) in Dun Laoghaire. During this time he made steady recovery and regained his ability to walk through hours of intense physiotherapy. He recovered his ability to speak words and then form small sentences over these months, albeit with lots of errors and much slowed. We were so grateful that my husband got the opportunity to attend the NRH and benefit so much from the in-patient programme. By the time he returned home in May 2009, he was able to walk unassisted and even to make his way upstairs while wearing a bespoke ankle foot orthotic to help with the leg drop. His arm never recovered any motion and his speech and communication was still a major difficulty.
Once my husband was back home, it fell solely to me to coordinate and manage his neuro-rehabilitation. Every day I looked after him and my two sons, booking and attending appointments with consultants, physiotherapists, occupational therapists, speech and language therapists, etc… I wanted my husband to receive the best possible neuro-rehabilitation that he could and that was available to him. I wanted more than anything for him to regain the life he once had and I believed he could do it or at least come close.
As a carer, I learnt early on that you can’t leave it to anyone else to advocate for your loved one and that you have to take charge of it yourself no matter how daunting a task it may seem.
A year after my husband’s stoke and as I continued to look for ABI supports I met with the local case manager from Acquired Brain Injury Ireland (ABI Ireland) who became the most invaluable support to my husband and our family. ABI Ireland empowered my husband to put no limits on his rehabilitation recovery and strive to achieve his goals. They never said never. We had a close team of rehabilitation assistants (RAs) whom collaborated with my husband and I to set monthly goals and then supported him in achieving those goals. We opened up our home to the ABI Ireland team and for the next four years they became like new family members.
As a result of his stroke my husband suffered permanent mobility issues, speech and language difficulties, loss of the use of his right arm and became epileptic. However one of the biggest losses he suffered was the role of being a dad. For the first three years, he was extremely busy with his rehabilitation schedule and had little time or energy for being a parent. At this stage, we made a positive decision together to try and put his stroke behind us and get on with the rest of our lives. So, we decided to try for a third baby and two and a half years ago my husband became a father for a third time to a little girl. Due to his stroke and intense rehabilitation my husband had missed out on our first two children as infants; and this time round one of his main neuro-rehabilitation goals became regaining his role as a parent.
His rehabilitation with ABI Ireland continued for another next year and with another new focus – that of returning to work as a Device Engineer in Intel. The management and occupational health staff supported this return on a phased basis and my husband has now been back at work for the past eighteen months. After four and a half years absent, he returned on a 12- hour week and has gradually built it up to a 32-hour week. His job requires computational modelling and data processing and using skills he acquired during his PhD in Physics. His talk is a still a bit slow and his colleagues and manager have been hugely supportive of his return. Currently, he works from 8am-2pm five- days per week and then collects our two sons from primary school and minds his three children at home for the afternoon. He makes the dinner most evenings and brings our eldest son to GAA two evenings per week. Six years ago I never thought this would have been possible but today I know that the right rehabilitation at the right time can work miracles. It can change lives.
As for me, people ask me all the time how do you do it? How do you cope? I think I took on the concept that life was not over we just have a hurdle to jump and we were jumping it together. My saving graces were my children and my career; for any carer it’s important to have something that’s your own identity.
Luckily, I was on maternity leave for most of the first year after my husband’s stroke and so I was able to spend that time at home. I started as a University Lecturer a year after I completed by PhD in physics and have always had great colleagues and support from management and none more so than when I returned to work.
In the University, I was allowed be ‘me’ as opposed to a carer; it gave me a healthy perspective on life. I’ve also had the benefit of a close network of people who gave me a safe environment to talk and vent when I needed it. I think it’s important to have your own supports too when you are a carer, to keep yourself strong for the loved one you are caring for. The greatest demand on me as a carer was to be the enabler of my husband’s recovery.
Having read this story my hope for society is that one day we will have an increased societal understanding of how the brain works and a wider acceptance of non- neurotypical behaviour. I hope that people will open their minds and become educated about acquired brain injury; realising that although it is a change in brain function the person inside is still the same. Life is not over; it just took a different pathway.