Solange’s Story – Caring for Michael

“A great professor said to me the other week, ‘the word stroke is a small word but it has such a devastating effect” How true.

This is a little insight of a very clever man and the life changing stroke he had, together with the effect on me, his partner and now carer. I hope that this true account will help others in a similar situation, and to acknowledge the hard work and anguish suffered every day by carer’s.  The forgotten individuals who go without a thank you and unheard so much by so many.

Michael always had one fear above all: “The one thing I do not want to lose is my mind” Solange what will I do if that went?”  What will you do with me when I have taught you everything I know?”

Monday May 30^th 2016 at 07.19am was when our life changed forever.  In literally a split second our life went from love, laughter, making plans for our future.  The places we were going to visit, getting married, living in Portugal and where we going to move to the next, it all changed.

We had just returned from a fantastic trip to Italy, taking in all the sites.  Florence was spectacular and we had the most amazing time there together.  We really did get to know each other more than ever and both decided that we were never going to be apart, Michael said that the “only way he would ever leave me was if he died”. I truly believed that, Michael is an honest, honourable, decent man.  Boy, if only I knew what was going to happen less than 48 hours after our return from Italy?

Do I blame myself for not truly recognising the signs of a stroke?  It may sound daft, but my Pug dog had had a stroke years earlier that left him with seizures and a terrible hunger. Was it my fault, should I have insisted that Michael go to the doctors and have his blood pressure checked or go to A&E to check out the pins and needles he had in his left arm? We put this down to either all the tolls barriers we had to go through, or the fact that we had just moved home again and all the lifting and shifting.  Life works in mysterious ways, and I can’t turn the clock back.  I can only deal with the now and part of the future.

That’s the problem, the future is so uncertain, for all of us, let alone someone who has had such a massive stroke that stunned and shocked all the doctors we saw in Portugal, with the words “It is a miracle he is alive, this kind of stroke would normally kill a person”.   That’s where I have to give myself credit and recognition on the fact that I acted so quickly when it happened, seeing Michael go from a strong lean athletic individual to a quivering wreck, whose left arm lay limp and whose leg could not move and the urine was just dripping everywhere over the bed and floor!

Nothing prepares one for this, you don’t know whether to cry or scream. I had to keep calm and instinct kicks in as well as adrenalin.  Quickly I phoned the local private hospital but as I thought they suggested phoning the emergency services.  Now what you must bear in mind we are in Portugal, I am not fluent in the language I had taught myself the basic phrases, alas not medical ones.  I spoke fluent French and some Arabic, but mastering the Portuguese language really is difficult. We did not have any family or close friends nearby so it really was just down to me. After what felt like an eternity, it was about 20 minutes, the emergency services arrived.  Thankfully one of the Bombeiros (the Portuguese Fire Brigade) spoke English, it was not looking good.  Michael had no movement in his left arm or left leg. We tried desperately to dress him in trousers but it just was no good.  Michael didn’t have jogging bottoms or pyjamas; we just had to do our best and cover him up and put him in a wheelchair.  Little did I realise on that Monday morning at 08.10 May 30^th that Michael would never walk again or be of the same mind ever again.

I cannot remember another time, apart when I was about to give birth to my son 28 years earlier that I got dressed as fast.  I managed to quickly gather important ID documents, which thankfully, were always in the same safe place and together.  Michael had no Medical Insurance and I had no knowledge of public hospitals in Lisbon.  I really did feel alone and so apprehensive, scared really is too strong a word, despite the situation I was in. Anyone who has been through a similar experience may have an idea of where I am coming from.  Having no family or friends I just had to get on with it. By God that is exactly what I did.

When we reached St Francisco Xavier Hospital in the centre of Lisbon Michael was still very coherent and understood everything I said and was lucid, that is what I find the most difficult to comprehend. Now, speech is almost gone!  He spoke coherently to the triage Doctor and even admitted what we were doing at the time of the stroke, it was like something out of a movie or a novel, it was the classic, “Well Doctor we were having sex at the time that the stroke occurred”  Really? It could only happen to me! Dear reader you will realise that despite everything, I refused to lose my sense of humour.  The other thing I refused to lose and still refuse to lose, is HOPE, where there is life there is hope. By 11am on Monday May30th 2026, Michael was no longer the lucid, funny, extremely intelligent man I had met. He really was a shadow of his former self.  This was when all the tears started and the shakes began, I felt so sick and alone and I have to now say scared.  Scared for Michael more than me, what was the future going to hold for him, and selfishly for me too!

Michael rapidly deteriorated something I could not get to grips with. Infection after infection would not eat or drink.  He got sepsis and I really thought this was it; I cannot begin to express how I felt. Once again, I felt so alone and in a strange country. What the heck was I going to do?    But, where there is life there is hope.  I would not give up and took his favourite music on the iPod, podcasts on his phone, I read his New Scientist to him, and talked to him if there was nothing wrong.   I am convinced that all of this, together with the constant care, drinks, melon and more melon, custard, yoghurts, anything that I could get down him, worked to bring him round.

After 2 weeks in a specialist unit he was sent to different hospital, things alas, did not get better, and then Michael was sent to a Rehabilitation unit for 6 weeks. In between he was sent home to me, which was really difficult, I had to source a special bed, and all sorts of specialist equipment, remember it was a strange country and no help.  Not easy at all. But I am not a quitter and I did not give up.  I did manage to enlist the help of a really good English speaking carer.

To help me through it all I began to write a diary which I still keep up with to today.  Michael has deteriorated; he now cannot even wipe his own nose.  It is not easy, no friends or family to help, all assistance has to be paid for, I cannot go out when I want to, everything has to be planned, so no spontaneity.  Physiologically and physically this is hard. I have found that exercise does help me escape, in house of course.

To put in words and share with you what I went through, what I am still going through, would take far too long.  What I can say is, that my heart goes out to all the carers, it is so hard and no one understands unless they have experienced the same.

I have found that friends that sent all their good wishes, cards and offers of support when it happened, have all disappeared.  Only 2 regularly keep in touch and ask how we are. Few actually ask how I am. How strange. But not surprising.

When I take Michael out in his wheelchair, people look at me with pity, I do not want pity I want recognition.  The pavements, shops, restaurants, cafes, transport system, in Portugal is not geared toward disabled people.  This makes it even harder to socialise. The cost of care is ridiculous and I get not financial support for being his carer.  I have had to learn very quickly how to change catheters, check blood pressure, oxygen levels, temperatures, when an infection is about to take hold, deal with the numerous convulsions that Michael has.  A complete night sleep for me is rare.  I have also had to become a dispensing chemist, or it feels like it.  It can take 30 minutes to prepare all the weeks medications. We have had to move a near to the Medical Centre because of the frequent visits and the chemist and I are on first name terms.  Sourcing an adapted car has been a real challenge.

Yes life is difficult and it has changed beyond belief, my time is no longer my own, and it is a daily rollercoaster.  I look at a man who had such an active life and a fantastic brain, the shell is there but there is a sad emptiness. For me, it has made me grateful for every day of life and having the strength to carry on.

I know my story is not unique and that there are people out there who are in a worse situation than Michael and me. My heart really does go out to all of you, all I can say, is courage and strength to all of us.

What does the future hold?  Who knows, plans are being made to adapt our home in the UK to go back.  That will be a difficult journey as it will have to be overland and a ferry crossing, enlisting a nurse to help me.

Don’t give up.”