Richard spent 2 weeks in Morriston Hospital and then 12 weeks in Singleton Hospital. He was now being discharged after a major stroke. The stroke affected his left side and also he was suffering from delirium and hallucinations. All very distressing for him and all of the family. Luckily medication had helped with the delirium and hallucinations now so he was ok to come home. I had got into a good routine. Arriving at the hospital at 12.30 pm to help Richard with his lunch. Leaving at 2pm. Getting home then doing the washing, ironing, etc. Back to the hospital for 6 pm to help Richard with his dinner and staying until about 8.30 pm. Back home having some dinner and then sleep. This was all about to change as Richard was coming home. The date for his discharge was 30th October 2017.
I was at a complete loss as to what would happen when I got him home. The house hadn’t been assessed so I had to guess what was was needed. I knew we needed a handrail for the stairs so our son-in-law dropped what he was doing and sorted that for us on the Sunday as Richard was coming home on the Monday!! We were fortunate that we had a downstairs cloakroom but the bedroom and bathroom were upstairs. I was told we wouldn’t get any help (no care package) so really it was down to me. I was sure I would be fine I just wanted him home.
Richard could walk but not far. I went out a few days earlier and bought bits and pieces that I thought I would need which included a wheelchair and a non-slip mat for the shower (we don’t have a bath). I didn’t know at the time that I could have hired a wheelchair from the Red Cross, I didn’t have that information.
Richard was home. The first few weeks were a bit of a haze. We managed, but only just. I found it all to be mentally exhausting. Sleep for me was a thing of the past as I was on super alert all the time. Richard didn’t think that anything was different. He knew he had had a stroke and that his left arm wouldn’t work but he felt that everything else was the same as before. I felt completely different. I felt so angry and upset that this had happened. We had only got married on the 10th April 2017. We had so many plans and hobbies that we both loved to do. Four months later, exactly to the day, 10th August 2017 we were out playing a round of golf when Richard suffered his stroke and had to be airlifted to hospital. So devastating. I knew from that day our life would be so different.
Richard had to learn how to get out of bed. He couldn’t fathom out how he would need to turn on his side, get his legs out of the side in order to sit up. Nothing was automatic anymore. He had to completely re-learn things that we take so much for granted.
Eventually we got into a routine (I love a routine!!). We wake up. We banter with each other as to who is getting in the shower first. Normally its me first. Once I’m out Richard gets in and I get myself dressed and sort out Richard’s clothes. Once he’s finished in the shower I help him get himself dry and then help him to get dressed. We then go downstairs. I prepare breakfast and we sit in our conservatory and eat. Breakfast is our best meal of the day. We are both alert and we sit and go through what’s going to happen that day and watch the birds in the garden.
We now have quite a busy schedule during the week. If we are at home, I will leave Richard to get on with his arm and hand exercises why I do the daily chores. Eventually we have a bite to eat for lunch and then invariably Richard will go to bed for an hour or so as he needs his sleep. He cannot sleep in a chair he needs to be in bed with the curtains drawn. Fatigue and tiredness are huge problems after a stroke. I also find that Richard cannot cope with the change in seasons. As soon as it gets dark he thinks its time to go to bed. He loves his bed!! I’ve always said that if someone wants to see a picture showing complete bliss it’s Richard when he lies down in bed – he loves it!!
I have to make sure that I remember to do bits and pieces everyday for Richard. One of the main things is tearing off lots of toilet paper. As Richard can’t use his left hand pulling off toilet paper is not possible. If I forget then the toilet roll is always on the floor and it’s a bit like a scene from the Andrex puppy advert – toilet paper everywhere.
Another thing we do, which was suggested by our brilliant OT Jackie, is have a small mirror on the dining table in front of Richard. Richard can’t feel the left side of his mouth so to try and save embarrassment for him and others, if food comes out of his mouth, he has a mirror to check his face. He doesn’t always remember to use it but he’s found it very useful. Especially if we go to a restaurant.
Richard can make a cup of tea or coffee, so I let him get on with that. He also tries to get himself dressed. Doesn’t always work but we have a good laugh about it when it doesn’t. Quite often he’ll come downstairs with his pants and jogging bottoms on back to front. Also his t-shirt doesn’t always get on the right way either. He gets rapturous applause when he does get it right.
Richard doesn’t get angry or upset about anything. I do and I think its good to let off steam otherwise you can make yourself ill by bottling things up. I usually stomp out into the garden and have a scream!! Laughter is definitely the best policy. We do laugh a lot.
Monday is my day. We get up as normal and I go to a Zumba class for an hour. Richard now stays on his own. Whereas before I use to get my daughter Gemma to come and sit with him. He no longer needs or wants this to happen. I also go to a tap dancing class in the evening for an hour. Its good to do something normal and not stroke related and I love the buzz I get from doing some exercise.
Its always hard to know when someone is alright to be left on their own. I now leave Richard to go food shopping (if he doesn’t fancy coming). I don’t think I would leave him for more than 2 hours as I would worry too much. He has a mobile phone and knows that he can get in touch with me if he needs to. I try not to smother Richard but not sure I always get that right – mother don’t smother!!
Holidays was always our favourite pastime. We have travelled extensively since we met 5 years ago. We love cruising. So much so we got married on a cruise, which was wonderful. I thought our holidays would be a thing of the past but that hasn’t been the case. We went on a cruise last April to the Canaries and we loved it. We also went to Rhodes in June last year. This was a whole new ball game. When I was booking the flight I thought I needed to book front row seats so that Richard could have plenty of room and also wouldn’t have to squeeze down the middle of the plane. His left side is a problem and he forgets that it exists so cannot judge the width of things to go through. I couldn’t book the extra legroom seats so I was at a bit of a loss what to do. I then saw a number to ring for assistance. I rang and this made all the difference. They automatically gave us front row seats. They also had a wheelchair ready for when we got to the airport and we just sailed through the airport security, baggage check – everything was so easy. We then had a lift which took us up into the plane and we had our seats before all the other passengers got on. It was exactly the same when we came back so we had worry free travel – marvellous. We also try and fit in a couple of caravan holidays during the summer months too.
Our main turning point and my salvation was joining the Neath & Port Talbot Stroke Group. Here we found so many new friends. We gained so much knowledge of what was available for stroke survivors. We learned about ARNI, which Richard attends weekly. We also picked up lots of hints and tips to make our life easier. We learnt about the HYNT card and CEA card and we now regularly attend the theatre and cinema (carers go free with these cards). The group has given us back a social life which we love.
We now spend one afternoon a week volunteering for the Stroke Association with four others. This has been so rewarding. We go to Singleton Hospital, Ward 7 which is the stroke ward. We then take new stroke survivors and their family members to the canteen for a coffee and a chat. We call this the ‘Cwtch Café’ as we are all there to put an arm around them to let them know that things will get better and that there is life after a stroke. We love it. We are the first group in Wales to do this and we are hoping it will be extended to other hospitals too. I just wish that there had been something like this earlier so that I could have had the help and support that we try to give.
I know that life is what you make it. We thank God everyday that we wake up to another day!! We try and make the most of everyday. My mantra now is – we have a wonderful life its just taken a different direction.
