My partner had a stroke – Part 1
Jonathan Dunlop has been with his partner Damian for 29 years. On 12th May 2017 he received a life-changing call to say that Damian was in hospital; he had suffered a stroke. Over the year that followed Jonathan regularly kept friends and loved ones updated on Damian’s recovery through social media. They have bravely come forward to share this diary in the hope that it helps other families affected by stroke to know they are not alone. This first instalment covers the three months Damian spent in hospital.
12th May 2017
Due to have a dinner party with Neil, Mairi, Marion and Tom. Finished school at lunchtime so due to meet Damian at Waitrose at 2 to shop for it. Couldn’t get hold of him. Phone rang just as I got on the motorway – Damian’s number. It was a paramedic – Damian was in the Queen Elizabeth hospital A&E. They weren’t sure what had happened but I should get there when I could.
Went straight there – they suspected a stroke but he was sitting in bed, talking with a bit of difficulty. I asked him what happened – his eyes rolled back and he groaned.
They wheeled him away. Neil turned up (I’d phoned him to say there might be a problem with dinner). A doctor came to see me – he had had a stroke, and then another. They had carried out a procedure to remove the clot, during which he had had a seizure.
Lots of waiting around. Thank God for Neil.
Eventually he was put on a ward (514) and we could see him. He was exhausted and we were told to go home about 9pm. Had to phone his dad and sister and my family. Neil phoned Mary. She came the next day.
16th May 2017
I had been at the QE all day every day. About 8am I was walking to the hospital – he had been improving: able to walk with a bit of help, and talk albeit slowly and deliberately. My phone rang. He’d had another massive stroke overnight. Severe damage.
Neil came again.
The consultant came and told us how severe it was. He had lost most of the capacity of the left-hand side of the brain. He would probably never be independent again. Can’t begin to describe the numbness. The consultant was factual, honest but had no warmth and offered no hope.
23rd May 2017
For the 12th day I am here at Damian’s bedside. For those who don’t know he has had a stroke but is being very well cared for at this amazing hospital. Progress is slow and the damage done was severe but he has age on his side, a steely determination to get better and the love of so many friends, family members and colleagues to help him in his recovery. I’m not sure Facebook is the place for updates like this but I know that many friends old and new were concerned about him. He is in the best place, getting the best care possible. I have to be patient and positive.
30th May 2017
A quick update on Damian:
He is still in the QE and the care continues to be second to none. He is a little stronger and generally more alert for greater portions of the day. He was sick for a few days at the end of last week but his appetite is returning although he still needs to get more calories into him somehow.
After three days of rest over the bank holiday weekend he had a physio session this morning. His balance has improved since last week and he was able to sit up and keep his head up without help. Gradually the physios raised him up and with a bit of help from three of us he managed to stand for a few moments. It was really moving to see it. Needless to say he is now completely exhausted again and snoring his head off.
He is on the list to be moved to Moseley Hall Hospital which specialises in rehabilitation. Although I feel uneasy about the move it is the right thing to do and a positive next step.
Friends and family continue to be wonderful and both school and Damian’s employers are being incredibly kind and understanding.
I’ll post again once he’s moved to Moseley Hall and we see how things are going.
2nd June 2017
I promised an update once Damian had moved into Moseley Hall Hospital for the start of his rehab therapy.
The move finally happened on Wednesday evening and saying goodbye to the wonderful staff at the QE was very hard. Moseley Hall is much less swanky and hi-tech than the QE and feels quite shabby in comparison. It will take a while to settle in and get used to it. For now at least Damian has his own room which is a blessing. The staff are being just as wonderful here as they were at the QE and they take as much interest in my welfare as they do Damian’s.
Yesterday was a very difficult and emotional day; the move hit us both and I think that now I am over the initial shock of what has happened I am starting to realise the enormity of what faces us.
He had an initial assessment with the physiotherapists which was hard work and very draining. His appetite was poor and he seemed very low.
Jill looked after me in the evening and I was back here for breakfast today. Damian had slept better and was ready for a more intense physio session which again was exhausting. He came back to his room and after a short break the speech and language therapist came and got him counting, singing (which was amazing) and writing. Every small thing was a huge effort and took an immense amount of energy, but his determination and stamina makes me feel more optimistic about the future. His appetite has been much better and the food seems nicer here too.
I know what a long journey lies ahead and I know that there will be some really bad days as well as some better ones. I can’t pretend that everything is OK because it really isn’t. This situation is bloody awful and we have no choice other than to make the best of it, wherever we end up.
Again the messages and visits from our families and friends are keeping us going – so thank you.
Jon & Damian xxxx
10th June 2017
It’s difficult to give much of an update on Damian’s progress as it is extremely slow. There are a few very small victories which lift our spirits but mostly he is exhausted and spends much of the time dozing.
He has had two therapy sessions every day this week and the effort he puts in is incredible. Tiny movements require enormous effort and tire him out. The good news is that his appetite is quite good now, and he has been put on a “normal” diet. He hates being helped to eat so now largely feeds himself. He refuses to use the special cutlery and will only use regular spoons and forks.
The speech and language therapy started with single words. Reading seems easy for him and writing is getting there (albeit with the “wrong” hand), but speaking is still very hard. He did say his name yesterday which was a triumph (and very emotional to hear). Singing is still the way he finds easiest to make a noise.
The therapist is brilliant, using his interests to base the work on. He could recognise musical instruments by hearing the words and reading them. By pointing he could show which instruments he can play and I can play. He could link books to their authors (I didn’t know most of them, but he did!). All shows me that his understanding is good.
Physio has made progress too. He can now get out of bed and into his wheelchair using a frame with a platform and wheels instead of the hoist. This is much quicker and less traumatic. With help he is able to stand and even take steps (although it needs a physio to help move his right leg). On Thursday they felt the muscles in the top of his leg start to fire so I hope and pray they are waking up.
Massage and a bit of electrical stimulation are being used on his arm. I keep thinking I can see movement but it might just be wishful thinking.
The worst of it really is his mood. He is very down – sometimes upset, sometimes angry. It is very hard to watch all this, especially when we can’t talk about it. I try to make encouraging comments but he knows how serious things are and the frustration must be incredible.
I tried to go back to work. I managed Monday morning, but when I came back to the hospital I didn’t understand what had happened in his physio. One of the therapists said that they thought his understanding was poor. I couldn’t argue (even though I strongly disagreed) as I hadn’t been there. I went into school on Tuesday morning but just couldn’t do it. After making a show of myself in the staff room I came straight back here. For now I need to be here with him. Thank goodness school are being amazing. I will do my best to go in before the end of term but it’s too soon now.
Once again family and friends have rallied – visiting, taking me for coffee, talking, listening, giving me dinner and generally just being there for us. We are very lucky and feel very loved.
J&D xxxx
15th June 2017
It’s been a much more positive week and I really feel we have turned a corner. Damian’s mood seems to have lifted and he is much more responsive and motivated than he has been. Wednesday was a particularly good day. There were many firsts. I won’t go into details but aspects of his toilet arrangements became much more normalised which makes him more comfortable. Also he was happy to practise his speaking and writing exercises with me, he wanted to go out into the garden here and he watched some TV on his iPad. There was the daily physio session and an occupational therapy session too which both went well.
In the afternoon we held the “Goal Setting meeting” with the therapists where we discussed our hopes and objectives, and what level of recovery they felt was realistic and possible.
They confirmed that the next move would be for Damian to come home (massive relief for me) but that his therapy sessions will continue there. They guess he will be ready to come home in about 5 weeks. A care package will be put in place so that carers will come to the flat for as long as necessary.
Damian insisted on being at the meeting and reacted positively to everything that was said. I felt better about it too. They made no promises as to what the future holds but they did at least give me reason to hope that things will get much better than they are now.
After the meeting he was becoming tired. He’d been in his chair for 7 hours – so went back to bed. It had been a really good day and it was made extra special by Jill bringing a meal in for us both. It was wonderful to eat together and for D not to have hospital food.
It was really hot in his room though, and it was difficult for him to get comfortable. He had started using the controller to set the angle of his bed himself. I left him at about 8. Later they phoned me to say he had fallen out of bed. Obviously, I was worried but they said he hadn’t got any injuries and that he was back in bed and comfortable.
On Thursday morning I found out that overnight they had taken him back to the QE to check him fully. He didn’t get back to Moseley Hall until 5.30am so I thought Thursday would be a write-off. I was wrong – he was at “Breakfast Club” at 8 am where he made coffee for everyone! After that we went into the garden for a while before more physio and voice practice. He now has a new bed with sides, but more importantly controls he can get to himself.
After lunch he was ready for his bed and he slept most of the afternoon, but was alert and responsive in the evening again.
I had worried the fall might have set us back a bit but it doesn’t seem to have. He continues to work extremely hard and is totally committed to making as full a recovery as possible. It is wonderful to see him interested in enjoying things on his iPad again, and actually smiling now and again. He never was any good at disguising his feelings and that hasn’t changed…
We still have a very long way to go but I am much more confident about our future now. Again the support and love of so many people has kept us going. We are both more grateful than we can say.
J&D xxxx
23rd June 2017
It’s six weeks today since the first of Damian’s strokes and time for an update. It’s been a very positive week as far as physio and his movement are concerned. At the start of the week I was shown how to use a frame to get Damian in and out of bed. This means much less time waiting for nurses whenever he wants to transfer from bed to wheelchair. Yesterday he was shown how to transfer using only a stick which will be easier again (although that is only with a nurse’s supervision for now).
Walking is improving enormously – the physiotherapist is working really hard with Damian whose effort is immense. A brace on his right foot has made a massive difference and he can now walk with almost no assistance – just the physio checking his balance. Practice is making all the difference and she has to intervene less every day.
There is less encouraging news about his arm. I hope that once the work on his leg is consolidated and he can get about safely, there will be some improvements there too.
His speech and language therapist is as dedicated and conscientious as his physiotherapist and has spent an hour with us every day again this week. Whilst his reading and understanding are good, writing is hard and speaking is really hard and he becomes very frustrated. Slowly his confidence is improving and sometimes he manages a ‘yes’ or ‘no’. He is more prepared to practise now than he was and again I am hoping that with time he will find it easier to communicate.
Occupational Therapists are doing a bit more now – he is being shown ways to wash, dress and generally look after himself. I am sure as time goes by they will become even more involved.
He is much less fatigued now, and keen to spend time in the garden and to go for walks. I am getting used to pushing the wheelchair and it is giving me a great work out. We have been to the pub next door a few times, and spending an hour in there with family and friends gives us both a huge boost as it feels as though we’re doing something normal.
His mood is generally much better now – and I can see it brighten when he does well in physio, and darken when the words just won’t come. He remains stubborn and determined though. Mostly that motivates him to improve but sometimes he takes risks. As I type this, he’s just come back from the bathroom where Tiger (one of the nurses) caught him as he almost went A over T trying to stand without his foot brace on.
Anyway – generally things are moving in the right direction. I am technically back at school next week. I’m not doing any teaching but still have quite a bit to do before the end of term. I will be here as much as I can – his physio is going to timetable him at 9am every day so I can be there, then go in to school mid morning. School have been incredible – I am very, very lucky. I had a really nice email from the Headmaster the other day which was so kind and supportive.
In all the gloom and misery of what has happened, we can see just how fortunate we are to have the amazing doctors and nurses, the therapists, our families and friends. We can’t thank any of them enough for what they’re doing.
1st July 2017
Damian has really turned a corner this week and for the first time we are feeling optimistic and confident about the future.
Walking continues to improve. There is now mobility in his knee as well as his thigh and he is able to walk (carefully) with only a stick for support. He is not supposed to do it unaccompanied, but he has been caught trying a few times (and in a heap on the floor once). His stubbornness and determination can be a double-edged sword.
Over the last four Wednesdays I have videoed his walking. For the first time this week I watched them all back to back and the difference is amazing.
Technically I have been back at school this week but in reality I have only been away from the hospital for an hour or two here and there, other than yesterday (the last day of term) and this morning for Commemoration. I found it difficult being away all day yesterday but Damian was fine and coped perfectly without me.
Tomorrow we are going to have lunch at home. It will be the first time since the original stroke that Damian has been at home. It will be wonderful to be there together even though it’s only for a couple of hours. A friend who happens to be an OT is going to meet us to help us get in, and then come back to help us out. We’ve got friends visiting in the afternoon and family coming in the evening, so it will be a full day.
Probably the biggest change this week is in his speaking. The speech therapy he’s been having has taught him some words and simple phrases and at the start of the week he was starting to use them confidently and accurately. In the last couple of days he has been much more adventurous and used words he’s never done with the therapist. I cannot tell you how good it is to hear him speak – just so moving.
We probably have only two or three more weeks at this incredible hospital. We are both desperate for life to go back to the way it was before, and the longer he stays here and takes advantage of the relentless therapy, the more likely that is to happen. Perversely then I want him to be here for as long as possible. I honestly don’t believe we could have had better care anywhere in the world.
8th July 2017
Firstly thank you for all of my birthday wishes. Obviously it was not a normal birthday, but it was very special to have so many messages wishing me well. Weeks ago, when Damian first moved to Moseley Hall, I had a goal in mind that we would be able to go for lunch with friends, for my birthday, in the pub next door to the hospital. We have been able to get to the pub for a while now, but yesterday was the first time we’d been to eat a meal and we managed it!
Damian’s thoughtful speech therapist had gone through the menu with him and he had practised saying the names of the dishes he wanted. He really struggled during the week, but he went for it yesterday and it worked. I cannot tell you how proud I was of him. He managed so well. It was very tiring for him though, but it was lovely to be with our friends doing something normal.
The week has had its up and downs. Last Sunday we came home for lunch. Just being in the flat, on our own, was emotional but wonderful. He wanted to go into each room and have a look. Going into the dining room where the piano is, with the music he’d been playing still on the stand was really poignant. He didn’t go up to the piano but you could see by the look on his face what he was thinking.
All of the therapy is continuing to go well. Leg movement is going particularly well. Yesterday he was able to move his ankle for the first time. Getting up, walking short distances and managing with washing and dressing are really improving. Speech is steadily progressing too, and he is becoming good at getting his feelings over clearly. Whilst he is sometimes able to move his thumb a little, and he can usually manage a shrug in the shoulder, there is nothing much to report on the arm. They have given him a Saebo Flex device to use for an hour a day. It stretches the muscles in his hand to try to stop them shortening. He finds it uncomfortable and quite distressing to use, but he is going with it in the hope it will allow some improvement. Just before his leg started to improve the muscles in it started to “flick” quite strongly. They still do for a while when he gets up in the morning. His arm has started to do the same so I really hope that we will soon start to see some progress.
Whilst the medical care we have received at The QE and Moseley Hall have been incredible, the “advice” we’ve had for other aspects from so-called professionals has been pretty dire. The woman who came last Friday to give us advice about benefits we might be entitled to, given our income has pretty much halved overnight, was particularly useless. She spoke at us for an hour (my head was spinning) with no clarity but she promised to register our PIP (?) application. On Tuesday she phoned apologising for missing our meeting. I said she hadn’t missed it, so she asked what she had promised to do for us. It didn’t inspire confidence. On Wednesday she phoned again to say she had had to go on leave because of a family emergency, so she would no longer be handling our case. I was pretty p*ssed off so I wrote to the matron at the hospital. She put us in touch with a much more ‘switched-on’ woman who made the application with us there.
Then we finally met the social worker who has been assigned to us. Her job is to organise the care package for Damian when he comes home. She was useless too, and frankly I don’t think she was used to dealing with people in our situation. We came away feeling that we wouldn’t have access to any care as we won’t have any spare money Between us we’ve paid tax and NI for nearly sixty years without a break and now we actually need a bit of help we’re probably not going to get it. Don’t get me started (but our MP had better brace herself…..)
Another reason we are feeling a bit unsettled this week is that discharge is looming. Whilst part of me is desperate to get home, part is nervous about being on our own. I know therapists will be coming to the flat but we have had the safety net of the hospital staff for so long I can’t imagine coping without them. It will have to be faced, and it looks as though it will be sooner rather than later. Projected discharge date is 17th July.
Anyway I’ve rambled far too long. Thanks again for the birthday wishes and of course for all the messages for Damian. They are appreciated enormously. Thank you xx
14th July
It’s nine weeks yesterday since the first of Damian’s strokes. This part of our journey seems to be coming to an end. We are being prepared for discharge – hopefully on Wednesday if the Social Worker does what she promised she would and gets a care package in place. This experience has been a massive learning curve for me and my understandings of the NHS, Social Services and the benefits system (not to mention the attitude of our bank) have all changed beyond recognition. This is probably not the place to vent but of all those organisations only the NHS actually treats us as people with human needs and emotions. The rest rely on computers to coldly go through their list of limited options and shoehorn us into a category that suits them.
Of much more importance is Damian’s progress. His leg is still improving with some ankle movement returning. We’ve been given exercises to continue at home which will strengthen his muscles and will hopefully mean he will not need the ankle brace for ever. The wheelchair is used only outside now. Last Wednesday we had a home visit with an occupational therapist who checked he could get in and out of bed, his chair, the shower and the bathroom. Whilst he will need help with some of this (hence the care package) he managed well and it was wonderful to see him at home.
His speech therapist has continued to push him and he is starting to use full sentences, ask questions and join in conversations. It’s all very difficult for him and an enormous effort but we will carry on the work at home and we will soon start with a new team of therapists so I hope he will continue to improve. I’m keen for him to get to grips with a QWERTY keyboard again too – something we haven’t even really looked at yet.
I am trying to keep positive about his arm but once again there’s nothing to report. He does still have a good range of flexibility most of the time but there’s no real movement yet. Sometimes he can twitch his thumb a little but nothing else.
Damian’s mood seems to have been better this week – he remains determined, hard working and largely positive (at least when he is with me). He is enjoying the company of some of the other patients and many of the staff here and we will miss them terribly when we go home. I have to confess that I am quite worried about the change that being at home and on our own will bring. The staff at the hospital are being incredibly supportive to both of us though and I know things will be OK eventually. We have many friends and a very supportive family so are incredibly lucky.
The week ahead will be another milestone and, all being well, the next update will be from home and not the hospital.