My partner had a stroke (Part 2)- Coming Home
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 second instalment covers the time when Damian left hospital to come home.
19th July 2017
Today’s the day. We’re going home.
22nd July 2017
We are home. To say it has been an emotional and significant week would be an understatement. At the beginning of the week, we were hoping to be discharged on Wednesday but as the social worker (useless IMHO) hadn’t done her paperwork I knew it would be delayed. To be fair it was only by a day but Damian was very disappointed.
The week started with more therapy and Damian got more and more excited at the prospect of coming home.
We enjoyed the last full day until he tumbled in a meeting with the Stroke Association ladies – nothing serious – he stood up without placing his right foot and fell in slow motion onto a chair. Because the room was small it was awkward to get him up again. There was no damage done and he wasn’t hurt but there was loads of paperwork and a “huddle” meeting to find what had happened. He was worried it would affect the discharge but it didn’t. I hope it will make him more careful.
Thursday came and we packed up everything. After lunch we left. For me it was one of the most emotional things I have ever done. I have had such faith in the staff at the hospital and they have been so caring, compassionate and friendly that the thought of not having them around us all the time was almost too awful to contemplate.
The first care call was at 4 in the afternoon. One of the managers and a carer came. They assessed our situation and decided what we need. I think it will be fine, and so far it has been. Instead of four visits a day they are just coming first thing and last thing. That suits us well I think, especially as I’m on summer holiday so will be around during the day.
I didn’t sleep at all on Thursday night. I was listening for any sound at all from Damian (who slept like a log). Yesterday I had to leave him for a couple of hours to go to the bank and I hated it. He tends to be over-confident with his walking and I made him promise not to get up. I felt MUCH better when I got home as he was in the same place I left him (although I can’t guarantee he hadn’t moved in the meantime). Also the bank have come up trumps with sorting our mortgage and more than halved the payments. It will make a huge difference to us financially, and once the PIP is sorted we should be able to manage OK.
We have done a few speaking, writing and physiotherapy exercises at home and will continue to do them. Our new speech therapist is coming on Monday, but we’re not seeing the new physio until 9th August. The rest of the time will be spent catching up on the ten weeks of telly we’ve missed (that won’t take long). I was really cheered up last night when we watched the John Williams Prom. While we were at the QE I had put music on most of the time. Once Damian could make his feelings known he hadn’t wanted it. Every time I asked he said
“no”. If I didn’t ask and just put it on, he turned it off. Last night though, I put the Prom on. He loved it – absolutely loved it.
There’s still a very long way to go. We aren’t yet settled back at home but we will be soon. I am looking forward to the new set of therapists starting and am hopeful that once we’ve got ourselves organised here there will be a new spurt of improvement.
Onwards and upwards.
J&D xxx
12th August 2017
Three months ago today Damian had his first two strokes. We’ve been home for three weeks and I haven’t posted an update for a while so …
Being home has been a mixed blessing. Of course it is wonderful to be in our own environment but losing the support of the hospital staff has been harder than I thought. We have had carers twice a day (first thing in the morning and last thing at night) and that certainly helps although they won’t be here for much longer.
The powers that be are still not happy for Damian to use the shower which is a cause for concern. I hope that we can sort this before the care package ends. Some more physio might strengthen his leg to the point where it will be safe to go into the shower, or we might need to make a few alterations to the bathroom – either way it needs sorting, and soon.
Speech therapy at home started immediately and the new therapist comes twice a week. We work at it every day in-between too, and there is a noticeable improvement in reading, writing, typing and speaking. He is now able to respond to text messages on his phone which is reassuring when I go out.
He had his first physio session this week but the therapist will come only once a week. I’m a bit disappointed by this – I can tell that there has not been any improvement in his mobility since we left the hospital and I was hoping for a more intensive approach to his therapy. There are a couple of courses he is being referred to – a 12 week intensive course of multidisciplinary therapy at Moor Green (back at Moseley Hall Hospital) and a 10 week course at the National institute of Conductive Education. Both of these will be fantastic but neither will start imminently and so we will need to push for something more in the interim.
One bit of great news is that Damian’s employer has decided to keep paying him a portion of his salary. This is a huge improvement on the Statutory Sick Pay we thought we would get and is a weight off our shoulders. Several of his colleagues have visited and they clearly care about his progress enormously. Someone from HR is coming on Friday to see how they can best support us. We are enormously grateful to them for being so understanding.
His mood is generally positive but fatigue is still a big issue. We’ve seen family and friends regularly which is wonderful but it takes a lot for him to be persuaded to go out. I hope when the fatigue subsides he will spend less time in front of daytime telly . A diet of Heartbeat and Bargain Hunt is not doing my sanity much good.
Anyway that’s enough for now . There is a full week ahead of appointments, therapy and of course his birthday. I’ll report more when there are developments.
Love as always
J&D xxxx
28th August 2017
The summer holidays are coming to an end – and I can’t say I’m sorry to see the back of them this year. Some sort of normality will come as a massive relief and I am really looking forward to a new term at school.
The last couple of weeks have been mixed. He has been having two speech therapy sessions a week and his communication skills are improving well. Speech is clearer, words come a little more easily and writing and typing are getting better every day. Last time I posted an update Damian had had one physio session since leaving hospital. The second one was cancelled. To say I was disappointed would be a massive understatement. Following some intervention from our MP (!) he has since had one other session from the NHS team and it seems they consider one session a week is sufficient (although by my reckoning he’s had two since 20th July which is far from one a week). Anyway – his mobility had taken a turn for the worse and I could not stand by and watch any deterioration.
Following some advice from the Stroke Association we made some ‘alternative arrangements’ and I am delighted that things have been moving positively again. Our wonderful GP made an urgent referral to the Spasticity Clinic at City Hospital and 24 hours later he had botox injections to his arm and leg which have made a massive difference. The injections have made his muscles more relaxed and he is walking much more fluidly and with a flatter foot. His arm now hangs in a more natural way and we are working hard on stretches to try to get a bit of recovery there too.
At the weekend we’re off to Tilling for the annual shindig. I was doubtful that we would be able to manage it this year but we’re going to do our best to do as many “normal” things as possible. It’s a much shorter stay this year and I think Damian will just come to the lunch but it will be wonderful to get away albeit for just a couple of days.
It’s been good to see friends and family over the last few weeks. Lots of Damian’s colleagues have visited and it does him good to catch up with his work gossip. They are being very supportive and are as keen as he is to get him back at work as soon as possible. We know it will be a long road with lots of very hard work but he is as determined as ever to get there.
We try to set weekly goals. This week’s goals were to walk round the church next to the flat (achieved Thursday) and to go to the supermarket (achieved Friday). It’s vital that we go out every day. We haven’t used the wheelchair for a couple of weeks and we hope the stick will be unnecessary soon.
As I go back to work we’ll be starting another new phase in Damian’s recovery. The care package is coming to an end so I don’t know what help we’ll get with day to day stuff, and we’re still waiting to hear when the multi-disciplinary therapy course will start (soon I hope). Lots of unknowns but we’re both learning patience… (Damian is much better at it than me).
J&D xxx
8th October 2017
It’s been a while since my last update on Damian’s recovery, and I suppose it is to be expected that there will be less news as time goes by. He has made some good progress in the last month or so and we are getting used to a new (but hopefully temporary) way of life.
Last time I posted we were about to go to Rye for the Tilling Gathering. We made it and I am delighted that we made the effort but it was immensely hard work. As beautiful as Rye is it must be one of the most unsuitable places to go for anyone with mobility issues. It’s hilly and cobbled and the pavements aren’t wide enough for a wheelchair. We found a lovely room where we were well looked after and with the help of good friends we managed to get around as much as we needed to.
The following week I went back to work. For me at least it is wonderful to be thinking about other things but the days can be very long for Damian who is getting very bored stuck at home. His mobility is slightly improved, and his stamina is getting quite a bit better. Most days he goes out by himself and walks round the church next to the flat.
The physio provided by the local Health Authority is, I’m sorry to say, pathetic. I can’t bring myself to go through the battles we’ve had/are having here but they are failing Damian, me and the staff at the hospitals where he had 10 weeks of incredible therapy. His physiotherapist comes, at best, once a fortnight and seems to think leaving a sheet of exercises for Damian to do himself is enough. The Occupational Therapist came once and discharged him. To be fair his speech therapist comes twice a week and seems the only one to be conscientious.
We are extremely lucky, that with the help of friends we are able to afford extra physiotherapy which is getting us through.
I hope that next month a course of intensive therapy will start back at Moseley Hall which will get things going again. Apart from anything else it will give Damian a structure to his day as well as lots of speech, physio and occupational therapy.
Damian’s employer’s HR people have visited us a couple of times and they are being fantastic. It’s good for him to keep a connection with his colleagues and he really enjoys their visits. He is determined to get back to work and they are doing everything they can to make it possible.
Our care package is coming to an end and the social worker is coming on Tuesday to decide what happens next. I am hopeful they will continue to fund a morning carer which we will need for the foreseeable future. I think that’s about it. We are pottering about in the flat, able to pop to Harborne for the odd brunch and go for a drive now and again when we feel the need for a change of scene. Damian’s fatigue means we’re never out for long but our friends, as always, are understanding and there when we need them.
J&D xxx
11th November 2017
Six months ago our lives changed out of the blue and beyond recognition. I wish I could say things were getting back to normal but I can’t. I know that eventually a new “normal” will emerge but I have no idea what that will be like.
Damian is continuing to be stronger, more hard working and more determined than ever. We are throwing everything we have at getting back as much as we can after his strokes. We couldn’t possibly afford it without the help we are getting and I am overwhelmed by the generosity of some very special people.
The therapy sessions are really ramping up now and he has speech therapy 3 or 4 times a week and physio at least 3 times a week. I can notice some real changes in his speech, especially when he’s not shattered. His mobility is continuing to improve too, thanks, in part, to a new fancy foot brace. I have come to realise though that of all the effects of this wicked, cruel stroke, the fatigue is the most debilitating. We find ways of coping with only one working hand. He can walk short distances slowly and carefully, and we can use the wheelchair if we need to. His communication is difficult but with effort and patience he can get his points across. I don’t know how he does it but most of the time he remains cheerful and optimistic.
Last weekend we went to stay with Paul & Shaun in Wales and it was lovely to spend some time with them and have a complete change of scene. Damian coped well and we both felt better for the rest and the company.
This coming week is extremely busy with appointments including an assessment for the Moor Green course. It is supposed to be excellent and takes place at Moseley Hall, where we know lots of the therapists so I hope it lives up to its reputation. On Friday we are supposed to be going to see Sunset Boulevard at the Hippodrome. I am keeping everything crossed that Damian will have the stamina to go.
We are seeing his colleagues on Wednesday as they have invited us to join them for a curry. His work are being incredibly supportive and it will be great for Damian to see them and for them to see how he’s doing. My work too are being amazing – letting me fit my teaching around appointments and come and go as I need. I miss being fully involved though. I hope that once the Moor Green course starts I will be able to throw myself back into work.
Much of the time I feel very sad about everything we’ve lost but I am also aware just how lucky we are. We are lucky 
that he survived at all. Many don’t. We are lucky that we have over 29 years of wonderful memories and experiences together. We are lucky that he got such amazing treatment in the first crucial weeks. We are lucky that we have such incredible support from our family and friends – and we are lucky that he is continuing to improve thanks to the amazing therapists who see us so often.
The person who helps me most though is Damian. He caught me in a down moment yesterday and told me in no uncertain terms that we must just go on, so that’s what we’re doing, going on.
xxx
16th November 2017
A quick update:
Damian has, somehow or other, sprained his ankle. It is very swollen and his toes are bruised. Obviously this is a bit of a setback as far as his mobility is concerned. Our physio has been several times to help us sort it: we’re doing ice packs and he’s supposed to keep it elevated as much as possible.
The assessment for the multidisciplinary course went well and he will be starting there in January. It starts with sessions twice a week for three weeks where they will assess his particular needs, then a bespoke timetable will be created for him. I was slightly disappointed it doesn’t start for a few weeks, but on reflection waiting a while might mean he is less fatigued when the course starts and he’ll get more out of it.
We went for the curry with Damian’s workmates on Wednesday evening. It was really good for him to see them, and he managed a couple of hours of chatting and eating. It was really lovely.
I’m still not sure about the theatre tonight – he has his Conductive Education assessment this afternoon which may well tire him out, but we’ll see. Mary is here for a few days which is a great help, and I hope we’ll have a quiet relaxing weekend after a very hectic week.
J&D xxx
31st December 2017
A quick update on Damian’s progress. We had a quiet but lovely Christmas – just went to mum’s on Christmas Day for lunch, otherwise we’ve been pottering about at home, seeing friends and eating and drinking far too much.
I am pleased to say that Damian is doing really well. After a few weeks (or months) of very little progress, the last couple of weeks have seen a transformation in his mood and his outlook. He is walking much more easily and with more energy. He is much more interested in what’s going on and he is starting to be really involved in life again. He is talking a lot more too – still with difficulty, but he perseveres and always gets there in the end.
I cannot say I am sorry that 2017 is nearly over – in fact I am delighted. It has been the most difficult year of our lives and we are both thrilled to see the back of it. Things can only continue to improve in 2018 and with our family and friends’ continued love, help and support we will be in a totally different place a year from now. Onward and upward.
Happy New Year
J&D xxxx
21st January 2018
I thought I’d leave it for a while before any more updates on Damian’s progress but so many things have happened this weekend I will forget if I don’t do it now.
Firstly he has continued to improve steadily since Christmas – his vocabulary is increasing and with it his confidence; he’s even been able to talk on the phone to his dad.
I noticed this week he had started putting his lunch and breakfast plates in the dishwasher. It sounds trivial I know but it was a first.
Yesterday when I got back from Waitrose he was listening to some opera. Then later while I was working he did 
some laundry. I also heard him play a few chords on the piano. He denied he’d played it when I asked him later but he had certainly gone to it and tinkled a bit. I believe and hope this is massively significant.
That evening we went to a friend’s for dinner and I heard him laugh – properly laugh – for the first time. He also wasn’t ready to leave until 9 pm – a good hour later than he’s been out before. Today for the first time since his stroke he wanted to wear his watch, and then another first – he asked to listen to the radio.
So many firsts all within a couple of days. I don’t know if it’s relevant but we got the letter yesterday from the intensive rehab course. It starts with a three-week induction course (2 days a week for 3 hours or so) a week on Tuesday. Whatever the reason I am just delighted at how things are going. We still have a very long road ahead I know, but he is getting there. Thanks again to everyone who’s sponsored me and my family for the Stroke Association run in March. It means a great deal to all of us.
J&D xxx
29th January 2018
It’s a big day today: Damian’s intensive course begins. It feels like a new stage in his recovery and we are both hoping for great things. For the next three weeks he will go for the starter programme which is twice a week for a couple of hours – increasing to four hours by the end. After that will be a bespoke course – I think three or four days a week lasting for about three months. During the starter programme they will assess his needs, abilities and his aims (still very definite about going back to work ASAP) and then work out what will help him achieve his goals.
We had thought that the speech therapist would stop coming when his course started but as he is making such good progress she is going to carry on twice a week. I can’t tell you how delighted I am about this – she is wonderful.
I am (very slowly) getting back into training for the run in March. Our family team is growing by the day. We are being joined by Fiona, Vickie, Neil and Dominic. Again the whole family is bowled over by the generosity our wonderful friends in helping us to raise money for a fantastic organisation, who offer real practical help to people like us.
More when I see what’s what at Moor Green.
J&D xxxx
17th February 2018
A quick update on Damian’s progress:
On Friday the induction course at Moor Green finished. He’s been going twice a week for three weeks to learn about Moor Green and what we can expect from it. I went with him on Friday. Like the rest of Moseley Hall Hospital it was all a bit chaotic and tatty but run by the most wonderful, dedicated people. I feel that we are incredibly lucky to have their help and support.
At the end of the session on Friday we met four “buddies” – ex clients of the course, all of whom have had brain injuries of one sort or another. It was really inspiring to hear how much they loved Moor Green and to see how incredible their recovery had been. It was particularly moving to meet Cameron – a stroke patient who had not been able to speak or move his arm or leg for a year. He played his guitar and sang and to hear him speak you would never know what had happened to him.
Over the next few weeks Damian will have a course of one-to-one assessments after which they will design a timetable for him. That programme will begin on 26th March and last for 8 weeks. He’ll then have a break, more assessments and have his timetable tweaked. It will be very hard work and tiring but I think we are both looking forward to it.
On Thursday he had his FES (Functional Electrical Stimulation) machine fitted to his leg. It has a switch under his ankle which fires when he tries to walk, lifting his leg a bit. It makes quite a difference to his walking – steps are much more efficient and less tiring. It will take a bit of getting used to and is a bit of a faff to set up but will be worth persevering with. Hopefully it will mean he won’t always have to wear his leg brace.
His physio and speech therapy have been continuing at home too. He is starting to feel sensation in his right side and is gaining more control over his arm. Improvements are very slight but encouraging. His speech is still difficult but vocabulary and sentence construction are coming back slowly.
I am still hauling myself round the reservoir in an effort to train for the run next month. We are overwhelmed by the support of family, friends and colleagues.
Friday was our 30th anniversary so to celebrate we went to Simpsons yesterday for lunch. It was pretty special and I asked Damian if he wanted to get married. It has never really seemed to matter before – we had legally become “next-of-kin” years ago but after everything that’s happened I felt we should be acknowledged properly as a couple. He said “yes” so we are going to work towards Summer 2019. Damian will be two years post-stroke and I just know we will want to celebrate his recovery. He will also be 50, so a party will definitely be called for and we might as well make it a good one!
J&D xxx
12th May 2018
It is a year today since the first of Damian’s strokes which have changed our lives completely. In some ways it seems like yesterday – I can remember every detail of parts of that ghastly day – and in other ways it seems a lifetime ago, as I can barely remember what it was like before.
Since my last update, Damian has come on in leaps and bounds. The course at Moor Green is just amazing. His speech and communication are getting better and better. More importantly his mood and attitude are vastly improved. He goes four days a week and has quite a full timetable. At first he was exhausted by the time he got home but his stamina is much better now.
Robbie, Damian’s physio, still comes three times a week and his dedication is paying huge dividends. At last Damian’s arm is getting some movement and he is able (sometimes) to squeeze his fingers. He was very reluctant to use the FES machine on his hand at first but now he can see changes happening he is much more willing to put in the work. The leg FES has not been as successful as we hoped – the pull on his foot makes him very unsteady without his leg brace – but we will keep trying. His walking speed now is amazing and unless he’s tired the stairs at the flat are no problem.
Damian’s employers (like mine) have been extremely understanding and generous. On Wednesday this week his manager retired and Damian was invited to the lunchtime do to say goodbye to him. It was the first time he had been to the office and his colleagues were really delighted to see him. His chair and desk are still there waiting for him to go back. It will be a good while yet but he is determined to get there. It was great to be able to thank his manager for his kindness and generosity.
A significant issue is Damian’s music. I am delighted to say that he is now listening to music again. It’s lovely to get home from work to the strains of Mozart rather than crappy daytime telly. He really enjoyed the choral concert at school the other week and is keen to sing in it next year. He hasn’t played the piano (he says, but I have some suspicions that when I’m out he has a go). When Damian was in Moseley Hall there was another young stroke survivor who was a music teacher and he is now at Moor Green too. There’s another bloke who plays the guitar as well. One of his therapists is going to get them together each week with Damian on piano. It won’t be his kind of music but it’s a start and it would mean the world to both of us if he could start playing again.
I think that’s all the news for now. We are tottering on, making small improvements every day. It’s frustrating, hard work and tiring but the little victories make all the effort worthwhile.
J&D xxxx
19th July 2018
It’s a year today since Damian came out of hospital. I can’t believe how quickly the time has gone. There hasn’t been an update on his progress for ages so I thought I’d better post the latest. Whilst he has improved enormously we still have a long way to go. He is working incredibly hard and always with such determination and good humour.
As well as the physio and speech therapy at home, he goes to the rehab course at Moor Green four times a week where he takes part in all sorts of classes and therapy; music, tai chi, cookery, gardening, speech and language therapy. They also go out and about to various places to practise using public transport, going into coffee shops etc. Getting out most days and interacting with lots of different people has made a massive difference to his mood and his confidence and I will be very sorry when the course ends in a couple of months.
His speech is still a real struggle, but he never fails to try – wherever we are, and whoever we are talking to he will always have a go.
His mobility is ok – he can walk reasonably well. He is getting a new foot brace soon which was made from a cast of his leg, and we are hoping he can have some surgery before long which would mean he wouldn’t need a brace at all. That would be truly life changing for us as he would be able to get up, go to bed and get in and out of the shower without help.
The arm is coming slowly. His incredibly dedicated and conscientious physio is getting results that others have told us were very unlikely. He can now lift his arm and even squeeze his fingers, and work is starting on serious hand work to get some function back. I know he will do it – we won’t stop trying everything we can to get back as much of what he’s lost as possible.
Still he is being supported by his employer and we are working towards some kind of return to work at some point. Their generosity and faith in him have made a huge difference to us, not least in allowing us to get the extra help at home.
The good weather, the fact I’m off school and his improving stamina mean we can get out and about a bit more now and we’re seeing more of friends and family. We are looking forward to a few days away with the family soon, and a trip to Lugano at the end of August. I can’t say things are normal or as we want them yet but we’ll get there!
J&D xxx