The hand and arm situation has been a very positive change during this difficult time. We have also been incredibly lucky to be part of the Silverlining Charity group. Throughout lockdown we have met with the West Midlands group several times each week for a general catchup session, quiz nights, food club and film club. It is incredible to spend time with such inspirational, supportive and positive people.

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The university groups Damian belongs to (a Conversation Club and, more recently, the Book Club) have been a great lifeline to him. They have continued so far throughout lockdown online but are taking a break for August. He will really miss them, but I'm confident they will start again in September.

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Physio with Robbie has started again and while the progress is painfully slow, it is there. Walking is more confident and more stable. The speech therapy has continued too. He has come to the end of this session, and we both know how lucky is is to have had it for so long, but we are really hoping it will continue. He has a review in September, and after a serious word from his speech therapist, he has been working really hard at writing (on his iPad) and the worksheets he has been given. His reading has definitely improved - and I often now find him reading - not quite for pleasure as it is such hard work, but he is making great efforts. The writing/typing is still very, very hard work. A couple of sentences can take him an hour. It is not surprising that he gets very frustrated, but for now at least, he is working very, very hard at it. 

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Of course our holiday has been cancelled, and our nephew's wedding which was to have been in August has been postponed until next year. This means the diary in August is looking a bit thin. Thank goodness for the Silverliners. 

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More when we find out about the hand and arm surgery.

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J&D xxx

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12th October

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Yesterday we had a setback. Damian had been to the gym with his physio and by all accounts had had a good session. We then had our usual Sunday Zoom family chat and then I nipped out for a coffee with Jo. I got home an hour later to find Damian on the floor in a heap. He was hot and clammy and couldn’t get up. His speech had gone too, and he couldn’t answer me. I phoned 999 and an ambulance was here within about ten minutes. I was frantic with worry as I was sure he’d had another stroke. I wasn’t allowed in the ambulance but made my own way to A&E. I pleaded with them to allow me in but they were having none of it. I was “welcome to wait here for news” which was particularly kind as it meant standing outside without a coat. I didn’t care about that, I just wanted to know what was going on.

 

I phoned Mary, who contacted Neil, who came straight away. It felt horribly familiar. Eventually my phone rang showing Damian’s number. It was the doctor who was examining him. Of course they knew nothing about Damian’s usual mobility or speech so he asked me to speak to Damian (on the phone) for a minute and then say if it was normal. It was, so was clearly much improved from when I’d last seen him wheeled into the ambulance. That was a relief. I was told that he would need a CAT scan and more tests and it would take a couple of hours. Neil and I came back to the flat and waited. After an hour or so the phone rang again. The scan didn’t show any sign of a stroke, and they thought it must have been some sort of seizure or fit. Apparently this is not uncommon after a stroke. Anyway they were referring him to a neurologist who would phone with an appointment, discharging him and I was to go and collect him.

 

We went straight away and picked him up. I really wanted to speak to someone to get some reassurance and ask questions, but a nurse just wheeled him out, got his name wrong and that was that. I was very relieved to see him. Although he was very tired, weak and breathless, he was speaking fairly normally. He was very sore and his mobility was vastly reduced but I think that is because of the fall rather than anything else.

 

I haven’t gone to work this morning - I daren’t leave him until I’ve seen he is able to potter around the flat safely. He was hungry this morning and has wolfed down his breakfast but now gone back to sleep.

 

I am hoping and praying that this is just a temporary blip and that his bruises and soreness will quickly improve and he’ll be back to normal.

 

While I’m updating - a couple of weeks ago he had a review at the Royal Orthopaedic with the hand specialist. He was very happy with Damian’s progress and is going to go ahead with some much more significant surgery in January. It is hoped this will give him a bit more flexibility in his arm and some rotation in his wrist. If that all goes to plan, there may be more surgery on the actual hand at some point in the future.

 

Other than yesterday’s incident things are generally going well. We are extremely fortunate that his speech therapy is continuing (they are truly wonderful people) and Robbie continues to get him stronger and fitter. Yesterday was a terrible shock and something I have feared since this all started but with a bit of luck we will soon be back on an even keel.

 

J&D xxx

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26th October

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A quick update after Damian's fall:

He is a lot better after a very worrying day or two. We got the appointment through to see a neurologist for 17th December - and it was a phone consultation. I was fairly unhappy at that on two counts: firstly I think it's too long to wait under the circumstances, and a phone consultation with a patient suffering from severe aphasia following a brain injury is next to useless. Anyway I spoke to our GP (who is a wonderful doctor) and she said she would write to the consultant.

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On Thursday last week we got an a phone call offering us an appointment the next day. I was very pleased and am extremely grateful to our GP. The consultant was helpful and understanding but not able to confirm if Damian had had a seizure or not. There was no evidence of any damage on the scans which suggests it wasn't another stroke. They tested his lactose level which rises above 2 following a seizure. His result was 2.3 which is borderline and therefore inconclusive.

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He said that meant he didn't want to medicate at this stage. He will see us again in six months but I am to contact him straight away if anything else happens. If it was a seizure he said another was very likely sooner rather than later. It's a bit worrying to have that hanging over our heads, but at least I feel he is "in the system" and will be seen quickly if there is another incident.

In the meantime he is still a bit sore - I suspect he's cracked a rib - and more tired than before. He is reluctant to go anywhere or do much, and it occurred to me that it might be a lack of confidence rather than actual fatigue. Still, his physio has started up again and he is going back to the gym tomorrow. Fingers crossed that will give him a bit more confidence and energy.

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It's half-term so I am off for a couple of weeks and can keep an eye on things. I had hoped we would get to go away for a few days but what with everything that's going on it looks like we'll be staying here. Probably for the best.

Thanks so much for the messages.

Love

J&D xxx

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31st December

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A quick end of year update on how things are:

Damian is in quite good form at the moment. He seems to have recovered fully from the incident in October - he’s back to using the stairs and stubbornly not using his stick. His arm is very stiff as he hasn’t had any Botox since June in the expectation that he will be having more surgery on his arm in January. Not surprisingly we haven’t had a date yet, but I will get on to the hospital next week to see where we are.

 

We have had some problems with the carers. They were arriving later and later and some of them were unfriendly and unhelpful. Damian gets very agitated by time - he seems very aware of it - and sometimes he has early morning physio appointments so he must be ready for them. There were a few “frank exchanges of view” with the care company and things seem to have improved.

 

His speech is progressing slowly. The therapy is continuing (for which we are enormously grateful) and he really enjoys seeing the therapists online. Reading and writing require a huge amount of effort. Progress seems painfully slow but he insisted on signing all the Christmas cards we sent and I noticed some improvement.

 

In December he did quite a few virtual sessions with students at BCU (Birmingham City University) which he really enjoyed. He was exhausted but buzzing after the sessions and I really hope they will be able to develop and increase his role. Feeling as though there is a reason for him to get up and do something useful makes a massive difference to his mood. He still gets a massive boost from the Book Group and Conversation Club at BCU and we both love the online meetings we have with the Silverliners. Of course we miss seeing them face to face but the weekly catchup, film club and the monthly quizzes are always high spots.

 

Physio is continuing and Robbie is doing a great job developing and building Damian’s strength. The fall in October set things back a lot but physically he seems to have recovered now, although his fatigue continues to be an issue. He is as perky as anything when he’s with therapists or carers and comes alive when he’s with friends and family but he gets very tired very quickly and bedtime seems to be getting even earlier. 8.30 is normal but sometimes he goes to bed before 8.

 

It’s hard for me to see much difference from where we were a year ago to be honest. People who see Damian infrequently say they can see significant changes and I’m sure they’re right but we still have a very long way to go. I sometimes wonder if I push too hard and if we should just learn to accept what we have now. I don’t know what the right thing to do is but I can’t do nothing and for as long as we have the energy and resources to keep battling to get some of what he’s lost back, we will.

 

I’m sure none of us are sorry to see the end of 2020. Work, close friends and family have kept me going but there have been many challenges for all of us. I am very sad to say that I feel more distant from some of our friends this year. Being unfollowed on FB and slapped hard on Twitter for daring to post some of my thoughts on various things has hurt and has certainly taught me to keep my virtual mouth firmly shut. There have been some highlights though: reconnecting with my Clarendon friends back in February was wonderful and I hope we can get together again soon. I have formed a strong friendship with someone I have never met and getting to know her, and her giving me the space to vent and moan has been one of the best things to come out of the year.

 

And so we end the year in tier 4 - back in virtual lockdown, unable to see anyone or go anywhere. The vaccine is giving us all hope though and they say things are always darkest before the dawn. Here’s hoping the sun rises on a safer, happier and healthier 2021.

 

J&D xxx

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31st March 2021

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I haven’t written an update on Damian’s progress since the New Year and there are a few things to report. 

 

Firstly, the surgery scheduled for January was, unsurprisingly, cancelled. The consultant spoke to us though and was very apologetic. Damian’s arm was very stiff and quite uncomfortable because he has been without Botox for so long. He promised he would see Damian as soon as he could, and, true to his word, he is doing the procedure on Monday 12th April. The surgery is basically a tendon transfer procedure which should make his arm more relaxed and hopefully more comfortable. If it goes well to may give him some rotation in his wrist which would be incredible. 

 

Speech and physio have been continuing and even I can see that he has made really good progress. He is much more prepared to chat with people, and even though it’s very difficult sometimes his confidence and courage means he never gives up. I know I’ve said it before, and I’ll probably say it again but we have been SO lucky with the speech therapists he has. He finds writing incredibly difficult but I’ve seen some improvements there too. He is becoming more willing to practise and while I find it really hard to help him he can now usually get at least the first couple of letters of each word. Believe me this is massive progress.

 

Robbie is really pushing him in his physio sessions. We’ve got an exercise bike and some weights and his strength and stamina are noticeably improving now. I dare say recuperation from the surgery will hold things up for a bit.

 

After some “frank exchanges of view” with Damian’s care manager, we now have a wonderful carer who comes almost every day. She is French and just lovely. She beams as she comes in and calls us her family. I just hope she stays as she and Damian get on so well.

 

We continue to get a lot from the Silverlining meetings. We see quite a lot of them online and it feels like chatting with old friends. Before his stroke Damian was very keen on photography. He hasn’t touched his camera or shown any interest since his stroke. I was delighted and amazed one day last week when I came back from school and he wanted to get it out again. It’s not easy for him but he’s been giving it a go and it is wonderful to see him interested again. There is a Silverlining photography group which he’s joined and I hope that they will encourage him to keep working at it.

 

The other bit of news is that he has done some training at the University of Birmingham to help with admissions. He really enjoyed the training and I hope that it will lead to some work. The classes at BCU continue to be a highlight of his week.

 

As we start to come out of lockdown, things seem to be moving again, and mostly in the right direction. We were both lucky enough to have had both our vaccination shots thanks to our GP. I will post a brief update once he’s had the surgery.

 

J&D xxx

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7th April

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I have some very disappointing news about Damian’s op. It will have to be delayed because of an “administrative error”. Apparently he should have had a pre-op appointment before isolation started. He is going for it tomorrow, but as this will break our isolation, the procedure can’t take place on Monday. We are both extremely disappointed and I am pretty annoyed but there’s not a great deal we can do.

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I don’t really understand the isolation requirement. He was to have had COVID tests on both Friday and Saturday anyway. He has had both doses of the vaccination. It seems pretty tough to put him through more delay and uncertainty.

I have no idea when he will be called but I hope it will be sooner rather than later.

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J&D xxx

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8th April

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Common sense has prevailed!

I just couldn't understand Damian's operation being delayed. It seemed ridiculous that the act of going for his pre-op would mean his isolation was invalid so I phoned the consultant's secretary ay 9 am this morning.

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She explained that the problem had arisen because a pre-op nurse had misread his notes and thought he had had a pre-op in January 2021. The mistake wasn't discovered until yesterday so he was booked in for a last minute pre-op today at 1.45. As that would break his isolation so the procedure would have to be delayed.

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I pointed out that apart from the distress this had caused Damian, it was a huge waste of resources as the surgeon, staff and operating theatre would all be unused. She agreed and said she would talk to the consultant. She phoned back and said that he wanted to carry out the operation on Monday as planned. Damian will now be admitted on Sunday evening and the pre-op will take place on the ward, then he'll have the surgery as planned on Monday morning.

It is such a relief and Damian is just delighted. He now needs Covid tests tomorrow and on Saturday and, hopefully, that will be that!

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J&D xxx

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13th April

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Damian has had his op. I took him in on Sunday afternoon following the two negative Covid tests for his pre-op. Yesterday morning he went into theatre for the 5 hour procedure at about 9.00. By 3 in the afternoon he was awake - groggy and ravenous but OK. I had to go and collect him at 6 and was very glad to get him home.

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I suppose it's too early to tell how successful it has been and I haven't been able to talk to the hospital about it yet but we have an appointment with the consultant in a fortnight. The arm is certainly hanging more naturally though and his fingers are loose for the first time in years so I am hoping that the signs are good.

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Thanks very much for all of the encouraging messages - they mean a lot.

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J&D xxx

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12th May

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A quick update on the fourth anniversary of the day our lives turned upside down. Damian had the first of a series of three strokes which were to cruelly rob him of so many things: His speech, his ability to read and write, his stamina, and the use of his right leg, arm and hand.

 

Since then he has worked constantly to try to get back as much of what he has lost as possible. Most recently was the surgery on his arm. It is still early days but the signs are hopeful. His arm is much looser and more relaxed which is more comfortable and makes his balance better which in turn affects his mobility. He is able to grip and form a fist (some of the time) and also relax it. Robbie has him practise taking a key and dropping it in a box - something that would have been impossible before.

 

He has not had any Botox injections for many months but he has just had his first appointment with the team at the Royal Orthopaedic Hospital where he had his arm op. Their use of Botox is much more targeted than other clinics he has been to before so I am hopeful that they will help his mobility even more by relaxing some of the spasticity in his leg.

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His speech is improving slowly. At his best he can sparkle and chat with friends and family but an hour of effervescence needs a day or two of rest afterwards. Reading too is slowly getting better but again it is tiring for him. Writing is still very difficult - not least because he can no longer use his dominant hand. He needs a huge amount of help with spelling and word finding. I am amazed how hard and consistently he tries, expertly encouraged and pushed by Ruth and Jenny.

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I’ve been reflecting on our situation now and our lives pre-stroke now seem like a distant memory. I was warned four years ago that we would have to go through several stages: shock, grief, anger and eventually acceptance. The shock has long gone and the grief and anger are duller now than they were. I’m not sure about acceptance. It suggests we should put up with where we are now. No way. We have come too far and been through too much to stop now. Things are certainly different and we both have to accept that they will never go back to the way things were but we have a lot to be grateful for and a lot to look forward to. We laugh a lot - his sense of humour has survived thank God - and he loves seeing our friends and enjoys the many online Zoom meetings he has every week.

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For as long as we get the support we need we will continue to work at recovery and making the most of everyday. To all our friends, family and the experts who support and help us - thank you.

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J&D xxx

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19th July 2021

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We’ve just got home from Glyndebourne. It was a once in a lifetime  experience and we were extremely lucky to get the chance to go. We will remember it forever.

 

Our friends picked us up from home at 8.30 yesterday and we drove down to a small B&B near the opera house. A quick change into black tie (in 32 degree heat) and we arrived at Glyndebourne at about 1. The setting, food, opera and company were just wonderful. A taxi took us back to the B&B at around 10pm. It had been a very long, and, for Damian, a gruelling day. He didn’t complain, and I know he loved the experience but I could also tell that it was pushing him to his absolute limits.

 

His mobility has continued to worsen. He finds walking difficult, painful and extremely tiring. He had some targeted Botox injections a few weeks ago and whilst they have freed his leg to some extent, his toes remain clawed. This causes him immense discomfort when walking and makes it much harder work. I’ve decided that enough is enough. It has been a wake-up call for me and we have to get it sorted out properly. 

 

A year ago he walked round the local reservoir with Mary. Eighteen months ago we had a few days in London. There is no way he could do either of those things now and that makes me fear for the future. Whilst he is still having physio twice a week, we no longer get the regular reviews with a Neuro-specialist that we used to. 

 

I know that if we go through the NHS we will have to wait for months (at least) before anything can happen. I don’t think we can afford to wait so we are going to have to find the money to pay. I’ve made an initial appointment with the surgeon who operated on his leg in 2018 and we go to see him on 17th August. I hope that he will have some answers and that things will improve again.

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I always try to make these posts as positive as I can. I think both Damian and I are optimists in most things. His speech is improving. His enthusiasm for reading and for listening to music is returning. He is learning to cope with his one usable arm and hand. It is his walking which is causing him so much discomfort and making his fatigue much worse.

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I’ll post again once we’ve seen the consultant. Wish us luck.

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J&D xxx

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16th August 2021

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Tomorrow is Damian’s birthday and our 2nd wedding anniversary. It’s been a strange couple of years - not least because of the pandemic. There are many of our friends whom we haven’t seen since the wedding. It is something I feel so sorry about. I’m not sure Covid is the only reason. I know that now we are not easy friends to accommodate: fatigue and the communication problems Damian has make us “hard work” and I am only too aware that some of the views and opinions I have shared on social media cause some people difficulties. Being unfollowed shouldn’t bother me but when it’s friends of long standing who judge me and refuse to allow me freedom of speech it hurts. It causes me sadness and the lack of acceptance and tolerance is something I regret but I make no apology for either of us. I have learned that there are few arenas which exhibit less tolerance than Facebook and Twitter and given it no longer seems possible to disagree respectfully I won’t be sharing my views there anymore. We are so lucky that some of our friends and family have looked after us no matter what. They know who they are and we are forever grateful to them.

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(I’ve needed to get that off my chest for a while: sorry; I will say no more about it) 

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In the morning we are going to see the consultant who operated on Damian’s leg a couple of years ago. The surgery was successful and meant he could get rid of the leg brace. Since then though his toes have become clawed and very stiff making walking difficult and even more exhausting. The Botox he had in June has not had much effect on them so it looks as though more surgery will be needed. We’ll see how things go. We’re having to pay for the consultation and we may have to pay for the surgery. We’re not really in a position to afford it but I’m not prepared to wait for years. It might be bread and scrape for a while…

 

To celebrate the rest of the day we’re being taken out for lunch and then some close friends are coming round in the evening. I’ve been on a strict lo-cal regime for the past few weeks but not tomorrow. ;-)

 

So two years since we tied the knot. And what a two years they have been. It genuinely was the happiest day of my life and I look back on it feeling nothing but joy. So happy anniversary and happy birthday to my darling Damian. 

 

To our friends, family and the amazing health and care workers who have done so much for us - and continue to do so : Thank you.

 

Much love

J&D xxx

 

(I’ll do a proper update on Damian’s progress soon)

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18th August 2021

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I wasn't expecting to have to update so soon...

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Yesterday was Damian’s birthday and our 2nd wedding anniversary. The day, I am sorry to say, did not go as planned.

We had an appointment at Little Aston with the surgeon who previously operated on his leg, this time to try to release his toes which would are currently clawed and cause discomfort and extra fatigue when walking.

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On the way, he had a seizure. Somehow I managed to pull into a petrol station and call an ambulance. We were taken to Good Hope Hospital and at some point Neil came to help me. I can’t give any details at all as I too was admitted to the hospital suffering from Transient Global Amnesia. All very frightening and upsetting.

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Damian was taken to a ward and a Dr came to see us. He assured us it was not another stroke - there is no sign of a bleed. Apparently I was very distressed and was allowed to sit with Damian for an hour. I have no recollection of any of it.

Later I had a brain scan and blood tests done and was discharged. I do have some recollections of the scan and after a while they let me go and see Damian for a few minutes before Neil and I came back to the flat.

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We went to rescue my car this morning as the hospital told us there wouldn’t be any news until 10am. I was feeling a bit better (but still very confused about yesterday) by then. We went back to the hospital to see what was going on. We spoke to a doctor from the ward who said he had had a quiet night and was fine but we weren’t allowed to go to him. They are going to keep an eye on him all day today and hopefully he’ll be discharged this evening. I’ve come home for a rest and go back later.

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I’ll update tomorrow.

Xxx

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19th August 2021

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I'm afraid that Damian wasn't discharged last night, but they have moved him from the acute unit to a regular ward so I guess that's a step in the right direction. The problem was a physio report which had concerns about his mobility. I took him some things last night and tried to see him but wasn't allowed. The nurse I spoke to wasn't very forthcoming with information and I'm not sure how much they know about what his mobility was like before. It's very difficult and frustrating trying to speak to someone.

Anyway, the positive news is that he is OK and now has his phone so at least I can speak to him and text him. He seems quite slow and lethargic but I suppose that he is exhausted after what's happened.

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More when I can.

J xxxx

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Later...

I’ve spoken to the ward again and they’re keeping Damian in for now. I was told that the physios are still unhappy, this time with his left leg - disturbing as that is his “good” leg.

It’s very hard not being able to see him but at least I can talk to him on his phone.

He seems ok and fairly content but is still very lethargic and tired. Maybe staying where he is for now is the best thing.

I’m going to try to speak to the physios tomorrow to see what’s what.

Thanks so much for all the messages.

J xxx

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20th August 2021

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Damian seemed a bit brighter this morning - I think he'd had a reasonable sleep. He said that he felt his leg was a bit better but when I spoke to a doctor I was told he still needed to use a Sara-stedy to get in and out of bed. He hasn't needed one of those since half way through his stay at Moseley Hall. It feels like a terrible backwards step but I hope that the hospital are just being over-cautious. It's extremely hard to know what's going on because the hospital staff are quite hard to get hold of and Damian's fatigue and aphasia make it difficult for him to tell me. Anyway I was told he would be reviewed again on Monday - so there's no chance of him coming home before then. Not seeing him is really difficult but at least he should be able to get the rest he needs.

More when I know anything.

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J xxx

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21st August 2021

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Just had a call from a nurse at the hospital. They wanted to ask about the accessibility of the flat and to discuss rehab. It came as quite a shock to hear that he may have to go to a rehab hospital before he can come home. I still don't really know what is wrong with his "good" leg but he is unable to walk and unable to get in and out of bed. I don't know if it's a physical injury that happened during the seizure, or a neurological issue. They seem very sure there has been no bleed in his brain and that it wasn't another stroke.

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I asked if I could go and talk to them at the hospital so she's going to ask the ward if that's possible. I've spoken to Damian this morning a couple of times and he is talking a bit more fluently which is good. The weekend physio is going to see him again this afternoon and they said they would ring me back after that. It's all a lot to process and I feel a bit as though I am on auto-pilot. I hope things will become clearer soon.

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J xxx

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Later:

A quick follow up to my previous post. The nurse phoned back as promised but Damian had been too tired for a second physio session so they will try again tomorrow. I hope that another night's sleep will improve things. His fatigue is a serious issue at the best of times and I'm sure what's happened to him this week must have really knocked his energy. There was no news on whether or not I could visit him and talk face to face with the doctors and physios.

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Thanks so much for all the messages and good wishes.

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J xxx

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22nd August 2021

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I don't think there'll be much to say today. The physios have been again this morning but I'm not sure there's much change. He is speaking ok but is still very tired. Hopefully he'll get a lot more rest.

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The staff nurse I spoke to didn't know about any injury to his left leg which is a bt concerning but he's going to check it all out. Unless there's an emergency I don't think he'll see anyone else today. He's also going to make sure his iPad is connected to wifi so at least he can listen to music and watch some telly.

J xxx

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23rd August 2021

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Nothing to report this morning. He's seen a doctor and I've just managed to get through to speak to the ward. They're now talking about more rehab there before he can come home . or is moved anywhere else. I will speak to them again this afternoon to see if there's anything else.

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He sounds very tired. I think he had quite a disturbed night last night but he's snoozing a lot during the day. He is quite fed up and complaining bitterly about the food which I hope is a good sign. Apparently he has a huge bruise on his left leg and is still not mobilising. Hopefully time and a bit of patience will sort things out.

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J xxx

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Later

There is a bit of positive news for once. Damian can now move his knee and with help is able to walk for short periods. They are going to keep him at Good Hope but are waiting for a bed to become available in their Rehab facility for some more intensive work. They won’t give me any indication how long he will be in hospital and they’re not relaxing the ban on visiting at all. The staff on the ward are quite happy to speak to me though - and always take the time to go through everything. Grateful for small mercies. 

 

J xxx

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24th August 2021

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I got a phone call from the ward sister at lunchtime. She said I could go and see Damian this afternoon and speak to a doctor and a physio.

The physio is going to refer him to a rehabilitation hospital - not sure where yet and it is likely to be a couple of days before he moves. Once there he will be in for as long as it takes - she guessed about three weeks, but it depends on his progress. The doctor is pretty happy with his recovery. THey have increased his anti-seizure drugs and put him on some additional vitamins.

 

It was wonderful finally to see him, although he was extremely tired and sleepy. I feel much better having seen him and talked to the staff at Good Hope. Hopefully we’ll know soon where he will be going and that progress will be quick.

 

J xxx

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Later

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Just after 9 o’clock tonight Damian phoned to say he’s been moved to a room on his own in the rehab part of the hospital so the hard work will start tomorrow. I’m so relieved. The sooner he starts, the sooner he’ll be home xx

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26th August 2021

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Ive just heard from Good Hope Hospital. They are discharging Damian today as a bed is available for him at Norman Power Centre in Ladywood where I hope he'll get some more intensive therapy. I had never heard of it but it looks quite promising. They don't currently allow visiting there but at least it's a bit of progress. He sounds quite upbeat this morning.

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J xx

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28th August 2021

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The transfer to the Norman Power Centre was not a smooth operation. Damian was supposed move on Thursday and the transport was booked at 11 am. It didn’t arrive. Yesterday I had a phone call to say the delay was because Damian’s covid swab hadn’t come back. It was rebooked on Friday but the ”wrong kind of ambulance” turned up. I have no idea what that means. Another one was booked and he finally moved at about 7 pm last night.

 

It’s so frustrating. In effect he has been taking up two hospital beds unnecessarily for two days and has transferred to a rehab facility on the Friday evening before a bank holiday weekend. I hope I’m wrong but I suspect he won’t have any meaningful treatment until next Tuesday. We’ll see. Anyway - the main thing he is there now and seems comfortable. I hope the food is better there - he was less than complementary about the catering at Good Hope. He sounds much more like himself so if nothing else the rest has done him good.

 

My head is starting to feel a bit clearer now although the memory of the day it all happened has not come back. I am looking forward to school starting again so I can get back in to a routine, and I am feeling a bit more confident about me getting to Rye next weekend. For a while I had discounted it but if Damian is ok and safe in hospital and I can’t visit anyway I may as well go.

 

I’ll report again once I find out how the rehab is going.

 

J xxx

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Just a quick addition. I've just spoken to a nurse at the rehab centre. I will be allowed to visit twice a week for an hour each time starting on Tuesday. She sounded really lovely. I asked her to make sure he was set up with the wifi so he can listen to his music and watch some tv on his iPad. I will hopefully have a meeting with the new physios when I go in to discuss the way forward.

Looks as though things are (slowly) coming in to place.

J xx

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31st August 2021

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A very quick update. I've just got back from visiting Damian. He's had his first physio session this morning which he said went well. His knee is much less swollen and the bruising has nearly gone but he still needs a Sara-Steady with two nurses to get in and out of bed. I was hoping to speak to his physio but they had gone home. A nurse has asked them to phone me tomorrow.

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As things are I think I will go to Rye on Thursday. My next visit to Damian is booked for Sunday at 4 and I can keep in touch with him by phone and FaceTime. It will feel odd being away from home without him but I may as well be with friends in Rye as sitting here twiddling my thumbs.

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J xx

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6th September 2021

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So - Rye came and went. It was lovely and thanks to Darren's hard work and everyone's very good nature was hugely enjoyable and very succesful.

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I got home yesterday and went to see Damian. To be honest I was pretty upset to find that he'd been in his bed for three days, in someone else's shirt and had no therapy. His nails were dirty and needed cutting. Of course being a Sunday there was no one to talk to.

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This morning at 9 I phoned the ward and asked for a call later in the morning from one of the therapy team. It didn't come. I sent Damian a text at 2 to see if he'd had a physio session. Not only had he not had any physio, he still hadn't been washed. I phoned again. As it happens a physio answered the phone. She was extremely defensive: she refused to comment on the fact he hadn't had a wash - that was a nurse issue apparently. When I asked her about the physio she said he would only have three sessions a week. WTF! He is taking up a room and a hospital bed at huge expense to the NHS and making NO PROGRESS. In fact I believe being alone, in bed for days at a time will be detrimental to his health. She tried to blame Damian by accusing him of not wanting to get out of bed. That is ridiculous. I don't give a shit if he says he doesn't want to sit out of bed - it is obvious that he should be persuaded. Trying to blame him is just awful.

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I asked to speak to a nurse who was, at least, a bit more apologetic and understanding. He said that he would get him washed and into his chair, and try to sort out someone to cut his nails.

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After that someone else asked to speak to me - I think it was anoither therapist. She has asked me to go in tomorrow at 1.30 to sit in on a therapy session.

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I feel completely helpless and let down - I had thought (and was promised) he would be getting intensive therapy. I don't call three half hour sessions a week intensive. It's pathetic and I'm deeply fed up. I will try to be reasonable tomorrow but if they think I'm just going to leave things as they are they are sorely mistaken.

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Wish me luck.

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J&D xxxx

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7th September 2021

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Follow Up:

I'm just back from a (long) meeting at Norman Power Centre. I spoke to Robbie this morning who helped me put together a list of questions and concerns. I won't go through all of them but I did see his physio and her assistant, the senior nurse on the ward, the ward's doctor and the therapist I spoke to yesterday.

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There was much hand wringing and apologising and awkwardness but I think they got the message that I can be stroppy when I have to be and will be watching like a hawk. Damian does need to be more positive but he is clearly depressed - hardly surprising when he's been dumped in a room on his own for days at a time.

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I saw his physio session and he is really struggling to stand, let alone walk. The physio knows Robbie and promised she would contact him.

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I was shocked when the doctor came to see me. She didn't have a clue what was wrong with Damian. She knew nothing at all about his leg. Clearly embarrassed she went to check through his notes from Good Hope. Shocking as he's been under her "care" for twelve days...

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To be fair, after a frank conversation, she examined his leg thoroughly and said she would arrange some scans on it if it doesn't improve in a few days. It's a pretty poor state of affairs when a patient's partner has to point out the bleeding obvious to a doctor.

The nurse came in next and I went through many of the points with her. Individually most of the people I've spoken to seem caring and competent but as I see it the problem is that no one is overseeing the care and the communication between therapists, nurses and doctors seems extremely poor.

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I will give them until the weekend to see if they are good to their word but if things don't improve I will have to get him out of there. To say I am disappointed in NPC is an understatement. It is a state of the art, modern building with fabulous facilities but the care so far has been terrible. When I think of the care of the staff at Moseley Hall, Moor Green and Sandwell Hospital there is no comparison at all with what Damian is experiencing now.

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I do feel better for going in, and I'm going to see him again tomorrow. Hopefully things will start to go our way soon.

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J&D xxx

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13th September

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A few things to report with Damian's situation. Following the meeting last week, I do see an increase in some of the physio support he's been getting. They have left some equipment in his room and during the week I think the nurses have helped him to do some exercises. He is now getting out of bed and into a chair (with help) and being showered daily. Despite many promises, they never got round to cutting his nails so I did it myself on Saturday.

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His leg is less swollen but still very bruised, especially around his ankle. Having spoken again to Robbie and our GP I have sent my concerns and questions to PALS (a patient liaison service) and they did get back to me the next day.

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Contact has finally been made between the physios at NPC and Robbie - something I've been asking for for three weeks.

I am starting to hope that we might actually be getting somewhere now. Robbie was told that patients don't stay at NPC for more than three weeks so with a bit of luck we should get some news on a discharge plan soon.

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J xx

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20th September 

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Some good news: Damian has improved quite a bit during the last week. He is certainly more like himself. The improvement is not really surprising, as, since our "discussion" his therapy has been much more consistent.

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I went to a meeting on Wednesday with the nurses, physios and an OT and they are hoping that he will be able to come home later this week. He is still unable to walk without assistance - I really hope that will change before he comes home. Either way they will oprganise carers four times a day for a while. This fills me with dread for many reasons, not least of which is that we won't get to see Pélegie - the carer who has been helping Damian in the morning since Christmas. She is wonderful and we both miss her. Apparently there is a new system for care packages now. Instead of regular times for calls you are given "windows". The first call is anytime between 7 and 11am. Damian will hate that. Time has become a real issue for him and he is very particular about it. Pélegie used to come on the dot at 7 every day.

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The positive news about Damian has improved my state of mind, and being back at work is just wonderful - especially as at last it is starting to feel more normal. Orchestra, choir and band rehearsals are all back on the timetable and I am loving every minute of it.

I am nervous about him coming home and I will need to keep a very careful eye on things for a few days when he does, but I am confident that once he gets back into the swing of seeing Robbie, Ruth, his colleagues at BCU and his Silverlining friends as well as family and friends he will soon get back on his feet (literally).

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Fingers crossed this is my last post while he is in hospital.

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Thanks so much for all of the support.

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J xx

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22nd September

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Damian is home. I had to wait for some equipment to be delivered before he could be discharged. It arrived at around 3 o’clock and by 4 Damian pulled up in a wheelchair taxi. It was wonderful to finally have him back where he belongs. I was a bit taken aback by how difficult it was for him to transfer from the wheelchair to his arm chair at home but he managed it with help.At 5.20 two carers arrived. There was nothing for them to do really so they said hello and left. It was only after they’d gone I realised I don’t have any contact details for the care company, and I know nothing about them. I’ll have to be more switched on when they come tomorrow.

 

Not long after they’d gone Damian wanted to go to the loo. It was then that I discovered that the Sara Stedy doesn’t fit past the sink and can’t transport him to the end of the bathroom. So much for the measurements taken by the girl who came on Friday. This is a serious problem: we had a very difficult, exhausting and upsetting time getting him to where he needed to be. I am really concerned about how we can carry on like this - I will have to speak to someone first thing tomorrow.

 

I had really hoped that he would be mobile enough to get himself to the bathroom by the time he came home but he can barely stand up. I need to use the Sara Stedy to get him out of his chair and that is a massive effort for him (and me). I am really worried about what will happen when I go back to work. 

 

The drama in the bathroom was very deflating for both of us and the mood changed. He wanted a Deliveroo pizza for dinner but when it came he could only manage a little of it. He was exhausted and at 7.15 wanted to go to bed.

 

I don’t know what tomorrow will bring. I have so many things on my mind I don’t really know what to start worrying about first. I had hoped today would be a really happy one and I am delighted to have him home, but I am also very concerned about how we are going to manage while he is in this state. Sorry to be negative - I hope tomorrow will start to look a bit more positive.

 

J xxx

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23rd September

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I’m looking forward to a time when daily updates aren’t necessary. Today has been a bit of a roller coaster so far. I had very little sleep last night although Damian slept like a log. I got up early as usual and did a bit of work, hoping the carers would come earlyish. No such luck. Damian woke at around 6.30 but wanted to stay in bed for a while. By 9 he wanted to get up but there was still no sign of any help coming so I got him out of bed and into his chair.

 

Meanwhile I had contacted the OT at Norman Power to ask her about the bathroom issue. I have to give credit where it’s due - she got a commode delivered in less than an hour. I am extremely grateful to her - she was really sympathetic and helpful.

 

At 10.30 he joined a BCU Book group on Zoom. He was really enthusiastic to see his colleagues there, but soon became really tired. Still no carers so after it finished he asked to go back to bed.

 

I had finally got some details about the care company and spoke to them. Of course they were full of apologies about the ridiculously early and pointless call yesterday and the lack of a morning call today. I explained that I have to go to work next week and that I need to be able to trust that Damian will be properly looked after. It’s sad I need to keep explaining this - surely everyone receiving a care package needs proper, timely and dignified attention. Anyway the area manager contacted me and has, for now at least, put my mind at rest. At around 1pm two carers arrived and, after a bit of confusion about what was expected and what was possible, they washed him and got him dressed.

 

He came back into the living room and we had lunch together, but he was still tired and has now gone back to bed. I am concerned about the fatigue - it has always been an issue since his stroke but I would have hoped after five weeks of bed rest he might be able to manage more than a couple of hours up and chatting. It’s something I’ll have to talk to our GP about. I wondered if it’s something to do with the vast amount of medication he’s on now.

 

Robbie is coming later this afternoon so he will need to be up and ready for a bit of work then. I will be very happy to have someone I know I can trust properly examine his leg and discuss about a way forward.

 

I hope the next day or two will settle down so that I can get back to work on Monday - something I really need for my own sanity. Here’s hoping the carers do what they’ve promised…

 

J xxx

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24th September

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A quick update following my last post…

 

Robbie (Damian’s physio) came to check how things were. I don’t think it is an exaggeration to say he was pretty horrified. He is convinced that there has been a ligament tear in Damian’s knee which has reduced his mobility to virtually nil. There is no mention of the injury on the discharge letters. He believes that he was discharged too early and as things are it is unsafe for Damian to be on his own. 

 

To help with his stability, Robbie went to get some rigid tape to strap up the damaged knee while he sources a brace. He spent an hour on the phone and hopefully we will have one in a day or two.

 

The carers have not got off to a particularly impressive start - we’ll see how things pan out today. I need to make an appointment with the GP today and Robbie has written a letter explaining what he thinks has happened and asking for scans and an orthopaedic opinion as soon as possible. 

 

My only priority now is to get Damian safely mobile as quickly as possible so we can concentrate on getting his recovery back on track. I am convinced though that there has been some serious negligence in his care over the last five weeks. When the time is right I will make it my business to address those issues.

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27th September

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It has been a very busy and tiring weekend but I feel a good bit better about things than last time I updated.

 

On Friday morning I emailed my HoD saying I wouldn’t be able to go back to work on Monday. Damian is still unable to stand never mind walk anywhere so he can’t be left. We’ve had all sorts of enormous and deeply unattractive equipment delivered to help but everything is a huge effort for both of us. James (my HoD) phoned me and was so kind and understanding. I feel so torn. I really hate letting work down and selfishly I would love to spend the best part of most days at school.

 

I managed to get a Dr’s appointment to organise Damian’s new prescription and to get Robbie’s letter to him (and effect a speedy scan on the knee). He also gave me a sick note for two weeks. I hope I don’t need all of it…

 

Two ladies arrived from Community Healthcare. I took to them straight away. Their attitude was a world away from what we have experienced recently. They were both appalled by what had happened. They read Robbie’s letter and were shocked and deeply apologetic. They checked the flat and discovered that we had been given some unsuitable equipment and not been given all of what we needed. They were horrified that Damian had been sent home on his own in a taxi, leaving me - an untrained person - to get him in the flat by myself. They were also concerned about the carers who have not carried out their work as they should. They also noted that the carer’s risk assessment hadn’t been carried out. It was completed on Friday afternoon (his care package having started on Wednesday).

 

They promised to do what they could and I instantly felt that with them and Robbie we finally had some health workers who knew what they were doing and were on our side.

 

Robbie came again in the evening to see how things were going. He re-applied tape to his leg while we wait for the brace.

 

On Saturday the mobile commode was delivered which makes things much easier (although we still need to use the Sara Stedy to transfer from the chair or bed to the commode which is a palaver). Of course Medequip (who deliver the equipment) wouldn’t take the static one back as it “wasn’t on his sheet”. They will arrange a separate driver/van for that. (This sort of thoughtless, inefficient and wasteful behaviour is starting to make me angry)

 

In the afternoon some friends visited which was really lovely. After an hour Damian went for a snooze, but he had been up and awake all day so that was an improvement in his fatigue).

 

Yesterday the carers were able to use the new mobile commode to get Damian washed in the bathroom - a huge improvement.

 

Neil came at lunchtime and we had a Deliveroo lunch which cheered us both up a lot. After eating Damian went for a snooze and Robbie came again at 5 and after a bit of work, Damian was, from a higher chair, able to stand almost unaided. This was amazing to see and I felt massively relieved. He was exhausted afterwards and went to bed at 7.

 

I am so touched by the kindness and help of our friends, family and colleagues. It makes such a difference to know that we are supported and thought about. Thank you

 

J xxx

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2nd October 

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Sorry for the silence. A few developments to report. It's been extremely busy this week with OT, physio, carers and social workers all visiting. We seem to have settled into some sort of a routine but it is very hard work. Robbie has had the most positive input and is pleased with the progress Damian has made over the last week or so. He is able to stand fairly comfortably now but he still can't walk. He is though, able to transfer from his chair to the wheelchair which at least means we don't always need the very bulky Sara Steady every time he wants to move.

 

I spoke to our GP on Monday who has referred him for a scan of his knee but there's no sign of the appointment yet. This morning we went to the Royal Orthopaedic Hospital for his regular Botox appointment. We haven't managed a car transfer yet so we had to use a wheelchair taxi. It was the first time he'd been out of the flat since he came home and I was concerned about how we would manage but getting there was fine.

 

The appointment went well and we saw Mr Mikalef who had operated on his arm and hand earlier this year. It was good to get a review. His arm isn't in great shape at the moment because of the weeks he has spent in hospital with no proper physio, but overall he was happy with the surgery. He thinks he will be able to improve it further but now is not the time to worry about that.

 

The nurse who administered the Botox had a look at his damaged knee and she too said a scan as soon as possible was necessary. To be honest I had hoped we would have been given an appointment before now. I think I'll phone the Dr again on Monday and chase things up. She also suggested I contact the Stroke Association to see if there is anything they can do to help me.

 

Getting home from the hospital was much more troublesome. I really struggled getting him up the two steps to the front door of our building. We are going to need a ramp if things don't improve very quickly. With much hoisting, lifting, pushing and pulling I managed to get him, his quad-stick and his wheelchair through the door.

 

I am desperate to get back to work, although not entirely for selfless reasons. I am aiming to go in on Wednesday. Damian says he will be fine, but we'll see. If he has a couple of calls during the day I will feel much happier. I am torn in my responsibilities. I love my job and cannot wait to get back to school. They have been more than accommodating with me - as they have been for the past five years - but I want and need to get back as soon as I possibly can.

 

The rest of the weekend will be a little more relaxing I hope, although Robbie is coming again tomorrow so Damian will have to look lively. Monday will be another day on the phone to Drs, social services and therapists and on Tuesday I have been invited to a meeting back at Norman Power Centre. That will be interesting... They phoned the other day to see how Damian was. What a coincidence - it was the day after I had been on to PALS chasing up some answers to my concerns sent in 20 days previously. If only NPC had been as concerned about his welfare when he was under their care as they appear to be now, perhaps we wouldn't be in this mess.

 

Anyway - thanks again for all the support. It is keeping us going.

 

 

 J  xxx

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10th October

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It's been an eventful week and I am pleased to report that I finally think things are improving for us.

 

Following the struggle getting Damian back in to the building (there are two steps up to the front door) I phoned the Community Trust team on Monday morning. They are extremely helpful and efficient. On Tuesday someone came to have a look and she said she would order a ramp for us. Half an hour after she'd gone, Medequip phoned and delivered it the next day.

 

On Tuesday I attended the meeting at the Norman Power Centre. It's probably unwise for me to say too much on a public forum but they were very apologetic about many of the issues I had brought up. They rightly need to refer some of the issues to Good Hope Hospital as well so I hope and expect to hear something from them too before I decide on a course of action.

Robbie came in the evening and Damian finally managed to walk with a quadstick and some help. It is very slow and he is being extremely careful but it is a very significant improvement.

 

Our current care package will soon be handed over to another company. We are very keen to go back to the carers we had before the siezure but they don't have the staff to manage two carers at a time. Robbie believes Damian will be fine with one carer now, so I phoned the Community Trust team again. They arranged to send someone out to assess him. It was the same therapist who came about the ramp. She saw Damian walk and agreed that one carer would be fine which is great news. With a bit of luck Pelegie will be back with us soon.

 

On Wednesday I went back to work. I was very concerned about leaving him for such a long period, but a Community Physio was coming to see him, and there were two care calls so I was pretty sure he'd be ok. He was, and I was delighted to be back at school.

 

Robbie came again on Thursday evening and, even though Damian was very tired, he got him walking outside and practised a transfer in to the car. This will make appointments muich easier as we won't have to rely on taxis.

 

Friday was a quiet day, but another community physio visited to go through his exercises. I am delighted with these people: the physios are coming three times a week, as is Robbie so at last I feel Damian is getting proper intensive physiotherapy.

 

On Saturday morning Robbie came again and worked with Damian on getting in to the shower safely. He managed well, but I don't really want the current carers to do it - they always seem in such a rush and I haven't built up much trust with them. Once Pelegie returns we can go through it with her and I know she will be fine. We finally put the Sara Stedy away on Saturday and it hasn't been used at all this weekend.

 

On top of all the positive developments this week we've had visits from friends and family and Damian has had a couple of online group meetings at the university. He has really enjoyed these and I hope it won't be too long before we can get out and about a bit more.

 

Onwards and upwards

 

J xxx

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3rd November

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It's been quite a few weeks since my last update on Damian. He has made some progress during that time - thanks mostly to the extra physio sessions he has been having. He is able to get around the flat reasonably well using the quad-stick and we no longer need the sara-stedy to transfer. Going out is a bit of a palaver but we were able to go out on Sunday for lunch and this morning we finally managed to get to the barber's.

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The 'urgent' MRI scan happened a week last Friday and the radiologist sent us to A&E because he was unhappy with the look of Damian's knee. The doctor there said he would mark the MRI urgent so the results would come through quickly. They came through today and our GP phoned to tell us that the knee damage is worse than feared. His shin bone is fractured and he has torn his meniscus. It beggars belief that this is from an incident which took place on 17th August. I find it hard to comprehend how two hospitals can have been so incompetent.

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Our priority now is for Damian to get to see an orthopaedic surgeon urgently. The GP is making some calls now to organise it. I just hope we can finally get his knee sorted so we can put back some of the hard-won progress he had made over the last four years.

It looks as though the last few days of half term are going to be taken up with sorting out this mess.

More when I have it.

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J&D xxx

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7th December

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