This week Amanda went back to work. Just for an hour and just for morning tea. Around 20 staff came in from their holiday break to say ‘hi’ and see her again for the first time in over 5 months.

She sat at her desk in the hope it would spark some memories. The desk was familiar to her. What she does when she sits there? Not so much (yet!)

On Friday, her physio spent an hour showing her some exercises to improve her wrist and finger fine-motor control. In the past week she has built up time wearing a splint to calm -down some of her right hand’s involuntary muscle spasms and he noticed the benefits of wearing the splint for 6 hours a day already.

He also gave her some exercises to do while watching TV in the evening, standing behind her chair to improve her leg muscles and movement.

While she was in hospital, I took in a speaker and mobile phone so she could listen to music via Spotify. Nelson Hospital has free wifi, which I’d hoped she could take full advantage of. But with serious issues with reading and writing, trying to navigate a phone was, and is still a challenge. However, even during her first week there, way back in February, she was singing along to ABBA on the few occasions she wanted to listen to music.

This morning I read an article on how a stroke-recovering psychologist used music because it activates lots of brain regions at once – attention, memory, verbal, emotion and meaning.

Earlier in the week I used Spotify to remind myself of an old pop song from my childhood – ‘How Can I Be Sure’ by David Cassidy who had a number of hits in the early 70’s.

I read the article aloud to Amanda and mentioned how her speaker and phone set-up would allow her to listen to Spotify. I reminded her how she could listen to anything and, as an example I had found an old David Cassidy song  a few days previously.

She started singing… “How Can I Be Sure”

We’ve been married nearly 34 years. We know each other well enough to anticipate each others thoughts. We’ve lost count of the times we have suggested the same meal for dinner or spooked each other by saying aloud what the other is thinking.

The stroke interrupted Amanda’s ‘telepathic’ capabilities. To me, this was the first example that it might be returning…

Anyway, I found David Cassidy’s greatest hits on Spotify. She sang along for four songs. Word and tune perfect to songs from 1972 to 1974. At the end of the fourth song she asked me… “who is this again?”

This week, it’s time to thank some of my work colleagues  who very generously gifted us a voucher for the online food delivery service My Food Bag .

The voucher allowed us to order meals for 4 nights a week, over 5 weeks. I waited until Amanda was home and settled before I signed up and claimed the voucher. There were unexpected and positive consequences…

Each week the food is a mix of frozen, chilled and dried goods. So it was good practice for Amanda to put it all away; remembering where stuff went and moving around the kitchen space.

When it came to preparing the meals, the supplied menu cards were a great way for her to practice her silent reading (remember, bizarrely, she cannot read aloud), and retrieve the correct ingredients from the right place. She was also able to follow the instructions and recommence learning how to, for example, slice tomatoes or chop mushrooms (one – handed, left- handed). This has all helped her reconnect with her passion – cooking.

Last weekend we tried a simple chocolate cake recipe (simple for my benefit!), and I was not surprised that so much of her instinctive skills and knowledge are still intact. The problem, which occurs in so many other situations, is just about remembering where things are in the house, or recalling the various steps in a procedure or process which, when they are daily, often mundane tasks, we all take for granted.

Also during the week, I was surprised to witness Amanda successfully negotiating our three back steps. Previously she has needed help to step from the last step, onto the concrete drive, as there is nothing to hold onto. She has been stepping into an unsupported void. This time around, she grasped the porch support pole and stepped down all three steps and onto the drive, unassisted.

The physio has supplied a splint with four velcro straps, which hold her right wrist and knuckle joints in place for short periods and stops the muscles involuntarily contracting  –  spasticity

Hopefully over time, the muscles will ‘learn’ to relax by themselves and her hand will take on a more natural pose and also become easier to control.

The occasional confusion with spoken words still occurs on a regular basis, hence the title of this week’s blog. Commenting on her situation, and reflecting her ongoing positivity with her current situation, she said earlier this week;

“Sometimes life just throws you a furball.”

Our lives changed forever the instant Amanda collapsed in front of me on 1st Feb 2017.

Amidst the drama and fear of those first few minutes, that was my first practical, coherent thought.

“This will change who we are forever.”

As soon as I accepted that, and the fact neither of us had any control whatsoever over our fate and what might happen in the coming hours and days, I allowed the experts to take control; and they did.

As I watched the air ambulance take off, carrying 2 pilots, a paremedic and my wife comatose on a stretcher, leaving me behind to find my own way to Wellington, I realised she was in the best possible hands. There was literally nothing my being on that plane could have done to make the situation better for either of us.

Once she was comfortable on the Intensive Care ward, with a nurse at the foot of her bed 24 hours a day, taking notes, keeping her comfortable, checking her vital signs and administering the drugs which were protecting her brain and saving her life, all I could do was sit.

and watch.

and wait.

I realised I had to maintain my own routine. I didn’t sit and watch her all day at home, so why would I need to stare at her (or at her heart/breathing monitor) at 3a.m.?

I quickly decided I should treat her hospital stay like a job. Arrive at 9 in the morning, take regular breaks including an hour for lunch, and then leave by 5 in the afternoon.

I had complete faith in Amanda’s willpower and ability to wake up, get better and eventually leave hospital. I was wary of setting a precedent of being there beside her every time she opened her eyes, because our ‘normal life’ wasn’t like that.

So in spite of her unconscious state I would make a point of telling her what time of the day it was before going to get a coffee or taking the lunch which I prepared every morning out into the sunny courtyard where other visitors, staff and even patients sat to eat and relax for a few minutes.

I also had complete faith in the staff. They were the dedicated, trained professionals. Of course by the end of the first week I considered myself to be a fully competent ICU nurse as well, since by then I had observed every possible procedure they could have carried out on Amanda, so naturally I was an expert!

In the evening I enjoyed the distraction of cooking dinner at my daughter’s flat where I was lucky enough to stay, just a 10 minute cab ride from the hospital. I was in bed by 10pm, but not before phoning the ward to check on how Amanda had been in the intervening hours. Because of how ill she was her bed was opposite the ward desk. I knew the nurse I was speaking to could look directly across and see her.

Up by 7 the next morning, the first thing I would do was phone the ward again. A different nurse would scan the notes from overnight and update me.

On day three, a nurse gave me a yellow A5 book. Keeping a diary would be a good way of letting go of the events, the ups and downs of each day. It might also help in the future, to recall these early days, when Amanda would eventually have questions about all these days which were somehow missing from her memory. I just re-checked that diary and I see I managed an entry for each of the days we were in Wellington.

Familiarity and routine kept me going for those 23 days. The repetition of basic tasks meant I could save my mental energy for the occasional unexpected event. So when I received a phone call mid-mornng as I was sauntering back from a rare trip into central Wellington, to say Amanda was being airlifted back to Nelson in 45 minutes, the stored energy and tenacity reserves kicked in. I ran back to Jess’ flat, grabbed my things, grabbed Jess and grabbed an Uber and arrived at the hospital with 20 minutes to spare.

So when people asked me how I was doing, I was doing OK, thank you.

I stayed focussed on my routine and even more so on my wife. When visitors asked me about the other critically ill patients I didn’t know. I didn’t care. They were not my reason for being there; Amanda was.

After the first week, each day I looked at her and thought ‘if this was as good as she got, could we cope?’ When I found myself thinking ‘yes we could’ then as she made progress each day got a little easier than the one before.

Nothing can ever prepare you for what happened to us in those first few weeks. I found the trick was to try and step away for a moment and look down on the situation, to analyse it from outside and try and think what the next step might be and prepare for it. I also made myself a part of her care team. The doctors and nurses and other medical staff would explain to me, consult with me and ask me, as the person who knew Amanda best, what she might need, or how she might be feeling or had I noticed improvement when they had missed it?.

Around us some other patients had large extended families weeping and wailing around their beds. That was helping no – one.

The aim was for Amanda to recover, not be grieve over her.

So far its working…

Last weekend I decided Amanda should take on a few challenges.

The first was to sort out the dirty washing. That’s all I said. Soon after there was a pile of dark clothes and a pile of light clothes

✓

Next, put it in the machine, put in the liquid, select the correct setting and…go.

✓

Once finished, put the washing on the dryer.

✓

Sunday morning and time to attempt baking; a simple ginger biscuit recipe. Amanda located all the ingredients in the pantry.

✓

But we were out of baking powder. So it was a short drive to the shop. I went off to get milk and Amanda volunteered to get the baking powder. She was confronted with a whole display of baking items. I gave her a clue and said it was on the top shelf. Amongst a whole confusing shelf of similarly – designed boxes she was quickly able to locate the baking powder.

✓

On Monday I checked on her via the webcam and noticed she was looking at her phone. Previously we had tried to get her to answer with no success. It goes to answerphone after 3 rings and during that time she has been confused by the screen and the symbols and failed to answer in time.

So I called her. I could see she was still holding it. One ring… two rings… three rings.

I tried again. One ring… two rings… “Hello?”

✓

On Monday evening we watched Barry Gibb at Glastonbury on TV. She sang along to nearly every song.

EVERY 40 YEAR OLD SONG.

But when I asked her she could not remember what she’d had for dinner 2 hours earlier. I asked her to visualise the meal. She got as far as chicken and gave up.

When I came home from work this evening she told me she had phoned her friend and invited her to come over tomorrow. The friend had called in last week when Amanda had been sleeping so she had left a note on the doormat.

Amanda had managed to locate and identify a phone number on a page of A4 text, somehow found the dialler on her smartphone and called her!

✓

I was so skeptical I had to check her phone. Of course she was right.

It seems that thoughts are only recalled once they have been around a while and become memories.

Confusing frustrating… but amazing.

This has been a week of contrasts.

On Thursday we had a 90 – minute initial home visit from the Jason the physiotherapist and Trudy the occupational therapist. They spent the time listening to both of us,  looking around the house and discussing with Amanda what her goals are. She wasn’t entirely sure about this until it was gradually coaxed out of her:-

• Being able to read a book again
• Using a computer
• Using a smart phone
• Being able to bake cakes and make meals
• Gardening
• Re-aquiring her numeracy capability
• Returning to work
• Gaining full use of her right hand
• Improving her walking technique and distance

They made individual appointments to return next week so they can make a start on developing a detailed plan and Amanda can begin proper physio sessions for the first time since leaving hospital a month ago.

They left carrying the arm sling which can be returned to the hospital and the chair which we borrowed to allow Amanda to sit in the shower. Neither have been needed for the last month and their exit from the house is another small step forward.

On Friday we both went to our first meeting of a group of stroke sufferers, hosted by the local branch of the New Zealand Stroke Foundation.

There were 14 other people in the room. Amanda was the youngest and the most recent to have had a stroke. In many ways, despite the severity of her stroke, she was also the least affected/most improved amongst them.

We both decided, independently, that we probably won’t be going back.

When we discussed it afterwards we were both struck by the negativity and overall sense of resignation in the room. These people accepted their situation, yet resented it and, while talking helped them come to terms with, and share their experiences, overall they saw themselves as living with the effects, not recovering and continually improving.

The men in particular (and I’ve heard men take strokes far worse than women), came across bitter and angry.

I left with a sense of pride in Amanda’s attitude and positivity, and guilt that it seemed to have already given her an advantage over these people who clearly (in some cases) didn’t have the support, access to information and knowledge or personal self- awareness to take every opportunity to make each day better than the one before.

Or maybe they do. We’re all different.

20 weeks since it happened.

This blog started as a result of posting weekly updates on Amanda’s Facebook page. Many of her friends commented on how inspiring her journey so far had been and encouraged me to tell our story to a wider audience.

A few weeks ago someone posted a stroke-related story on STUFF – the most popular New Zealand news website. I posted a comment and as a result STUFF contacted me and invited me to write an article on Amanda’s story. It’s a version of the first post on this blog and can be found here

As a result of that article, in the last 2 days this blog has had nearly 8,000 views from around the world! The article may well be the reason you’re reading this now.

As a consequence I have had a few kind messages of encouragement. For example:

“I stumbled into your blog after reading a copy of the first post that had been republished on the Stuff website. I have to confess that despite not knowing you, I have read every last word while reliving the same or similar memories. “

“I would like to thank you for sharing this experience. I read your entire blog this morning from start to finish after reading a bit of it on Stuff.”

A Stroke is a cruel thief.

It kidnaps your loved one and holds them to ransom just out of reach. You can still see them. you can talk to them. touch them even. But you cannot take them back. The stroke holds on to them; gives you tantalising glimpses of the person they once were, or could become once again.

The only way to pay the ransom is with you.

Your time

Your energy and commitment

Your love and intimate knowledge of what makes the person ‘tick’

Your shared experience and memories which you’ll have to dig deep to recall and replace in the mind of your loved one.

Only the will the stroke even consider giving them back to you.

Amanda’s reading and ipad skills have (re)developed to the point where she has  managed to locate this blog so has read the first post. But she has decided she needs to psyche herself up to read any more!

If I show her words written down in short sentences they are unreadable. Yet if I ask her to spell words out loud 99 times out of a 100 she gets the spelling correct every time. This means that she is somehow able to read.. some things… sometimes. But there is still no logic to what she seems to be able to make sense of writing-wise

Highlights this week have been Amanda offering to help out with the preparation of the Myfoodbag meals we are having delivered, thanks to a very generous gift voucher from my work colleagues. She’s also keen to help tidy up afterwards.

On Saturday morning Amanda went for her first haircut in nearly 5 months, again thanks to a very generous voucher from owner Jo at Serenity in Richmond.

On Monday morning Amanda made choc chip cookies with her regular carer, Becky and on Friday we should have the first home visit from a physiotherapist. I’m looking forward to the speech therapist so I can explain how specific Amanda’s aphasia seems to be. Hopefully they will be able to give us the tools to target these very small gaps.

Plenty of sleep is still the key to recovery; a nap mid – morning and a longer sleep – sometimes up to 2 hours in the afternoon. This then means there is a productive window of alertness after our evening meal, between 7 and 7.30pm when we can either practice word puzzles or some simple physical exercises.

2 weeks since discharge from hospital and this week has been the first with an hour’s carer first thing in the morning and another hour at lunchtime. This is intended to prompt Amanda and help establish steps and procedures, not to do stuff for her, or even assist.

She has managed to get the same person for 8 out of the 10 weekday sessions, which helps with consistency for both of them. Unfortunately, because of demand the a.m. session doesn’t start until 9am.

So…

This morning Amanda decided she needed new shoes as she is fed up with asking for help tieing the laces on the much-admired Adidas trainers she’s been wearing almost constantly for the last 3 months.

I reminded her she has a cupboard full of shoes she usually wears for work and leisure.

So we spent the next 30 minutes rediscovering a whole treasure trove of slip-on footwear.

She now has 6 ‘new’ pairs of shoes. All without spending a cent!

This week was Amanda’s first full week back home. Lots of sleeping to aid brain recovery and also continued improvement in movement and feeling in her right arm and hand.

She is keen to get into a regular routine so is up by 7.30, showering unaided, then getting dressed and her own breakfast with very little assistance other than the occasional reminder of what to do next or where to find stuff.