Life after Stroke

How encouraging to hear so many people have asked after the monthly blog.  It means a great deal to me that people are interested and care enough to want to know how my Family are getting on with life after a stroke.

Three months have passed since I last wrote in January and what a busy few months they have been.

When we look back, it is hard to believe we spent over a year visiting Dad in JC when we see him now sitting so comfortably in his own home.  Admittedly Dad still questions where he is some days, but it is familiar and he is certainly in a routine.  Mum is so organised and runs her home like a very tight ship - she has to, but it means she is constantly on the go.  For me, it is a massive relief and a great comfort to know that my Mum and Dad are together and go to sleep under the same roof at night.  To know that there is always a loved one with Dad to ensure he is receiving the correct care and being treated with respect.

We have experienced some poor levels of care from certain individuals from the care provider, but thankfully family members have been on hand to witness it and speak up for my Dad.  Don’t get me wrong, if Dad is being mistreated in the way he is spoken to or the way he is being handled, you will certainly get a reaction from him, but he is in a vulnerable position and has no memory to be able to relay these experiences to anyone after they have happened.  An incident occurred in the bathroom when a carer wound Dad up in to a situation where he spat at her as she wasn’t listening to him or explaining what or why she was doing whatever she was doing. Rather than trying to diffuse the situation that shouldn’t have happened in the first place, the carer goaded him saying ‘Go on then Alan do it again’.  Thankfully Mum was on hand and heard everything, and had to step in to confront the ‘carer’, I use the description lightly. Other than that we have received mainly positive experiences of care as the carers should be trained to be able to diffuse difficult situations where Dad’s dementia and brain damage sometimes takes over. More often than not it is comforting to hear the carers laughing with Dad and encouraging him to sing!

The problem of Dad’s incontinence continues and the washing for one day soon mounts up from three changes of clothes, wet bed sheets and shower towels and flannels.  The incontinence nurse visited with various solutions including a convene that had to be attached to Dad’s leg in a complicated way – but he was having none of it, so the pads are still being used even though they are limited in their effectiveness. 

We have taken Dad to a number of appointments over the last few months.  In late January Dad went in for his PEG procedure – if you recall, the PEG tube (feeding Dad water in to his stomach throughout the day) had attached itself to the skin inside his stomach, this procedure was to ‘snip’ the skin to free it. I stayed with Dad whilst he endured the cannula being inserted in to his hand. The usual followed – Dad thinking he was under attack and not understanding the situation, shouting, a few choice words and squeezing the hand he was holding very tightly with intent. I gave reassurance and distracted Dad with music and although fighting it, he eventually drifted off to sleep under sedation.  

After all that, we were disappointed to hear it wasn’t a success.  The Doctor was unable to free the tube and explained that he requires a surgeon on hand to make an incision in to the skin which will be done under general anaesthetic. As I went to the recovery room to be a familiar face for when Dad came round, the Doctor advised me ‘I’ve given him enough to sedate a rhinoceros so it could take a while’….I guess he was airing on the side of caution!

We were advised an appointment would come through for February, but after several attempts of chasing we are still waiting for a date…

Other visits have included a trip to the orthotist to get Dad’s foot brace widened after his calf swelled up.  Nobody has been able to provide an explanation for the swelling, but DVT was thankfully ruled out.  Dad’s knee also flared up after all the twisting he was doing when transferring from one chair to another.  We have now started supporting Dad as he stands from his chair and takes a few wobbley steps to the mantelpiece before bringing the wheelchair behind him. We were told by the orthotist that standing is good enough to get Dad’s heart rate moving and taking a few steps is a good workout for him. I have to say, Dad does some excellent walking with me even walking from his chair to the toilet on several occasions.  I cannot be there every day, so it varies on which carers are on, as to whether Dad gets a walk or not.

A trip to the local town centre followed in February to a diabetic screening at an optician’s appointment.  This was the first time we’d ventured together in to the local shopping mall post stroke. After the appointment, which went smoothly as we requested in advance for the dye not to be used, we took Dad in to the local supermarket whilst Mum went ahead and did their shopping.  It was lovely to bump in to a family friend and her baby – Dad was all smiles when he saw them which was a pleasure to see.  It made me laugh when Dad simply patted a man’s bottom to move him out of the way as we couldn’t get passed.  I think the man thought his luck was in until he turned round to see Dad sitting there in his wheelchair!

Talking of wheelchairs…finally the day of the wheelchair assessment arrived. A new wheelchair has been ordered – one which is a little higher to sit on which should improve the positioning of Dad’s legs; it has a bar to support his back and is slightly wider.  Hopefully it will be far more comfortable than the current one which is literally falling to pieces.

We explained to the occupational therapist how difficult it was for any of us to steer the wheelchair and push Dad when outside of the house. A business case for the provision of a motorised wheel to power the chair has been put forward to yet another panel to decide whether Mum and Dad are worth investing money in.  It would have a positive impact to their lifestyle as they would both be able to go outdoors together to get fresh air and Mum would be able to push Dad to the local shops without the risk of another back injury. We were advised the new wheelchair would be delivered after six weeks, so it should be with us next week and we look forward to hearing a positive decision made by the panel very soon.

The charity ‘Crossroads’ got in touch with us back in January to advise us a resource had been allocated to stay with Dad for three hours one afternoon a week so Mum can have some ‘me time’.  What do you do with your ‘me time’?’ Dad asked when he heard me reading this draft out to Mum! Well it gives Mum a few hours to do something different, although the day becomes a bit of a rush in Mum’s eyes as she tries to get everything done in less time than a normal day. Mum has used the time to get to the shops to buy food, occasionally bumping in to friends, or collecting the grandchildren with Sue from school. Oliver and Ruby love seeing their Nanny waiting in the playground and have demonstrated this by running up to give her the biggest hugs.  How good will it be if we can get the motorised wheel to power Dad’s wheelchair - then Mum can push Dad to meet the grandchildren after school too?  Imagine their delight when they see both Nanny and Pop-Pops meeting them after school - that will be special!

A final appointment to write about in this blog happened at the end of March.  As we were not entirely satisfied with the service we had received regarding Dad’s spasticity and pain relief, we decided to pay privately to obtain a second opinion.  The Consultant visited Dad at home in January and spent a considerable amount of time learning about his stroke and rehabilitation. An appointment was made to attend his clinic in March at a hospital in Birmingham.  It was a little further for Dad to travel, but he travelled really well in my car.

The Consultant and Lead Stroke Physiotherapist met with Dad and I have to say they were fantastic with him. The Physio could clearly understand the pain Dad was in. She sympathised when Dad accidently knocked his foot during the assessment seeing first-hand how his foot contracted and the distress it caused. ‘Oh Alan’, she said ‘you should not have to experience this much pain you poor thing’. Between the Consultant and Physio, they identified Dad’s left shoulder had dropped so were pleased to hear we are waiting to take delivery of a new wheelchair with a back support. An ultrasound appointment was arranged which they hope to accompany us to.

A thorough examination of Dad’s left shoulder, arm and leg was carried out and a discussion about botox followed. Although pleased to hear they were willing to inject, we ensured they understood the reaction they were likely to witness from Dad.  ‘It’s ok’ they reassured us ‘we are used to this’. ‘Mmmmm’ we thought, Mum and me warily looking at each other.  Mum left the room to sit with Len in the waiting area to avoid the emotional experience of watching her loved one suffering distress.

Dad received botox injections in to his bicep and forearm to help relax his fingers, before they moved their attention to his leg where botox was injected in to his hamstring and shin to assist in preventing Dad’s foot turning inwards. This was a massive triumph for us, as regular readers may recall how I pleaded with the previous Consultant last April to inject in to Dad’s hamstring, only for him to refuse due to the distress Dad had experienced having the botox injected in to his arm. Also I should tell you, the amount of botox injected was significantly more than had been given to Dad previously and we were advised we should notice a considerable improvement to the tightness Dad experiences in the left side of his body.

We needn’t have worried about Dad’s reaction to the injections! Although he squeezed my hand tightly, the Physio did such a good job of reassuring him that the Consultant had injected Dad before he knew it and the small sharp prick of the needle was quickly forgotten about. We heard one swear word from Dad throughout these injections which is unheard of as I have documented throughout my blogs.  It just shows if the right approach is taken there is no need for Dad to become as distressed as we have previously seen.  I was so proud of my Dad and so overwhelmed from the support and encouragement given by the Consultant and Physio that I had tears in my eyes.  It was such a relief to feel that someone is on ‘our side’ and understands that Dad is not a ‘difficult angry man’, but is experiencing a level of discomfort and pain than we can only imagine. 

Mum and Len were surprised to see me pushing Dad out in to the reception shortly after with him singing his Buddy Holly songs and waving to them - and anyone else who happened to be walking past!

Following this, Dad was sent for an ECG and to have bloods taken which involved more needles inserted in to his hand - he coped really well. It’s a good job that Len and I had booked the day off work because we spent the majority of it in the hospital.  I told Dad I’d booked the day off work to take him to his appointment and he replied ‘You make sure you enjoy yourself then’!

Unfortunately we were unable to get Mum back in time for Oliver and Ruby’s Mother’s Day service but I think she would agree it was worth missing on this occasion!

The botox is already showing positive results with Dad planting his left leg much straighter to the floor and his fingers appear less bent than before.

A happy event I must tell you about is the special weekend we enjoyed celebrating Dad’s 70th Birthday last month.  

Family and friends were invited to Dan and Sue’s house on the Saturday to join in wishing Dad a 'Happy Birthday'.  Mum was able to enjoy the day as Dan and Sue took responsibility for looking after the guests.  It was lovely that so many people were able to share the celebrations with Dad and he did an excellent job of keeping up with the conversation! I think we were all mindful of overloading Dad with too many conversations at once which helped him enjoy the day.  

The following day, Dad’s actual 70th birthday, we took him for a meal at the local restaurant we’d tried and tested at Christmas.  We enjoyed a lovely meal and Dad blew his candles out on his birthday cake whilst we all sang to him.  Back home we toasted Dad’s 70th with champagne, a birthday present from Dad’s friends – thanks Jean and Dave! Although Dad only managed a sip, he joined in his toast and thanked us all for coming!  After such an enjoyable and eventful weekend of celebrations Dad was worn out by the time Sunday evening came.  He received so many lovely cards, presents and messages (including on Facebook!) – the cards surrounded the living room for a good couple of weeks after – so thank you to each and every one of you who got in touch and helped make it a special birthday for Dad.  He may not remember it now – but in the moment we could see he was happy and he knew he was loved.

I think it is well documented how the events of Dad’s stroke have brought so many new people in to my life. I have formed stronger friendships as well as made new ones because of the bond shared in our experiences of caring for a loved one.

My dear friend Jessie, from America, wrote to me last month to break the sad news that her Dad had passed peacefully away following the stroke he suffered in March last year – he had only recently celebrated his 65th birthday. Jessie has been a tower of strength for me since she got in touch last year after finding my blog and identifying with the experiences I write about.  We have off loaded many an emotional moment to each other sharing the worries we have for our loved ones – especially witnessing the heartache and pain our Mums have both suffered from seeing their soul mates and lives change in front of them as a result of stroke.  There are also the funny little stories and situations that our Dad’s get in to that mean we can empathise with each other and share a little chuckle. My heart goes out to Jessie and her family.  I hope to remain in contact with her as we have been brought together by the love we have for our Dad’s and the devastation that stroke brings to family life.  We may not have met in person and probably never will, but we share a special bond and for that I am truly grateful.

Hopefully this brings you up to date with our life post stroke.  It is extremely hard work caring for Dad and there is a lot of pressure on Mum, we try to be there to support her as much as possible. I never know what state I will find Mum in when I phone and it is hard to hear the difficulties she is facing – especially when I can’t do anything to help her but listen. A definite routine is now in place for Dad, although we are currently in the process of changing care provider after we felt let down by the individuals I wrote about earlier and their management who did not express any interest in addressing the concerns I raised on several occasions.

So now spring has sprung, the days are getting longer and the better weather is expected, we hope we will be able to get Dad out and about more than he has been since he returned home – and Mum too.  We have a list of things to do and places to visit, but all take time to plan – but one thing’s for sure, a new wheelchair should certainly make these visits more achievable. 

I look forward to telling you next time about the positive impact the new wheelchair has had on our lives, especially if we get the motorised wheel approved by the panel – fingers crossed, I look forward to writing about the new carers providing an excellent level of service and the special moments we continue to share with my beautiful Dad.

I know we all have such busy lives to lead, but please do keep in touch and as always – thank you for your time and your support….it is forever appreciated.

Love You Dad x

Valentines Day - Mum and Dad's attempt at
 making a heart!

Visiting Mum and Dad on mine and Len's
shared Birthday.

Yeh - we're out!! A visit to the
local shopping mall!

Dad's 70th Birthday.

Blowing his Birthday candles out!

Making a toast.

Mothers Day - Mum and Dad with Oli and Ruby.