Life after Stroke July 2014

The last three months have been a mix of highs and lows but overall have been positive.  Mum and Dad seem more settled together - the hard work Mum puts in to running her tight ship doesn’t get any easier, but the routine is becoming more familiar. Mum has always been a home maker and to me a bit of a perfectionist, (my brother takes after my Mum….) so it stands to reason that she does not take her caring role half-heartedly.

Mum and Dad celebrated 44 years of marriage on Friday 13^th June, unlucky for some but not for them.  Flowers were delivered on behalf of Dad and cards were given.  A repeat of last year in Dad reacting with shock throughout the day when we repeatedly told him he’d been married for 44 years – ‘Gosh that’s gone quick’ he wrote in his card,  ‘Still love you as much as before’.  Dad was able to recall it was his wedding anniversary they were celebrating when asked throughout the day and his guess at the number of years became greater as the day went on.

Mum enjoyed her only night out since Dad returned home when I took her to see Gary Barlow in concert in April.  She almost didn’t go offering her ticket to Len after having had another tiresome day and seeing it as a big effort to go out and have a late night, but she did go and we both had a fantastic night.  When I told Dad where I was taking Mum he said ‘He’ll only have eyes for your Mum!’  Len stayed with Dad to allow Mum a night off and we received a text during the concert reassuring us that Dad had taken his tablets and the carers had safely put Dad in to bed.

Following on from my last blog, we made the decision to change care provider in April.  After an emotional first day where we witnessed Dad go back to his shouting, swearing ways due to being confused with an unfamiliar routine and no one taking control – I am pleased to report things have improved 100%. Initially we thought ‘what have we done?’ with me feeling guilty as I felt I’d pushed Mum in to making the change, but now we realise it is the best thing we did.  We have three main carers that have been allocated to Dad who are very good with him.  Over the last three months they have really got to know Dad and his ways and they have become familiar to him – they are a blessing and most days Dad will be chuckling or singing with them in the bathroom.  They don’t always come together to care for Dad, often they are accompanied by one of the other 15+ carers we have encountered over the three months, but when they do, we look at them as the ‘Dream Team’.

May was a bit of a low point for us as we received short notice that Dad was due to have the operation to remove his PEG and have a replacement Jejunostomy - JEG.  With only two days notice for Dad to attend his pre-op, Dan took time off work to take both Mum and Dad. It was frustrating to be asked to go back two days later to meet with the anaesthetist for half an hour - better to be safe than sorry we appreciate that, but they don’t realise how much disruption is caused trying to get time off work and changing the routine to get Dad to all these appointments.

We took Dad in to hospital early on the day of his operation after the carers arrived at 6am to get him up.  After providing information to a staff nurse and helping Dad get in his gown, Mum said goodbye to him as he went down for his operation at 9:30 am.  I went with Dad as far as the theatre doors to keep him calm and reassure him as the cannula was inserted and the general anaesthetic given, I left as he drifted in to a sleep. Dad arrived back on the ward shortly after midday, he looked ghastly pale and was quite sick, but it wasn’t long before his colour came back and he gave us the thumbs up that he was feeling ok.

Thereafter we experienced Dad’s worst stay in hospital to date. The level of care for a dementia patient was very disappointing and the fact that he was treated as being an angry and aggressive man made us feel let down by the hospital.  How someone can go into hospital with dementia and the ward not know or show any compassion or understanding demonstrates that there is something massively wrong with their procedures. As we were leaving on the third night, we were informed by a nurse that a Mental Health Nurse had been called to assess Dad’s capacity – ‘why would you need to do a capacity assessment when it is documented he has vascular dementia and limited capacity?’ we questioned. To our relief, the Mental Health Nurse was very understanding when she met Mum the next day and implied Dad had not received the correct care. A complaint has been put to the hospital, copied to Mum and Dads local MP. An acknowledgement from the hospital stated we would receive a response addressing our concerns by the 4th July, to date (4th July) we have not received a response.  For now, I won’t go in to the detail about what we experienced that week…

After a couple of failed attempts at bringing Dad home - the hospital telling us we could collect  Dad and then changing their minds when we got there - we finally brought Dad home on the Sunday morning. Several weeks on, he does seem to be getting back to himself post-stroke. The wound he was left with is taking a long time to heal; the District Nurses were coming out to see him every other day in the first few weeks to redress it and are still coming out twice a week now.  

The JEG Dad has been fitted with is a tube that goes in to his small bowel.  As a result of the fluid no longer going through the PEG into the stomach, the timing and amount of water being given to Dad has had to change to compensate for the size of the small bowel.  Mum has had to get used to a totally new routine that has taken time and patience to put in place.

For the first few weeks of Dads homecoming he was considerably quieter and more tired than before, but when you look at the procedure he encountered and the wound he was left with, you could probably understand why.  It was a little alarming when the psychiatrist came out to carry out a six monthly review of Dad shortly after his return home and told us it could be that his dementia had become worse as a result of going under the general anaesthetic.

A trip in to Birmingham went well for Dad when he attended an ultrasound appointment on his shoulder.  The good news was that there were no rips or tears identified in his tendons, although the radiographer, who I have to add was fantastic with Dad putting him at ease and talking him though what she was doing, did identify some damage which will be discussed with us at our appointment this month with the spasticity consultant.

Knowing that Dad travelled so well in the car to Birmingham, I booked a table for Mum, Dad, Len and I to have a Sunday lunch in a restaurant close to the city centre as the other half of the family were on their hols.  I chose the venue having reviewed online ‘places to eat with good disabled access and facilities’. We worried about Dad choking, as it has become a little worse since he has been out of hospital, but we needn’t have, he ate his meal with no problems and it was both Mum and I that encountered coughing fits during our meal! 

Having had such a good experience, we returned with all the family to celebrate Father’s Day - a week later as the day itself would have perhaps been too busy for Dad. We toasted the Father’s around our table and had such a lovely afternoon, although a little noisy at times, we kept Dad involved in our conversation and he engaged with us all really well.

Some good news...the battery powered wheelchair finally arrived! It’s taken a bit of time to get used to controlling it, but it has allowed us to take Dad on some long walks around the area, which we couldn’t do before.  It has been excellent to get Dad out in the fresh air, especially in the sunshine that we have had recently.  I’ve experienced some difficulties with cars parking across pavements stopping us in our tracks, but overall the experiences have been good and so far we’ve not run out of battery!

The logistics of transferring Dad in to the new wheelchair for a simple walk is quite complex and time consuming, so unfortunately Mum has not been able to take Dad out on her own which was the main reason for requesting a motorised chair. The transfer has to take place outside as it has proven too difficult to get Dad over the door step due to how heavy the new chair is. As the cushion and arm pads need to be moved across whilst Dad is standing it becomes a two person job.  Taking Dad out gives Mum a bit of time to herself – we tell her to go and have a lie down or to rest, but I know she doesn’t…she just carries on with one less thing to worry about for that hour or so.

A physiotherapist came out to assess Dad’s walking in June and requested a further meeting with myself to see how well he is able to walk with my support and to offer advice.  I explained to Dad why she was there and he clearly processed this information because when asked to walk from his chair to the front window Dad continued to turn himself around (with support from myself obviously) and walked back to his chair as well!  She has requested that we help Dad improve his walking distance to enable him to start a six week course of rehabilitation in August for 45 minutes a week in the hospital gym. Dad has successfully managed to walk with my support to the wet room from his chair which is a fantastic achievement - although he was exhausted by the time he sat on the toilet! We have to encourage Dad to do it more often. Even though a large percentage of Dad's brain has been damaged by the stroke, he is still so strong both mentally and physically and it does make me very proud of him.

Well, that's the last three months in a nutshell! Thank you family and friends for coming back to us to read the latest news and find out the reality of life after stroke. My thoughts go out to a friend who's Dad passed peacefully away this week, she has been a great support to me over the last couple of years as our parents have struggled with illnesses including dementia. She has been so strong for her parents and she has shown what a wonderful daughter she is.

Until next time - take care and enjoy your Summer.

Love you Dad x

A family meal before Dad has his op.

Getting his colour back shortly after
returning from theatre.

Mum and Dad in the garden May 2014.

A family walk before the motorised wheelchair
arrived - quite a struggle pushing up that hill!

Oli, Pop-pops & Ash - May 2014.

Our Father's Day meal -
Pop-pops with his grandchildren.

Celebrating 44 years - 'Gosh that's gone quick!'