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!'

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.

Christmas & New Year

Would you say it's too late to wish you a happy new year when we are over half way through January? No...well Happy New Year to you all - although it probably feels a distant memory now, I hope you all had a lovely Christmas time.

Apologies for not writing sooner...it's been a busy start to the new year. Dad's been home for eight weeks now and both he and Mum are starting to settle in to a routine, but of course there have been the usual goings on...nothing's plain sailing is it?! Mum is still coming to terms  with her life as a full time carer. I'm sure she never imagined that in her retirement and at the age of 66 she would be manual handling her husband and caring for him 24/7. 'I can see how easy it is for someone to become a recluse' Mum said as she went out for the first time in three weeks last week.

The month of December was a particularly busy time for Mum and Dad - although Dad is quite oblivious to the goings on and stresses the situation brings with it, Mum has to meet them all head on. The phone seemed to be continuously ringing (and still does) with various departments making appointments to visit Dad at home - although one person we haven't heard from in two months is the social worker....?

It is quite amazing how long some of the waiting times have been to get an appointment - we asked for a wheelchair assessment at the start of December - we've been given a date to go to a hospital appointment in March...and if we wanted one for Dad to be seen at home, it would have been even later in the year than that!

Mum has had to arrange for various 'professionals' to visit - occupational therapists, physiotherapist, dietician, optician, speech and language therapist, continence nurse, district nurses, doctors, nurses to take Dads blood...what with the carers visiting four times a day, there always seems to be someone different in their house.

Dad experienced another UTI during the month, so there have been spells of anger and another course of antibiotics. More recently he had a fall whilst Mum was toileting him on her own so she had to dial 999 for the paramedics to come and lift Dad back in to his wheelchair. It was a scarey experience for Mum which has knocked her confidence - Dad was thoroughly checked over and deemed 'ok', so Mum declined another visit to A&E and agreed for the district nurse to come out and check on them. 

What is frustrating is that so many of the visiting 'professionals' spoke about 'what if Alan falls?' but nobody put anything in place. So only after the situation has occurred do people react. An assessment has since taken place for an alarm system to be put in their home for Mum to press for an instant response. Surely this is something that should have been done sooner?

Due to the small, basic wheelchair Dad was provided with 18 months ago, Mum has not been able to take him out since being home. As a result the only time she can get out of the house is when someone is with Dad as he shouldn't be left alone. I am able to be there some days when I work from their house and Dad's brother Frank who has recently retired is also able to help - but all these days need to be planned. In an ideal world Dad would have a more comfortable, supportive wheelchair with brakes and an assisted power battery so that Mum could go out with Dad and have some 'normality' in their lives, like simply going to the local shops together. For now, Mum is reliant on others, in particular Sue their daughter in law, to bring in shopping and meals.

I took Dad out for a walk to their local shop one Sunday morning. I was exhausted after I'd pushed him up the drive! The wheelchair is so difficult to manoeuvre and trying to stop it from falling down a curb puts a lot of pressure on your back I tell you. We'll see what they say at the assessment in March, in the meantime we are limited in getting Dad out of the house. Anyway - the visit to the shop was the first time in 18 months Dad had been in one! Other customers wished my Dad, the little old man in the wheelchair, a good morning and he reciprocated their greetings. He handed over a newspaper to the assistant, when he was told 'that'll be £1.50' he looked at me confused and asked 'how much for a newspaper?' I'm sure Dad's living in a different era in his mind - one when things were a little cheaper. He was very caring as I pushed him home - 'Are you ok pushing, you're not hurting yourself are you?' and that's the loving and caring Dad I know. The fact he couldn't see me sweating and puffing behind was probably a good thing!

One of the evenings I visited, I was made aware by Mum that Dad had called her 'a silly old cow' that day ( not always a rewarding job this caring malarkey is it?). When I reminded Dad what he had said he sincerely apologised to Mum and pulled her close to give her a big one armed hug. I told him that if it wasn't for Mum giving up her life to care for him he would be in a care home, he looked shocked 'I'd commit suicide' he said...probably a good thing he doesn't recall the last 18 months then...

Moving on to the good times - our Christmas day together as a family was a happy, special time spent at Dan and Sue's house. Dad thoroughly enjoyed his Christmas dinner, opening his presents and laughing with the family, especially his grandchildren as we played Twister and other games throughout the day. 

A pleasant surprise for Mum and Dad was when they opened one of their Christmas cards to find a number of photos inside from their 'youth'! Their old friends Glenys and Jim had sent them for Mum and Dad to reminisce. Unfortunately Dad didn't remember them, but Mum enjoyed telling him about the good ole days and we enjoyed telling Dad how shocked we were to see him with a six pack and a cigarette in his hand! After explaining to Dad what a six pack was, he seemed quite proud!

We also took Dad to a local pub for a meal between Christmas and New Year - something we hadn't done as a family since Dad had his stroke. We all enjoyed a bit of normality that day, although there were worries like will Dad need the toilet while we are there and will we be able to change him, will he start choking on his food, or shouting if it gets too noisy. They were worries for another day as all went well and we all enjoyed the moment of being together...a bit like old times...but different. When asked what he'd like to drink he replied 'Arrr, I'll have a beer'. Dad had a taste of Dan's before we ordered - 'Urgh' he said 'that's bloody awful!' His taste buds have definitely changed as a result of his stroke.

An additional pressure we received on Christmas Eve was a letter to Mum with an appointment to return to hospital on the 30th December for more tests following a mammogram she had been for earlier in the month. This caused us all to start thinking of the 'what ifs' and how we would manage if something was wrong with Mum's health and we had to care for Dad. It scared us to think that a difficult situation could possibly become even more difficult... Mum, I am extremely pleased to say, received positive news much to the relief of us all. Following an x-ray and ultrasound, it was decided a biopsy was not necessary but that Mum should continue to check herself once a month. Mum, who had not had time to think about the implications of the situation was extremely emotional after she had time for the good news to sink in. It was a wake up call for us all that when times are tough...they could always be a little bit tougher. Lesson learnt, we should embrace what we have - words sometimes easier to say than do.

We entered in to the New Year full of hope and positivity. We watched Gary Barlow's New Years Eve celebrations on New Years Day with Dad as he'd already been taken to bed early by the carers on NY Eve. He thoroughly enjoyed the music and singing asking several times throughout the programme 'who's this singing?' and telling us 'he was very good'!

Unfortunately the positivity didn't last too long as we all seemed to come down with sickness and diarrhoea at the same time in the first few days of the new year. It was yet another testing time - I felt utterly helpless knowing that I couldn't be of any use. As I was able to take another day of rest after feeling physically wiped out, I felt immense guilt knowing Mum, who was feeling just as drained, was back to her duties as a full time carer - I seriously do not know how she does it...

Thankfully we are all feeling much healthier now.

There are still ongoing problems that we need to find answers to - like Dad's incontinence. Mum is still waking three or four times during the night to keep Dad as dry as possible, we are still encountering problems with the carers that come in and change Dad's pad but leave him in wet soiled clothes - how do they expect to know if something's wet if they wear gloves??? Very frustrating as it then falls to Mum to change Dad...the idea of the carers coming in is to help Mum and make it easier for her.

We have increased Dad's tablets taking advice from the GP for both pain relief and spasticity...and we have decreased them too as we have seen Dad turn in to that zombie like state where he can't even find the energy to open his eyes. Thankfully since reducing them, he seems to be more communicative again and engaging.

At the end of this month we have to take Dad in to hospital for a procedure to have a new PEG fitted. This is the tube going directly into Dad's stomach that feeds his daily intake of water. Hopefully this can be done as a day procedure...but its another one of those hospital visits that fills us with apprehension.

There is so much more I could write, so many more frustrations, emotions and funny little stories but I will not take up any more of your time. 

I know I am still privilidged to have my Dad with me. I am very aware that there are many, many people out there experiencing similar difficulties and frustrations caring for loved ones and I also see the pain and suffering when loved ones are taken away from us...at such a young age too. Let me just remind you that this blog is in no way for people to feel sorry for me or my family, this is a communication tool for my wider family and those friends that are interested, to find out how Mum and Dad are doing, to understand our situation and how we are dealing with it. If we were to share our stories individually to each and every person that asked how we are, we would have no time to do anything else. 

At the same time, this blog has brought new people in to my life, people who are experiencing similar circumstances and it helps me to realise that we are not alone. Together, we can offer support and pick each other up on those low days when others aren't quite sure what to say. 

To the people who have been there for us over these difficult weeks of Dad's homecoming, we thank you for your patience and support. We try our best, but we couldn't do it without you. Your continued support means more to us now than ever.

Until next time...

Love you Dad x

Dad in his trendy new 'geek' style
reading glasses

Christmas Day with Ruby

Christmas Day with Ash

Having a good time on Christmas Day

With the men at the pub - Dad, Len and Dan

New Years Day - Pop-pops and Ruby share
a giggle together!

Back in the day...Dad and his six pack!!

Young love that
lasts forever x

Dad's home!

Well we made it, Dad finally returned home where he belongs. How wonderful after 19 months of living apart, Mum and Dad are back together under the same roof.  The last week of November was certainly more challenging than most, which was to be expected…but returning home with a UTI was not part of the plan – I’ll fill you in later.

When I look back over the last 19 months, I can clearly recall the times where I have felt most vulnerable and emotional with a constant feeling of sickness in my stomach and those times were when there was any change. When Dad first had the stroke, when he moved to the step down at NG after five weeks in hospital, moving to JC the neurological care home last September and any subsequent time Dad spent in hospital.  Those feelings have come back with a vengeance over the last couple of weeks. Dad is at home now where he belongs, but the real hard work has started and my worry now is for Mum and how she is coping both mentally and physically.  Mum suffers with trigeminal neuralgia (TN) - a condition that causes recurring severe pains through the nerves in parts of the face. She has suffered from this for years and prefers to do it in silence.  The pain is often unbearable and stops Mum from being able to talk and eat but she grits her teeth, literally, and perseveres – she is a true warrior in every sense of the word.

Throughout the month we have received many texts and messages of support about Dad leaving the care home which have been encouraging for us all. Something I think I must clear up however is people’s understanding of a neurological care home and rehabilitation.  Although the home nursed people with brain injuries, the care was no different to that received in any other nursing or care home up and down the country.  The rehabilitation Dad received was for approximately half an hour to an hour each week, sometimes Dad couldn’t even sustain that. People seem to think that he had been receiving intensive physio sessions and therapy on a daily basis, but unfortunately this was not the case – apologies if I gave you that idea.  Much of the recovery Dad has made is from the daily visits and interaction from Mum and other members of family and friends engaging with him and trying to keep him in the real world.

It was an emotional day when we brought Dad home - I hardly slept the night before I was so excited, yet apprehensive at the same time. We found it emotional saying goodbye to the residents of JC especially those who had spent quality time with Mum and Dad during their time there.  Mum wrote goodbye and good luck messages to the residents families who over the last 15 months had built friendships with Mum.  Many of the visitors, like Mum herself, travel to the care home on a daily basis to be with their loved ones – almost like a vigil. There is an understanding between them of the heartache involved in seeing a loved one change so dramatically, both mentally and physically, from a brain injury. The families we met showed courage and dedication and are a true inspiration to us all - it is not only the victim’s life that changes in an instant forever, but also the lives of the loved ones around them - the impact on the family is immense. The reality is that these life changing events could happen to any one of us at any time, as my family found out.  We have seen first hand the tragic impact of the brain being starved of oxygen, the devastation caused by a road traffic accident and the destruction to life that Huntington’s disease and alcohol addiction slowly brings. It’s been an eye opening and emotional experience.

So how has it been with Dad returning home – it is great to have Dad home and back where he belongs, people advised it would be difficult, but the reality is that nothing could have prepared us for just how hard it would be.  With such a big change it is paramount that everything should run smoothly and be in place for the transition.  It is hard enough dealing with the change, so to still be chasing and battling for things to be in place after the event is extremely frustrating and adds to an already pressurised environment, as we have found.  Surely there were enough people involved to enable a smooth transition? We are still waiting for essential equipment to arrive that we were advised would be provided in advance of Dads return, including equipment to be used in the event of a fall, which is frustrating and surely not acceptable? An Occupational Therapist from the local authority came to assess Mum and Dads house and made it clear she was unimpressed that this had not already been arranged; she also made suggestions for other adaptations that may help.

Regards the carers…where shall I start - I guess positively would be good? The care package is for two carers to visit Dad four times a day, once in the morning to get Dad up, twice during the day to toilet him and finally at night to take him to bed.  Well…some of them have been really good showing lots of promise, they have visited several times and have built up an understanding of Dads needs and complexities and have learnt how to diffuse the situation when Dad becomes angry and frustrated…others, well, they leave a lot to be desired.  We have already raised concerns about the way one carer spoke to Dad shouting at him ‘If you carry on like that you’ll have no carers coming in to look after you’…yes because that is the way you speak to someone with brain damage. Twice in a week Dad’s glasses have been handed back broken to Mum by the carers – this has resulted in family members having to take them to the opticians to be fixed as Mum is unable to leave the house and Dad on his own.

A care plan was produced with help from the family who know Dad better than anyone, it is meant to be read by every carer that comes in to the house to look after him – but this isn’t the case.  If they don’t read it they don’t have an understanding of Dads needs and disabilities.  Time keeping is a massive issue – so many times Mum and Dad have waited nearly an hour for them to arrive after their allocated time – but we have been told by the care provider ‘give it time for things to settle, it’ll be better next week…’ Mum has resulted in toileting Dad herself several times a day as a consequence of his incontinence and poor time keeping by the carers.  We put a call in to the incontinence nurse to visit within days of Dads return, but following a call to chase we have been advised ‘the appointment will take a while’. In the meantime the pads don’t seem sufficient in holding the urine in place, Mum walked in to the lounge the other day to find it trickling down Dads leg and collecting in a puddle on the carpet…incorrect pads or incompetent carers, we’re not sure?
With the amount of water going through Dads PEG it is inevitable that it has to come out the other end…but there seems no end in sight to the dietician reducing the 1,800 ml of water going through.

The incontinence has a huge impact during the night.  We asked for night time records from the care home to understand how often Dad is changed through a night to give us an expectation of what Mum would be dealing with  – once a week on average according to the records, otherwise he sleeps through the night. We don’t think they were very accurate – as every night Mum checks on Dad and ends up having to change his pad and clothes on her own, not easy at all when Dad is lying in bed unable to help Mum and in the worst situations, she changes the bed sheets too. It isn't realistic that Mum can sustain this - I don't think anyone could, so to try to prevent it from happening we have asked the dietician to change the timings of the 1,800 ml of water going in to Dad, so it is not so near him going to bed.

The few nights that I have stayed over to help them both I have found it extremely tiring, checking on Dad through the night and helping Mum do the pad and clothes changes – how she does it on her own I do not know.

The days for Mum are exhausting too – the washing machine is endlessly on as Dad can have up to three changes of clothes a day which all require cleaning, plus all the bed linen and towels on top and she now has to prepare and cook three meals a day. Sue, Mums and Dads daughter in law, has been a big help popping in meals to heat up and fetching shopping in for them – such is the convenience of living five minutes away.  On top of this, throughout the day Mum has to ensure Dad takes his tablets – 12 in total.  This is not easy either as Dad is so susceptible to choking if he does not swallow them correctly.

Disappointingly we were informed as Dad returned home that the PEG tube inserted in to his stomach has started to attach itself.  The tube has to be cleaned daily and pushed in and pulled out by an inch once a week to prevent the skin growing around it.  Unfortunately this means Dad will have to be readmitted back in to hospital to undergo a procedure to fit a new one.  Not great when we’ve only just got Dad home.

Oh yes - you did read correctly at the start of the blog…Dad returned home with a UTI. We picked up on it once we were home and early Saturday evening the smell was so strong and the urine so dark we phoned the NHS medical help number 111, to get an out of hours Doctor to prescribe antibiotics.  I spoke to three different people relaying the information before they confirmed a Doctor would be sent to see Dad.  To each of these people I explained that Dad was no longer at the care home and that as of yesterday, he was officially back at his original home address and provided the details.  I was gob smacked, though probably shouldn’t have been with our experiences to date, to receive a phone call a couple of hours later from ‘Prime Care’ advising that a Doctor had just arrived at JC (the care home) but Dad wasn’t there….what can you say?!  We then had to wait another four hours until 1am before he finally arrived at Mum and Dads house; fortunately he was able to prescribe antibiotics which Dad started immediately.  This took Dads daily tablet intake up to 18. For five days it seemed like Mum was constantly giving Dad tablets – well she pretty much was. Thankfully – the UTI has now cleared.

As a result of the UTI, we found we couldn’t leave Dad sitting in wet and smelly clothes, especially when it was at least another couple of hours before the carers were due back.  On one occasion Mum and I decided to take Dad to the toilet ourselves, as we have done many times before.  What an experience!  Just as I was pulling Dads trousers down a shot of diarrhoea landed on my hand and jumper…’Mum, look what Dads just done’ I said. We started laughing with that ‘black humour’ that takes over - as Dad started splattering diarrhoea shots all over the bathroom floor. We managed to sit Dad on to the toilet, his clothes and pad in a state.  Dad was chuckling away at the situation – toilet humour is the one thing guaranteed to make him smile these days, but then the smell hit me.  Retching I ran to the upstairs bathroom to wash it off me, leaving poor Mum to clean up the mess.  Bless Dad – he was very apologetic after the event, even though he was smiling when he said ‘sorry’.

Dad is making good use of the bathroom as you have read and the vertical lift we had installed is definitely money well spent. Dad uses it twice a day; it is an excellent solution to get Dad downstairs in the morning and back upstairs to bed at night. He has been likened to the Pope in his pope mobile as he slowly glides up and down from one floor to the other, sometimes giving us a smile as he goes.  The grandchildren think it’s the best thing ever - ‘Can I have a go in your spaceship Pop-pops?’ they ask on every visit!

We asked Oliver what he thought about his Pop-pops being home at last – ‘I don’t like it…’ he replied – ‘oh’ we said alarmed ‘what’s wrong?’…’nothing’ he said with a big smile on his face ‘I love it’! I think he’s been watching too much X-Factor!

People keep asking – does your Dad know he’s at home and has he settled?  Well we’re not sure.  We tell him often enough he is at home and how good it is to have him with us, he remembers his address – with prompting, but whether he recognises it and it feels familiar we can’t be sure.  He’s never used a lift to get upstairs before so that’s not familiar to him.  The angry spells still happen so the environment doesn’t make a difference but they are usually caused through frustration or mishandling and Dad continues to be tired.  Mum has been playing music to him and he sits at the table for his meals and to read (or look) at the paper.  We desperately need to get a routine in place to help both Mum and Dad but we appreciate it will take longer than planned – which is why we feel so strongly that everything should have been in place to come home to. I've tried to explain things how they are and to keep it real, life after stroke is immensely challenging. I hope with all my heart that life gets a little less complex next month for Mum and Dad.

It would help so much if there was one contact, one person to speak to, to deal with all the issues that keep arising...but we are left to leave messages with so many various departments and then wait and wait for them to return our calls. Very frustrating. And I know we are not alone as a friend in another part of the country is experiencing exactly the same frustrations whilst caring for her parents too.

Another friend said to me this week when I was off loading, it’s not about taking it day by day anymore, it’s hour by hour – and that is exactly how it feels.  I never know when I phone Mum whether she will be angry, emotional, frustrated or 'ok'. We will keep going as we always have done and we will continue to give Mum the support that she needs in her new role of full time 24/7 carer to her husband - she is already looking exhausted and feeling emotional. I was advised to seek help from numerous charities before Dad left the care home - 'I'm sure they'll be able to offer some support through the night' I was told...unfortunately this is not the case - every line of enquiry has resulted in a dead end. If anyone has any ideas or has learnt from similar experiences - please get in touch and let us know.

As the Christmas festivities come round again – we thank each and every one of you for your support over the last 12 months and for keeping in touch and reading this. You won't be surprised to hear that Mum doesn’t have the time this year to write the 150 plus Christmas cards she would usually send to family and friends – so please accept their love and best wishes via this blog and pass them on to those who don’t have access to the internet.

Wishing you all a special time this Christmas and if you too are caring for loved ones – our thoughts will be with you.

Here’s to a happy and festive Christmas time.

Love you Dad x

Dads last night at JC - 21/11/13

Crossing the threshold with Len 22/11/13

Pop-Pops in his 'spaceship'.

Dad on his raised chair with
his grandchildren.

A typical post stroke facial expression
 from Dad.

Nearly home...

Always a pleasure to see you back here to share the month's events - thank you.

One of the many worries we have had whilst Dad has been rehabilitating after his stroke, is how will people react if Dad has one of his shouting episodes when we are out in public? If you recall, I've already had one experience where people just stopped and stared when Dad was shouting at me whilst transferring him out of the car. You imagine if you were enjoying a family meal in a restaurant or out shopping and you heard somebody suddenly start shouting and swearing and becoming abusive - how would you react? I imagine you would be quite offended, disgusted even - especially if you were with young children hearing such bad language.  This is a challenge that we have to confront, as the alternative is that Dad spends the rest of his life behind closed doors, only venturing out for hospital appointments. Admittedly the shouting only occurs if Dad feels pain, particularly in his arm, or if there is too much noise - it is certainly more frequent if he is suffering with a UTI too.  

Well at the start of the month, Mum bit the bullet and took Dad to the local pub along with another resident and an activity coordinator from the care home. It was a quiet afternoon so noise was minimal in the pub, Dad ordered himself a coffee - not his usual tipple, but times have changed - and he ate all of his food, without any shouting or upset. Mum reported a pleasant afternoon! This is certainly something we need to start doing more of once Dad returns home, although similar to taking a baby out, there's a bit of thought planning to do before hand and lots of things to pack to cater for every eventuality.

Those of you who are Corrie fans will be familiar with Nick Tilsley's portrayal of brain damage following his car accident in the programme. A week after Dad had his stroke, we were told that the damage to Dad's brain was on a parr with a head injury as a result of a road traffic accident. The anger and frustration that Nick portrays is a glimpse to what we are experiencing with Dad, but unfortunately Dad is not acting.

During the month Dad developed a rather aggressive cough. He seemed to be endlessly choking - it was so loud, so often and it made his face go red...it was really concerning for us -  nurses and staff even came on several occasions to see what was happening, hearing it from two corridors away. But for all our efforts of raising it with the care home, it took two weeks before the Doctor saw Dad on her round and diagnosed bronchitis and a course of antibiotics which helped to clear it up with immediate effect. You might wonder why we allowed it to go on for so long without Dad being seen by a Doctor, but after more than a year  of keeping on top of Dad's care you do feel you might be over reacting, especially when the nurses are more qualified than you to know whether to call the Doctor as an emergency. Believe me, Mum was there every day raising our concerns - and rightly so now knowing it was bronchitis that could have led to pneumonia. I believe it was lack of communication between the care home and the surgery that let us down, we were informed the regular Doctor had been on leave for three weeks - contingency springs to mind?

We arranged privately for a second opinion on Dad's medicine, spasticity and mobility before he leaves the care home. The neuro physiotherapist was recommended by the care home's physio and the social worker. He identified straight away that Dad's pain relief is not being managed sufficiently. 'There is no way Alan should be experiencing this much pain' he told us and explained the pain may also be heightened as a result of damage caused by the stroke to the thalamus in the brain, which has a role in feeling pain. He made a recommendation to increase Dad's pain relief medication, which has been put forward in a report. We are currently waiting for the Doctor to review and action. There may be potential side effects including drowsiness, so we were advised it would be better to manage these whilst Dad is in 24 hour care, and as there are less than three weeks to go, we hope this is done soon.

A full assessment was carried out on the left side of Dad's body - 'You hurt me and I'll hurt you' Dad threatened the physio with a clenched right fist. He responded to Dad very professionally and was able to get Dad to stand and walk with his support. He stretched Dad's left arm, not very far before Dad started shouting that he was hurting him. 'He should not be in this much pain' he told us. We were also advised that Dad had good range in his leg and his hamstrings were not too tight, as had previously been suggested. His focus was on Dad's left knee, explaining that this was the reason why Dad could not place his foot to the floor. He felt Dad's knee and diagnosed arthritis and irritation of the knee. Understandable considering Dad had a right knee replacement six years ago, his left knee must be suffering from the same wear and tear of years of sport.

We now have plans to meet with a stroke consultant who works privately in partnership with the neuro physiotherapist to try to get a pathway in place to treat Dad's knee and shoulder simultaneously. We are hopeful, but not naive to know that you 'get what you pay for'.

A second opinion has also been provided on Dad's hand and arm splint and taking the advice, we have now purchased a saebostretch for Dad's left hand to aid with his recovery once he is home. The splint has been mentioned several times during Dad's rehabilitation, but the NHS have been reluctant to provide one. Therefore, we have now invested some of the money that was raised for Dad last year at the charity golf day to aid in his rehabilitation as planned - so thank you if you supported that day.

We have continued to do all that we can to engage with Dad to help his brain continue to reconnect. Music as you know is amazing therapy for Dad - we have been informed he has been on the karaoke machine a few times this month and we had a lovely evening playing hymns and church songs to him as a different genre of music. Hearing him sing so enthusiastically to 'This little light of mine...' put a smile on all of our faces. Dad has also been working through a maths workbook that Mum has taken for him  - admittedly it is for ages 3-4, but it keeps his brain active. Who knows we might be on age 5-6 before you know it.

A lovely moment to share with you this month - back in the day we put a white board in Dad's room at the care home so we could communicate with him when we weren't there. 'Had a great day with you today Dad', 'Wendy and Dan will pick you up tomorrow at 12pm' even Oli and Ruby write messages and draw smiley faces for their Pop-Pops. We like to think the care staff point the messages out to Dad - we know he won't remember the message, but in the moment it is a reminder that he has a family that loves him. Following a toilet visit I had assisted Dad with, we were on our way back out of the room when I showed him the white board so he read the message which ended 'Love Wendy'. He asked me for a pen, so I wheeled Dad close to the board and he wrote 'I do. Alan xxx'.

A further meeting with the social worker went ahead this month to discuss in more detail the arrangements for care when Dad is home. Dad sat with us for the meeting. The social worker speaks slowly as a result of the stroke he suffered 14 years ago, but because he does, Dad seems to be able to keep up with what he is saying. Dad totally engaged with him, I feel there's almost an element of sympathy that Dad has for him, not realising that he is in fact in a worse situation than the social worker. It is probably well documented how I felt about the social worker when he did not support our quest for further rehabilitation for Dad last year, but to see the way he spoke to Dad and how he made him laugh and smile on several occasions throughout the meeting, it made me realise that he obviously does have a very good understanding of what life after stroke really means. Again he referred to the Doctors diagnosis last year - 'look at him now' he said 'who would have thought it'.

To everyone who supported and sponsored Helen and Katie to motivate them on their half marathon challenge raising money for the Stroke Association, thank you so much. It was an amazing and emotional day and they both completed the Bupa Great Birmingham Run in under three hours - fantastic, we were all very proud of them. Back at the care home, we told Dad what they had done on his behalf and he welled up calling them both 'Champs'. I'm not sure on the totals raised yet, but I will let you know.

Well next month I hope to be sharing with you the news that Dad is back home. The vertical lift is in place and the building works, including wet room and ramps at the front and back of the house, are complete with just the snagging issues to finish. We now need to make sure all the equipment is delivered and put in place, such as the bed with rails, air mattress, shower chair - the list of jobs is substantive and time is running out, but at least the 'big jobs' are completed and the house no longer resembles a building site. There has been so much upheaval at Mum and Dad's house lately and there has been a lot of hard work put in to making it all happen. Hopefully a bit of normality will now return - well until Dad returns, as there's nothing normal about wiping your Dads bottom and seeing your Mum struggle to transfer your Dad on her own from a chair to wheelchair and worrying about their safety.

I am well aware that we are not the only family to experience difficult times and that life sometimes does deal you a tough card - but by staying positive and believing and having your support, it certainly helps us. As always - thank you for the visits, for the read and for sharing our journey, until next month.

Love you Dad x

Walking with Dad at the start of the month.

Dad peddled one mile in 10 minutes
using both legs 12/10/13.

A Saturday night watching 'Strictly' - Dad's getting good
at remembering the judges names with a bit of prompting!

Dan, Oli and Ruby join Mum and Dad
 for tea 18/10/13.

Comparing our leg supports...and Dad tells
me I'm the brave one !!!

So proud of them - Helen and Katie with
their well deserved medals 20/10/13.