Life with Vascular Dementia as a result of Stroke - February 2016

An excellent article below providing an insight in to the realities of caring for a family member with dementia. My Mum, brother and I can relate to the situations the author writes about having first hand experience and writing about them myself in previous blog entries. Although my blog is called 'My Dad's Stroke Recovery', as a family we've found out that the harshest reality is living with and caring for a loved one suffering with vascular dementia - my Dad's as a result of his stroke.

"My mother has had Lewy Body dementia for the past three years. I recently read an article in a newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to ‘see past’ the disease, as the person you love is ‘still in there somewhere’.

It said you have to be patient, keep calm, and try to inhabit the ‘dementia world’, wherever that is. It may as well have recommended buying a unicorn and riding it there.

I’m not going to pretend I have answers, because I haven’t. I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don’t tell you about the reality of what it’s like to live with this appalling disease.

They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don’t tell you what sort of nappies to buy when she becomes incontinent; let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police because you’re clearly a member of the Gestapo who’s trying to poison her.

They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

They don’t tell you about the resentment that arises when relatives become invisible and stop visiting, leaving you to deal with the whole sorry nightmare.

They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with Social Services you have to trudge through when all you desperately want is some advice and support, but it takes six months for them to assess whether or not you’re entitled to even get on the waiting list for advice and support.

They don’t tell you about the hours you’ll have to spend on the phone trying to claim disability benefits for her because the person on the other end insists that they have to speak to her personally in case, as her daughter, you’re trying to steal from her. They’re sorry but they really do have to check with her that this isn’t the case, regardless of the fact that she can’t remember her own name, let alone how to use a phone, because that’s how the system works.

They don’t tell you about the GP’s visible annoyance when you bring her to get checked for a urinary infection for the fourth time in six months, even though they were the one who advised you to bring her for regular checks. Of course she’s displaying peculiar behaviour, she has dementia, and they have lots of other patients to see today. Cheers doc.

They don’t tell you about the friends she’s had for years who gradually stop coming to visit because they ‘hate seeing her like that’. I’m pretty sure she hates being ‘like that’ too, but she could really do with a friend. They’ll all be at her funeral though, because that’s what friends are for, isn’t it?

They don’t tell you how to deal with the crushing realisation that she’s never even going to be able to phone you again, let alone see you get married or be a grandmother to your kids.

They don’t tell you how to channel the anger you feel when you realise that your fellow 30-somethings’ lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you how to deal with discriminatory landlords who don’t want her living in their property because dementia has rendered her, in their eyes, a ‘threat to the community’.

They don’t tell you how to not laugh when she insists that you give ‘the kids’ a bath, because ‘the kids’ only exist in her head but you still run the bath and carry out an impressively elaborate child-bathing mime because it makes her happy, and she doesn’t have an awful lot to be happy about these days.

They don’t tell you what to say when your 67 year old mother cries because she thinks she’s 12 and panics because she can’t find her (long dead) mother and she’s packed all her belongings and begs you to just take her home."

So many people expressed an interest in my blog and asked why I don't write anymore...I guess life just became 'a little more hectic' and spare time became less and less. As a lot of the blog readers won't have been in contact with my Dad over the last 12 months, they may not understand the highs and lows that we, as a family, have experienced as I have not provided an update since December 2014. I've captured a 'snapshot' of the highs in the photographs below...as I understand it's 'difficult' to see Dad experiencing the lows! 

We truly treasure the good times - to make my Dad smile or laugh is a blessing and a small reward for the hours of relentless hard work, and commitment we unconditionally provide, especially my Mum on a 24/7 basis, with very little thanks or appreciation.

Love you Dad x

Life after Stroke - December 2014

October got off to a good start when I was able to take Mum out for the day for the first time since Dad came home - and it didn't involve a visit to a hospital! It was great to have lunch out and do a bit of shopping - I really miss the days we used to spend together. Thanks to Dads brother and sister in law for making it happen.  Unfortunately things went a little downhill after that.

It's Mums health that's been suffering these last few months as anyone involved with caring for someone 24/7 will understand just how difficult it can be. To all the people who are thinking 'I told you so'....you may as well stop reading this now if we haven't got your support.

Well the round the clock care finally started to take its toll on Mum. Two things - firstly an incredible pain in her right shoulder which literally seemed to wipe Mum out for weeks.  I don't know how she was able to carry on doing what she did/does.  I'm sure she won't mind me telling you the reality that she looked the worst I have ever known Mum to look as the pain was clearly etched on her face.  Following several emergency doctors appointments, visits to the hospital and varying strengths of painkillers which practically knocked Mum off her feet, she was diagnosed with osteo arthritis in her shoulder.  As a result Mum has been told to stop lifting Dad and helping the carers, which has made moving Dad in the house that much more restrictive when she is alone with him - which is most of the time.

The other condition Mum has been suffering from is shortness of breath and heart palpitations. Another set of doctors and hospital appointments followed. The good news is that the suspected enlarged heart the doctor thought Mum was suffering with did not show on the echocardiogram. The doctor diagnosed Mums symptoms as being due to a change in lifestyle.  Although reassuring, it is still a worry to see Mum so breathless walking to the post box and back at the bottom of the road.  We've tried to set her a challenge to have a small daily walk to help get her fitness levels back up - and also because it's good for Mum to bump in to friendly faces of those neighbours and friends she no longer sees. It's not always possible as Dad can't be left alone, but if I am visiting I will always try and get Mum to have a short walk and get a blast of fresh air.

So, on to the original subject of my blog...my Dad! I suppose in comparison to Mum he's had a good few months in the life he is now accustomed to. Dads had a couple of visits to hospital - two regarding his JEG and one for his quarterly botox injections. A lump has formed around Dads JEG which is now a suspected hernia - we have a further appointment to attend in January. The botox appointment wasn't such a pleasant experience this time around. Unfortunately the usual consultant and physiotherapist were unavailable so two very lovely physiotherapists stepped in - but it didn't go quite as well. An hour and a half it took to have four injections, with a 30 minute break in between! Credit to the physiotherapists who persevered through Dads anger and confusion to successfully administer all the injections. There is a definite benefit shown when we are able to stretch Dads arm and leg a little further as a result of the botox.  Another appointment follows in February - let's hope the consultant's back!

One of the real frustrations we have with Dad is his habit of continuous scratching - most likely as a result of the medication he takes. He continues to scratch throughout the day on his lower back and top of his bottom. It must be infuriating for him to have a constant itch, but as a result of the endless scratching, several spots have appeared which recently required the attention of the nurses from the virtual ward to investigate.  A steroid cream has been prescribed along with the various creams that have been prescribed to prevent the itching in the first place - nothing seems to work...and we haven't quite resorted to a boxing glove yet.

We finally received funding for Dad to attend the local dementia centre nearby.  He is collected and dropped home by a council bus and has, to date, attended three times for a few hours on a Wednesday.  All seems to be going well, although it is disappointing that Dad is unable to recall anything to tell us from his time spent there, but the centre have reassured us that he is well looked after and well behaved. They are happy for Mum to call and ask how the visit went. Although it is meant to be respite for Mum, she has walked there on a couple of occasions (to get some exercise!) and to see that Dad is settled and 'happy'.  She was pleased to report back that on one occasion Dad was busy painting at a table and on both occasions he was surrounded by ladies! Dad also attended the centre's Christmas party where he was entertained by a singer and came back singing Christmas carols to the carers at home.

He made us laugh when Mum was telling the carers she had booked Dad a place at the Christmas party - he pulled a face. "And there will be a Santa Claus there too" she said enthusiastically... "Let's hope she's good looking" he said!!  After also attending the party for a short time, Mum said it was extremely difficult when sitting amongst the people there, to identify who were the dementia sufferers and who were the relatives, as they all looked so smart and 'normal' and Dad was one of only a few in a wheelchair.

More recently we have been fortunate to be able to take Mum with us to her nieces wedding which made for a special day to have quality time with her family.  There was an element of sadness that Dad was unable to share the special day with us, though it was touching to hear he was remembered in the speeches and we had a toast in his absence. We arranged for Dad to stay in the capable hands of 'Sarah the Carer'. Mum explained to Dad that we were going away and that Sarah would be staying to look after him - "It's alright Al" she said, "We'll have a party while they're away!" "Ooo" said Dad..."Shall we have sex after?" - "Al" Sarah said, "You're old enough to be my Grandad"...."It's ok..." he replied, "I'll be gentle...!" Such are the entertaining snippets of conversations we have with Dad these days as a result of dementia!

He can be a little forward with the carers on occasions, but they deal with the situation very well as they have experience and an understanding of caring for dementia sufferers. This has not always been the response we've received from people who clearly don't appreciate Dads brain has been effected as a result of his stroke.  It has taken me a long time to come to terms with my Dad as he is today - to accept the way he is, the way he thinks and the things he does.  I have had to learn that it is wrong to argue with him and get in to confrontations as his brain does not work in the same way as before the damage was caused and there are ways to deal with difficult situations - having a sense of humour is a big help. I applaud the amazing people who work with dementia sufferers, who give these people the respect they deserve whilst suffering from this dreadful illness, unfortunately from what I read on a regular basis and from our own experiences over the last couple of years...this is not always the case - is it?

As the year comes to an end I look back fondly on the special memories we have shared with Dad, especially his 70th birthday celebrations and the fact he is at home where he belongs. But it should not be to the detriment of Mums health - which we will continue to monitor.  We have some fantastic support from the carers that have become part of the family and I take great comfort knowing that Mum has people that can be relied upon going in to her house several times a day to provide care and support for her husband, my Dad.  Mum has given up her life for her husband - they made their vows 44 years ago "In sickness and in health" and true to her word she is demonstrating her love.

A big thank you must be given to those friends that regularly keep in touch with Mum - it means more than you even realise.  Just to know she hasn't been forgotten and that friends understand she may not respond straight away but that she will in her own time, means a great deal.  Recently a neighbour brought some homemade mince pies round for Mum and Dad to enjoy - Mum was touched at such a thoughtful gesture.  It's a selfless job with little reward that Mum has taken on and I know she sometimes feels isolated.

There is never a good time time to pop round or call, but that should not put people off doing it all together. It was lovely to read Mum and Dads hundreds of Christmas cards, even the carers commented they'd never seen so many, and read the thoughts written in them.  Mum has now got herself an email address which should make keeping in touch even easier - if anybody would like to send Mum a message, share photographs or just keep her in the real, well virtual world, drop me a line on amy.murray69@hotmail.co.uk and I'll forward it on.

Dads brother Frank, sister in law Sylv and two friends from the golf club Alan and Dave, have continued to visit throughout the last 12 months.  They understand that Dad may sleep through their visit, that he may be watching a sporting or comedy programme and he might just tell them to "shut up" if he's listening to it, they know that Mum will continue to busy herself about the house working through her endless 'to do' list, but they accept that this is how it is and still show their support for Dad by being with him and holding his hand. Again, for that, we are truly grateful.

We appreciate there are many people out there living through difficult times at the moment and our thoughts are with them over the Christmas period.  Mum and Dad won't be sending Christmas cards this year but they have made a donation to the Stroke Association. Thank you so much as always for taking the time to read this lengthy blog. Wishing you all the happiest of Christmases and a fantastic new year filled with an abundance of hope, good times and good health.

See you in the new year.

Love you Dad...and Mum too! x

  

        Mum enjoying a day out at the start of October.

Ruby having a cuddle 

with Pop-pops.

A bite to eat after the botox

appointment - October.

Still in Love ❤️

A great day for Mum to catch up

with her family.

Dad with Sylv his sister in law.

A selfie with my Dad

                                 Happy Christmas from us all xxx

         

Life after Stroke - October 2014

Hope you all had a wonderful Summer and spent some quality time with your loved ones during the many beautiful sunny days we were lucky to have had these last few months.  We certainly made the most of taking Dad out to enjoy the sunshine on as many days as we could, sometimes just for 15 minutes for him to get some fresh air, other times for over an hour, when he picked up a healthy colour too.  The motorised wheelchair has been put to good use, but Mum still hasn't been able to take Dad out on her own due to the complications I wrote about last time about transferring Dad.  

Our Summer got off to a good start with three family birthday’s in the first week of July.  Dan and Ruby celebrated their birthday’s with Nanny and PopPops. It was great to see Dad sharing Ruby's excitement when opening her birthday presents, especially her ‘ruby red’ dressing up shoes…'Put them on Ruby' Dad shouted, ‘Put them on and give us a twirl’.  It was a happy family moment for us all to enjoy hearing Dad engage with us.

Mum’s birthday followed.  She explained to Dad that this was the first birthday for three years that they had celebrated together in the comfort of their own home.  'Two years ago you were at NG' she told Dad 'and last year you were at JC. I used to get two buses every day to see you Al' she reminded Dad – 'two buses…what does that tell you?'…Dad thought about it for a while….'That you like buses?’ he replied.  It made us all laugh – but I still don’t know if this is Dad’s sense of humour or whether he does think that literally - he says it's his humour!

As is the norm most months, we took Dad to a couple of hospital appointments during the Summer.  Early July he attended a Radiography appointment on his throat.  Dad gets a lot of reflux after eating and has been known to ‘heck’ and clear his throat for well over an hour after he has eaten, it’s not pleasant for anyone to listen to.  The dietician suggested the appointment to identify what is going on in Dad's throat to make him do this.  He was made to eat a variety of foods with a special substance in that showed on the x-ray when he swallowed. As is typical on these occasions, his swallowing was good and he didn’t ‘heck’ or choke. It was noted that a little food might linger longer than it perhaps should in the throat, but on the second swallow it went in to his stomach. Arthritis was also mentioned, but no cure provided. However many times we tell Dad to slow down with his eating and to breath in between mouthfuls, he still continues to eat his food quickly which obviously doesn't help. The 'hecking' continues.

A second appointment to the pain management consultant followed in July and I am pleased to say the experience was as good, if not better, than our first in March.  To us, Dad doesn’t appear anywhere near as angry as he used to and we can only put this down to the fact that his pain is now being managed.  It is frustrating that it wasn’t managed sooner in his recovery but it makes us appreciate the care and understanding he now receives when he attends these appointments, we can’t praise the Consultant and Physiotherapist enough.

We arranged for a visit from one of JC's residents to come and see Dad and a lovely afternoon was spent in Mum and Dad's garden catching up with him. We spent a lot of time with Lee during the year Dad was at JC and he became a part of our family.  He commented how relaxed and at ease Dad seemed in his own surroundings.  A lot of that, I am sure, is down to the devotion of love and care Mum gives Dad 24/7. 

During August, whilst we all enjoyed time out on our sunny summer holidays abroad, Mum remained committed to Dad day in day out repeating their daily routine.  She has often stated that she feels as though she is on a constant treadmill and can’t get off - there is no lie in for Mum when she’s having an off day or feeling tired. We can only do so much to give support, so we are currently looking in to alternative possibilities to give Mum some respite. A local facility providing day care and activities for dementia patients has recently been refurbished having had a £900k transformation.  We are trying to get the go ahead for Dad to attend a couple of afternoons a week to help give Mum some time for herself.  During our Summer walks we have monitored progress on the building and when recently walking past, even managed to get an invite inside to view the transformation minus the furniture! As with all things that incur a cost, there are forms to be completed and a process to follow. I'm not sure how enthusiastic Dad will be taking him out of his cosy warm home to travel in the wet weather we've been having recently, but once at the Centre, we really hope he is treated with respect, is well looked after and is entertained and kept occupied...not that he'll remember anything to tell us, but we can but hope he enjoys himself whilst he is in their care.

Dad’s physio sessions at the local hospital started in August.  He has shown good progress in the three he has attended to date, walking along the parallel bars with the support of the physiotherapist .  For me, Dad walks a few steps in his own home really well, and does it even better after his legs have had a good stretch by the physio.

An unplanned trip to hospital followed at the end of August this time via A&E. I received a call from Mum just as I was heading up to bed telling me that Dad's lips had turned blue, he’d stopped breathing and the paramedics were taking them to hospital in the ambulance. A thousand thoughts raced through my head as I drove over to the hospital 'Is this it?', 'What was the last thing my Dad said to me?' 'Haven't my parents been through enough dramas recently?' After being admitted to the Resus Unit, a 16 hour stint in the hospital followed and Dad was finally discharged from hospital at 2pm the next day, much to our relief he was not admitted on to a ward. A UTI was confirmed which caused low blood pressure. The positive on this occasion was the excellent care provided by hospital staff and their understanding of Dads dementia...it made a big difference - and yes, I did eventually get round to writing to the hospital acknowledging the care and professionalism we received from the nurses this time around.  

It came as a big surprise to look up from the cubicle Dad was moved to at 3am in the morning to see a big beaming face smiling at me from the cubicle opposite...it was another of the residents from JC! Due to his brain damage 'A' is unable to speak - but it certainly showed there was no damage to his memory as he recognised me straight away. He was over the moon to see Mum when she arrived back that morning. 'Wendy' he attempted to say - Mum and Dad were part of his daily life for over a year at JC so it meant a lot to know he remembered us. After dressing Dad and getting him in his wheelchair, we pushed him over to see his old friend. Dad didn't remember him, but knew they were 'friends' by the reaction he received. 'A' leant forward from his bed to shake Dad's hand, his face full of smiles and recognition. 'Hello!'Dad said, 'Good to see you. You must pop over some time' - referring to his cubicle...it made sense in Dad's head. It was another one of those special moments.

The care that Dad receives at home continues to be of a good standard.  He has some lovely ladies providing his care, but a special mention must go to Sarah as we think she is wonderful! She always arrives with a smile on her face and makes Dad her priority throughout her visit. She's had a few difficulties in her life recently, yet she never complains, she never changes and just 'gets on with it'. Sarah has built a fantastic relationship with Dad which has a huge positive impact on Mum and the rest of us.  She is so bubbly and her laughter is infectious - she loves a good sing song with Dad, unbeknownst to us all, Dad sings 'The Town Flirt' to her which she finds hilarious! If Sarah knew I was writing this she'd be most embarrassed, as she is a down to earth and modest person, but I think she deserves recognition in her profession as a carer as she takes pride in providing the service that she delivers.

We received extremely sad news at the end of August from a relative telling us her Dad had suffered a massive stroke and was in hospital. Our hearts went out to her and her family as we empathised knowing only too well what they would be experiencing. We have offered support and shared advice to ensure they have a better understanding of the road ahead and an appreciation of the correct care that should be provided to her Dad right now. It's a long journey, as regular readers will know from the trials and tribulations I write about, and their lives will never be the same again. My thoughts and prayers are with them for positive progress to be made for a successful recovery that allows a good quality of life. 

I will continue to cherish the special moments I share with my family - the singing sessions that put a smile on my Dad's face. I find it amazing that he can't remember what was said 30 seconds ago, yet he can remember the words to recent songs such as Magic's 'Rude' - which we enjoy singing together! The brain - one of the most complex yet magnificent organs in our bodies...and so fragile.

Well, I shall end my writing there. Now the mornings are dark (and Dad finds it more difficult to get out of bed), the nights are drawing in and the leaves are falling from the trees, I shall wish you all the very best for a happy and healthy rest of the year and thank you as always for taking the time to share our journey of life after stroke.

Love you Dad x




Pop-pops and Ruby on her birthday.

 

Mum and Dad together on Mum's birthday.





A visit from Lee.





Out for a drive with Dad (we were

parked up at the time)!



Dad working hard with his Physiotherapist.





Walking tall.





Enjoying the sunshine in the garden.



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.