The pain that Dad is experiencing again in both his left arm and leg seems unbearable. Even when nobody is touching him he will shout out in pain - and ask for the pain to be taken away. This takes us back to several months ago, before Dad had the botox injections in his arm. Clearly he needs the injections more regularly than six months - but when appointments get cancelled and then delayed, six months becomes seven and so on...why should Dad have to be in this unnecessary pain?
With regards to Dad's physical improvements there is not much to report on this month as we are waiting for appointments. Having waited an excessive amount of time for a bespoke orthotic brace to be approved and finally made for Dad and then waited weeks for it to arrive, we are now waiting for an appointment to remould it to fit him correctly, but first we have to wait for Dad to be seen by a Vascular Consultant. Waiting waiting waiting....with no urgency and so time drags on and Dad is unable to practice the physical activities he should be doing like walking. We have noticed that his transfers are not as good as they were a couple of months ago - his arm and leg are so tight.
A reality was brought to our attention half way through the month during an unplanned conversation with the Doctor who sees Dad at the care home. We were advising her that 'Our building works start Monday for the downstairs wet room at Mum and Dads'...'Who told you Alan was coming home?' was her response....'Errr, that's always been the goal we were working towards?'
It appears Dad is thought of as a 'highly complex case' as there's always something different to deal with each week and his mental capacity is not good. 'There's lots going on behind the scenes' we were told....Really....because I feel like I've got front row tickets and I certainly haven't got a clue what's going on behind the scenes? And so our hopes of having Dad return home were dashed. Tears sprang to our faces, as Dad asked what was going on and why were we upset?
Dementia after a stroke is not something I feel is written about enough. I have read many stories about successful recoveries after a stroke which gives hope to so many people, but there are not many case stories that tell you the harsh reality of dementia brought on by stroke. The most searched words on the internet that links to this blog is 'Miracle recovery after a stroke' - and that is what we have all been hoping for.
A positive this month - yes I'm sure there's some somewhere! Well it was Dad's 69th birthday at the start of the month. We were able to bring him back to Dan and Sue's house where he opened his presents with the help of his grandchildren and he blew his candles out as we sang 'happy birthday' to him. A really nice gesture was when two of the more independent service users at the care home, made a birthday cake and card for Dad and sang 'happy birthday' to him - again he got to blow more candles out.
On Good Friday, the care home arranged for singers to go in to the care home and sing songs from musicals along with many others. Dad thoroughly enjoyed it, joining in knowing all the words. It made for an emotional afternoon for Mum and a family friend who was there offering much needed support, as Dad became overwhelmed with emotion listening to the words and sobbed. At the end he wanted to applaud them, but this was difficult having only the use of one hand, 'Come on' he said 'Let's applaud them they were fantastic'....and a couple of minutes later he wanted to applaud them again as he could not remember having done it the first time.
Easter Sunday we took Dad back to his own house for the day. It felt like 'old times' a typical Sunday with the football and golf on TV, Dad asleep on the settee and Mum in the kitchen! Though it was far from normal when we had to change Dad three times during the day.
Dad is still not eating and says he is full up. He takes few sips of a cup of tea and otherwise does not drink, relying on the PEG tube to feed him water and nutrients. He has encountered yet another UTI this month as well as a chest infection and has received yet more antibiotics. His aggression was not as bad as that experienced during previous UTI's and we put this down to the anti depressants suppressing his emotions. He has had days where his blood pressure has varied from very high to extremely low within the space of a few hours and he has therefore been monitored closely during these days.
It's still so hard to think it's nearly a year since we lost the Alan we all knew and loved. My beautiful, intelligent, loving and quick witted Dad. He is a shell of the man he used to be, such is the harsh reality of the disabilities that stroke causes and dementia. It's hard to rely on others to provide the care that Dad needs. Of course there are always going to be issues with levels of care, but most of the staff are good to Dad...and pleasant to his visitors. The PCT have been in touch again - they will be meeting with us in April to review Dad's health and funding.
As the phone calls stop and the texts and messages of support filter off, it does sometimes get lonely. Thank goodness for our loyal family and friends who have been by our side every step of the way offering the support that they do. Don't get me wrong - I count my blessings and know I could be in a situation a lot worse - but we're dealing with this the best we can, and I assure you, there are enough trials and tribulations through the month to make it more difficult than it needs to be.
Thanks for the read and thanks for caring.
Love you Dad x
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| An early March walk before the snow came and settled. |
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| 8/3/13: A physio 'putting' session to get Dad to practice standing. He's still got it! |
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| Happy 69th Birthday Pop-Pops! |
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| Mum and Dad - Good Friday 2013. |
