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.
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| Dad with Sylv his sister in law. |
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A selfie with my Dad |
Happy Christmas from us all xxx
