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
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| Dad in his trendy new 'geek' style reading glasses |
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| Christmas Day with Ruby |
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| Christmas Day with Ash |
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| Having a good time on Christmas Day |
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| With the men at the pub - Dad, Len and Dan |
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| New Years Day - Pop-pops and Ruby share a giggle together! |
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| Back in the day...Dad and his six pack!! |
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| Young love that lasts forever x |
