#family #elves #EmoTheEmotionalElf #Care #Nightsout #disability #Accessibility
Good Evening all, How are you today.
We have begun a new week here and its been a calm and quite start.
Mum and access to treatment.
We had quite an end to last week.
first Tuesday last week Mum had the district nurse out who did her INR blood levels and we were awaiting the results to see what warfarin dosage. We got an unexpected call at 2.30 am from the hospital to stop her Warfarin immediately her levels were at 8.6 where previously they had stabilised around 2.5 and speak to doctor in the morning.
We didn’t even have to call. They called us at 8,30 am. The doctors wanted us to go to hospital, So she could get a dose of vitamin k.
Having explained to the doctor that she is homebound, they were going to sort an ambulance. But they phoned back and said we had to make our own way immediately.
We don’t have a disability wheel chair access vehicle available my brothers one broke down and they can’t get The part for a month . Given the state of the paths and people parking across the drop curves pushing mum safely to the hospital would take a long time. We tried it with me and dad taking turns when they would give mum access to the at home vaccine programme it was very unsafe and between dad and me taking turns and my dad having angina it was to risky to try again.
This is why as a carer I talk about these barriers to receiving care, in a hospital or doctors setting.
They have staff and equipment. the ability to safely move patients. These medical practices and Hospitals are covered by insurance. For injury to themselves and thier patients.
A lot of family carers don’t have that because their loved one was released from hospital at short notice.
Finding a cab service wheel chair friendly
Finding a cab services that takes people whilst they are sitting in a wheel chair wasn’t easy and wasted previous time, I had to phone about 8 different cab firms and the local council before I found a company that could help. they were fantastic though got to us quick on the way there and back. But it’s double the price of an ordinary taxi ride. we were barley at the hospital for about 30 minutes before they said we could leave. they told us to go back to doctors and book another blood test for the next day to check levels again.
I got mum settled back at home. It caused her pain it was an exhausting trip for her.
I had to go to the doctors to book that visit.They informed me the the hospital should of booked it before we left. I didn’t leave that surgery till they sorted it with the doctor who sent her to the hospital that morning.
Understanding of patients privious disabilites
I have a big issue with getting the doctors to understand that even before the hip ops my mum had limited ability to walk and they keep expecting her to be further along in recovery than she is , she also had a phone call from the first hospital to do the first op and they said she may never be more mobile than she is now. she will always have to use her frame when walking and not to let anyone push her past her capabilities. Because she doesn’t just have the hip replacements she has so many other co existing conditions that affect her ability.
Understanding how you make your patients feel
You know sometimes they test her like she is lazy and doesn’t want to do the things she needs to get better but that isn’t the case she would love nothing more than to be able to work go out and about not rely on anyone for help with basic stuff. but her disabilities stop that from happening and every day she does the excersize and gets up and walks as far as she can several times a day . This really has an impact on her emotions which then impacts her health
Support from family
I am there and my dad is there supporting her. I think she has been doing such a great job. She never gives up. She is determined to get to the best health she can so she can go home to her own place and her partner Marty. there is more of her journey to home coming up on my blogs. but moving on from this for now
Thursday Night with Mum and Hayley
I Elfed my mum and Hayley.
Grandma Elf , Emo and our new elves our one is named Celia. Hayley wanted one for her collection I think she named it Freddy.
We had a fun evening, Dad went out for the Evening and after last thursday’s night out where he had a litlle to much fun so much he couldn’t stand up. he decided to give himself a challened he put £40 in an envolope and said if he came back like he did the week before me and mum could split the money and treat ourselves. Well ther’re is oe thing my dad don’t like and that’s parting with his money he came back early and sober. so I guess the money in an envolope was a greatway of keeping himself in order. lol.
Us Girls had a quite night in chatting and sleepimg on an off and watching tv.
Friday Morning Exam Day and the start of my long weekend off work
Jake has been studying so hard for this exam, and is still studying for his his next few exams.
I think the anxiety has affected his sleep alot during the run up to exams. Plus having a nasty cold and a bit of a tempreture the night before had me thinking he might not be well enough to go in.
His covid test was negative and he felt better by the time I went to pick him up. There really was no way he would miss that exam.
The only thing he could think about before exam was that it was safe and well ventalated for the exam invigulator and a quite room so his coughing didn’t disturb other students.
I think though focusing on others needs for him takes away him focusing on his own anxiety. He doesn’t like having special provisions though.
The way he see’s things is we adapt exams for students with disabilities and special needs which draws attention to the students that get help, which sometimes makes them a bit of a target for people laughing and treating them different he thinks every student could benifit fior having that slightly longer exam time which makes it enclusive for everyone and doesn’t make the students in need stand out. yep that’s his thoughtful autistic mind compassionate to everyone.
He already has special provisions for exams and this time he actually used and benifitted from having the extra time, he managed to answer everything and thinks he did well.
Study notes he has to write everything down to remember or on the day he can have his mind go blank and can’t even do the exam.
Over the years we have tried many different ways of helping him prepare for exams but we just have to make everything run smooth the day he goes in to do it just the tiniest of issues can put his mind thinking negative. It is always going to be something we prepare for just for his sake.
The rest of the day and the week before was also preparing our house for our Joshy he was coming for a visit but different this time he was brining his beautiful girlfriend Daniella to meet us they have been dating since july after his last visit home they met and have been pretty inseprable since. To say we were slightly nervous to meet her and make a great impression is an understatment. We cleaned our hopuse from top to bottom, my hubby spents a few days working in the bathroom redoing the grout. deep cleaning Jake tided hios room and even Niki took to cleaning her room.
Pink Hair,don’t care, so worth it for the giggles
There is a slight story to Niki cleaning her room. I was having a laydown one afternoon a few days before for when I heard Niki and her dad chatting and laughing together , “go on dad let me die your beard pink we could surprise mum” at first hger dad said “no way” then he thought I can set niki a challenge he said ” if you get your room 50% done you can dye my beard pink”.
Niki agreed and the laughter and delight I heard as she colour that beard pink and made him put a pink shirt on too. Just brough a smile to my face, infact i couldn’t stop laughing when he came down and showed me. I definatly could take him seriously while it was like that. I was also glad he removed it before we met Daniella.
It was actually a lot pinker than it looked in photo. The things we do for our kids to make them smile.
I thought she would never start that room she didn’t thaty day anyway so we still had a messy room and a dad with a pink beard. but she did it about 2 hours before our gusets arrived so can’t complain.
I caught up with all the ironing and put it away so the room was clear for Josh and Danielle.
Learnt a new skill Creating animals with Towles
I even learnt how to make swans out of towles and added some flowers and lights. our house is only three bedrooms so hubby and me had the front room this time when Josh visited home before he had the front room but we werrent going to let that happen this time.
They have been working and it was a long train ride so having that hotel feel clean calm room to relax in was important.
Plus we wanted that first meeting to go really well.
We exchanged gifts we missed Dannis birthday the week before so we got her a little something. they brought me an early birthday present a beautioful Jumper.
Danni with Joshy’s help choose some gifts for every one i got elf things Niki got Frog things and Jake was over the moon with his pringles and Jaffa cakes.
Danni fits in so well we had so much to talk about, and she is such a sweet young woman, you can see how much they love each other already. We all stayed up late probally till three in the morning talking.Jake and Niki really like her.
Visit to Nan and Grandad
Saturday I took Niki to the cinema where she was helping with autism allstars and took Josh and Danni to meet my mum and dad and Hayley. Jake stayed home with his dad as he didn’t want to go near his nan with a cold. My parents really love Danni
After we finished at mum and dads. we picked up Niki and went for a small walk round town to show Danni a bit of where we live. Then went home to eat a meal together my hubby had cooked while we were out. Then we got changed Josh ,Danni me and Niki went to Kareoke together for a night out.
Hubby stayed home with Jake.
Night out Karaoke Farmer style
I got up and sung to but your spared my singing because we didn’t video it.
The system crashed just after I sung and there was a scurry to fix it , if in doubt there is a farmer about to help you fix it and thats exactly what Josh did he helped get it up and running so Danni got her chance to sing. And she has an amazing voice too she told us how she was classically trained and has been doing some gigs, she didnt know Josh played guitar before so they have music in comman. Josh has been telling us about Danni’s singing everytime we talked before he came for the visit.
At the Karaoke they was a fund raiser for mens mental Health we all got tickets , Josh only went and won bags of fire wood , we don’t have a fire place. Would be lovely if we did though we have fond memories of sitting round Yia Yia’s house by her fireplace the kids used to love it so much and my hubby always used to fall asleep infront of it. We all crashed as soon as we got home
Sunday chill day
Sunday we all stayed home just chatting , spending time together and then I cooked us all a nice dinner of Spagetti bolognese. before Josh and danni made there way home by train.
A Perfect ending to a perfect weekend.
A very different Christmas
Can’t wait till they return Just after christmas and boxing day for the first year ever Josh won’t be here Christams eve or christmas day he is spending it with Danni and her family this year. It had to happen sometime. we will have to share him now .
We have Niki’s Tom arriving Christmas Eve to spend christmas with us . we will have to share him now and will look forward to when they arrive at ours to finnish off Christmas week. Our Greek family are also Joining us Christmas day after they open prezzies with their kids.
Thats all for today.
Much love Faye xxx