Carers, COVID and keeping safe...

 Hi guys, we're still living quietly here, not isolating as such but being very tentative and really careful that's for sure!

There are very few places Coo and I now feel safe so we're mostly in Eglinton Park or at home these days. Don't get me wrong, over the years, we've been stuck at home for long periods of time before but this is different. Previously, we always had lot's of family popping in and out, running errands and staying for a chat or a cuppa most days.

This time, we were so worried over virus and infection as last time Coo had a bad infection things quickly escalated and he had a six month period with thirty seizures a day. It was an awful time neither of us want to repeat so we closed ranks and battened down the hatches to sit it out but this time, it was harder. I just didn't realise how much I need other people. 

I under estimated how hard it would be without the usual peer supports I've come to depend on. With family unable to visit and my Three Towns carer group, which has been up and running every two weeks for 15 years come rain or shine all gone, I've really struggled this time.

I've managed to keep in touch using Facebook or by phone but there's no real substitute for human contact and bonding over a wee cuppa and a chat is there!

I think we got hit with a bit of a double whammy, my Dad died one week and lockdown hit the next with it's enforced isolation and additional anxiety so we kinda became shut off from the outside world and just stayed home. Coo was poorly, he took my dad's death hard and his seizures spiked. He got anxious about infections and his seizures spiked, my rheumatoid flared and we got irritated at being shut in all the time and his seizures spiked...you getting the picture? Offt it was tough but we rode it out..kinda! I stopped all my meetings and took a time out. I didn't feel in the right head space to deal with other issues as we were kinda struggling dealing with our own. Gosh that sounds selfish and a bit of a pity party doesn't it! Our lives are still very cloistered and quiet but for our own sanity, we had to 'extend our household' and join with our daughters family, and our wee grand-babies or we'd otherwise have emotionally gone under. 

We eventually decided to start getting out tentatively. 

This week was wee Jessie's first Communion so we braved the church - I've been live streaming mass for months - everything was sanitised and distanced and different but we felt safe enough and we coped! 

It's my birthday today so we went out again, a favourite place up to The Dick Institute in Kilmarnock for a wee happy hour and again everything was sanitised and distanced so we both felt fine. It will take time to build back up confidence but we'll get there and as always we'll do it together!

In such difficult times, stay strong friends.

((hugs))

Maz x

Stay isolated? Covid the disability Carer dilemma...

Hi guys, things seem to be moving forward in dealing with Covid 19. Cafe's, pubs and some hospitality areas are open now and folk can carefully go out again or so it seems but it's very scary for those who've been shielded away for so long! 

Going out? is it safe? Questions, questions?

With every news report and update, more hot spots and pockets of infection are reported and it feels like one step forwards and another step back so...we're still isolating...mostly! We've been out in the car a few times had a wee cuppa  - it's like the old days of childhood, take a picnic and a cuppa and enjoy the peace and quiet but now it feels so different. It's not by choice, it's to ensure as minimal contact as possible with the outside world! I'm not sure I like this new way of living but Coo is still terrified of infection after the hell of aspiration pneumonia that left him with a COPD and asthma legacy and that's hard to get past especially as other places begin to lockdown again!

Changes...

Life has changed, especially for Carers and disabled people. Let's face it everyone is worried, factor in additional health conditions, life limiting issues and daily updates and stats on a deadly virus - it was never going to be easy for us was it but what to do? Continue to role with the punches, pick up the pieces and carry on - it's what carers have always done isn't it?

I'm coping mostly! Life is a challenge and we just muddle along through and find a way. Granted this time, the Covid virus has had a prolonged impact and still continues to cast it's shadow so it's been particularly difficult to sustain some positivity but we're still here and we're still going. Just like millions of other carers across our country, thankfully we're a hardy bunch!

School's returning...

Lot's of folks will be celebrating some form of normality returning as schools open up but my heart is filled with dread. After the prolonged period of enforced seclusion, we just got used to hugging our grand-babies again and I'm now dreading another prolonged isolation from them, whilst we wait and see if infection spikes or is it safe enough to continue contact? 

Spending some time with our wee grand babies over the last month has kept me sane and still connected to life and the outside world. I'm going to struggle to relinquish this again. I really hope I won't be back relegated to my seat on the drive, looking through the window. I know how awful that is, living life stuck inside with just glimpses of the busy world going on outside but it passed and this will too!

I really feel for carers who are struggling on alone at the moment. I remember just how difficult that was and hope and pray, things will start to improve for us all soon.

((hugs))

Maz x

Hi guys, well 2020 hasn't gone swell has it!

Hi guys, 2020 has been pretty awful for us but we're surviving...just!
Dad...
My Dad went out to his usual podiatry appointment in March and took a stroke. It was a mad dash to our local hospital in Kilmarnock but with each passing minute it was becoming more and more apparent he wasn't going to make it. Originally I was told it would be hours but the wee soul clung to life for another eight sad, painful, days. My sisters live in England and Spain so at least they had time to see him.

By the end of the eighth day we were just praying of a blessed release for him. He died on a sunny St. Joseph's day (March 19th) which is a comfort as St. Joseph is the patron saint of those at their end of life, we're Catholic if you hadn't guessed! I've taken some comfort in the fact he's back with my wee Mammy now but it's all still a bit raw.
SDS...
We were lucky as our SDS (Self Directed Support) care package, kicked in seamlessly so I didn't need to worry about care for Coo. Looby our P.A. came to stay with him to allow me to stay over at hospital with my Dad on those last few precious days and what a weight off my shoulders that was!
We thought the worst had passed but oh my we were in for a bit of a rough ride -
A Lockdown funeral...
Lockdown kicked in didn't it. We weren't even sure if Dad's funeral would be able to go ahead at all. We moved fast, saw our priest and Dad ,being Dad had a funeral plan all arranged with our local undertaker so thankfully after much tears and troubles - half the stuff he'd arranged in his plan could not now happen due to COVID-19 restrictions - but we did at least get a mass!

The very last one in our church before they totally closed down but no hugs and no sitting together, we couldn't even get in the family car! Immediate family only, no cords for family either, the poor cemetery workers laid Dad into his final resting place. It was all so different from two years earlier, where Mammy had a night of rest in our church, a full congregation of family and friends and a lovely funeral tea to share with our family but Dad would have understood. We did our best and at least he got his mass!
Isolating...
Fast forward four months and we're still in limbo. We're both still Isolating!
Like lots of other people with disabilities COVID-19 has reeked havoc! We're both high risk as I have RA (Rheumatiod Arthritis) I'm immune suppressed and Coo has COPD and his Epilepsy? Well any infection or raised temperature spikes his seizures crazy - he won't risk the hell of infection and seizure city he had some years back with pneumonia so we're in for the duration!

All in all 2020 has been a pretty traumatic time but with things in Scotland seeming to be heading in the right direction with suppressing the virus, hopefully we'll be coming out the other side sooner rather than later!
Lastly, a huge thank you to our wonderful NHS!

Thanks...
Dad was in the Acute Stroke Unit in Crosshouse hospital Kilmarnock and the staff were wonderful, caring and kindness itself. Without their attentiveness we would have found ourselves in such a painful and more difficult position. These caring staff really made a huge difference at what was such a very difficult time. Bless them.

Stay strong friends, never was it truer than now, only by working together we can really help one another!
Keep safe.
((hugs))
Maz x

Decisions, surgery, caring and coping...

Hi guys, I turned around to draw breath and January was all gone!
How have we faired? Not so well, already 2020 is proving challenging! So far it's been cancelled meetings, appointments galore and enforced time at home.
Treatment decisions...
Coo needed surgery. He wasn't suitable for a general anaesthetic due to all the sleep seizure activity - he has NFLE (Nocturnal Frontal Lobe Epilepsy), effectively sleep seizures so after discussion we opted for a spinal injection instead but in the end, on the day and after discussion with a very kindly surgeon, Coo opted to be brave and go with a local anaesthetic instead! Offt brave guy!
Surgery...

I gotta say, the staff were brilliant at Ayr Hospital, all the arrangements we'd asked for, additional space, the fact I'd need to stay close to keep him calm and also awake as he was stressed and shattered from the additional seizure activity the night before. The last thing we wanted was him left on his own, falling asleep and seizing on the ward!
I can only thank the ward staff, they took everything we said on board, really listened to us and the result was a far easier and less stressful experience for us both!
Well done getting it right for patients and carers NHS Ayrshire & Arran
Caring...

We got home, battened down the hatches and prepared for the night ahead's seizure activity. Just hoping he wouldn't bang around too much and burst any stitches and we'd cope OK until morning.
I think that's probably the worse bit for carers, it's the stress and the second guessing and the always needing to keep one step ahead in a crisis and just when you think you're home and dry? Bang, a big fat spanner in the works...Coo went into shock, he got the shakes, nausea and his temperature dropped to 35.4C and he felt really poorly.
I know from lots of experience when to call for NHS backup and this was one of those times.

Thankfully with some medical advice and some reassurance too, we coped at home - Coo did not want to go through yet another hospital admission, I wasn't keen either and I felt comfortable to monitor things and just wait it out.
A big cosy blanket, lot's of peace and quiet and a wee cuppa and slowly things stabilised again and we all lived to fight another day!

Caring is never easy that's for sure but it's never boring either! Here's hoping for a more settled February!
Keep strong
((hugs))
Maz x