As the year ends..

'Twas the night before Christmas and all through the house, not a creature was stirring...except for me who was still fighting with cellotape and wrapping paper.  I signed all the stickers on dad's presents "To Dad, Love Santa."

I left my own little pile at the side of the chair and waited til morning...glass (or two) of Prosecco in each hand which only highlighted in my mind this year which can only be described as my annus horribilis (which is Latin for pain in the arse I believe).  If it's good enough for the Queen, it's good enough for me!

As I sat watching (again) the DVD of my parents 50th Anniversary party, wishing I could turn back the clock, I realised it was time to ditch the bubbles for coffee...and get a grip!

Christmas jumpers laid out along with a Santa hat for dad and a set of antlers with flashing lights for me, I had time to have my breakfast in peace while watching Ree Drummond rustle up bread rolls, soups and stews effortlessly before dad shuffled through the door.

"Good morning!" he beamed.

"Merry Christmas Dad!  Santa has been," I said, leading him to his chair.  I fetched his breakfast cereal and laid it on the table beside his recliner along with a cup of tea.

Quite baffled by the presents awaiting him, he sat down.  "Dear oh dear," he chuckled.  I sat on the floor in front of him as he unwrapped them one by one.

I caved in and bought him Season 4 of Columbo.  Peter Falk's image emblazoned across the front.

"A book!" he said.

"No dad, it's movies," I said.

He opened the next one.  A huge bag of assorted Walkers crisps containing all his favourite flavours.

"What is it?" he asked.

*I don't know why the next section highlighted itself.  I've tried to sort it out but am at the point where laptop meets the road outside via the window.  So I'll apologise...and leave it!*

As he continued to open his gifts, revealing a new jumper, shirt, slippers, after shave and nuts (which is ironically appropriate)...I began to open mine.

"Oh what a surprise!" I exclaimed, revealing the onesie and fluffy socks I'd bought myself some weeks ago.  Dad's attention was already lost to his cereal and Ree Drummond's baps.  I suddenly lost my enthusiasm for opening gifts I already knew the contents of.  Without intention of feeling flat that particular day, it crept upon me regardless.

Picking up my mood, I tidied up a little and got dad washed and dressed.  I knew the day would belong to Columbo.  Being a new series and watching it for the first time in years, I sat with my feet up alongside dad on the recliner and actually enjoyed it.  One movie after the other, and other....and....other.  Perhaps the copious amounts of Quality Street and crisps that were consumed during this period helped.  Who knows.  I survived didn't I?

Dad went off for his usual nap which left me to nod off also.  I'm still sleep deprived and dreaming up a storm despite the fact my dad isn't getting up as often during the night.  Somewhere down the line this pattern will settle.  I can wait.

Christmas night, I set dad's pyjamas on his bed and left his bedside lamp on low.  He didn't eat much of his dinner.  I didn't bother with turkey this year.  Instead I opted for chicken fillets.  I threw them into an oven dish and cooked along with a few pigs in blankets.  I added a simple gravy made from granules at the end to let it soak into the meat in the hope that it would be tender enough for dad to eat it.  I sliced his into pieces and laid everything nicely on his plate.  One little sausage, one roast potato and a scoop of mashed potato and veg.  A bird sized portion although there was a bit more variety on his plate than usual which I already knew would confuse him but I served it up anyway.  I watched as he played around with the bits on his plate.  Stopping occasionally, throwing his head back and blowing loudly.  I ignored him and carried on with my own.  He barely touched the chicken.  Didn't eat the sausage or roast potato.  In fact, the plate looked pretty much the same when I took it away from him as it did when I laid it out on his tray.  He had room later for a little trifle which always amuses me!

He made his way off to bed quite early in the evening.  I have always allowed him to get ready for bed himself, telling him as he makes his way to his bedroom to sit on the edge of his bed to get changed.

"Aye, okay hen," he'll say.

He folds everything that he removes and places it at the bottom of the bed on top of an ottoman.  I go into his room in the morning and throw most of it into the laundry basket but I let him go through these motions so that he feels he is doing something for himself and not to have me always fussing.

I went to the kitchen to start washing up the dishes.  I wasn't in there 2 minutes before I heard a clatter which had Poppy barking her head off and bouncing around like Tigger on steroids.

I ran to the room to find my dad with his jumper pulled up almost, but not quite, over his head and his back against a chest of drawers to which he was holding on to with both hands stretched behind him.  I knew he had fallen backwards and was just thankful that he had his back to the furniture when he stumbled.  He was okay.  Just a bit shaken, but that's it.  No more getting ready for bed on his own.  The only thing I don't have to do for him (yet) is take him to the toilet.

I did have a word with him about his latest meal time habits.  Not eating much of the little I put in front of him but demolishing crisps and biscuits no problem.  I tried to tell him that he needs all the goodness from real food so that he doesn't stumble so much.

"You're right hen," he said.  But I'll keep reminding him when he asks me "Is there any crisps?" tomorrow...and the next....and....the next.

Bit by bit his independence is leaving him.  Making sure he is alright with that will forever be my task.

........................................

Yesterday, dad woke up in a bit of a funny mood.  I watched him although I tried not to give him too much eye contact.  We made our way to the bathroom for his daily wash.  While he stood holding on to the sink, he started once again with the 'dizzy' spell.  Not before checking behind him first that I was within 'falling' distance.  I moved back at bit, folding a towel.  Far enough away from him to know that his actions were pointless but close enough to reach an arm out should it really be necessary.  I put the towel onto the toilet seat and told him to sit down and keep his head up.  All the while he was puffing and blowing, with an occasional "oh dear" thrown in, I carried on with putting his vest on and saying "tickle-ickle" in a stupid voice while applying his deodorant.  He wasn't amused.

He made his way to the bedroom on his own while I walked a few steps behind without issue.  He sat on the edge of the bed while I dressed his top half.  With his bottom half pulled up at half mast, he made to stand up in order to complete the task.  His backside was barely off the bed when he reeled (himself) backwards, calling out, "Oh!...OH!"

"DAD THAT'S ENOUGH NOW!" I said sternly.  "You're absolutely fine.  Keep your head up and stand up tall."

It's like dealing with a child.  But up he stood, allowing me to finish sorting his clothes before he led himself to the mirror to shave.  No issues.  No more drama.

Theatrics over!

He made his way to his recliner where I set out a cup of tea and a bag of crisps before going in search of a brick wall to bash my head off.

He was FINE.

It's bad enough when his moments of illness are real, but when it's hyped up for effect it has me questioning myself.  "Am I not giving him enough attention?"  "What more should I be doing?"  "Where am I going wrong?"

The thoughts don't last long because I know I'm doing all that I can and no more than I am able.  But the necessity to be stern isn't pleasant.  Thankfully these moments are few.  Let's hope it stays that way.

.......................................

I've already put away the Christmas cards and reluctantly leave the sparkling lights until the first day of January.  I have no intention of staying up to see the old year out and the new one in.  Dad will be in his bed at his usual hour and I will be switching off my phone and putting the lights out well before midnight.  I'll know when it's all over when I hear some eejit in the street blast off fireworks I'm sure.  The first of January is the day I'll be baking and creating in order to get a cake delivered for the 4th.  That's all.

This year has shown me exactly what loss means.  Nobody can tell you unless they have gone through it and no two experiences will be the same.  Instead of being sad I will find ways in which to better handle my melancholy.  I won't always feel bitter and hard done by.  Everything is a learning curve.  Some of us just need to hold on a little tighter getting through the twists and turns, but what the hell.

"Don't lose yourself trying to be everything to everyone"

I did my best Mother.  I'm still trying to get it right...and I will.  You'll see.

  

Two more sleeps..."what's happening again?"

This week has probably been one of the most restful weeks I've actually had so far since looking after my dad.  Apart from a couple of nightmares and stupid dreams where I wake up angry in need of coffee to determine fact from fiction, I've actually slept for longer than I've been awake...I think!  The medication he now takes before he goes to bed is certainly working as he has gone from shuffling back and forth to the bathroom up to 6 times during the night to 1 or 2 at the most.  He is also going to bed a little earlier and sleeping a little later, with a nap during the day which has gone beyond 10 minutes and can last up to 2 hours.  It sounds selfish really but I am so grateful for these moments of relaxation.  I am still getting used to not being showered and dressed before 10 a.m. most mornings as my dad's personal care comes first.  If I can manage to grab a shower as he eats his breakfast and be out before he finishes then it's a bonus.  There is laundry every day as he likes to share his lunch time soup with his jumper.  Every morning I ensure he is pristine and crisp with a slick of Brylcreem and a splash of aftershave whether he is going out or not.  I on the other hand am washed and dressed with a dash of perfume, no make-up, hair pulled up and off my face and STILL manage to look like the love child of Ken Dodd and Phyllis Diller.

One of my new tasks is to always make sure there is a disposable hanky laying on the arm of the recliner for him...BEFORE I give him his cereal in the morning.  It's only one little thing to add to my list as leaving the box of hankies beside him on the table is proving not to be enough of a clue.  Dad sneezes a lot, and mostly during and after eating.  As long as he has a tissue covering his nose and mouth I can live with it.  But when he just blasts out a sneeze that almost blows the glass out of the windows and the dug bumping into walls in her hurry to escape then my patience is severely tested.  He always has a hanky in his pocket but he can never remember which one and by the time he struggles to find it, it's too late.  As much as I love him, he's not quite as adorable with soggy crunchy nut cornflakes flying from his mouth like an explosion of confetti and beating his personal best every day for distance upon landing.
I thought using paper tissues would stop him from laying his cotton hanky over the arm of the recliner to dry it out, or from putting it on the radiator which is even worse.  Well it worked.  Now he lays the paper tissues out flat instead!
I've practiced the sentence: "Dad, put a hanky in front of your mouth before you sneeze please, " over and over again in the gentlest of tones.  When I get to perhaps the 10th time of having to repeat it, I feel my teeth grinding together and my jaw lock as I force a sweet grimace.  This is also an improvement.  Previously I'd get to around 5 times and I was already at the "FFS!" stage.  I'm getting better.  😁

Coming up to Christmas, there's been a bit more TV that we can both enjoy in the evenings.  My Uncle Columbo gets a rest and I regain part of my sanity.  I sit beside dad on the recliner.  (It's a double...ye cannae hide money!)  He is more chatty the closer I am to him although if I sit on my bed chair and endure the numbness setting in on my arse, he'll still look towards me now and again and ask "Are you okay darling?"
"Yes dad," I'll reply.  "I'm tickety-boo."  This is usually followed by, "Do you want a cup of tea?"
"I *widnae mind," is his usual response.  *wouldn't
He's been heading to bed just after 9 p.m. of late.  The other night he rubbed his eyes then turned to me and asked, "Shall we just go to bed now?"  I'm not Mum.  I'm so sorry.
"You can go to your bed now if you want dad," I said, making no attempt to explain.  "I'll just fetch your last pill."
With that, I went off as usual and turned down his bed, set out his pyjamas and left his bedside light on low.  I have no tears, only a dull ache in the pit of my stomach.  No matter how much effort I make to ensure each day is bright, my heart is heavy.

I took dad out this morning to buy him a Christmas hat and me some antlers with flashing lights.  I'm determined to bring Christmas into this house and not let our glasses be half empty.  Dad laughed as I tried on various hair bands with silly things attached.  The shops were so busy and I wasn't planning to hang around too long.  Before leaving I took him for coffee and cake.  As I stood in the queue I watched dad sit at the table, nosing at everyone who passed.  There was plenty to see in the hustle and bustle.  The noise was getting a bit much.  I could see his face starting to contort.  By the time I got to the table and poured his tea, I could see him trying to get my attention with the corner of my eye.  The 'dying swan' was about to be unleashed.  I tried to ignore it and kept chatting away as I poured the tea and cut up his cake as I used to do for the kids.  Finally I couldn't avoid eye contact.
"Oh," he swooned.  "I feel dizzy."
"You'll be fine when you have a drink of tea," I said, sounding unsympathetic and trying to be encouraging instead.  "Your ears are probably buzzing with the noise in here too.  You'll be fine."
....and he was.  Perfectly.

Although dad loves to get out of the house with me, he is better in less busy places.  It never fails when there are too many people around and more especially in a café or restaurant, these 'dizzy' spells along with feigned lethargy arise.  It's worse...for me that is...if he does it while he is walking with his stick.  I've had to raise my voice in order for him to stand up and take his own weight as he has pushed himself onto me, knowing that I'm there to catch a fall, even if it meant him landing on top of me.  I know the difference between this attention seeking behaviour and reality with him which is just as well on my part.  To others I might appear heartless, but if I 'fussed' around him he would not be co-operative at all and with the attention of a doctor he would be acting the comedian.  Frustrating as it can be, I try and predict and therefore avoid.
If it was just me, dad, the dug and these four walls...dad would be happy as a pig in shi muck!  But I need to get out.  Even though he's coming along with me, I need to get out.  So feign away daddy dearest.  You won't pull the wool over my eyes.  I'm too feckin' smart for you!

"Aaaaaaaa-CHOOOOOOO!"

DAD!  USE A FKN HAAANKYYYY!!

"Dad, put a hanky in front of your mouth please."  😬😷🙈

Every day I've made mention of Christmas, counting down the sleeps "til Christmas dad."
"Is it?" he'll say.
"Then it'll be your birthday...in January." I continue.
"What age am I again?" he'll ask.
"89 dad.  You'll be 90 on your birthday," I tell him.
The last time I told him this he asked, "Does that mean I'll be a hundred next year?"
"No dad," I replied.  "You've got another 10 years before you're 100."
"Oh," he said smiling.  "That's alright then."
Meanwhile, I released my hair from my grasp and decided not to pull it all out just yet.
There is still time!

I'm still me...older...not old!

For the last few weeks my dad hasn't quite been himself.  His mobility has given me a lot of cause for concern along with nausea and tiredness.  After spending one night in hospital due to a very low heart rate he was sent home.  I wasn't happy, with the hospital or my dad's behaviours.  As the days went by it was obvious that he wasn't improving at all so once again I called the doctor.  He immediately called for the ambulance to get my dad back into hospital.  Over the days that followed I found myself repeating to various nurses and doctors the same story.  I felt like a broken record.  I know my dad is almost 90 years old.  I don't expect him to be tap dancing his way across the floor but his movements had changed so much lately that it was becoming a major concern for me at home.  Dad ended up being moved from one ward to another for whatever reason but this time around it all seemed for the good.  Every ward had their purpose and I was beginning to finally feel that he wasn't being ignored.  I had excellent conversations with the nurses and a one to one with a female doctor.  Instead of being given more medication to fix dad's problem, he's actually been take off his patches.  Transdermal Rivastigmine patches are applied every 24 hours, their purpose being to help improve the ability to think and remember.  They aren't a cure for Dementia but they are used to slow down the loss of these abilities.  The necessity for them varies from person to person.  I have always wondered exactly what use they are to my dad as I play the 'hunt the patch' game every day.  He never has one on for the time required as he feels his skin itching and goes in search of the culprit and removes it, carefully folding it in half before he tucks it under his pillow, or places it neatly on his dinner plate among the leftover food.  Or...I may find them stuck inside the rubber on the window of the washing machine as the wash removes them from his pants or socks!  The patches can alleviate aggressive symptoms and have an almost calming influence so there is a reason why some families wouldn't want their loved one to be taken off such medication.  The patches can slow the heart rate.....BINGO!  As my dad is neither aggressive nor in need of any more calming influences other than myself, he was taken off the patches and observed over a short period of days to ensure that he suffered no adverse effects.  He is also on a nightly tablet which helps reduce the amount of visits he makes to the loo overnight.

He has been home for two days.  The first day he was overly tired but I put this down to the fact he wasn't sleeping soundly in a hospital bed.  Last night he had a solid sleep...AND SO DID I!

Dad is looking more stable than he has for a wee while so I can only keep my fingers crossed that he has regained his 'normal'.

As bad as it sounds, despite going back and forth to the hospital every day, I was truly glad of the respite.  The nurses were so understanding and I know that they kept him in for one more day than was necessary.  To be fair, they weren't organised enough to allow him home the night before he actually did come home so I did them a favour too by not insisting.

"Go home and put your feet up and relax," I was told.  So I did! 😄

One thing I did get to take part in while my dad was in hospital was attending Daniel's Christmas sing-a-long at his school.  (For those who don't already know, Daniel has Downs Syndrome and is now a very cheeky little 11 year old)  The children sat on benches and eagerly watched the door as their parent or grandparent entered.  Daniel flew off the bench as soon as he saw me.

"GRANNY!" he squealed.  Looking around at all his friends and teachers he proudly showed me off. At the same time he was strangling me with his arms wrapped tightly around my neck, pulling my head down to kiss it.

"IT'S MA GRANNY!  LOOK!" he beamed.  "AH LOVE HER!!"

I almost keeled over when he tried to get his favourite teacher's attention.

"MARGARET!" he shouted.  So close it seems that they are on first name terms.  I laughed out loud.

"Are you the famous granny who makes mince and tatties, steak pie and curry?" she asked.

Among other things...yes...I guess so.  My heart was fit to burst that day.  Daniel's cuddles were so welcome even though they came with bruises!

My birthday was nearing.  I'd bought myself a card from my dad earlier in the week and had managed to get him to sign it.  He didn't know it was for me but knew it was for his daughter.  I tucked the card in a drawer until my birthday arrived.

I also bought him a Christmas card.  To Dad.  I signed it and left it beside his recliner for when he got home.

"Where have you been?" was the first thing he asked as I entered his side room.
I ignored this as he clearly wasn't able to appreciate the visits I'd made to him every day, taking him drinks and snacks and sorting out laundry.  I decided to smile and get him ready to go home.

I put the kettle on to make him a welcome cup of tea while he settled himself on the recliner with his feet up.  I pointed out the Christmas cards on the table beside him that had started to arrive.
"There's one there for you dad," I said.
"Oh," he said, as he started to open it.
He looked at the front.  'Dad' was clear to see in big letters.  Inside I'd written 'To dad, Lots of love...Lorraine xxx'
He read it to himself and smiled, saying nothing.
"Who is it from dad?" I asked.
Opening the card again, he pointed to the name.  "Lorraine," he said.
"Who is Lorraine?" I asked.
He looked at the front of the card again, reading 'Dad' on the front.  He opened the card again and with an almost annoyed tone, he pointed to my name again and said, "Lorraine!  It says it there!"
"I know," I said.  "But do you know who Lorraine is?"
"Yes," he said.  "It's our daughter."
"Dad," I started, "the card is from me.  I'm Lorraine.  Your daughter."
I'll never forget the look on his face.  If I described it as disappointment I wouldn't be far wrong, although it wasn't aimed at me.  It was more of a realisation that he hadn't recognised me in the first place.
"Oh what am I saying," he said as he shook his head.
"It's okay dad," I said trying to be comforting.  "You just get a wee bit mixed up sometimes."

Another birthday has come and gone.  How everything has changed and will continue to do so as this path takes on its own twists and turns.  I have yet to come to terms with all of the changes but I try not to dwell.  There is no point in throwing my toys out of the pram waiting for them to be returned in the right order.  Life has given me my biggest challenges this year, emotionally more than physically, although a combination of the two could be lethal if I didn't draw on the last ounce of strength and determination to get me through to the next phase...whatever that may be.

Thank God for friends who have gone through the same and who know what it's like when I sometimes forget who I used to be and need reminding that I still am that person.  I am not looking forward to New Year and intend to sleep over into 2019 and not give the old year a final 'cheers'.  It is not worthy.

What IS worthy is how I choose to direct myself  for the remainder of this life and appreciate all that I have and expect no more but especially no less.  I hope all the complications my mother's death has brought and the Guardianship of my dad will be resolved quickly next year and give me a chance at least to move forward with the freedom of choice I deserve.

I'm so glad you're home dad.  Just keep being who you are...and I'll be whoever you think I am today, tomorrow, 
and the day after. 
x

Weighed down

The past few days have been fraught with memories, good and bad.  Overthinking the future.  Misinterpreting the past.  Trying to give my brain a break, but every time I sit quietly, the little residents in my head compartments have a meeting and never reach a conclusion that will allow me to close my eyes and switch off the inner lights.

Other peoples doctors and carers perception of my dad bothers me more than I let on.  His ability to seem 'normal' giving the impression that his capabilities are more than they are is an accident waiting to happen.  I'm a bit fed up hearing that looking after him can't be "too difficult".  He isn't in a wheelchair 24/7.  He doesn't need a hoist or any other moving and handling aid.  He isn't incontinent...not all of the time at least.  He can feed himself.  Easy peasy.  I don't know why I'm so tired....and emotional, perplexed and powerless.

The weather has played some part in keeping us indoors most days.  It's only a short walk from the door to the car but with slippery pathways and a dad who doesn't take instruction immediately, I've saved him from being caught in the car door as it's blown shut in a fierce wind, stopped him from falling backwards as he kept his grip on the wooden gate while the wind took over as soon as the gate was released from it's latch and swung in his direction without a care.  Of course, instead of letting go of the gate, my dad's senses were telling him to reach further towards it and try to bring it back into position to close.  With me behind him trying to direct his hips in a forward motion with my hand over his to ensure his walking stick remained on the ground taking some of his weight off of me.  Going outside is much easier on a sunny day!

Dad has slept an awful lot more since he's had his heart checked.  It gives me a little space to sit peacefully by myself with 'dug' but I remain on alert. I have a beautiful Poinsettia plant which is doing quite well since I bought it and hasn't reduced to a pile of shriveled leaves like every other real plant I've ever owned.  So far so good.  I watched as a single leaf fell from it onto the floor.  I also watched my dad's attention drawn to it from his recliner.  He looked at the leaf then looked away, then looked back at the leaf.  Moments later he was wriggling around and trying to get his feet onto the floor in the most awkward way.  He hasn't mastered the art of swinging his legs around to the side of the foot rest before trying to stand.  I've caught him sliding forward until his weight dropped the foot rest to the floor but it doesn't click back into the chair unless you push it back with your hands.  I watched in horror as his feet reached the floor from the front and he pushed himself up...or tried.  The more he tried to get up, the more the foot rest tried to spring upwards into a resting position again, catching the back of his knees and would have knocked him into next week had I not been there to grab his hands and help him regain some balance.  I've thought about a reclining chair for him with a hand control.  The ads are on the TV all the time.  But I already know that he wouldn't make sense of the controls and would still do his high dive off the edge no matter what.  I'll make use of money on better things...like plasters, bandages and paracetamol...and maybe a baseball bat!

I could see that the fallen leaf was drawing itself to his attention too much.
"Just leave it dad," I said, foiling his recliner escape.  "I'll pick it up later."
But later...I forgot.
Dad went off to have a lay down on his bed for a couple of hours.  I sat back and caught up with all the reality TV rubbish on my laptop that keeps me going, scunnering myself (good old fashioned Scottish word meaning annoying) with how the other half live.  As it grew darker outside, the living room lit up like Blackpool illuminations and cheered me up.  We don't have a Christmas tree this year, but I've more than made up for it with everything else that twinkles.  I won't let anything dull my sparkle!

After his nap, dad came back into the living room.  I already started to make my way off the recliner, taking my time until I watch in slow motion as he reaches down for the fallen Poinsettia leaf.  Right down to the floor he reaches and manages to pick it up.  Unable to get back to a standing position, he leans forward as his legs begin to give way.  I make it in front of him just in time for a rugby tackle, his head hitting my chest as I reach out to grab his shoulders and push him upwards.  Still holding on to him, my mouth engaged before my brain....
"DAD!!!  STOP BENDING FORWARD!!!"  I SAID I'd get the leaf, didn't I??  Did I not say that?
But I forgot to pick it up immediately.  I blame myself...I'm angry at myself.  I always seem to be angry...at myself.
He laughed.  He thinks he's funny when he stumbles.  One day I won't be there to catch his fall.  Neither of us will be laughing then.
A cup of tea and a bag of Walkers crisps fixes all.  I'm thankful for the truck load of Maltesers that arrived in the post courtesy of my American bestie, Kyla Myers.  You never give up. I love you.

I don't know if it's just the time of year that is weighing me down.  Most likely a combination of things that I can't seem to get my head around.  I feel like a broken jigsaw puzzle with more than one piece missing.  I've gone from being over emotional to almost emotionless.  I don't know which is worse.  I keep it all wrapped up inside in a compartment of it's own.  Unfortunately I can't stop revisiting and taking a peek through the window.  I don't want to open the door just in case I can't close it again.  The walls are decorated with cliché signs:
THERE'S LIGHT AT THE END OF THE TUNNEL.
NOTHING IS AS BAD AS IT SEEMS.
THERE ARE PEOPLE WHO HAVE IT WORSE THAN YOU.
YOU CAN BE WHATEVER YOU WANT TO BE.
CHRISTMAS IS WHAT YOU MAKE IT.
The doorway needs a 'DO NOT ENTER' sign in neon lights and a Houdini proof padlock to keep me away.

I've managed to retire Columbo for a little while.  Santa Claus has taken over.  ITV3 is showing Christmas movies although they repeat the same one at various times.  I've seen Dudley Moore so often this week I feel we're related.  But it keeps dad happy...and in his chair.

This morning he slept until 10 a.m.  I grabbed a shower as he ate his cereal then got him washed and dressed with his usual grumpy face as I sprayed him with aftershave.
"It makes you smell nice dad," I said, smiling.
"Smell nice?" he questioned.  "Some fkn smell!"
His use of expletives is a lot more common these days, although he doesn't do it in anger.  Only once when 'dug' jumped up and caught his hand with her wee teeth.  It wasn't intentional but she scurried off to the kitchen after hearing him shout "Stop fkn biting me ya wee b****ard (motherless hound!)"

At times like those, I say nothing.  I retreat and try to console 'dug'.

I manage to make dad's days good and catered for, but I am struggling to find my own 'happy'.  My stomach feels weighed down with bricks and my eyes are dull and empty.  The pain in my hands is not alleviating in the slightest.  In fact, if anything, it's gotten worse.  I know I need to pick myself up.  "You can't pour from an empty cup" to quote another.  Bollocks!

Roll on 2019 and better organising, prioritising...

...and thicker skin! 

Keeping restraint

My dad was taken to hospital on Thursday afternoon because his heart rate was 31 and he was retching constantly.  His mobility was very poor and as his confusion was heightened.  I packed a bag for him expecting that I wouldn't have him home for a few days.  He was initially admitted to an all female ward but he was going to be moved later that night.  As the nurses gathered around him to ask him questions I pointed out that my dad has dementia and would either nod in agreement to anything and all they said or he would simply smile and try to make a joke.

The girls were lovely and I was asked to fill in a form which was more like a booklet which is given to family of those with dementia.  It is written from the patient's perspective.  eg.  My name is 'X'.  I like to be called 'X'.

Headings like:  Things that are important to me.....   Things you should know about me.....  Personal care capabilities.....etc.  I filled this out as if there was a nobel peace prize at the end of it.  I left nothing out.  As I was about to leave, a nurse came along and asked him what he'd like for tea.  She read out 4 options, the last option being a ham sandwich.

"Ham sandwich," dad said.

I apologised before I poked my nose in interjected.

"My dad will always give you the last option if the options are read out and not visual, even when there are only two options.  He can only remember the last thing you say," I said.  I told her all the things he would eat without issue and not to worry if he didn't finish everything.  He doesn't have a stomach, and what he does have is created out of Walkers crisps!

She was grateful for the information, I handed her my dad's medication which consisted of Metformin for diabetes, Iron tablets which he's only been taking for the last couple of months along with his daily memory patches.  Everything sorted, I stopped fussing and left them to it.

I spent the night at home having a pity party.  Didn't want to talk.  Didn't want to do very much actually.  So much for feeling full of vim and vigour after a couple of weeks on medication.  I think it was all in my head!

Next morning I called the hospital to see how dad was and was told that he was being discharged.  Really?  His heart rate is suddenly back to normal just like that?  I didn't really get a proper answer so I said I'd ask questions when I got there.  The nurse asked me what my name was and said that she would tell my dad that I had called.  "Don't bother," I said.  "He doesn't remember my name and wouldn't know who you meant if you said his daughter."

Having said that, she continued, "Oh I'm sorry.  Can I just ask you about the patches?  I asked your dad if he should have them and he said no."

😳

"Of course he should have them.  His information is on the box (FFS).  I filled in a whole screed about him last night before I left.  He has DEMENTIA and can't answer any of your questions plausibly," I replied.

She apologised and said she'd go and place a patch on him before I got there.  Fine!

Dad has to go for an ECHO scan which will take a closer look to see what's going on.  A letter will go to his GP then an appointment will be made at the hospital for a later date.  Why they couldn't have kept him in and done it in the next day or two is beyond me.  So home he came, tired and weary.  He didn't eat much and as night drew near he just wanted to go to bed.  As I helped him get into his pyjamas I noticed a patch on his arm and one on his back.  Jesus Christ!  He still had the patch I'd put on him 48 hours ago.  No wonder his skin is welting.

Next day I had to wake him up around 10 a.m.  He's never up that late.  He was very muddled and shuffling so slow.  He wasn't retching any more but it still worried me.  I don't know what to look for.  I'm not medically trained.  I was just worried that he'd keel over and crack his head.  This almost happened as he got himself off the chair normally, stumbled backwards and almost crashed into the glass topped table.  Luckily I was near enough to grab his wrist and managed to pull on him enough that his backside hit the arm of the chair and he slid back down into the seat.  Enough was enough.  I called the doctor again.

Doctor Attitude arrived on the doorstep.  Didn't look up as she said my dad's name...looking into a gadget in her hand that may or may not have been a phone.  I wasn't bothered, I just instantly thought how rude.  Eventually she looked at me with a questioning look, so I replied, "Yes."  I opened the door wider, stepped back and allowed her to breeze past me and go towards my dad.

"Hello Mr Duffy.  Did you know the doctor was coming?" she asked.

My dad looked at her and then at me, then back at her.  "Yes," he lied said.

"My dad has dementia," I offered.

Without looking at me again she said, "Yes I saw that in my notes."  Then she turned to me and said, "I like to go straight to the patient and get a feel for what they know."

But I just fkn told you.

"What's the matter?" she asked me, looking straight at me now.  "You look a bit stressed."

"Stressed?" I repeated.  "I'm far from stressed.  I'm absolutely FINE!"

"So," she continued.  "What is it you want me to do for him?"

"What do I want you to do?  I'm not a doctor.  I'd like to be satisfied that he doesn't need to be back in hospital since he doesn't appear to me to be any better than he was before he went in except for the retching."

Turning to my dad she asked, "Who is this lady looking after you?"

"He doesn't remember I'm his daughter," I said.

"It's Mrs Duffy!" my dad said.

"Why do you call her Mrs Duffy?" she continued.  REALLY??

THEN my dad said, "No...she's my daughter."

"Ah," Doctor Attitude looked at me 'knowingly'.  "It's intermittent then."

"Actually no," I replied, clenching my fists behind my back so as not to punch her in the throat any minute.  "He heard me say 'daughter' just after you asked.  If I'd kept my mouth shut he wouldn't have offered that to you."  I don't consider 99.9% of my day being referred to as his wife being intermittent.  Punch me if I'm wrong!

"So you just like the comfort of having a Mrs around the house then do you John?" she carried on.

"Aye," said my dad.

Mr Duffy to you b*tch.  Just get OUT!

All obs done....heart rate still slow but she explained that not doing the scan comes down to resources more than anything.  How comforting.  I'll just wait til he falls and cracks his skull on the floor before I call again then.

I think she 'got' the fact I was pissed off.  She went on to ask me about who helps me and more about me.  I told her all that she needed to know so she would leave, not before giving me a patronising pat on the shoulder with a petted "Aw, it must be hard for you."

Keeping my annoyance in check is harder.  Trust me.

So that is where we are at.

Today dad got up at 10.30 a.m.  I gave him a proper shower this morning and annoyed him by spraying his aftershave on his jumper.  This kind of annoyance I can take.

We went for coffee and a little browse around the busy shops.  We were only out for an hour or so.  By the time we got home he was back in his bed for a snooze.

He is overly tired, but if he's off his feet he's no chance of falling.  I can only keep a closer eye on him and hope for the best.

Too many worries and overthinking isn't doing me any favours.

“We can’t always protect the people we care about, but we always care about the people we protect.” 

Not done yet

Hey folks.  I'm in hospital right now with a heart beat that isn't playing the game.

Bear with me and I'll be back soon.

Lots of love

John

xxx

Never ending...

Yesterday was Wednesday.  The day when I drop dad off at his Day Centre in the morning and for the next 4+ hours I get some time to myself to do whatever I want to do, which by choice would most likely be a little window shop and coffee for one.  I swear to God that ever since I've taken over dad's care, everything that needs doing happens on a fricken Wednesday.  I can count on one hand all the days I've actually sat back and done hee haw just because I could...on a Wednesday.  So why should yesterday be any different.  A couple of days ago the car started to rattle.  I ventured out to the shopping centre where Dad and I did our usual thing...Post Office, coffee and cake, shopping for sparkly things (dad's favourite oh yes it is!)  On the way home, that little niggly noise coming from the back end of the car got louder and louder.  It didn't help that on the same day some idiot reversed his car into the front of mine knocking the number plate clean off.  No other damage was done to the car, but I was sorting dad's footplates on his wheelchair at the time and I can't get the worried look on his face out of my head.  He watched as the huge 4 x 4 kept rolling backwards like a giant mouth set to swallow up my little dinky toy of a car.  The man was as big as his 4 x 4 and sheepishly apologised.  What the f**k you bloody idiot.  As if I don't have enough to bother me today you absolute clown.  

"Don't worry about it," I say with a concentrated sweetness.  All thoughts of wanting to kick his arse swept aside as I repeatedly tell my dad that everything is fine.  No damage done.  No garage can fix my nerves!  I throw the number plate into the car and add it to the list of things to do...on Wednesday!  F@#% S#%* B*$@#&%!!!!

It was never in my plan to move in to my mother's house.  When she bought the little compact one bedroom abode, she moved away from West Calder where she had lived for most of her life and where I had been brought up and decided to change her surroundings completely.  I'm sure if she had waited for just a little longer that something would have become available in West Calder but as much as my mother accused me of being impulsive, it took one to know one.  There was none more impulsive (and regretful) than my mother.  I like to think that my impulsiveness has been tamed.  It has certainly been tested, so perhaps I've learned something...at last.

The little house has an enclosed front and back garden for which 'dug' is truly grateful...as am I, so when she starts playing 'chase the ankle' I simply open the door and close it behind her little fiery arse.  Let the neighbours enjoy her tantrums.

Getting used to the idea that this is now my forever home hasn't been easy.  I have yet to relax completely and act like I live here.  Not having a bedroom doesn't help as I constantly feel like I am on a sleep over.  But yesterday...Wednesday...I realised just how lucky I actually am when I had to go and get the car fixed.  I am so used to jumping in the car to do the smallest of errands.  I pass a garage every day when I'm on my way to the shops with my dad and also coming home.  It's less than 10 minutes walk to my front door.  There are now two supermarkets which are less than 5 minutes walk, set on the road leading to the Main Road which takes me to Bathgate in less than 20 minutes by car, and the motorway which takes me to Edinburgh in less than an hour.

I drove dad to his Centre which is just around the corner but too bumpy to walk with the wheelchair and with fierce weather yesterday, we rattled and rolled the car until I dropped him off then took the car to the garage.  Although I have no knowledge of cars, I let it be known that I didn't want to be having all kinds of work done on it that wasn't necessary.

"If you could just put a plaster on it and let me get from A to B I'd be very grateful!" I begged.

I left the car with them and the owner offered me a lift home.  If it hadn't been pouring with rain and blowing a gale I would have walked.  But those extra minutes at home would mean a lot.  The man said he recognised my face.  I explained my reasons for moving here and said that I was originally from West Calder.  It didn't enlighten him any, until I mentioned I used to have a cake shop on the Main Street.  Bingo!  I see more business in the future.

It took less than a few minutes to get me home, but in that time I learned that there is to be a Christmas Fayre at the Community Centre where I dropped dad earlier taking place on Saturday.  Santa Claus will visit for the kids....Santa being none other than the jolly man who gave me a lift home.  I've spent so much time couped up in the house without taking time to find out what there is around me.  I smiled as I came indoors...even at Poppy, who had protest peed on the kitchen floor!

I'd ordered my shopping online the previous day just in case I'd no car for some days.  I ordered much more than I would have bought had I gone to the shop myself.  When it arrived, I was thrilled to see the cupboards fill and the fridge with enough to keep us going for another week.  I'm thinking that this might be the way for me to go in future instead of struggling with the heavy bags on my own.  Trying to offload my dad and shopping and keeping him from trying to carry stuff and rummage around in bags as he bends down too far...it's all too much.  So yes...I'm thinking that in the long run I'll spend less on shopping if I do it this way and relieve myself of the impending heart attack that awaits me.

My car was fixed in a couple of hours.  I wrapped myself up and walked to the garage.  Yes....I WALKED!  Everything really is on the doorstep.  Am I finally starting to see this house as home?

I picked dad up as usual just after 2 p.m.  He was very quiet although he told me, "It's a good hospital to visit."  It's not a hospital dad but I'm glad you enjoyed the visit.

He was very quiet, and seemed very tired.  He started to fall asleep on the recliner but his head kept going off to the side.  I woke him up and led him to his bed to have a more comfortable snooze.

"I don't feel well," he said.

"You'll feel better after a rest," I said.  I didn't fuss, although I am aware of his lethargy.

After a couple of hours, dad came into the living room appearing to be more cheery.  I made him dinner, just a little pasta and tomato sauce.  He ate all of it and enjoyed it.  Within the hour he was rushing across the floor in an unnerving shuffle to the toilet to be sick.

This went on for another hour.  No sooner he sat down he was up again.  He was never actually sick but his feeling of nausea was overwhelming him.  All I could do was wait...and listen...to this poor wee man retching.  Every time he entered the living room he looked smaller.  I decided to lead him to his bedroom and get him into his pyjamas to settle for the night.  I left the bedside table light on low so that I could see him when I popped my head around the door later.

I didn't unfold the chair bed.  I stayed on the recliner still clothed, just in case he got up during the night and couldn't cope.  I decided that I would call the doctor if he got up more than once.

I watched Celebrity Jungle and gagged as I watched them do the eating challenge.  How revolting and stomach churning.  I'm glad my dad was already in bed.  It didn't put me off wading through a bag of chocolate caramels that dad won at Bingo today giving myself lock jaw in the process.  Having truly sickened myself and feeling guilty, I switched off the lights and lay my head back with dug making herself comfy on my legs.  

I lay awake most of the night waiting.  Of all the nights for dad to sleep right through!!  I'm not sure if my eyes closed at all but the fact that I saw Disney's Bambi jump over the recliner and stand as bold as brass in front of the kitchen door tells me otherwise.

Dad got up when I woke him this morning.  Although I checked on him regularly, the time was getting on and for him to still be asleep at 10 a.m. is unheard of. 

Still retching...pale as a ghost...the doctor is coming.  Keeping my fingers crossed that hospital isn't required but to be honest, I'm not optimistic.  Although this situation is typical for my dad at this time of year, somehow it's a bit more harrowing than usual.

"I don't know why I've got this," he says, pressing on his wee pot belly.

"It'll get sorted dad, don't worry,"  I reply...worrying.  😟        

Getting to know me...

Last week I have to admit that I was actually counting down the days until my dad went to respite for the weekend.  Nothing in the week had made it any more tiring than any other.  Perhaps it was knowing this would be my last precious time alone to do things just for myself until the end of January.  That's a lot of Columbo!

We spent our week as usual going back and forth to the shopping centre and picking up little bits and pieces for Christmas.  Sharing coffees and lunches and listening to him pass remarks on everyone who walked by:

"Look at the size of her/him!  Size of a hoose!"

"Skelp it's erse!"  (translate:  slap it's bottom to the poor parents of small children who were screaming, crying and acting out in public)

"No watchin' where they're bliddy goin!" to those who walk towards his chair with their noses in their mobile phones and almost land on dad's lap.

These are only a few quotes.  I should really keep a notebook in my bag to write things down but I'd probably have writers cramp at the end of the day.

Dad is going to be 90 in January.  The weather will play a part in where I take him if in fact we venture out at all.  He knows he's getting on a bit but will often ask, "What age am I again?"

We watched a 92 year old man on the Michael MacIntyre show last weekend.  He was belting out the song "My Way."

"I hope I can sing like that when I'm 10 to 2," dad said.  I knew what he meant.  It just came out wrong.  More and more he starts to tell me something and the words fail him.  He gets more frustrated about it than I do.  It's a shame.

Medication and me are getting on famously.  My eyes are wide even when I feel quite tired.  My mood is lighter and I seem to have developed a stronger will and determination.  Things that may have bothered me to a ridiculous degree no longer seem to affect my being...and that is a great feeling.  I have less pain in my lower body but my hands continue to give me problems.  Mornings are the worst but night time is almost as bad as my body gets into a relaxed mode, it tenses and tightens and there's nothing I can do to alleviate the pain and discomfort.  But there IS a difference so I'll hang on to that and hope that one day it will disappear and I'll be back to being the me that I deserve to be.

Alcohol is no longer a feature in my life at the moment.  It is the biggest and probably the worst depressant around.  My Prosecco bottle had almost become my comfort blanket in the past year...perhaps two if I'm honest.  The easiest way to switch things off is to drown yourself in bubbles but the alter ego it creates only masks the hurt and emotions held within.  I have never felt so refreshed in a looooooong time.  Facing all my fears and worries and reaching a sane and sober conclusion is more important now than ever.  I matter.  I really do.

I matter...to me.

On Saturday I had a wonderful day.  I spent most of it with Paul's mum, Jackie.  I have so many fabulous photos of Paul from way back.  School days, holidays and respite weekends.  My family surrounding him with love and him providing us with much humour and an insight to his life that I will treasure forever.  I shared the photos with Jackie and Paul's dad, Ralph and brother Sam.  Jackie had her own photos to share with me too and as we sat sifting through them, we recalled so much and laughed more than we cried.  In fact, I don't think a single tear was shed that day at all...except with laughter.

Jackie and I went off to spend some time at the famous Gyle shopping centre.  Paul and I frequented the place so often that I feel a statue of him should be created in his honour!  We had lunch and talked and talked...and talked some more.  How sad it was to be sitting there without our boy, but how good it was to talk about everything about him.  The good times, the bad and sad times leading to his passing.  Jackie's dad also has dementia.  We spoke about both our dads and as I shared stories with her about mine we would often stop to laugh out loud.  Even in the darkest times, a sense of humour will always pull you through.

It was already dark when I left Jackie and Ralph to their evening.  I am still getting used to the fact that I don't have to be home by a certain time or live by the clock.  Instead of going straight home I stopped by a bargain store to look at all the Christmas decorations and lights.  I bought another little twinkly thing to delight my dad when he came home from respite.  He thinks I'm daft.

I think I'm amazing!  😁

Dad's home from respite and settled back into his recliner.  So far I've managed to avoid Columbo but we've watched White Christmas at least once a day.  He likes the songs and joins in with a hint of impersonation of Bing Crosby.  I should try and video him doing it....it's worth a watch.

"Take a deep breath.  It's just a bad day, not a bad life."

Yeah, whatever...

Yesterday I took the advice of my doctor and contacted Cruse Bereavement Care Scotland.  I wasn't quite sure how much to say or what not to say so instead I sent a link to my previous post on this blog and hoped that it would explain better than I could in a few words.  I started off by telling them first of all that it was my GP who insisted that I should contact them "as a matter of urgency" he said, although I didn't reiterate that.  I sent my e-mail along with my telephone number as requested on their site so that they could contact me.  However, it seems there was little to discuss as they sent their reply by e-mail...

Thank you for your email.

I’m so sorry to hear about the struggles you are having. We only offer support to people who are bereaved following a death. Is it support following your mum and Paul’s death you are looking for or support to deal with the loss of your dad? I wonder if Altziemer Scotland might be of support? 

...and I wonder if they read my post at all.  They signed off at that and I immediately sank into my chair, deflated and pissed off.  I hadn't realised  that I had to choose one or the other.  I don't need advice on how to look after my dad's mental health.  If anything, it's my understanding of him that keeps him going from strength to strength.  It's always going to be sad that I'm not known to him as his daughter but no matter how many times it causes me to shed a tear, I can't change it.  I know this.  I'm as fine as I can ever be with it.  So thanks Cruse Bereavement Care, I think I've got this.  Sorry to have bothered you.

I took my dad out for coffee and cake and we ventured around Asda with the shopping trolley attached to his chair.  I hadn't thought of using the trolleys  for disabled people before and it was great.  Dad was in his element with the feeling that he was helping.
Back in the car, we listened to the radio on the way home.
"I'd like a request please for my friend (X) who is getting married on ....."
"Don't do it!" I joked.  "There's still time to change your mind!"
Dad laughed then said, "It never did you any harm."
"What didn't?" I asked.
"Being married," he replied.
With more than one divorce under my belt I knew immediately where this conversation was going.
"I'm not married any more dad," I said.  He looked blankly ahead.  "You were married for 63 years though." I continued.  "That's a long time to suffer!"
He laughed.  "Aye, so I am."  Am....not was.  "WE!" he corrected himself.  "What am I saying....I.  I mean WE."  He looked at me and smiled.
I smiled back, then said as gentle as I could.  "We're not married dad.  I'm your daughter, Lorraine.  You were married to my mother...Anne."
He looked bewildered with a slight smile on his face...unsure and confused but accepting in a sense what I was saying even though it wasn't what he expected to hear.
"My mother isn't here anymore dad, but I am," I said.  Trying to make light of it I carried on, "At least you don't get nagged every day.  You're a bit spoiled now I think.  Don't you?"
"Aye!" he said, brightening up a bit.  "Aye, I couldn't ask for anything more.  It's a great life right enough."
We went home and he settled into his recliner with Columbo for the fkn millionth time on the telly.  I didn't complain, and he was happy.

By tomorrow I'll be his wife again.  Oh well...

Trying to take time for myself isn't as easy as people think.  I can't pick and choose my dates so readily.  If something comes up that I would like to attend with specific dates already decided, I can't put myself forward until I can ensure my dad can go to respite.  I booked myself a little getaway for March for my eldest grandson and I to have some bonding time.  I am also throwing myself back into the sugar world as much as I am able and starting with regaining my title as an Accredited Demonstrator for the British Sugarcraft Guild.  I was excited to think that I could go to the seminar in April and be accredited before the end of next year.  But I couldn't get the respite cover I needed for any of the dates required so I am waiting to know if I can escape in May with my grandson instead.  The next seminar is in September, 2019.  Another year gone...but I can wait.  I won't give up.  I'll be there.

Dad is going to respite this weekend as it happens.  More than anything, I need to sleep.  Just one night where I am not wakened by his bathroom shuffle and a day where I can stay in my pj's without a care in the world!

This morning I went to the kitchen and saw that Poppy (dug) had left a parcel shit on the floor.  She was out late enough last night for this not to be so but accidents happen.  She can accredit medication for this laid back reaction.  Ordinarily her arse would be kicked to the moon and back.  I cleaned it up as she looked on with a bowed head.  No treats today dug!

It's raining hard but we're heading out.  Staying indoors all day isn't good and I need some fresh air.  I hope Poppy will be okay while we're out.  I didn't push the cork in too far....

Have a good one! x

Too much too soon.

My dad is usually awake and out of bed before 8.30 a.m. so when he still hadn't come into the living room by quarter to 10, I thought I'd better go and check on him.  I kept 'dug' out of the way so she wouldn't jump on top of him and give him a fright.
I knocked the door gently before entering his room.
"Dad, are you awake?"  I asked.
"What?" a muffled sound came back.  "Aye," he continued.  "I was up at 9 o'clock.  I'm going to get ready for the dancing."
"Are you?" I said.  "Well I'll put on some music and you can shimmy your way into the shower."
He laughed, his voice a bit hoarse from being woken up and not quite ready for the day ahead.  It's no surprise that his confusion was already heightened.  I had brought him home from his regular respite Care Home late the day before after leaving him there for one night to allow me to attend a very special funeral.

In the last few weeks it has become crystal clear that looking after my dad 24/7 has had an adverse affect on me that I didn't see coming.  It's not the physical looking after him although that has also been impacted but will get better and back to normal again over time.
During my mother's illness, my dad had no clue what was going on or what was about to happen.  Even when I explained to him that she wouldn't be coming home from the hospital, the news was met with "oh well...these things happen."
I would visit my mother with him and as soon as we left the hospital it was like we'd never been and she didn't exist...for my dad.  I went about daily life with him, keeping him happy, making jokes and taking care of all his needs.  Keeping him calm and beyond all, protected.  But in the background I kept my own thoughts very much inside.
It was during this period that I noticed my hands becoming increasingly painful.  This was followed by pains in my knees.  I didn't do anything about it, thinking it was just the strain of doing too much and not taking time to rest, but how could I.  After my mother's death, the pains worsened and started to become more of a problem.  It wasn't just my joints any more.  It was everywhere.  My sleep is interrupted every night with my dad going back and forth to the toilet so to have this additional annoyance was leaving me drained beyond belief.  But dad would get up the next morning and come into the living room which was already back to normal with the bed chair tidied away and ask his usual question, "Did you sleep well?"  To which I'd reply "Yes dad.  I did."
He'd further offer "I had a great sleep."
Punch me why don't you!

My emotions have been all over the place.  I sit with dad while he watches TV and I mess around on my laptop and I'll glance over at him, watching him lay out his snotty hanky on the arm of the chair to "dry it out".  I know...
His little ways (apart from those gross in nature) can set me off and I leave the room to stop myself crying in front of him.  I can be making dinner or doing dishes and some little thing will come into my head and I'm fighting tears.  The weight on my chest has gotten worse and I feel like I'm in a constant choke hold.  My whole body feels like it has been stomped on.  The extra pounds I've gained aren't helping.

For 19 years I've cared for a young man with complex special needs.  Those of you who keep up with me on Facebook will already know this as I've shared our story over the years as he was very much a part of not only my life, but my family's also.  He was never a 'job' for me.  Paul was my wee treasure who absolutely idolised me.  I could do no wrong in his eyes.  Paul would go to respite once a month and on those days I would be with him.  When my mother was taken into hospital, I was due to be with Paul soon after but my situation meant that my work had to be put on hold...permanently.  This included my time with Paul.  As it happened, Paul was also poorly at this time and was taken into hospital.  He did get home eventually but things weren't going well.  Despite all of this, his mother would call me often to make sure that I was okay.
My mother passed and it was business as usual for dad and me.  I vacated my rented home and moved in with my dad, dragging him along with me in the process.  Keeping the stress of it all to myself.  Reminding him occasionally that I'm not his wife but his daughter.

Life just went on from there with hidden tears, aches and pains, solicitors and stress.  Then came the devastating news that Paul was back in hospital only this time there was nothing more they could do.  It was too much.  I remember I was dressing my dad at the time when his mother called.  After hearing this I carried on helping dad with his socks and making jokes.  Later that morning I went to see Paul in hospital.  He was asleep and sedated, but I took his wee hand and put my mouth to his ear and said, "Paul....it's Aine!"
He opened his eyes and beamed a smile.  My heart breaking, I smiled for him and told him I loved him...as if he didn't already know.
Leaving the hospital that day, I started to cry and the tears just wouldn't stop.  Uncontrollable in a controlled silence.  Sitting behind my dad in the car to go home, I buried my face in tissues to stifle the noise.
Home again..."Cup of tea dad?"  I ask.  "I don't mind if I do." he replies.

Paul was able to spend his final days at home with his family.  I visited two more times on a Wednesday when my dad went to his Day Centre.  On my first visit, Paul was smiling and awake although very weak and not the little man I was used to seeing at all.  But he put on a petted lip as he signed to let me know he'd been in hospital and had been given injections.
"I know Paul...don't worry.  I'll kick their arse!"
The following Wednesday when I visited I was met with a very different scene.  Paul was asleep with a little furrowed brow.  Not able to shout out his usual response "Puck aw!"  Figure that one out for yourselves.  I'm sure if speech bubbles were real it would have been up there above his head in bold letters.  I hoped I would see him again.  I didn't want to say good-bye.  I left saying "see you next week Paul."
I went to Birmingham that weekend to Cake International at the NEC.  On Sunday morning the unwanted call came.  Paul had passed away at 4 a.m.  My daughter Vicky was with me in the hotel room with the kiddies and my dad.  Once again, the tears were controlled.  We had to get on with this day and make the best of it.  My time with my daughter and grandchildren are precious at the best of times but this time more than ever.  Feeling so lethargic and uninterested in the day ahead, we carried on.  The wee ones were playing and having fun.  Charlie, my grandson, was toddling around and giggling.  Jessica gave me a big hug and I commented, "My wee bairns, (my little children) what would I do without you."
My dad who was sitting on the edge of the bed watching and listening said, "You've still got me!"
Vicky and I looked at each other with her saying, "Well that's something for your blog!"  We smiled.

It was almost two weeks before Paul's funeral took place.  During that time, the build up of emotions were greater than before.  As the funeral drew nearer, I began to wonder how I was going to hold myself together.  Dad and I had a doctor's appointment the day before, both of us getting the results of our blood tests.  The second lot for me.  Previous tests for rheumatoid arthritis came back with a negative result, as did an x-ray of my hands.  Dad is thriving and better than he's ever been.  I led him back to the waiting room while I discussed my own results, but I also had to get some other things off my chest.
My latest blood results also came back negative.  Although relieved, I felt like I was going off my head and told the doctor so.  He asked me if I'd heard of Fibromyalgia.  I said I had but didn't know too much about it.  He went on to explain and I listened.  Then I told him that I had something else that I needed to address...my emotional state.  I started to tell him how I was feeling but it all came out backwards.  I told him I had Paul's funeral the next day and I didn't know how I was going to get through it and not show emotion.  This puzzled him as to why I felt I couldn't.  It's not quite how I meant to say it but everything I was feeling got muddled and I began to cry...in front of him.
With my head in my hands I told him that since the death of my mother it was almost like "okay then, that's over...business as usual." and now Paul.  Was it going to be the same?  He's gone so let's just get on with it?  I told him that I felt stifled, unable to show emotion around my dad.
"Why not?" he asked.
"Because he already doesn't recognise my mother in recent photographs and thinks I'm his wife.  Picking up his wedding photo telling me how good we look.  I've had to put the photo in a drawer.  How can I keep reminding him that she's dead.  His happy state of mind and health is more important." I replied.
I explained that Paul was such a huge part of all of our lives but I wouldn't be sharing the sad news with my dad because I know he wouldn't remember.  But how can I forget?  Or more to the point, how can I remember and not react.  I told the doctor that the physical looking after my dad is not an issue, but I am finding that my mental state is very much out of control.
"Did you know that Fibromyalgia can be brought on by extreme stress and anxiety?" he asked.
I didn't know.  It seems that all this bottling up and pretense is showing itself in a debilitating fashion just to give me a swift kick up the arse.
He told me that the adjustment to life as it is without my mother and taking care of my dad is a major thing and I should seek the help of Bereavement Counselling as a matter or urgency.  He also put me on an anti depressant which is also given to those with Fibromyalgia and in time my body AND my mind should get back to some kind of normality.  This isn't me.  This isn't how it's going to be forever.  But I am finally taking the help that I need and intend to surround myself with positivity.

Four days later and I am already feeling a little brighter.  I am making changes to this house that is now my forever home.  Painting walls with brighter colours although it takes me longer to do it than before...I'm in no hurry.
I took dad to buy some sparkling Christmas ornaments which absolutely delights him.  We've switched them on already.  Why not.  It's never to early to sparkle.
I parked dad in his chair near the car park but kept him indoors as I hurried to the car to offload some bags.  When I returned he said, "I nearly got a click there."
"Did you?" I asked.
"Yes," he said.  "This woman walked up to me and asked if I was okay.  I told her I was just waiting for my wife."
Christ dad, you'll have a long wait!
"Did you dad," I said.  "You should have told her you were waiting on your daughter.  I'm not your wife dad."
He almost looked embarrassed and said "Ah ken!"  (I know)

Waiting in the queue to pay for goods, an assistant opened up another till and called out "Next here please."
I remained where I was with dad because we were already in the wider aisle that catered for wheelchairs.  Unaware of this, my dad began to wave a pointed finger towards the empty aisle and turned to me saying "Anne!" My mother's name.
I didn't correct him on this.  I simply said "I need this aisle for your chair dad.  It's okay."

To others it's endearing, sweet, sad but not so bad.  It is of course all of these things.  My dad is as happy as a pig in shi  muck living on his own planet with me by his side.

For me, I haven't just lost my mother and Paul.  I have also lost my dad.  With a little help along the way, I will make sure I don't lose myself too.

Life goes on.  I cannot bear the weight of grief and I will find the outlet I need for me to make things easier.  It has only been a few days with a little medicated assistance but I already feel that better things are yet to come.

"And in the end, all I learned was how to be strong alone."

 

Time to reflect

I feel that I have abandoned my blog.  There is so much to write but even I am struggling to put into words what needs to be said.

I left you with dad and I going off to Cake International at the NEC, Birmingham.  Another chance to be somewhere else other than home with dad and see how he...and I...coped.  But I also went off with the knowledge that my little sidekick, Paul, was seriously ill.  Sadly, he passed away on Sunday 4th November.

This blog is not the place to tell you all about Paul and what he meant to me and my family, but I will do so when I am ready and I will offer a link for anyone who wishes to know more.

What is relevant to this blog is the masking of emotions when living with someone who has dementia.  Having no outlet when dealing with devastating news....the death of my mother just over 3 months ago and now Paul who was part of all of our lives for almost 19 years.  Every day has to go on regardless, as long as my dad is settled and well.  It's all that matters.

But it isn't.

I need to take a little time out before I can write what I need to say.  Good or bad, I'll say it like it is as I always do.

Paul's funeral is on Friday 16th November.  I am going to take a break from writing until it is all over and take time to reflect, review and renew.

Thank you so much to everyone who follows this crazy life of mine.

I know I am not alone and I will continue to share my journey as soon as I evict the box of frogs jumping around in my head.

You will always be in my heart Paul Campbell.

Always.

Oh how we laughed...

I watched a TV programme with dad about the late Larry Grayson's life.  I remember like it was yesterday watching The Generation Game and thinking that nobody would ever take the place of Bruce Forsyth...who later in life got on my tits nerves as the host of Strictly Come Dancing.

When Columbo gets the chance to hang up his raincoat, dad watches ITV3 on the telly which shows old stuff from years ago.  Not as far back as Larry Grayson and Co. which is a pity.  I told dad that the programme was about to start and he didn't show any recognition of the comedian's name.

"We used to watch this show years ago dad," I said.

As soon as Larry's face appeared on the screen and the introduction could be heard, dad piped up, "Is he dead?"

"Yes dad," I replied.  "He died many years ago now.  Do you remember him?"

"Oh aye," he said.  "I didn't know he had died."

As we watched the TV, I couldn't help laughing at some of the clips.  I looked over at dad who sat with a stoic face.  Clips of other shows were shown and the era of Larry's TV appearances brought back some great memories...for me.

"TV's not the same any more dad, is it?" I said.

"No it is not," he agreed, although I'm not sure if he agreed just to agree or if he really meant it.

I reminded him of the Saturday nights and the Sunday afternoons.  Saturday nights were brilliant.  Harmless variety and game shows dictated our viewing.  If I was lucky, the ice-cream man would arrive in the street and I'd get a bag of Revels in the days when the centres were palatable and coffee centres weren't predominant and dad got a bar of Dairy Milk when the squares were twice the size they are nowadays and biting into one took great effort.  Chocolate heaven. 
There was always a matinee on a Sunday afternoon.  The dinner would be cooking and we'd get ready to sit down and watch it.  It was usually in black and white and featured stars like James Cagney, Barbara Stanwick or Bette Davis (mother's favourite) and the likes.  It was the one time where the day was uninterrupted unless my mother was having one of her hissy fits and went on a mad cleaning spree.  I'd either slip out of the house unnoticed or I'd be dragged in to tidying somewhere that had been tidied to death the previous week.  I learned how to walk on egg shells when I was young.  My mother's erratic mood swings often dictated the day.  My dad tried to justify it to me once, telling me that she was "going through the change."  I remember wishing she'd hurry up and change into whatever it was she was changing into as the alternative had to be better than this, then maybe we'd get peace to watch the movie from start to finish.

Larry Grayson's life story was on for two hours.  During the breaks I'd make a cup of tea, disposing of the one already sitting beside dad which was almost full and cold.  I've started giving him a glass of orange juice occasionally as the tea thing is getting a bit out of hand.  It's such a waste of tea bags as he doesn't drink all that's made.  It's purely habitual and there is no way of putting a spoke in that wheel...and I'm sounding like my mother!

'Larry Grayson died at the age of 71.....'  The narrator could be heard in the background.

"Did he die?" asked my dad, for probably the third time now.  I lose track as I'm constantly on repeat with my responses as much as he is with his questions.

"Yes dad, he did," I said.

"Oh I didn't know he'd died," he said.
It's like living with a goldfish...

"A long time ago now dad," I said.  "23 years.  He was a funny man."

"Aye, he was," dad said, although he'd hardly cracked a smile throughout the programme.

............................................

It's starting to get really cold at night now.  I had to scrape the ice off the car window for the first time just a couple of days ago.  Dad's duvet isn't the thickest but he hasn't complained.  There's a much warmer one stuffed in a cupboard which is twice the size of me and extremely heavy.  When I first moved in with my dad I found EVERYthing to be over sized and complicated.  My mother bought a new Tempur bed and pillows just a couple of months before she passed.  She spent over £2,000 on this monstrosity.  I don't know how she and my dad ever managed to change the sheets on the bloody thing because I struggle with it on my own.  The pillows have already been given the heave ho.  Have you ever lifted a Tempur pillow?  It's a tonne weight!  My mother had two of those...and FOUR other pillows on the bed....for SHOW! Six pillows and two cushions and two big teddy bears.  Fck that!

Dad now has two pillows.  The cushions are stuffed in a cupboard and the teddies are up for adoption.   

"I'll change that duvet for you dad," I told him.

"Why?" he asked, giving me that look that suggests I'd better have the right answer.

"Because it's getting so cold now, you'll soon have icicles hanging off your arse!"  I replied.

"Away ya daft buggar!" he laughed.

Humour is the best medicine.

We're off to the NEC in Birmingham on Friday until Monday.

I hope my prescription doesn't run out!