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!

Tick-tock

As if it wasn't complicated enough living in Dr. Who's tardis on a daily basis, the bleedin' clocks went back an hour last night and caused all kinds of blasphemy.  Dad lives by his watch which is quite comical as his whole existence is based on the fact that he has no sense of reality...time or otherwise.  He looks at his watch a trillion times throughout the day and doesn't always read it properly...especially at night when he's checking to see if it's bed time yet.  Oh please let it be!

"That's 9 o'clock already," he'll say.

"It's actually after 10 dad," I'll respond...unless he's actually right for once.

I'm not being cruel.  I know that he'll gladly go off to bed at 10 p.m. or a little after but if he announced he was going to bed at 8 p.m. or any time before 9 p.m.  then I certainly let him know it's early.  I find ways to keep him awake for another hour or so if necessary, otherwise he'd be out of bed at stupid o'clock...and that I just couldn't deal with right now.  There may come a time when he has no clue of day or night, but as long as he still has some sense of the clock I'm savouring the moment.

I decided to tell him last night that the clocks were going back.  I don't know why I did this to be honest.  I already know that he can only hold on to so much information and not necessarily understand it.  Like the last instruction...last request...last comment that I make at any time.  For example, when he's due to go to respite, I never tell him in advance.  He knows he's going when I am packing his suitcase on the morning he leaves.  Otherwise that suitcase would be packed, unpacked, packed again.  Followed by him fetching his shoes, coat, hat...asking where he's going and how long for.  You only learn the things not to mention in advance with experience.  So now I've experienced another new thing.  In the Spring, I won't be mentioning any damn clock!

To make matters worse...for me...I told dad about the change just before 10 p.m.  I was already shattered at this point but I always relish at least one whole hour to myself at night just to unwind and watch something on TV of my choice or catch up with Facebook and other computery stuff without interruption. 

He looked at his watch, "So it's 9 o'clock then?" he enquired.

"No dad," I said.  "It's almost 10.  The clocks change in the early hours while you're asleep."

Seriously Lorraine??  Do you want a shovel to dig a bigger hole???

He fidgeted and fiddled with his watch.

"Do you want a cup of tea dad?" I asked, hopeful that this might distract him.

"I wouldn't mind," he replied.

With a last cup of tea and no more mention of clocks, dad took himself off to bed just before 10.30 p.m.  I hit my head off the wall got into my own bed and switched myself off for the night.
...................................................

Dad has a Transdermal Patch applied every day on various places on his upper body.  The patches haven't to be applied on the same place within 14 days.  When I took over the care of my dad, it became clear that the Carers who had attended him in the mornings weren't clued up as to where these patches should be placed.  Red welts were apparent on his back and I did kick off a bit about it.   I blamed the continuous placing of the patches in the same spots for the mess my dad's skin was in.  If I had to explain to you the reasons for not placing the patches on the same spot within 14 days I'd be reading the information off the box they're supplied in or be cutting and pasting from Google.  The fact is, I'm not that clever about them either but at least I know the pattern of where to apply them.  Big smarty pants me...I'm doing it all 'right' and still the welts are appearing wherever I've placed the previous one, the skin raises and is itchy and red.  More times than not, my dad removes the patch himself.  He can't remember me applying it and has no clue what it's for.  They are supposed to help slow down the process of his disappearing memory.  That's about as much as I know.  But as they are causing such a skin rash I'm wondering if the good they are supposed to be doing is any good at all.  They aren't a cure...only an inhibitor.  We're off to the doctor's next week.  I'm going to ask a bit more about them.  I'm fed up finding them in the sock drawer, under the pillow and thrown into his empty breakfast bowl!
.......................................................

The weather played somewhat nice yesterday.  I took dad off to the shopping centre to have our usual tea/coffee and cake before running a few errands and finishing off with food shopping.  I can't carry a shopping basket or push a trolley while pushing him in his wheelchair so I parked the car as near to Asda's doorway and left him sitting in it with a packet of crisps while I carried out my own version of Beat the Clock to get the shopping done and back before he decided to vacate the car!  I can only do this if I have a list ready.  Forget browsing the shelves or reading the magazines and putting them back before leaving.  I would win Supermarket Sweep hands down if it was still airing.
.......................................................

It's taking me longer and longer just to put a blog post together.  I start off with good intention but there is always something which interrupts my concentration and I have to vacate my spot and leave the laptop on hold.  Already it's another new day...and I can hear dad shuffling around in the bathroom.  I have to go and investigate before he turns on the shower or strips off in the hall!
Such as life.
Bring it on!

Taking time for me.

I managed to spend some precious time with my grandchildren this week.  They live in Maidstone, Kent which means I can't just pop in when I feel the need. I organised dad's respite so that he could be looked after from Monday to Friday.  This isn't a regular time slot as I choose to have him cared for over a weekend...one per month.  But I've juggled days so that I could take myself off and stock up on cuddles from the littles.  The time wasn't long enough, but I soaked up every second...til next time.

I picked dad up this morning.

"G'bye John.  See you next time," said the carer.

"I hope I'm not back too soon," dad said.

I told the carer that he would soon change his tune when he got into the car.  Sure enough just minutes later when I asked him if he enjoyed his stay, he said, "Oh aye, it's a great place to be."

"They look after you well dad," I said.

"Oh aye," he said.  "They do."  😊

Back to familiarity.  He's a happy bunny.  Tomorrow I'll start his routine off with his shower.  I'll wash his back as I always do and he'll raise his arms for me to reach into his armpits with the soaped up scrunchy.

"Tickle-ickle!" I'll say, in a high pitched voice which makes him laugh, usually followed by him saying, "ya daft bat!  You do that every time!"

Last week I had a lot on my mind.  Nothing to do with my dad, but sometimes other things are going on and my concentration lapses when I'm dealing with dad.  One morning he just needed a wash at the bathroom sink.  As he stood holding onto the edge of the sink, he raised one arm for me to wash his armpit and I did so with the soaped up scrunchy as usual.  He raised the other for me to repeat the wash.

"You never said tickle-ickle!" he complained.

It made me laugh that he remembered and also that the fun obviously meant so much.

"I'm saving it for when I do your roll on deodorant," I said, trying to back track.

I dried him off and applied the deodorant saying "tickle-ickle!" in my high pitched tone.

"Away ya daft buggar," dad laughed.  "You do that every time!"

He already forgot that I forgot!

I redeemed myself...I won't forget again.

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

Dad's a bit tired today.  It's normal when he's been away.  I know he'll be glad to be in his own bed tonight.  He's spent the day with his feet up, watching 'you know who' and nodding off now and again.

I have a framed photo of his wedding day alongside one of my mother and him on their 50th wedding anniversary sitting on a corner table by the door leading to the hallway.  As he made his way off to the bathroom, he pointed to the photo and asked, "Who's that *braw couple there?" *lovely

"That's you dad," I answered.

He picked up the photo for closer inspection then he offered it to me to take a look.

"We look really braw there don't we?" he said.

I held the photo frame and pointed to the woman.  "That's not me dad," I told him.  "That's my mother...your wife."

He furrowed his brows as he took another look.

"I'm your daughter," I continued.

I reminded him that he had spent 63 years with my mother.  I could have added "until she passed" but decided not to.

He replaced the photo frame and continued on his way to the bathroom...confused, but smiling.

Dad may have forgotten you in this life mother but Vicky and I have not.  I took part of you with me to Maidstone so your granddaughter can find your next forever place.

Keep a watchful eye...I would appreciate it.

Very much. 

x

No hiding place!

"How are you getting on darling?"  my dad asks.

He's sitting on his recliner watching TV while I busy myself on my laptop in another corner of the room.  I know he thinks I'm his wife.  I have no name...but nor does she.  I'm a relative, a familiar presence.

"I'm doing fine dad" I answer.

He can't hide the confusion etched on his face but he smiles at me anyway.

"Do you want a cup of tea?" I say.

"I wouldn't mind," he replies.

My dad's new 'thing' is to try and pick up Poppy and carry her in his arms.  This started out to be first thing in the morning as she greeted him but can now happen at any time of the day as she jumps around his feet looking for a playmate.

"Up you come dug!" he'll say.

I have always been in the room when it happens and every time it does, Poppy squeals.  She has a very tender spot under her armpit.  Do dogs have armpits??  I'm sure you know what I mean.  I don't know whether he is unintentionally pulling her leg outwards or whether his fingers are just pushing in tender places.  Either way, I can't bear the noise Poppy makes and I can't chastise.  I have to remain calm as I tell dad to leave her on the floor because she is too heavy for him.  He would never be able to pick her up, straighten up and walk forward towards a chair as I could if I cared to do so.  I spend a LOT of my time preventing him from stooping forward because he has fallen over too many times in the past...once in the first week I moved in with him and he still bears the mark of a wounded elbow today.  I can't leave my tea mug on the floor (on a coaster I hasten to add) as he spots it when he re enters the room after visiting the toilet and will make towards it, bending down to pick it up "just tidying up."  🙈

As soon as he walks through the living room door in the mornings, I'm 'on'.  My radar and senses are severely tested.  Sometimes I just want to sit for 5 more minutes.  Sometimes I just don't want to hear my own voice.

We are waiting on the delivery of a new collapsible wheelchair today.  One that folds from the back as well as the sides and with small wheels that I don't need to fill with air at the petrol station.  I've struggled long enough with the other one which had self propelling wheels (WHAT WAS I THINKING??) and no safety belt.  I NEED a safety belt.

Why is it when people see the wheelchair coming towards them they run across it's pathway causing me to make an 'emergency stop'?  I walk at the same pace as anyone else who isn't pushing a chair, but stopping abruptly has a delayed reaction as the weight in the chair which has WHEELS continues to roll forward a little before it comes to a complete stop.  I'm usually met by someone waving their hands at me, mouthing "sorry!"

"Arse hole!" may be heard out loud.  I don't say it, although I always might think it.  The one thing I cannot control is my dad's mouth.  In these instances, I don't really want to.

I take my dad out for coffee regularly and sometimes lunch.  Coffee times go without issue mostly although when it's time to leave, I sometimes have to 'fight' with his hands as he tries to pull at the brakes or I have to get him to keep his feet still as he tries to flip the footplates upwards with his shoes.

Yesterday, I took him out for lunch.  I took him to the Food Court in the Shopping Centre where clearing your table is expected when you are finished.  I always sit near to the disposal area so that I can keep an eye on my dad.  Yesterday, although I was a few steps away from our table, my view of him was obscured for as long as it took me to swipe all the contents of the tray down a hole and place the tray on top of the others gathered there.  Enough time for my dad to push himself away from the table and flip both footplates upwards.  I reach him just as he has a grasp of both armrests and in the process of propelling himself out of the chair.

"DAD!  You're in your own chair.  There's no need to move.  Sit back down and I'll get you sorted," I tell him.

"Och!" he said.  "So I am.  Silly buggar."

Today, the new wheelchair will arrive with a safety belt and brakes which are situated at the bottom rear of the chair which can be applied using my foot and cannot be reached by my dad.

I am also awaiting the arrival of his new jacket.  It's padded, for warmth you understand, and has pretty straps attached to each sleeve which  wrap around his back while he sits comfortably with his arms crossed and are fastened tightly carefully behind him!

The weather isn't so great today but we'll venture off out anyway.  Dad's watch has stopped and needs a new battery.  He looks at his watch constantly so when he realised yesterday that the second hand was still, he took it off and set it on the table beside his recliner.

"My watch has stopped," he said.

"It needs a new battery dad.  We'll get one tomorrow when we're out," I said.

5 minutes later.

Dad picks up his watch from the table and inspects it.  "I don't know what's wrong with this watch?" he says.

"It needs a new battery dad.  We'll get one tomorrow," I answer.

"Oh, okay," he says.

5 minutes...maybe 6 later.

"My watch is needing wound up," he says.  "It's no working!"

"It needs a battery dad.  We'll get it fixed tomorrow," I say.

More than 5 minutes pass.  This is looking good....until.

"I don't know what's wrong with this watch," he says.

😫

Where for 'ART' thou?

My dad has always had an artistic streak and many years ago he went off to classes every week to improve his skills.  It wasn't long before he ditched the classes and kept up with his hobby at home.  He had a cupboard dedicated to every type of paint, brush, canvas, paper and easel.  I can remember my mother complaining in latter years how my dad "couldn't be bothered" painting and what a waste of money all the equipment was as it was all going to waste.  My dad was diagnosed with Dementia just over 2 years ago.  Looking back with hindsight it is clear that he was already on that path for much longer than we originally thought.  His eye to hand co-ordination was probably one of the first signs but as people get older, you see this as quite normal.  The 'silly' things that followed, like trying to open a restaurant door with a hotel room key or forgetting who people were but once reminded could either feign recognition or actually could remember.  How can we be sure of that now?  Dementia was never given a thought back then.  My mother thought my dad was doing things just to annoy her.  Although he may have done many things to justify that, losing his marbles wasn't one of them.

The painting above was one of the last two paintings he did.  I remember him working on them because they took him an awful long time to complete.  Compared to his other works of art, the one above isn't as detailed.  I remember the day when I visited my parents and my mother asked him to fetch it for me to give my opinion.  Both my mother and I thought it was unfinished but we didn't have that conversation in front of my dad.  The only reason he did as much as he did with it was because he was painting it for my daughter, Vicky.  He wanted to give her a special gift to hang in her home in Maidstone.  He painted two scenes, both for her.  Some parts of the other painting makes no sense but it really doesn't matter.  The sentiment is what is more important, perhaps even more so now.

Today I dropped dad off at the Day Centre.  It's Wednesday.  The only day I can have a leisurely shower and strut around in my knickers without a worry or a care.  I washed my hair and didn't even dry it until it was almost time to go and pick dad up.  A couple of things arrived in the post which reminded me that I am still in the midst of the Guardianship of my dad.  I also had a couple of phone calls to take care of relating to my mother's Will and one other monitory nuisance without having to leave the room or muffle my voice to avoid dad picking up on words I don't want him to hear.  

Today's word just happened to be FU*K as it happens.

I went to collect him from the Day Centre at 2.30 p.m.  One of the ladies pulled me aside and said, "Your dad's been working on a little painting for the last few weeks.  He's not quite finished it but he's doing really well.  I'll go and get it so you can have a look."

😲

She showed me a little A5 work of art.  A little house and a tree, an almost childlike interpretation but still...a PAINTING...by my DAD!!  I informed her about my dad's passion for painting years ago and she was more than surprised.  "You never told me that John." she smiled at dad.  He smiled and looked at the painting as if to say who did that?

As we walked off to leave I said to him, "That's great that you're painting a wee picture dad.  Have you enjoyed doing it?"

"Aye," he replied.  "I've not done that for ages."

To be honest, it has only just struck me as I write...at the time he said that I laughed because I thought he meant that he hadn't done THAT particular painting for ages and knowing he's been doing a little bit each week and earlier today I thought his response was comical.  But now I'm realising that he might have had a recollection of his favourite pastime.  Stupid me!

In the car I waved to one of the staff and said to dad, "They're so lovely here aren't they?"

"Aye," he said.  "It's a good place to be if there's a place to be. (make of that what you will...I do!)  I've not been for a long time."

I suppose a week IS a long time in dad's head.

He has spent the rest of the day sitting in his recliner but has ants in his pants.  I've a crick in my neck with turning constantly to keep an eye on him as he gets up to close the window blinds and attempts to lift up the 'dug' for whatever reason.  

"NO dad," I say too loudly, ending more softly with, "she's too heavy for you!"

I swear the dug wiped away a bead of sweat from her brow before throwing a high five my way.

Dad went off to the toilet.  As usual I look at the clock as he leaves.  He's gone a bit too long so I go off to investigate.  I can hear him sighing and padding around but nothing too out of the ordinary.

"Are you okay dad?" I enquire.

"Aye!  I'm just coming out now," he replied.

The bathroom door opens and the bathroom is in darkness.

"There's no light on dad," I say, stating the obvious.

"I know," he said indignantly.  "I don't need a light to find my arse!"

I have no words!

Deep in thought.

It seems like an eternity since I've written a post but this past week has been so busy that the nights were blending into the mornings leaving me wondering what day it was...and questioning if I'd slept at all.

I took on the task of creating a wedding cake with a difference along with a christening cake which were both to be delivered on the same day.  In days gone by I'd get up really early in the mornings and crack on with the job, stopping only to feed myself and keep myself going in between times with copious amounts of coffee and the occasional Malteser.  

I think for the first time in my baking life I'd organised myself so far in advance and managed to make every element for the cakes prior to putting them all together.  The beginning of the week was a bake fest.  Cake after cake went into the oven and all the while I kept dad going with his cups of tea, crisps and snacks then had to stop somewhere in the middle to make dinner.  At times I'd stop and look at the kitchen and think that I'd been raided.  Keeping dad out of it was the biggest deal.  Whenever he hears water running in the kitchen he gets up off his recliner (with great difficulty) and gets busy looking for a dish towel to dry the dishes that I'm about to wash.  Every...I mean EVERY time I have to tell him, "Just leave those dad.  I'm just letting them dry on their own."  I've learned to move the dish towel from it's usual spot before I run the water so that he doesn't get it in his hands at all.  Why is this such a big deal?  Well...before he puts the dish towel down, he might just give his nose a quick wipe.  Yeah.  Best to let him just sit this one out.

The weather was really bad at the beginning of the week so it gave me a good excuse not to take him out.  Packing and unpacking the wheelchair into the back of the car is hard enough but when it's pouring with rain, the chair gets slippery to lift and I always end up with wet dirt on my clothes from the wheels.  Lifting this thing is fast becoming my biggest issue these days!

With dad being my only full-time job, I was able to work around him and get my cake work done.  It is no mean feat but without my creativity I don't quite know where I would be.

Now and again I would catch dad's eye from the kitchen and he'd say "How are you doing?" or "You're awfy busy!"  I'd smile at him and either take bits and pieces of what I was doing to show him so that he didn't have to move or I would help him from his chair so that he could come and have a better look.  As the bigger of the two cakes began to take shape midweek, the kitchen became more of a hazard area.  My difficulty was timing everything with dad so that he would remain in his chair when I needed him to.  I kept him occupied with snacks and tea before I'd take a toilet break.  I realised the importance of this when I entered the living room after leaving for seconds to find that he was on his way into the kitchen with a half empty cup of tea and narrowly avoided him putting it on the table where the cake stood with barely a vacant spot.

"Do you want a cup of tea?" he asked, standing with the cup tilted forward in his hand.

Carefully taking the cup from his grasp I answered, "I'll do it dad.  I was just going to clear up a bit first then I'll bring one for you."

He stopped to look at the cake.  "You're awfy clever," he stated.  "That's beautiful."

The praise is welcome.  The heart attack is not.

Dad was due to go in to respite on Friday.  I was aware that we hadn't been out and about all week.  Apart from his visit to the Day Centre on Wednesday, he hadn't been outside of the house.  My gratification to Columbo knew no bounds although I know this statement proves that I have more faces than the town clock.  Nearing the end of the week, when finding the kitchen underneath the sugar rubble was an almost impossible task, I decided to take dad out for dinner.
.............................................
The week hasn't gone without some moody moments.  I've had more than my share of trying to keep dad on his feet and stopping him from pulling at this clothes when I'm trying to help him dress.  Sometimes I'm just not quick enough to prevent him from doing whatever he does next and his senses no longer tell him to wait.  His irritation gets the better of him.  I grin and bear it.
..............................................
Dad loves a salad.  He eats small portions but I dress the plate nicely with a good helping of his favourite coleslaw.  He'll have salad with a sizeable hot fishcake or a slice of warmed quiche.  Every time I present his tray in front of him he'll say, "Bloody lovely," in his worst Yorkshire accent then he scoffs the lot.  One day I watched him as he ate his last but one mouthful.
"You're enjoying that dad." I commented.
"No I'm not," he shot back.  It took me by surprise.  I half laughed and said, "Well you've almost cleaned your plate!"
"I know...but I'm no enjoying it," he replied.  With that, he put his fork down and sat back still chewing on his last bit of food.
"Oh well," I said.  "I'll take it away."  I removed the tray with the 'clean' plate from his lap and carried on regardless.  I can't take the comments to heart.  I know 5 minutes later he'll be a different version of himself.  I know that if he smiles then I will smile too.
............................................
Friday finally came and it was time to take dad to respite. He got up that morning and entered the living room just as I was getting myself out of my chair bed.  I hate when I'm not fully awake for him as it's harder to try and keep him seated while I juggle clearing up the floor, putting the chair back together along with breakfast duties...in particular, making tea.  But I managed even though the order of things were back to front.
"I didn't know where I was this morning," he told me.  "I had to look out the window to find out!"
"Well you know wherever you are that I'm not far away so don't worry about it," I said, which wasn't quite true as he was going off to respite in a few hours.  That little statement stayed with me for too long.  I'd mention it to staff later...just keep an eye on him.
I took him out for lunch before dropping him off and getting him settled.  I bought him a stash of crisps, biscuits, soft drinks and a can of lager for each night of his stay.  That cheered him up!  On arrival, one of the ladies who regularly looks after him welcomed him with a hug and said "It's so nice to see you back John.  How did you enjoy Blackpool?"
Dad turned to me and asked, "Have we been?"  "Yes dad," I answered, "we have."
"Oh well, it must have been good then!" he said.
As sad as it is that he can't recall, I know that in the moment he knows where he is, even if I have to remind him a million times.  If I can hear him tell me then that he is having the time of his life then that's good enough for me...although I can't help thinking that I could save us both a bloody fortune in future!
Dad watched me as I hung his three sets of clothes onto hangers in his room.
"Am I staying for a month?" he asked.
"No dad, just for 3 nights," I replied.
"I know," he said, laughing.  "I'm just kidding."
Two minutes later.... "Am I here for a week?"
"No, dad....."  etc, etc.
As I leave he said, "Okay, I'll see you tomorrow."  🙈

The weekend went by so fast.  I indulged in a few glasses of fizz and was happy to have dinner cooked for me.  I called the Care Home every night around dad's tea time to remind them to give him his can of lager and to ask them to put a specific TV channel on for him.  I was told on the first night that he had gone to bed before 8 p.m.  I know without me being around to keep him in a routine that he would lose the plot entirely and probably be up wandering around at stupid hours in the morning.  One day his Dementia may take him along this route, but not yet.  I can't regulate his day while he's away and I have to come to terms with the fact that I shouldn't feel guilty because of it.  I need to be able to enjoy myself doing my own thing from time to time.
I write this as if I've been given 'lines' at school because the reality is that no matter how many times I say it or how BIG and bold I write it...the fact is I DO NOT KNOW how to switch off and feel alright about it.
I picked dad up on Monday morning and he was glad to see me.  I'd already done our food shopping so I took him straight home and put the kettle on  The weather was inexplicably sunny so we were able spend time outdoors in the garden.  I got a chair from the shed for him while I carried on with all the weekend's washing and pottered around pulling weeds from the ground.  I watched my dad as he sat looking deep in thought.  Occasionally he would open his mouth to say something and although words came out, they weren't always the words he meant or more frustrating for him, he couldn't find the word at all.  I usually put this down to his routine being knocked off a bit....but today is Tuesday, and all too frequently he has said something that makes absolutely no sense to me at all.  I also watched as he sat with a hand resting on his lap with his fingers in a pincer grip while staring at it, lifting his hand now and again.
"What's up dad?" I asked curiously.
He tutted, then said, "I thought I had a cup of tea in my hand and there's nothing there.  Stupid arse!"
I made a joke about wishful thinking before I went off to make some.  Moments later he was looking for his glasses which he was already wearing.
I took him out to get a haircut this morning and bought him a new pair of trousers before finishing off with coffee, tea and cake.
"We'll head home now dad," I said.
"Good," he said.
"Are you tired?" I asked.
"No," he replied.  "I'm fed up!"
"Fed up?" I questioned.
"Aye," he said.  "Fed up being pushed around all over the place."

Home time then!

Dear Lorraine,

Listen to your heart, not your dad's Dementia.
Stay strong...keep smiling.
It's okay to want to wring his neck sometimes.
Give yourself a break...have a Malteser!

Always here for you
Your conscience. xx

Candle in the wind

Today it's pouring with rain so dad and I aren't going anywhere.  It's a day for staying indoors for sure which means dad nods off a lot and awakes suddenly saying, "Do you want a cup of tea?" while trying to get himself off the recliner...without much success.  At least this allows me time to get up and take over the task he requests, telling him to sit back and relax and I'll take care of it.  I couldn't possibly make all the cups of tea he asks for.  He doesn't finish what's in a cup at any time as he forgets it's sitting beside him.  By the time he reaches for it it's stone cold.  It's so much easier to cope when there is an opportunity to break the day with a little drive and a walk around the shops.  He is much less restless when we return home.  His bobbing up and down is purely down to Dementia and nothing to do with thirst.  I leave a glass of orange squash beside him so that there is something there to reach for when he looks at the table beside him.  This seems to work, at least for now.

I've busied myself in the kitchen making flowers and bits and pieces for upcoming cakes this week.  I show dad the various flowers as I walk past him through the living room on my way to the 'new' cake cupboard to store them.

"What do you think of these dad?" I ask.

His face lights up.  "Those are beautiful," he says.  "What are they for?"

I've already shown him the large cake that's just left the oven a few minutes ago, telling him it's for a wedding next weekend.

"I'm making a wedding cake dad," I tell him...again...and will repeat later.

"Very good," he says.

We were able to get out and about over the last couple of days.  As I pushed him around the shopping centre in his chair, a familiar face approached us.  A lady who still lives in the village where I was brought up and has known both my parents for many years stopped to say hello.  My dad had no idea who she was.  "Think of the Bowling Club John," the lady said.  My dad looked even more confused.  She told him her name and he repeated it, but it still didn't mean anything.  She said to me that she was sorry to hear about my mother and apologised for not being able to make it to the funeral.  There was no need to apologise, I told her.  My dad was there and didn't even know who's funeral it was.  I quietly told her that my dad doesn't recognise my mother in photos any more and never mentions her name, unless he's confusing me with being his wife and I ask him what my name is.  Most times he'll say Mrs. Duffy but he did say Anne recently.  I have stopped asking him if he knows who I am.  I don't need to have him confirm his inabilities.  Unless that kind of conversation is led by him I don't pursue it.  But I don't let him think that I'm his wife.  I will always correct him as gently as possible. 

The weather has been kind although a bit too cold for dad to sit outside.  At least getting some fresh air makes a lot of difference and when we got back home after drinking coffee and shopping, dad sat back on the recliner and nodded off.  I went outside to the back garden and took 'dug' with me.  Giving him complete peace and quiet means he'll keep his eyes closed for as long as possible and he won't appear beside me in the next 5 minutes.  If I put the kettle on when I leave him to sleep I can guarantee he'll be right there as I'm pouring myself a cup of tea or when I put the cup to my lips.  The difference between him thinking that he's had a 'great sleep' and actually having one is tremendous...for me that is.

I pottered around in the little memorial garden that I created for my mother.  It's not complete yet but I'm in no hurry.  I added a pink lantern and keep a candle burning.  My dad hasn't seen it yet so I don't know what he'll make of it.  I'll have to wait and see on that one.

Look what I found tucked away in a box in the shed mother.  I showed it to dad and he doesn't remember.  But that's okay.  He can't help it.  At least one of you retained the memories of 63 years of marriage.  You just took them with you.  It's not the way you hoped things would be but I hope that wherever you are you are watching over him and have a better understanding and smile.  He'll come back to you as the man he once was...but he's holding out for telegram from the Queen.  You'll have to wait a while!

I'm still here mother.  I'll keep the candle burning.

    

Just one thing after another

With Blackpool now a distant memory for one of us and a non existent one for the other, it's business as usual in the Duffy household.

I've managed to pass my cold on to dad which was inevitable with us staying in the same room while we were away.  I am on constant hanky alert as he sneezes and coughs into the air, checking the radiators for heat so he can hang his hanky to dry.  Nooooooooooooo!  Anyone entering this house at the moment will be provided with one of these and required to walk through a sheep dip upon leaving!

On Tuesday evening I was keeping myself busy making sugar bits and pieces for an upcoming cake and as usual had one eye on dad who was laying back on the recliner overdosing on Columbo.  I've mastered the knack of watching Netflix using my earphones while working sugar magic and watching dad at the same time.  Multitasking has taken on a whole new meaning in this house.  As soon as he leaves the chair, my eye shifts to the clock to check the time.  As the minutes tick by I realise that he is taking much longer than usual in the bathroom.  I walk quietly to the door and listen for a moment before asking "are you okay dad?"

"Aye.  I'm fine," he replies, but he shows no sign of exiting.

I stand around a little longer and hear him puffing and blowing, muttering "oh deary me!" more than once.  I worry that he has found the razors in the cupboard or that he is messing with the shower settings.  I've no idea what he's up to and just as I'm about to knock and enter to find out, the door opens...and there he stands minus his trousers and underpants and socks.  The odour in the room already alerts me of a problem.  There's a trail of discoloured water leading from the sink across the bath mat to the shower floor where his dirty and sodden underpants lay.  His sleeves are rolled up and I can see excrement on his bare arms and hands.  He looks so tiny...and worn out.

"I've shit myself!" he says, pointing to the underpants while holding the pile of clothes he'd removed.

"Aw dad, don't worry about it.  Let's get you all cleaned up," I say.

"I've done it.  I'm clean!" he states.

I showed him his arm and told him that it'd be best to have a quick shower and get into his pyjamas to make him feel better.  I laid a towel on the toilet seat and managed to get him to sit down while I took care of all the dirty clothes.  I got him into the shower and cleaned him up as quick as I could then led him to the warmth of the bedroom to dress him ready for bed.  Feeling better, he settled back in the recliner in the living room and continued to enjoy his Columbo while I was on hands and knees cleaning everywhere else he'd been with all sorts of sprays and bleach.  Thank goodness for a tiled bathroom is all I can say.  I threw all the clothes into the washing machine and boiled them.

I didn't go back to making sugar things.  I was too exhausted.  I am thinking that it might be time to start using incontinence pads.

I might even get some for dad while I'm at it!

I didn't send him off to his Day Centre on Wednesday just to be on the safe side.  He was happy to be sitting in front of the telly being tended to instead.  I haven't taken him outside since our return from Blackpool either but I'm hoping by the weekend his coughing will have subsided and we'll get back to doing what we do best...eating and drinking coffee with a little shopping on the side.

His sentences are a lot more fuddled when his resistance is low.  Sometimes he knows he's said a completely wrong word and will chastise himself.  Other times he might get annoyed that I don't get what he's trying to tell me.  I might laugh then realise that he doesn't find it quite as funny.  I'm met with "WHIT?"  Luckily my skin gets thicker every day.

This morning dad appeared in the living room wearing all his clothes from yesterday, including his shoes!  I was still laying in my chair bed.  It was 6.20 a.m. and still dark outside so when I heard his bedroom door open, I expected him to go to the bathroom and go back to bed as he usually does.  But no...not today.

Bleary eyed I said, "Dad, go back to your bedroom and lay on top of your bed for a bit until I get myself sorted."

"No it's okay," he said, quite oblivious of the darkness and my situation.  "I'll just sit over there," he said, pointing to his recliner that even I couldn't focus on at that point.

The floor wasn't clear of cushions and the storage box where I keep my pillow and quilt.  I had to insist that he left the room.  He shuffled off and I dragged got myself up and made the place a safe environment before fetching him and changing his shoes for slippers.

"We'll stay in today dad, just until your cold gets better," I told him.

"Whatever you think's best," he replied.

I make no mention of his attire.  After breakfast I go to the bathroom and fill the sink with hot soapy water and lay fresh clothes on his bed.

"Come on dad, let's get you washed and dressed," I tell him.

"Who?" he snaps.

"You!" I say as I walk away ignoring the glare he's just thrown my way.

He can't understand why it's necessary to take everything off that he's just put on with a struggle that I dare not imagine.  Watching him trying to remove trousers while I'm in the room is bad enough for the heart as he stoops...his head getting closer and closer to the floor.  Feckin laminate how I hate you.

But I'm there to take over, to steer him in the right direction, to do all the kneeling and bending for him, to maintain him and keep him being the suave and polished gent that he always was and will continue to be.

Although it's not Sunday, I'm declaring this day a day of rest...

...for one of us that is.

Did someone say holiday??

After all the weeks of waiting for the trip to Blackpool, it's all over...and we're home.  Dad says he's had a "brilliant time" even though he didn't get to see the Tower or the main street all lit up.  I haven't the strength left to care!

On Saturday night I was ready to sleep on a bed of nails and unlike the previous night, I fell into a sleep as soon as my head hit the pillow.  Dad got up 3 times during the night.  The second time he shuffled passed the bathroom door and went to the room door instead.  I hadn't locked it from the inside (lesson 398) and just before he got to it I said, loudly, "Dad!"  No response...shuffling on...

"DAD!  Where are you going?"  (stupid question, I know this already)

He didn't answer "toilet!" until his hand was already on the door handle.  Luckily, in one sense, that the door was quite hefty and difficult for him to open properly.

"That's the wrong door darlin'.  Come back inside!" pleeeeease before I suffocate you with a pillow!!

As he turned to find his way to the toilet which was less than an arms length away from him, he reeled back a little as the weight of the door left his grasp.  If not for the wall behind him he would probably have keeled over.  "Stupid buggar!" he muttered to himself as he shuffled onward towards the correct door...where I'd left the light on so that he would always know where to go during the night.
This.Makes.No.Difference.

He left the bathroom, switched off the light and got back into bed.  I waited a minute, got out of bed, switched the light back on and left the door ajar and got back into bed.  A couple of hours later he was up again and found his way to the bathroom without the detour.  He left the bathroom, put off the light and got back into bed.

I stayed in bed!

From Friday to Saturday night I'd already made several phone calls to my daughter.  I felt like I was admitting defeat.  Looking after my dad at home and taking him out on regular outings on familiar territory can be weary enough but being away from home brought a whole variety of different situations to deal with.  From the 'dying swan' routine on several occasions to retrieving his snotty paper hankies from containers filled with tote bags in shops.  If it looks like a bucket then it's a bucket.  I've turned empty flower pots upside down in our back garden for this reason.  The eyes on the back of my head were working overtime.
Another thing that he started to do in Blackpool which he doesn't do at home was try and get out of his wheelchair.  The first time he did this was Sunday afternoon when my 'back up' had arrived...funnily enough.  We were finally able to walk along the North Pier which is the quietest of all and on a good day...peaceful.  This wasn't that day.  The weather had taken a turn and it was pretty blustery.  The sea was battering along the front which made a thrashing noise.  For someone who is terrified of water, I found the sound quite exciting.  It wasn't freezing cold but I had dad all wrapped up with his legs in a blanket and a furry hat to cover his ears which I had only just bought for a fiver minutes before.
Rain was imminent so we parked ourselves underneath a vent which was blowing hot air inside the Carousel Bar to have coffee.  Minutes later I could see dad pulling at the blanket over his legs.  At first I thought he was just trying to take it off for comfort.  With half the blanket still tucked under one foot and the other half catching itself under the front wheel, he made to step forward and over it...if you can imagine that!...catching his foot in the flowing blanket and getting nowhere but also trying to lever his body out of the chair by pulling on the arm rests.
I stood up and started to take the blanket off completely before it got tangled up in the wheels and asked him, "What are you trying to do dad?"
His tone was short as he answered, "I'm going to the toilet!", pointing to the far end of the room.
"Sit back!" I shot back, fighting with his feet which weren't relaxed enough to allow me to get them back onto the footplates without hurting myself.  He's only trying to 'help' but all the while aggravating his own frustration...and mine.  I bite my lip and get him sorted, finally able to wheel him to the edge of the pier and tip him over toilet.
The 'dying swan' act needs to be avoided...I am learning this the hard way.  I can't have him standing on his feet for long...I mean seconds...not minutes.  At home, in the back garden, I watch him as he walks around the path (without his stick!) and look at the plants or potter around before he makes his way to a seat that I've put out or back indoors.  No problem.  But I'm there just in case.  I just don't fuss.
Outside of the home...he can't stand beside me (with his stick!) for a minute...let's say at a Hotel Reception area for example, while I ask the receptionist to book us a taxi which only takes a second without him stumbling forward onto the desk (which is conveniently there to support him).
"Oh...oh...oh!  I don't know what's wrong with me!" he whimpers.
"Nothing dad, you're fine.  You just need a seat!" I tell him as I guide him into one.
There is no more mention of feeling dizzy...sick...ill...anything, because the taxi is on it's way and it's all of a sudden a "great day" according to planet Dad.
We went to the Circus in the Tower and dad was sitting in the wheelchair area which only allows one able bodied person to sit with him on the seats provided behind him.  My trusty companion, Douglas and I decided to sit together in front of dad, on the back row of the standard seats so dad was directly behind us.  I turned often to ask "are you okay?", "are you enjoying the show?", "are you warm enough?"
Every time he'd give me thumbs up...until the first interval. Douglas went off to get us ice-cream and I could feel dads footplates rattling at the back of my head.  I turned to find him once again pulling at the blanket covering his legs and trying to lever himself forward out of his chair.  Thankfully the barrier in front of him and the brakes on his chair prevented him from doing any of this.
"What are you trying to do dad?" I asked.
He pointed to the empty seat beside me.  "I'm coming to sit there!" he said, quite matter-of-fact.
Dealing with a body that isn't able and a mind that thinks it can is a continuous battle.
I haven't earned all of my stripes for that one but I'm working on it.

Yesterday morning, it was time for us to leave.  I called dad to the bathroom once I had everything set up for his wash.  I watched as he shuffled towards me in his pyjama trousers.  He was slower than normal and looking a bit puzzled as he scratched at his wee pot belly.
"Are you okay?" I asked.
He held out his arms.  "Geez a cuddle," he said.  (Translates: give me a cuddle for all you non Scots!)
He put his arms around me and I held him.
"I love you hen.  I love you so I do," he said.
"Aw that's nice to know dad.  I love you too," I replied.

My mother was with us in Blackpool dad.  When you weren't watching, I set her free into the sea on the North Pier.  Just enough of her to know that we had returned, and we'll come back again.
All of us.