Dementia the Face Changer.

I read The Sun today – don’t judge I was at my Dads.

The news about Cilla Black was obviously prominent and I read the tributes. One thing that stood out for me was that she hadn’t wanted to be a burden, hadn’t wanted to suffer and had wanted to go out at a reasonable age without being too ill.
The universe served you well Cilla. – Thank you for the entertainment I didn’t like Surprise Surprise but I liked blind date and even recall watching Cilla in Black and White when I was very young obviously.

There was also a quote in there regarding her mum, Cilla said her mum had said during her demise she was trying her best to die, she’d had enough, she was in pain and suffering knowing her life was not the quality or quantity she had wanted. It was her mums suffering that had prompted Cilla’s thoughts.
The universe didn’t serve Cilla’s mum.

Another piece was about an ex-nurse who had travelled to a Swiss suicide clinic. She ended her life on the 21^st July as she thought she had reached her ideal shelf life. She had no illnesses; she had no problems. She was fit and healthy. She also had a partner and 2 sons.  But she had decided it was her time and her family supported her, if not understanding her.
She had the capacity to tell the universe what she wanted and it listened.

I went to see mum today and for the first time she didn’t know me.  For the first time I wasn’t heartbroken I didn’t cry. She knew me as someone, she knew she knew me. She greeted me with a smile and said hello love. In all honesty I wasn’t aware, but as the conversations went on I realised through her eyes was I was not her daughter, not today at least.

We went outside and sat in a chair. She looked quite well actually, although her skin is like tissue paper and she has those old lady bruises and skin tears. Because she has spent so long in the garden, just sitting and watching she is a nice colour. A stranger could well describe her as having a healthy tan.
But I know better, healthy isn’t even close. Her breathing is laboured but it has been for a long time now. Her words are no longer fluent but each syllable is a raspy effort.  I’m not sure if it because she struggles to breathe or because she struggles to form words and sentences.

Today though she chatted, she didn’t tell me I shouldn’t have come to visit her. She didn’t accuse me of not caring and she didn’t tell me how disappointed she was in me. This has been the basis of her conversations with me since she has been in the home.

Neither did she ask how our kids were, she didn’t ask if we were enjoying the school holidays and she didn’t ask how Dad was.

The tanned face with the beautiful blue eyes looked tired and withdrawn. Mums conversations were random about people who were not there, names I had not known.

I was trying to engage with a stranger. A stranger wearing my mums face.
Have you seen the film Face Off?
It reminds me of that two characters a terrorist and an FBI agent swap faces.  Opposite ends of the spectrum, different personalities. It feels like that has happened to my mum.

Only a stranger would not ask how her adored grandchildren were; only a stranger would not acknowledge the plant I had brought for her and surely only a stranger would not recognise me?

I was glad today that the mum I have got to know over the past few months wasn’t there. She wasn’t upset or agitated or wailing. I don’t know if I was glad for me or for mum. Probably more for me as there was no accusations, no distress and today in mums world not too much emotional or physical pain.

The mum I knew before dementia would have been devastated at not knowing her own daughter, at not knowing where her husband was and at not asking about her beloved grandchildren.

A once proud, intelligent and strong woman has to have all her personal care needs attended, she has to be guided at every movement and she has no idea where her room is or where she is.  She does not sleep at night afraid to go to bed, she walks the corridors or sits in the lounge area just waiting, waiting and waiting. Waiting for the next day for the sun to rise and for the day to begin but she doesn’t know the day, it doesn’t really matter.

Today she was counting and got “stuck” at 6. She holds her head in her hands and prays for relief, relief from the confusion, the pain, the situation?  I do not know and I don’t think she does either.

What is happening universe we don’t understand?

A Unique planter in the Care Home Garden

 

Tha Dunt Do It Like That

As its Yorkshire day (Just about) and I am a proud Yorkshire lass and the youngest daughter of a proud Yorkshire Man and not just any man he’s my guiding light and solid rock.

Always has always will be – I am so like him as the youngest of 6 I have many qualities and quirks not only from Mum and Dad but also from my older siblings, I also have Youngest Child Syndrome.

Never heard of it? Let me explain I really truly believe that everyone and I mean everyone is older than me.  That was fine whilst I was still in my twenties but really? Still being surprised by peoples ages now I am a ‘certain age’. Remember Jeff on Casualty? He died sometime last year. (In the drama not in real life) and when it was his funeral they said he was 42.
42 He was 42!
I was in shock that he could be younger than me even though it was fictional. I may have even tweeted about the subject.

But back to Dad, methodical, organized and straight forward everything has a place and is put away, everything is useful and will come in “handy” one day. These are his positive traits and ones which I am sadly lacking, as I missed out on the timekeeping and organisational gene. I look at his cupboards, shelves and tiny boxes of organisation and lament the gene that got away.

One less human in the home and a very organised Dad results in less housework for me.  I still go to see him almost every day but it is a bit more of a challenge keeping him occupied.
Mum was a shopper “let’s just nip there” fine by me as we generally just “popped” somewhere for lunch and before you know it the day had gone and it was time to pick up the kids.
Dads style is not to just nip anywhere.

Dads straight forward, hard working, methodical nature dictates there are two ways of getting things done.

His way and the other  way. (for other read wrong)   A positive of youngest child syndrome is that I generally do agree with my hero, however my patience has been wearing thin of late because I have inherited the  my way gene.
That one didn’t miss me. Ask Mitch!

So far in the last week or so Dad has Shown me the right way to.

Put the liner in the Kitchen Bin.
It’s a bag – it goes in the bin. I have been doing it wrong in the 26 years since I left home.  He has shown me this three times. I now have decided that I will not empty the kitchen bin unless he is asleep or not in the house.

Recycle
We live in the same city, we have the same recycling regime but every single time I take something to the bin that is paper or plastic he tells me which receptacle it should go in.

Hang the washing on the line.
The washing I was failing so badly with was the bedding. It Is Square Dad It is Square! How can I cock that up?

A beauty that required a square hole

A Square Hole.
It was for a rose bush. Dad had made a frame. I had the audacity to dig the hole without the frame restricting my leverage. I must confess when he came round the corner I slapped the frame down over the hole and pretended I had used it all along.

Trimming my Tomato plants.
Note I said My plants. I have taken lots of guidance from my dad on the growing of our produce.   I know he likes to show me how to nurture my produce and I appreciated his guidance as I really don’t have a clue when it comes to growing things. But this year I have one plant that I am leaving as an experiment. It is growing as nature dictates. Dad is not impressed by my plans.

 

 

Mowing the lawn.
Dad has a beautiful garden and a powerful petrol mower. A couple of weeks ago our boy cut the grass for him. I could see Dads inner battle as boy sashayed across the lawn with gay abandon pretending to be revving a motor bike. The grass was cut but not in Dads regime. Bless Dad, he did well and restrained himself from telling our boy how to cut the grass he even got a fiver I believe.

I was not so lucky.

No blades of grass were harmed in the writing of the blog

I got out the lawn mower and started her up.  Apparently you can gas up a lawn mower. That went down well. I started on the outside edge, something I thought was logical. Well not in Dads world. Thankfully he stopped short of drawing a diagram but I was instructed which blade of grass would need cutting at what angle and degree and time in the proceedings of operation grass cut.

Let’s just say I was so glad that the engine was revving up a treat that day as I would have got done for my language. I’m not being mardy honestly.

But if I hear the words “Tha dunt wanna do it like that” much more…

 

Grandad Knees

This is my Dad’s knee

Well it had to happen one of those calls.
10.21pm. I’ve fell and hurt my leg can’t move at all.
On my way. Arrive at Dads. His emergency bracelet still in pristine condition on the windowsill. Why didn’t you just press your buzzer Dad?
The question didn’t warrant a reply the look said it all.

His knee was swollen but it was his thigh that was hurting. He was grey, slightly breathless and obviously in pain. Now it’s a bit difficult to say when Dad is in pain as he is a bit of a drama queen. One of the kids nips him and we get dramatics, traps a finger in the doorframe and he deserves a bafta. But real pain that you or I would experience and he will do his best award winning performance to avoid any fuss. But the signs were there. Big fat signs in the fact. He couldn’t stand up, weight bare and he was quiet, even quieter than normal. So executive decision made and we went to A&E. He didn’t object that much either so we knew he was worried too.

Manhandled him into mums wheelchair and started our journey. Every single set of traffic lights we had to stop at eventually arrived at hospital registered Dad and then the waiting began.
It turns out Dad’s knee had given way around 9.00pm and he had managed to pull himself up into his chair and sit there for over an hour before calling me. So almost 3 hours after he fell the triage nurse saw him. She said he looked poorly and I presume he is defined as high risk patient she put him straight on a trolley and into a bay.

Last time I was in A&E it was with mum she was very vocal, very vocal indeed not happy to be there and wanted to go home. She shouted at anyone and everyone who would walk past her and it was a tad embarrassing. So here we were with Dad who doesn’t speak much anyway and coupled with the pain he was in it and the fact that he was in hospital the atmosphere was less than jolly.

Nurse came did observations, said doctor would be there asap.

How to pass the time on when awaiting a doctor in A&E on an evening?

First of all there was a Vic Reeves club singing orderly who was very entertaining for a short while, but it was a fine line between no idea what song you are singing and if he was accidently throttled at least he is in the right place. I was just glad the visit was with Dad and not Mum as she may well have
A) joined in the sing song or
B) been the one doing the throttling.

We played Eye Spy. Now eye spy is the last resort but here we were using it first. Very sad indeed for two middle aged sleep deprived women but needs must. It all started well and ended with my sister saying W. W, I assure you there was nothing – nothing at all that started with W. So randomly I kept saying anything that I thought may be within the vicinity of the ward nope it wasn’t  ward, it wasn’t whiskey which had obviously been consumed by the guy in the next cubicle and it wasn’t even wubber gloves.  Even Dad raised the corner of his mouth to that answer and the game finished as neither of us could think of anything sensible after that.

The answer was wall. Strangely I had felt like banging my head against it for the last two hours but failed to realise that wall was the holy grail of eye spy.

Requiring some action I decided to take matters into my own hands.
Just  like when you are waiting at traffic lights and holding the car on clutch control. Change to neutral and handbrake the lights change.
So I excused myself popped to the loo and the vending machine. I come back armed with choca mocca and a chocolate bar and like that green light the doctor had appeared to see Dad.

Now I say doctor, He was approximately 12and a half years old. I would have curled up and died if he had called me madam.

But he didn’t he was lovely with Dad and asked him lots of questions said he didn’t think it was broken but x-rays of hip, femur and knee would confirm.
He asked Dad are you in pain?
Dad replied with “well no not really”
Dad, your leg hurts doesn’t it? “Yes it does but he knows that”
On a scale of 1-10 what level is your pain? “I’m not sure I’m no good with numbers”
Fits of laughter from the naughty girls in the corner again.

So whilst I ate my vending machine treasure and drank the questionable chocca mocca, sis escorted Dad to x-ray.

On their return we waited, and we waited. There was some comings and goings, the doctor kept passing by our bay, glancing and smiling. We started to play Time O’clock Bingo. A game invented then and there in the holding ward of our local A&E. Nothing to do with Bingo but a catchy title you must agree. Feel free to play along at any times you feel that time is passing by slowly. You know that saying a watch kettle never boils? well a watched clock never moves. Time stood still and I witnessed it. Witnessed at 2.24 for what I am sure was so, so much longer than a mere 60seconds.

Rules for Time O’clock Bingo? Simply look at your mobile phone or watch and get the people in your company to guess the time. I assure you it is fun the sort of fun when you have nothing I repeat nothing left, no conversation, no letters left for eye spy and no chance of sleep … I am certain that that time from 2.02 to 2.38 was actually 4hours . It could even have been a decade or two because I witnessed the 12and a half year old doctor, grow a beard in those 36 minutes and age by at least a decade and a half.

So much so that he came back assured, steeled himself to talk to the crazy laughing old dears and their Dad. He said nothing was broken but Dad has basically no knee ligaments. And he has a very tired knee.
We know that it’s called Grandad knee and most of the family have it. Me my Grandad knees don’t like mornings, brothers are bad all the time, sisters are on an evening and nephews are after playing football. Niece had to have operation at a ridiculously young age to sort out her Grandad knee. We all know about Grandad Knee.

So they decided that because Dad lives on his own now. Yes we said it out loud and all looked forlornly at each other as we realised that mum was  in the nursing home oblivious to Dads fall and his current state of agony.

Dad should stay in for observation. Doctor asked Dad if that was ok?
Dad gave him the look. Doctor waited for response….
Sis finally put him out of his misery by saying. “that’s his it will have to be ok face”

Sisters dissolve into fits of laughter that you only get after being sleep deprived; have an overload of sugar and hysteria has set in.

Doctor made a hasty retreat and said they would arrange transfer to a ward.

So we waited and we waited. Time O’clock Bingo made a reappearance and at 3.13am Dad was transferred to the frailty ward.

My big strong, hero of a dad was described as being frail. And he was, he looked it. He looked tiny in the bed, he looked even more distressed that when we brought him into the hospital, and he looked frail. Had we neglected Dad whilst looking after mum and dealing with all her issues?  Yes probably. Dad was officially frail.

We left as the birds were chirping their morning song. We saw the sun rise as we drove home and it was light as we went to bed.

Your Chair is moved Mum.

Remember when our Nannan, your mum went into a home 26years ago? You said if I ever get like that put me in a home. I don’t want to be a burden. We have all said the same recently to our own kids, partners and friends too. But alas mum you’ve  forgotten that conversation, one that has been repeated many times over the years. Remember how  Nannan got a “bit funny“. So funny that she would walk across a busy main road to our house in pitch black with her purse tucked either in her bra or under her arm? She would hide her purse around her home and it would take ages for us to find it. She would forget the day and time and would get angry at you her main carer. Talk about history repeating itself. I recall how it broke my heart on my wedding day when she said “I don’t know who you are lass but you look beautiful and I wish you all the best”. That was the last time I saw her. I have felt guilt ever since that day not seeing her since we got married, I used to see her virtually every day. She was 90 a week after the wedding, I was in honeymoon mode and didn’t visit. But I used to call every day to check how she was.  Then she went into a nursing home a week after that, and you told me not to visit because it wasn’t Nannan. Then she died 2 weeks later. I thought that was tough. But you moving into a nursing home, now that’s tough.  Your room has been personalised, we’ve took some photographs and your chair. So there are familiar items there and we really hope you get some comfort from that. Your bungalow looks spacious and empty without your chair there and it makes it all the more real for Dad. His life’s companion, friend and lover no longer at his side. I know he’s not sleeping , he keeps waking up in the night listening out for you. The void is now physical as well as emotional.
I know you are upset that your six kids had let you down so badly.  Oh we know mum we feel it every second of every day. We know you need 24hour care, I’ve washed and bathed you and cooked and cleaned for you and tried to keep your spirits up. But its hard and we really couldn’t cope any more. Dad was exhausted, that’s replaced by emptiness. I was stressed, worried and yes exhausted too. I felt inadequate. No doubt the feelings you had a quarter of a century ago with Nannan.
So you are in your new home, you seem to have settled. Staff say you are keeping them on their toes and I so believe them! Dad went to see you yesterday and you were happy to see him and chatted and laughed. I came to see you over the weekend with our boy fresh from his trip to France. I must admit I wasn’t sure if he should see you. But your love for your family shone through the hurt and confusion. You talked to him gave him a cuddle and were so pleased to see him. You loved the cup he had brought you from his holiday and he liked it when you kept telling me off for interfering and always having to “shove my nose in and know it all”.
We stayed for around an hour and in the lift he turned to me and said  “God help me when you get like that mum”. In the car he asked a few questions between the snot and the tears I answered as best I could. Explaining that sometimes when we get older our brains revert back to being like children and that’s why there are mood swings and toilet accidents. But its still Nannan and your my mum deep down. And we will still visit and see you in the hope that those blue eyes shine again for us.
So its tough on all parts mum, its tough for you because you are confused, scared and no doubt lonely without your life’s companion by your side. Not forgetting the absence of  the constant stream of visits from us  and phonecalls “just checking”.  Its tough on us explaining to your youngest grandchild that Nannan doesn’t live with grandad anymore she has to live where nurses can look after her all the time, but no she’s not in heaven and yes we can still call it Nannan and Granddad’s house because that’s what it will always be even if Nannan and her chair are not there anymore.
Love you mum see you soon, and hopefully I’ll not get told off today when I visit.

This is the rose we dedicated to you and Nannan at the Botanical gardens.
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Sadness is Here

In the practice of mindfulness it is important to acknowledge the moment. To acknowledge the feelings the emotions and the take note of the present.

How long does this sadness last?
The text that flashed before my eyes.
No idea. I was on week 12.
Sadness.  Our mum the matriarch of the family, her generous nature, beautiful smile and keen sense of humour, physically still here but the eyes dimmed, her smile and humour are AWOL.  The sadness is here.  Dementia is present. We mourn our mum and a loving wife.  Her personality her humour, her love of cream cakes and the passion for her family. That part has gone, we still love her – love is unconditional. But we mourn as we try to get to know her new personality, her new ways and her new found vocabulary dropping the F bomb at an alarming rate. Shocking at first and funny, but not mums style, it is sad. Sadness is here.

Chaos was all around, preparing for a short break with the kids. The kids were excited as they headed to the car. Mitch was loading the car with dogs, snacks and excitement.  I was sweeping the floors. (I like to come home to a clean house)

It hit me. The Sadness was here.

Like a bolt out of the blue, there I was sweeping the floor and realised that Mum hadn’t called to say “have a nice time, don’t forget to ring when you get there”. I shouldn’t have expected the call as mum had forgotten how to use the phone over the last couple of weeks or so and her calls to me had ceased.  In all honesty the calls had dwindled over the past 5 months.

I don’t know why it hit me so brutally that day, probably because deep down in my let’s pretend none of this is happening mode I knew when we returned in a week’s time we had “that” meeting with the social worker, to discuss a care and support package for mum.

So the holiday came and went. It was blustery, it was wet and it was also sunny. The scenery was breath-taking evidence above, the funs stars were fun and we had a nice time, a nice time with sadness loitering always loitering.

The meeting day arrived and the social worker was wonderful, she was so kind to Mum and Dad, so understanding as our tears flowed. She was fast acting when Dad the stalwart of the family, broke down and admitted he couldn’t take anymore. Sadness and desperation was there. It is more than sad seeing your Dad a husband of 65 years collapsed unable to speak and take any more, physically and emotionally exhausted. We had tried we had slept over on several occasions to give Dad a break. I had been there virtually every day to take some of the load off for Dad and help out. We had lots of laughs we had trying times and we had emotional times. But now it was just too much. Too much to deal with, too much stress, too much heartache and too much sadness.

That day was tough, actually a breeze compared to this now this was devastating. We had to escort mum to emergency respite care to give Dad a break.  Mum hasn’t cried since her younger sister had died five years earlier. But now she cried, she wailed and showed us her sadness.

It should have been for just one week or maybe two. However it soon became apparent it was just too much for an octogenarian who had been dealing with much more than he had shared. The realisation was that she could no longer be cared for at home, night carers were not on offer or an option.

Dad was ill for the first week, exhaustion, relief and sadness.  Week two came and went.

It is now week 10. Sadness is still here, the mourning is present and we are still awaiting that room in the nursing home. Desperation is back.

If you have any comments let me know, feel free to share my blog, and if you want to join in the sandwiches to caviar journey please follow me and come back again soon. Thank you

Fishfinger Sandwiches

Here I am a fully paid up member of the sandwich generation. I care for my elderly parents, two kids and I have a long suffering husband. Oh and we have a wonderful springer spaniel who has a dodgy back and wobbly heart who says things are always straightforward, even the dog needs extra care.

Boy is a handsome pre-teen, funny  independent and not forgetting untidy. Girl is tenacious, loving and very chatty, yes very chatty so much so that it often turns into “white noise” and I don’t realise she is actually speaking to me. Am I a bad mum? Yep at times but aren’t we all at other times I’m an awesome mum and most of the time I’m an adequate but very loving mum.

Wife to husband of 25 years.  We have laughs we have tears and we also live with depression. It’s not a bad thing at all it is just part of our relationship sometimes the black dog is so big in our home we feel stifled by its presence, others it’s just sat outside the window looking on ready for a visit or loitering around the home but we have control, acknowledgement and acceptance.

Daughter to my wonderful parents, married for 65 years, parents of 6 for over 60 years and parents to me for 46. Dad is 87 and Mum is 85. For the last 3-4 years I have been active in their care from cleaning the house to appointment escort. Latterly that has involved bathing and caring for mum as her health has declined and even more recently finding out about the challenges of Dementia. I don’t really know how it got to be an almost a full time job – just checking that they were ok on a daily basis to making sure I was there most of the time – it just happened.  It is a time of my life that has seen the biggest heartbreak and pain so far but a time I appreciate that I have been there for them.

Businesswoman? Well there hasn’t been time for any of that over the last few years I have been kidding myself, ran a networking group and inspired a few people. What is the saying so much to do so little time?  So my business my promotion has taken a back, back seat so far back that the seat is still in the station and the train has left without the carriage. I have previous success in business and one family member once said that he thought I would always be the first millionaire in the family… Where did it go wrong? Well the fat lady hasn’t sung yet so watch this space.

I have kept a fairly active social media presence, mostly on facebook with a couple of pages and seen various amounts of success.  But no actual being in front of people,  helping them grow and develop and making a difference like I want to, like I deserve to. My big fat hairy goals in business are to have a blog that makes people think, laugh and maybe even cry. Publish a couple of books and become a respected speaker somewhere along the lines of Richard McCann he is ace and a great inspiration. I have trained with him and will continue to do so along with the guys from the Public Speaking Academy too.

Things are different now. Mum is in the process of taking residence in a nursing home. Wow, that sounds so heartless but believe me it’s not. It is heart breaking – more of that later.

So I have a little bit more time on my hands. A teeny tiny bit. But more to the point I’ve had a realisation. I am 46 years old. I have a minute pension from a short civil service career. I do not own my own home, I have no savings at all and we live on the breadline. I am the only person that can do anything about my current circumstances and its time I went from Sandwiches to Caviar.  Please note this is a metaphor I’m not too keen on bread unless my husband has made it and I don’t think I like caviar. I want to provide for my kids not only with love that they get in abundance (along with a good dollop of boundaries and common sense). But I want to lead by example, so they can see you make your own way in life by being authentic,  showing respect and having fun. I want to unleash my entrepreneurial spirit and show them the way. I want to be at home, working and playing on something that I want to do that brings joy to me and my family. I love my life, I love those in and around it – Just like I love Fish finger Sandwiches, sometimes you need a bit more flavour and something extra.

I want an income that will enable us to go on holiday when we want, (shock horror even being able to afford holidays in school holidays). At present we don’t have passports; that will change. We deserve a lovely house with a huge garden that the kids can have a tree house and a trampoline. We all deserve nice things and so I’m sharing some of my dreams with you a big car preferably yellow so easy to spot in car parks that I love to drive, maybe a horse and maybe a swimming pool. We deserve choices and options.

I will also tythe 10% of my earnings to charities and causes close to my heart and ultimately I will set up a foundation / charity and that will be my legacy.

How am I going to make this transition from Sandwiches to Caviar? I don’t know yet I have lots of ideas and I have lots of support from my family and my friends.

It’s not going to be easy, it’s probably not going to be pretty, It won’t be fun all the time but I will get there.

This will be my keep on track journal blog. I will record the journey with mum and dad, I’ll record my family life and I will record my toe in the water to becoming financially sound and building the foundations for that foundation. I am building not only my future but a legacy.

Feel free to join me for the ride, and keep me on track.