I was your angel dad...now you are mine 💖

 Dearest Dad

The house is empty without you...and Columbo.  Dug doesn't know where to go and find you.  The 'crisp' bag in the cupboard hasn't fallen off it's hook once...and the arm rest on the recliner looks bare without your wet hanky antimacassar.

Of all the tasks that I have been presented with since my dad's passing, finding the right words to conclude this blog is by far the most difficult.  I type...I read...I delete.  Start over again...and again...
and again.

In my previous post, I told you that dad had kept repeating the 24th to me the evening before he passed.  He said that he needed to get the money sorted and I told him I'd sort it and that he shouldn't worry.  It was nothing relevant at all.  It was just ramblings but I did my best to pacify him so that he would feel calm.
I flew off to Maidstone to be with my daughter Vicky and spend time wrapped around my grandkids for a couple of days.  Vicky drove me back home on Easter Monday so that I could get on with making the arrangements for dad's funeral.  At least this time I wasn't having to deal with it all on my own.  Arranging my mother's funeral was very different...and difficult.  Everything had to be done around my dad which meant all of the emotions were locked away inside.  My main focus, right or wrong, was him.
On the 23rd April, Vicky and I visited Costa coffee shop at Livingston Shopping Centre and sat where dad and I had many many times.  I told her I was going to buy a scratch card as I usually would with dad, telling him that each one was the "big one" and that we'd be jetting off to a life of luxury leaving everything behind us.  He loved the idea.  My exaggeration of how we'd spend the money would often make him laugh.
"Let's leave it til tomorrow," Vicky said.  "It's the 24th.  Maybe granda was trying to tell you something!"
So we did.  We waited.  On the 24th we went back to Livingston Centre and I bought two scratch cards.  While we were having our tea and coffee in Costa I scratched the first card.  Four matches in a row...I revealed the winnings...£3.  I began scratching the second card.  Another four matches in a row.  I revealed the winnings.  My heart raced and my mouth fell open.  There it was right in front of me...the revealed winnings...THREE HUNDRED THOUSAND POUNDS!!
"Vicky," I began, stone faced and trembling.  Vicky stared at me.  I went over the card again to make doubly sure of what I was seeing.
"Awferfucksake!"
I'd only gone and scratched off a mismatched symbol.  One that looked similar to the one I thought was correct...but it wasn't.  For one glorious second I seriously thought that dad had been giving me a sign that I was coming into a healthy amount of money.
I looked at Vicky.  "What an absolute arse I am!" is about all I could say.  It only took a second more before we howled with laughter.
"This is granda's sense of humour," said Vicky.  "Maybe this is what he meant by the 24th all along."

Was it YOU dad?
...........................

The past 9 months will be etched in my memory forever.  As difficult as it was at times, each and every moment was precious.  The emptiness in my heart is indescribable.  I have shed so many tears and will continue to do so, but I know that I will carry on laughing too.  The memories of our daily life will never leave me.  The conversations (such as they were) will stay in my heart and keep me smiling.  I will never get over the fact that I wasn't with him in the end to hold his hand.  There are no words capable of comforting me on that one.  Not now.  Not ever.  But I cannot dwell.  My dad always thought the sun shone from my arse.  I will make sure it shines from every orifice in his honour.

You looked so peaceful Dad, laying sleeping wearing your Christmas jumper and dark blue chord trousers with socks to match and a sleeved vest under your jumper to keep you warm.  The undertaker stifled a giggle when he saw your Christmas hat.  I told him not to put it on your head...although it was tempting.  Remember when you came into the living room one cold morning and I sent you off to fetch your housecoat?  You were taking a long time about it and as I came to check on you, there you stood wearing the housecoat ....and the hat!  Our Christmas Day was THE best day we spent together.  I know you loved it too.  Just you and me with our feet up on the recliner watching...Columbo!

Holding onto his Christmas hat under one hand, I placed a photo of him and me in the other with a personal message written on the back.  I placed two packets of Walkers crisps by his side along with the first series of his precious Columbo.  By his head I placed a collage of photos that were memorable...him posing in his wheelchair in front of Blackpool Tower being one.  Vicky wrote a personal note and tucked it under his hand which lay over his Christmas hat.  My dad loved the cartoon Tom and Jerry.  When Vicky visited with the kids, that was the cartoon of choice for everyone to watch.  My dad would still be glued to the screen long after the kids got bored.  Vicky has fond memories of watching Tom and Jerry with him when she was a little girl, so she bought key rings of both characters.  She placed Tom key ring over his finger and has kept Jerry key ring for herself.

Dad's funeral is over.  I can still hardly believe those words as I write them.  It's time for me to plan my future once again.  I need to find a job and take better care of myself...which I have already started.  I am taking a month (at least) to come to terms with the past 9 months before I can consider starting a new job.  Losing my mother, Paul and my dad is about all I can deal with right now.
But life goes on.  It will be different.  But it will go on.

I love you so much dad.
I miss you every day.
Until we meet again...sleep well.

"Night night dad."

The final full stop.

    


   

    

  

Too late to say goodbye

When I began writing this blog, I imagined and hoped that I would still be writing it when my dad got his much wished for telegram from the Queen.

Sadly, after just a few weeks of being diagnosed with prostate cancer and the beginning of kidney failure, dad's health deteriorated.  No longer were we able to go on our daily visits to the coffee shop and sit a while as he passed remarks on anyone who passed by.  Even though he was overcome with tiredness, he still managed to make the odd quip or two.  A sense of humour never leaves you if you have one.  Thank God that's one trait I've gleaned from him.  I've a feeling I'm going to have to rely on it in the future.
...............................

The week beginning the 8th April, dad was beginning to be more unable to leave his bed.  Just a few days before, I'd managed to shower him for what would be the last time.  The effort for him was just too much and I knew that bed bathing was imminent.  He complained of dizziness many times and needed my arm to hold onto with one hand while holding his walking stick in the other.  He'd never needed to use his stick in the house before.  I began to let him sleep for as long as he wanted and encouraged him to eat and drink as often as possible.  Every morning he would need clean pyjamas as he began to sweat profusely.  As he sat on the edge of his bed holding onto a frame that was fitted to help him get in and out of it weeks ago, I ran a hot soapy cloth down his back.

"Oh that's lovely!" he said.

I rinsed off the soap with warm water and dried him off and continued to freshen him up.  He was still able to hold a facecloth in his hand and wash his own face.

Just a few days later he hadn't the energy to sit on the side of the bed and even less to hold onto the facecloth.

"Do you want to give your face a wash dad?" I asked, offering him the cloth.

"Just you do it hen," he said.

So I did.
"Are you worn out dad?" I asked.
"Aye," he replied.  "I am."

Lifting his legs back onto the bed, I laid a waterproof sheet underneath him and carried on with the bed bath.  He just let me get on with it and snuggled in to the duvet once I'd finished and closed his eyes to sleep.  As soon as he woke up I'd be there with a cup of tea which he started to enjoy more than the cold drinks I'd been trying to get him to swallow.  I'd sit with him on top of his bed while he drank his tea through a straw from a glass jar with a fitted lid.  Writing on the side of the jar read 'Eat, Drink and be Merry'.  He'd read this each time I gave him the tea and it made him smile.  He'd pick at some crisps that I'd put in a bowl for him.  We'd be joined by 'dug' who'd snuggle into dad's legs and roll over so that I could tickle her belly.

"She's enjoying that," dad would say.

I'd look back at dad a few minutes later and his eyes would be closed again.
..................................

Dad's Dementia had begun to accelerate.  His repetition of things was more regular.  He had also started to get out of his bed to go and do things like lock the front door.  This used to be something he did every night in the past but it stopped when I came to live with him.  After a few days of me being around he simply stopped checking the front and back door.  He just knew I'd already done the locking up.

On Sunday the 14th April, dad slept for the majority of the day.  I watched him on the monitor from the living room and would go and see to him when he stirred.  I offered him some crisps at one point.  He picked one up and put it in his mouth.

"Take them away hen," he said.  "I don't like them."

Things were definitely serious when his passion for his Walkers crisps had gone.

During that night he was very restless.  I watched him on the little screen as he picked up his watch and checked it over and over.  I watched again as he pulled himself up to sit on the edge of the bed.  I managed to reach him just as he was starting to bend down to reach his slippers.

"Where are you going dad?" I asked.

"I'm going to sort the door," he replied.

"The door is fine dad," I said.  "Let me get you back into bed."

I did try and explain (again) that his legs were too weak to bear his weight and to try not to get up without me being there to help him.  I decided that I wasn't going to sleep in the bed chair that night as it was quicker and easier to jump off the recliner and reach the bedroom if required.

I managed to sleep for perhaps an hour when I heard the noise from the monitor again.  This time it was feet shuffling across the laminate floor.  Dad had managed to get out of bed and put his slippers on without me waking.  When I reached the bedroom, there he was at the bottom of the bed holding on to the bed post and reaching for the door handle.  I guided him back to the side of the bed without saying too much as I didn't want to startle him and make him feel like I was concerned.  Once I got him back to the side of the bed I tried again to explain.

"I don't want you to fall dad," I said.  "I'll come through and see to you if you need me."

With that, I left him to settle back to sleep.

At 5 a.m. I heard dad puffing and blowing through the monitor.  I sat bolt upright and rubbed my eyes.  My feet were barely off the chair to reach him when I heard a guttural wail followed by an almighty crash.  I ran to the bedroom and switched on the light.  Dad was laying on the floor with his legs under the bed and his head and back up against mirrored sliding doors.  I don't know how the mirror didn't shatter.  I'm just grateful that it didn't.  Dad was groaning in pain.  I managed to sit him forward enough to secure a pillow at his back and head and called 999.

Choking back tears and trying not to show any fear in my voice, I asked him, "Where were you going dad?"

"I was coming to look for you," he said.  "I couldn't find you."

I've never been far away dad.  I was always watching you.  I just wish you knew.

Dad was taken to the Royal Infirmary in Edinburgh.  He had broken his hip in the fall.  The paramedics tried to lift him onto a chair initially which caused dad to faint.  This was frightening to watch as his eyes rolled back and all the colour drained from his face.  I'm still not sure as to why he was lifted onto his feet with a suspected hip break but under these circumstances you simply step back and let the medics do their job.  He was laid on the bed until he came around and was given an injection to relieve his pain before being stretchered out to the ambulance.  The hospital is an hour away from home and I was told to stay behind and catch my breath before heading in to be with dad who'd be going through some observations, blood tests and x-rays before being taken to a ward.  With so little sleep during the night I lay down on the settee to close my eyes.  I managed just over an hour before I got myself up and ready to go to the hospital.

I found dad in A&E where it was confirmed that his hip was broken.  The doctor came to speak to me and explained in detail that I can no longer recall as to why an operation would be necessary.  I didn't want him to have one.  I told the doctor that my dad was virtually bedridden before he'd arrived in hospital and that it had been determined previously that in the event of his deterioration or dehydration that he should be left untreated except for any pain relief that might be necessary and be kept comfortable and allowed to drift off in peace.  Without an operation, the pain from such a break would have been much too much for dad so I had no choice but to agree with the doctor and allowed them to go ahead.  The operation would take place the next morning and dad would be back on the ward to rest.

"I want him to come home," I told the doctor.  "I know the end is inevitable but I really don't want it to be in hospital."

I told him about my mother and my situation.  I stressed how upset I'd be if he couldn't be allowed home to have his final days.  The doctor agreed with me and said they'd do everything they could to ensure that my wishes were granted.

The operation was successful and dad was taken to the ward.  A meal planner was put in front of him to choose his meals.

"My dad is on palliative care and won't eat anything much, if at all," I said to one of the nurses.  "He won't be able to tell you what he wants if he wants anything."

"Who told you he was palliative care?" she asked.

"I'm telling YOU!" I said in disgust.

I explained that my dad wasn't in for a hip replacement but an operation to mend it from a fall.  I explained that he'd been failing leading up to his admission.  I explained that I cared for his every need and know my dad better than anyone.  While I realise the nurses have to be seen to be feeding their patients as anything other than that would be considered neglect, putting a bowl of soup in front of someone who is helpless and who can't communicate with any lucidity is just as neglectful...in my opinion.
Every different face I saw, I told them how much assistance he needed.  I would call in the morning to ask what kind of night he'd had and I'd be told he was 'fine' and that he'd had breakfast.  Sometimes he was even chatty.  When I visited the hospital, the men in the beds opposite who had gotten to know me in just a couple of visits would tell me different.  After being told that my dad had a settled night and was 'fine', I learned that he had been calling out for me...well, Anne that is.  But I knew in his head that it was my face he saw.  He was distressed and calling out and thought there was something under his bed and he wanted me there to fix it.

They didn't tell me you were frightened dad.  I didn't know.  I was always a phone call away.  Nobody listened dad.  Nobody ever bloody listens.

The day after his operation, I had another discussion with another nurse.  I wanted to know when he'd be coming home.  She told me that someone from Occupational Health wanted to speak to me to ensure that I had everything I needed at home to be able to look after dad in his bedridden state.  I told her that my dad was already bedridden before his arrival to hospital and that I had everything in place.  There was a concern that he needed more than one carer...same old, same old chestnut.

I just wanted you home dad.  I told them.  I just wanted you home.

That evening I got a telephone call from Occupational Health.  She was lovely and listened to everything I had to say.  I answered all of her questions as she asked me what my own understanding was of my dad's current health and situation.  I offloaded everything and ended by saying that I just wanted him to be left in peace and to get him home as quickly as possible so that he could sleep away in familiar surroundings.  I explained how my mother had died without me being there and having to leave my dad alone in the house in bed while I rushed to say my final goodbyes and tell her the things I needed to before she left this world.  Although I couldn't stay with her until the end, I got a little comfort in the hope that she heard me and knew that I would take care of my dad.  I told her not to worry.

I told her I'd never let you be alone dad.

The O.H. lady ended our conversation by saying that it wasn't often that she was met with such an understanding family member who grasped the situation without expecting the impossible.  She told me that she would get my dad ready for release on Thursday the 18th.  She recommended that I should seek extra assistance at home in the final days but she was more than satisfied that my care for dad was appropriate and didn't stand in the way of getting him back to me as soon as possible.  I told her I had phone numbers to call should anything happen that I couldn't deal with and that I'd be assisted quickly if necessary.  I wouldn't use anyone else unless I really couldn't cope...but I knew I could,  I knew I had...and I knew I would.

I was so relieved that night dad.  I couldn't wait to tell you that you were coming home.  I changed your bed and got your Columbo DVD's ready.  I went shopping the following morning and bought pink candles so that you could have soft lights instead of the hospital glare.  I ordered a white wicker basket chair to sit in the corner of the room so that I could spend the next few days and nights with you and watch you while you slept.  I put new curtains on the windows so that the light wouldn't bother your eyes.  I kept wiping your eyes for you dad.  They wouldn't weep so much in a softer light.  I had it all sorted...just waiting for you.

The following day (Wednesday) I arrived at the ward and as I walked towards my dad, the first thing I noticed was the size of his hand by his side.  His fingers were like sausages!  The urine in his catheter bag was dark brown.  He was no longer attached to drips or oxygen.  When I got closer to him I saw the back of his hand was ripped and very bruised.  His colour was yellowy and his breathing wasn't right.  I took pictures of my dad's hands and of him and sent them to my daughter, telling her my concerns.  She told me the questions to ask the nurses and that I should ask to see the doctor too.
"What's happened to his hands?" I asked the man in the bed across from dad.  "Has he been okay?"
"He started pulling at the cannula," he said.  "The bruise is probably where they were taking bloods."
"Today??" I asked.  "They were taking bloods today?"
The nurse arrived as she heard me having this conversation.
"My dad's hands are enormous," I told her, "and why were bloods being taken from him today?  If he isn't going to be treated what the hell are you looking for?"
She fetched the doctor who took me into a side room.  I told her that I'd had a long conversation with occupational health  and I'd left that conversation feeling relieved that we were all on the same page.  I asked about the bloods and the reason for sticking needles into a man who is dying.
"My dad is dying!" I stated.
"It is common practice to check the bloods after such an operation," came the reply.  "Even with palliative care, the patient can remain in this state for days, weeks or even months.  Your dad's observations are all showing perfectly well so there's nothing to suggest that he's failing right now.  The bloods showed that there was no massive bleed....thank goodness so he doesn't need a transfusion."
A fucking transfusion?  Are you kidding me??
"My understanding," I began, "was that my dad had the operation to ease his discomfort and anything else that transpired from that should be left alone.  He's coming home tomorrow and I do not want him to have any more needles in him.  I want him to be left alone.  I can't stress enough.  I'm no nurse but my observation is of someone who has days to live.  His swollen hands are a sign of heart and kidney failure at this point and also his urine is darker than the wooden chair you're sitting on.  I KNOW my dad's heart and blood pressure readings are good but look at his chest and how he is breathing.  Surely that's an observation to be considered too."

I couldn't stop banging on dad.  She bloody told me that I could put off having you home for a few days if I wanted because they weren't so concerned.  I said NO dad.  I....said....NO!  I wanted you home.  I wanted you warm and comfortable and safe...with me.

I went back to dad's side and his eyes were open but glazed.
"You're coming home tomorrow dad," I said.  "I've got your room all ready.  Your bed's all clean and I've got nice candles in your room."
"That's good," he said.

A few moments later he began to ramble.  He looked up at the ceiling and told me there was a man looking at him from a mirror.  Then he kept repeating the 24th.  Over and over, with a scowl on his face.  The 24th.
"I need to sort that money," he said.  "The 24th.....24th."
"Don't worry about that dad," I said.  "I'll sort it all out on the 24th."
I have absolutely no clue what he meant or if he meant anything at all.  But I'm keeping the 24th in my mind...and buying a lottery ticket!
He drifted off to sleep and I fixed his pillow before deciding to leave him in peace.  I told all of the nurses at the desk to give me a call at the first sign of any change in him because I was worried.  They assured me that I'd be called and not to worry.
But I did worry.  So that night I called at half past 10 to ask how he was.
"He's fine," said the cheery nurse.  "He's settled and doing fine."
I had a horrible feeling in my stomach.  I considered getting into the car and going back to the hospital.  But he was coming home the next morning so I decided to have a sleep and prepare for his arrival.

6.30 a.m. on Thursday 18th.
"Lorraine, it's bad news I'm afraid.  You're dad has just passed away."
I SCREAMED down the phone.
"I KNEW IT!!  I TOLD YOU YESTERDAY!  YOU TOLD ME HE WAS FUCKING FINE!!  WHY WASN'T I CALLED SOONER??  I TOLD HIM HE WAS COMING HOME.  YOU BLOODY SAT ME IN A ROOM AND CONVINCED ME I WAS WRONG!!  I'M SO ANGRY!"
She tried to console me.  But sorry couldn't cut it.  She told me that there was a nurse with him and that she'd just gone to give him some pain relief and he turned his head and simply stopped breathing. Just like that.
She told me that the nurse was very upset.
"I...don't....CARE!" I wailed.  "I wasn't there.  I wasn't with him and I'll never get over that.  Ever."

I'm sorry dad.  You were and always will be my world.  I should have been with you in the end.  Instead I let you fall.  I wish I'd stayed beside you when you got up from your bed for the second time that night.  I know you would have left me still but at least I would have been there to hold your hand and set you free in peace.  I will never forgive myself.  I didn't kiss you goodbye.  I thought I'd see you the next day.  You didn't hear me say I love you.  I know you knew I did though dad.  I will always know you knew.  But I should have kissed you goodbye.  My life will never be the same without you dad.  Part of me has gone with you.  I miss you.  I will always miss you...but you'll never be forgotten.  Ever. 

Making decisions

It's hard to know what to say about how life is surrounding my dad right now.  For the past 3 days he has remained in his bed and sleeps more hours than he is awake.  I do my best to offer him snacks and any kind of food that he will eat, mainly sandwiches with all the crusts cut off and cut into bite sizes.  The most he has been taking in a day is half a sandwich.  He still manages to eat his favourite crisps and because he is sitting in his bed, I put the crisps into a bowl so that he doesn't cover himself in crumbs. When he gets to the end of the bag he turns it upside down onto his hand.  Any remaining contents usually find their way onto his jumper.  He wonders why he is in good favour with 'dug' who creeps up beside him, licking her way up his jumper hoovering up the crumbs with her tongue!

I've taught him how to pick them up by licking his finger and chasing them around the bowl until they stick.  He looked at me wide eyed, showing me his sodden finger covered in crumbs and smiled.

"I've learned something new today!" he said.

That was a couple of days ago.  Yesterday he didn't finish his crisps and ate even less of a sandwich.  He managed to get up from his bed to let me take him to the toilet.  He struggled to steady himself but he held onto my arm as we walked the short distance from room to room.  Every time he questions me as to why he now needs help to go to the toilet and every time I give him the reasons in a manner that he'll understand without getting too technical.  It sounds terrible but I have to watch through the crack in the half open door so that I can see when he's about to stand up.  I always tell him to call on me before he does this and he'll say "Right, okay," but he never does.  I still ask, just to let him know that I'm right there.

One time I thought I'd have time to put a load of washing into the machine before he would need me.  I only took a few minutes and by the time I'd gone back to watch him through the door he was already standing and pulling at the net pants that he now wears.  He has no caution or awareness of the catheter tube and the pants can be easily caught on the connection.  Dad isn't gentle when it comes to doing things.  ANY thing.  My struggles when showering him would see us in a tussle over the shower head and the drying process meant aforethought to make things easier...for me!

The trick is to keep his hands occupied with something while you carry out whatever duty needs done with as much speed as there is care.

There have been no such tussles of fights lately.  All I can do is watch him from the living room on the little monitor while he sleeps and listen out for any change in his breathing.  I don't wake him up unless I see him stirring then I go and offer him a drink.  I keep blackcurrant and apple juice by his bed.  If he coughs during the night I go and make sure he takes a few sips.  He still isn't drinking nearly enough and his urine is very bloody.

I've sat at the bottom of his bed with 'dug' as he sits halfway up watching the TV.  I sit with my laptop and go between watching my own stuff and commenting on what dad is watching.  Mostly he is not paying attention and simply nods off to sleep again.  I sit until I no longer see the point and leave him to rest alone for the remainder of the night.  I'm not sleeping too well at all as I am afraid that I won't hear something that I should.

I am finding this time of his care the most difficult.  Mostly because I feel like I should be doing more or fear that I have missed something.  I'd do anything to be able to take him out in the car and go for our usual coffee and cake.  There's a strange realisation of so many simple things that won't ever be again.  He's still here...still breathing...and comfortable.

I'm still here...still breathing...

I've put an end to the Guardianship process.  Finally after months and months, a mental health nurse was due to visit around the 24th April.  I also had another visitor from the hospital.  I can't remember her title but she simply came to verify that there was just cause for dad's welfare and finances to be taken out of his hands and placed in mine.  Another appointment was due for dad and I to go and have an 'interview' with the GP but this isn't possible now.  I explained to his secretary about the circumstances and said that I doubt very much that my dad will be around for the conclusion of the Guardianship and to be honest, I'm not really sure what benefit it would be to me any more.  She totally understood.  I decided to call the solicitor to explain my decision.

This wasn't met with nearly as much compassion.  In fact, it was met with absolutely none at all.  She gave me a whole lot of legal jargon.  I said that I didn't think a piece of paper was going to make any difference to anything I'm doing for my dad any more.  All of the district nurses and doctors and any other individual who has had to visit in the last few months for whatever reason have given me no cause to worry that any decisions made on my dad's behalf would be questioned.  In fact, quite the opposite.  It is them who have been extremely grateful for my own personal understanding of dad's care which means they aren't dealing with a nut case of a daughter who can't see the reality of the situation and wants to question everything they put forward.  I am more than happy that when the time comes for me to need to ask for additional support that it will come without issue.

The solicitor said "I don't know what you're doing to pay the bills but if you're going into your dad's Bank Account without his consent then that's illegal."

How the fuck do you argue with that??

I told her that all of the bills (not that it's ANY of her bloody business) are in my dad's name and come out of an account where his care allowance goes into.  The monthly monies paid in are sufficient enough for the bills to be covered so I don't need to worry about that account at all.  When he's no longer here, what would that matter?  I'll have to start everything all over again anyway and close his accounts down.  The other thing she mentioned was his care and the decisions I might have to make later.

"Even though you seem to have everyone agreeing with you for now there might be something later that you're not able to decide for him," she went on.

I told her that ever since my mother died it's been nothing but appointments, solicitors, red tape and ticking boxes.  All of this has totally overridden the personal side of our lives.  Real emotions being trampled on by worry and stress.  It needs to end.

"I'll cross all my bridges one at a time," I said.  "I'm absolutely beyond the point of caring any more.  I'd like to be able to care for my dad from here until the end without any more paperwork."

"Well," she said, "if you discontinue now you won't be able to do it again without starting from the beginning."

HE WON'T BE HERE FOR THE END OF THIS ONE YOU DAFT COW!!

So that's where I'm at right now.  That...and waiting for the Gas Engineer to call so that we might have some heating and hot water before this day ends!  The shower isn't electric so I'm stuffed at the moment.  Dad's tucked up in his bed and snoring under his duvet.

This is the worst part.  The unknown and the days ahead.  I can only think one day at a time.

Sometimes the worst place you can be at is in your own head.

One day...it will all make sense.

Living his best life

It's been a funny old few days.  Filled with ups and downs and struggles old and new.  The weather has been playing funny buggars.  Just when you think the Spring has sprung, the snow shovel is being brought out of the shed to clear the paths.  I long for sunshine and blue skies as this brings out the best in everyone...including dad.

My dad looks the picture of health and not like someone who is suffering in any way at all.  He's had a couple of days and nights when he's been sick but with so little in his stomach...or whatever his stomach is made up of since it was removed almost 20 years ago...he wretches so badly and it hurts to watch him spew bile and foam.  He drinks from a cup with a fitted straw which makes it easier for him to pick up and put back onto the table by his side without spillage.  He still isn't drinking nearly enough but I encourage as much as I can without nagging.

I have abandoned the catheter night bag and keep him more comfortable with his day bag strapped onto his leg and hidden out of his reach, covered with his pyjama trousers.  He has finally gotten used to the fact that although he has a feeling that he needs to pee, he doesn't need to move from the chair in order to relieve himself...only now and again a little reminder is needed.  It sounds ridiculous when I hear myself asking him "Do you just need a pee dad or do you need to sit down?"

He looks at me with his best "WTF has it got to do with you?" expression until I explain about the catheter and how it works.  Then he'll sit back in his chair again, looking a bit more relaxed and still in wonderment at how he manages this task without wetting his trousers!

"It's like magic dad!" I offer.

I was only a few days into changing his bag to the nightly one which hangs outside of the bed with a much longer tube which extends to the floor when I realised this wasn't going to work.  I was constantly having to tell him to stop holding onto the tube which had to be fed through the front of his pyjama trousers.  No amount of explaining on the workings of this overnight lark was seeming to sink in.  My decision to abandon it came when I awoke with the noises of clattering and deep sighs coming from the monitor and when I looked at the screen all I could see was an empty pillow.  I ran to the bedroom to find him standing there with the catheter bag and holder in one hand and the end of the tube in the other.  How he managed to detach it without causing damage to himself I'll never know...and am not sure I want to.  The internal attachment hanging from his person dripping pee down his pyjama trousers and onto the floor.

"What are you doing?" came the No. 1 stupid question on the list of stupid questions to ask a person with Dementia.

"I'm too hot," he said.  "I'm trying to take this off!"

A typical nonsensical answer taken from the chapter on nonsensical replies to stupid questions in the book of stupid questions to ask a person with Dementia!

I could feel myself heating up internally and tried with all my calm to get him to sit back down on the bed.  Thank goodness I've got bed protectors in place which was one of my better aforethoughts when dad's care plan changed just days ago.  Never have I been so organised with anything in my life.  When it comes to pee, poo, vomit or any other unwanted leakage...I'm top of my game!!

I didn't bother to explain fully but tried in some way to make sense to him.  After giving him a little wash down and fitting a fresh day bag onto his leg, covering it with its protective sock and changing his pyjamas, I put a fresh protector onto the bed and cleaned up the floor then tucked him in again and left him to his slumber.  I never slept a wink for the remainder of the night.

"Did you have a good sleep?"  I asked him the following morning.

"That's one thing I don't have any trouble with," he said proudly.  "Sleeping."

"Me neither," I lied while looking at him through eyes that resembled two piss holes in the snow.

I've tried to feed dad hot foods like soups, pasta, eggs, beans and even toasties.  Any time I've set these things out I've noticed that he'll take only one bite or two if I'm lucky before he pushes the plate aside saying that he's not hungry or he doesn't like the offering.  These are all things that he would have polished off a plate only weeks ago...probably months now.  Time is not real these days.  I get confused myself as to what day it is and don't bother to ask me the date.  I have no clue.  The day begins when it's light and ends when it's dark.  That's all I need to care about right now.

I feed my dad whatever he will eat and if he doesn't finish whatever it is, I have to accept it and not make a fuss.  Crisps, snacks, little rice puddings and jaffa cakes seem to be the most popular.  I still make him a sandwich or a brioche roll with honey roast ham and a little salad cream and cut into small pieces.  I only put 4 squares onto a plate.  If I fill the plate with all of the sandwich he will look at it and already decide it's too much.  Offering smaller and smaller portions means he may or may not eat a little more.  The past few days have been pretty good.  The table beside his recliner is littered with a choice of mini platters and he helps himself to what is there when he wants it.  I don't feed myself properly until he has gone to bed for the night as I can't sit and stuff my face in front of him.  The trouble is, I'm stuffing it with everything and anything once he's settled.  I am not able to take much control over this right now but I am fully aware of my feelings and how all of this is affecting me physically.  In one sense I'm glad that my mother isn't around to continuously point out the change in my appearance.  Although it's not pleasing me to be expanding, I'm not entirely unhappy either.  I am not putting pressure on myself at this time and when I have a clearer view of my own future, only then I will take the time to regain my self esteem and move forward without looking back.

Today is not that day.

It was Mother's Day last Sunday.  The sun was shining and it was a glorious day.  Dad was in fine spirits and eager to get outside.  He sleeps an awful lot these days.  He can be up in the morning by 10 a.m. and back in bed before 12 p.m. and not get up again until 3 or 4 p.m.  He's back in bed by 7 or 8 p.m. and that is him for the entire night.  There was one day when he just stayed in pyjamas as all he seemed to want to do was be in bed.  Poppy and I joined him, sitting at the bottom of the bed while he slept.  He likes the company.  He has only been like this a couple of times and I know that he won't be leaving his bed at all soon enough.  I still encourage him to move whenever he can but his pace is slower and is his gait resembles that of a Parkinson's sufferer.  My daughter and I are convinced that he has some form of this too although it's never been diagnosed and it makes no difference now anyway.  It is what it is and however dad gets around and however I'm able to help him I will.  That's all that matters.

With the help of a friend, I was able to take dad out for a browse around a garden centre.  It's the first time we've been out for ages and it felt great.  We were only out for an hour or so before heading home so dad could go back to bed but it was enough time to purchase some pretty bedding plants and decorative bits and pieces for the garden.  My mother loved the garden and kept it filled with bushes that only needed cut back in the Spring.  However, as small as the garden is it had turned into a bit of a jungle.  I tidied up the little memorial garden that I created for her.  I bought a rose bush and planted it for Mother's Day.  I added some lights and decorative bits and pieces to cheer it up a bit.

The rest of the garden was tackled by my friend who took instruction on what to get rid of and what to keep.  The garden is now jungle free and quite bare apart from the odd bush that I have kept and will wait until Spring to see how they grow and flower before I decide a further cull is required.  I've created a more fairytale garden to suit my own personality and await the delivery of decorative stepping stones which I cannot wait to place and bring more character to this new home of mine.  The more of my own stamp I am able put on this house and its surroundings the more I feel I belong...and I need that sense of belonging before I feel truly settled.  

My dad awoke from his slumber and was thrilled with new space created in the back garden.  My intention is to get a wooden bench which I will paint...pink!

Until then, I settled him down on a folding garden chair and covered him in a blanket.  With a bag of crisps and a cup of tea.  He was in his glory...even with a begging 'dug' pestering his leg!

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

Every day is a new day and unknown.  The first challenge dictates the mood and how the remainder of the day should be decided.  Proceed with caution is my new mantra.

Dad's balance is ever changing...as is his reaction to my insistence on attending to his needs.  Although he isn't aggressive, he can be quite 'nippy'.  Toileting is a new area of grievance for him.  His last bit of dignity stolen.  I try to keep things lighthearted and not a big deal for him, but I am in  regular fights with his hands as I try to sort pads, mesh pants and trousers without him bending over and trying to grab his clothes from my grasp.  I chastise him like a child sometimes.  At the same time I'm trying to explain my reasons for keeping him upright while I beg for his trust in me.  He doesn't realise his resistance causes me so many aches and pains physically.  Mentally...I could scream.  But I still manage to make some kind of joke or give him a comforting word before I tell him "Wash your hands dad."

Then I disappear to dispose of the sanitary rubbish expelling a blast of air from my mouth which I've held in.  Usually followed by FUUUUUUCK in a silent loud whisper.

In the wise words of Doris...que sera sera.

Today is a 'good' day.  This dad of mine is in no rush to take the last bus home.  I'm in no rush to buy his ticket...aches and pains or not.

"Do I run?   Yes....out of patience, fucks and money!"

Every precious day

We had a visitor this week, although dad's still trying to figure out who it was.  😆  It didn't really matter what her name is as his wee face lit up like a thousand candles when she walked into the room.  I got a reprieve from being the 'wife' for a weekend.  I was relegated to 'niece' somehow, until I returned from a quick trip to the supermarket one day when Vicky and her grandad were sitting on the recliner watching through the window as I walked down the path to the front door.

"Who's that?" Vicky asked him.

"It's my daughter," dad said.  WHAT??

"Do you remember her name?" Vicky went on.

Of all the names to come up with dear dead to me sister, it was YOURS.  But that's all you are...just a name with no conscience.

"No," said Vicky.  "Try again."

"Lorraine," came the reply...eventually.

"I nearly forgot your name," dad announced as I walked in the door.  Vicky was relaying their conversation without going into details that didn't deserve a visit.  We just looked at each other knowingly while dad sat as proud as punch at his recollection of our relationship.  If I can be his daughter for all of 5 minutes in any one day then I'll take it.

Vicky's visit was fleeting but most welcome.  I was able to unleash my shackles and leave the building to go and catch up with Jackie (Paul's mum) and have coffee and healthy sandwiches with a little scone on the side.  No wait....we put them back on the shelf when we spotted a huge slab of carrot cake and decided that the sweetness and the extra calories would suit our purpose most that day.  Our conversation on putting the world to rights was peppered with the occasional comment 

"Oh, that's awfy gid!"  Translate:  Oh that's awfully good!

referring to the gobfulls of carrot cake which went down without touching the sides.  A rare but most welcome treat.  The carrot cake...and Jackie.  💓

Those few hours flew by.  I took a little extra time to wander around Matalan before heading home.  I picked up some cheap and cheerful tops and a pair of jeans that will cover my ever growing arse and helping me to feel a bit more comfortable in my tired body.

To touch on that note briefly, I have received so so many messages of support from people who share my life story in their own way and also those who predict their own future to be similar one day.  Those messages are as much a comfort to me as my blog gives comfort to others.

This past year has been a tough one for sure.  I feel I haven't grieved properly.  Life has gone on with business as usual, mainly due to suppressing feelings around my dad and making sure his world isn't touched by anything that could destroy his soul.

I find myself having nothing but empathy for those who seek comfort in food.  It's easy for others to sit in judgement and offer options to pass the time in a more constructive way instead of larding it up on the sofa with Netflix on a loop.  I could call a hundred people on the phone and talk things through.  I have no shortage of friends who offer that outlet for me and I am and always will be forever grateful to know that they are there.

But when it comes down to it, I have to work some things out in my head and shut the world out.  If that means over indulgence of a sweeter kind then I'll work that out one day too.  I know I can...and I know I will.  The size of my arse isn't going to determine who I am or what my purpose in life is.  I'm still the same 'me' inside with just a little more on my plate (pardon the pun) to deal with than I'd prefer.  But know that I'm dealing with it in the best way I can...right now...in this moment.

So...to the person who sent me a message on Dementia, Dad and Me Facebook page to inform me that "you've gotten so big", I say all of the above and would like to add...the day when my arse outgrows my resilience, compassion and sense of humour is the day I'll start to worry.

This is ME!

Moving on...

Although the news of my dad's health was not good last week, he isn't quite bedridden yet.  He is not eating much at all although he has bursts where he will eat all four quarters of a sandwich and not just one.  I know it's a bad day when he folds over a packet of crisps leaving half of them still uneaten and places the packet on the table beside him.  Getting him to drink is an onward struggle although he also has bursts of thirst too.  I don't make him stand in the shower every day and I have changed my set up for this too making things a little less challenging...for both of us.

Dad has gotten used to having a catheter a lot quicker than I'd expected although he still questions why I need to help him in the toilet when he needs to sit down...which isn't often.  This is also a worry to me but unless dad shows discomfort there isn't a whole lot I can do.

Every night as I get him ready, he tries to assist me which always ends up with me like a contortionist as I 'fight' with his hands to keep them out of my way.  He bends over me so much when I'm already crouched and I'm scared one day that I'm going to head butt his chin on the way up.

"Stand up tall dad!" I repeat with a concentrated calm.

In my head it plays out as GET OUT OF MY WAY FOR FK SAKE!!

I retreat to the recliner once my final (maybe) duty is done and throw myself down like an old sack of spuds.  Netflix...tick!  Maltesers...tick!  Don't give a fck...double tick!!

The newly purchased baby monitor with little screen is an absolute bonus and I'd recommend it to anyone who is living in similar conditions to myself.  However, it should be noted that it isn't just the sounds of slumber that are picked up on the monitor.  Every now and again I am treated to a version of Colonel Bogey reverberating from dad's arse!

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

The days are passing and time means nothing.  It's like Groundhog Day until something out of the ordinary happens and the routine is mildly interrupted.  My dad is having good days and bad.  I'm just having days I feel.  I keep thinking of my own mortality and all of the things I still want to do in this life....and all the things I don't.

When Vicky visited, dad was having his best days.  I put that down to the company of his granddaughter more than anything else.  Vicky was here while the nurse from SALT (speech and language therapy) visited dad to check on his swallow reflex.  This all took place while I was testing mine on the carrot cake with Jackie.  Dad was asleep in his bed when the nurse arrived.  Vicky woke him gently telling him that there was a lady here to see him.

"Is she beautiful?" dad asked.  "It's been a while since I've had a woman!"

😂😂😂

  It turns out that dad's swallow is in perfect order but he has reflux which can be helped with medication.  I await this prescription so that he might not cough and splutter as much when he eats or sleeps or more often now while he simply sits.  It isn't pleasant for him and I see his struggle...except for the daily workout he gives his jaw, treating me to ear piercing crunches as he wades through his Walkers crisps.  Even if it is just half a bag.

I was running out of my own pills and ordered online thinking that they'd be delivered along with my dad's prescription last Friday.  The pharmacy called to tell me that one of the items for my dad wouldn't be available until Monday and asked if they could wait until then to deliver all.  I said this would be fine, thinking that a weekend without my own pills wouldn't make much difference.

Once I brought myself down from the ceiling on Monday, I called the pharmacy to ask if my own prescription would be delivered that day along with dad's.  I was told that I'd need to go to the pharmacy to fill in a form to see if I qualify for having medications delivered to my door.

"Can't you just pop it in the bag with my dad's?  It's being delivered here today anyway," I said.

"No, it's our policy that the person requiring the medication needs to fill in the form," she said.

"Well can you send the form out for me to fill in?"  I asked.

"No," she said.  "It's our requirement that you come in to the surgery to fill it in."

"But if I'm not able to come and collect my prescription, how can I get there to fill in a form?"  I asked.  "I am full time caring for my dad.  I've now been 3 days without my prescription"  I tried to suppress the angst in my tone.

Wait for it....

"Your're not the one who is housebound.  You need to fill in the form," she continued.

"Well it looks like I will be off my medication then.  That's no help to me at all."  With that parting shot...I hung up the phone and retreated to the bedroom to release the frustrated tears before heading back to the living room.

"Cup of tea dad?"  I asked.

"I wouldn't mind hen," dad answered.

The next day after venting to Vicky, muddling my words and trying not to sound manic and betrayed (OTT I know...but stick with me...)

she took up the reigns and phoned the pharmacy.  After having virtually the same conversation as I'd had she threw in her 'nurse card' and explained to them in a manner which I couldn't about the reason for the medication and the effects quick withdrawal can have.  Also asking for a more reasonable explanation apart from having to fill in a form in person in the surgery while I AM housebound via my dad...what other option could they offer before I took the information back to my GP who prescribed this drug which keeps my head from disappearing up my arse most days.  Well...I might have added that bit at the end on myself but you get the picture.

My medication was hand delivered within the next few hours by the pharmacist herself as "a goodwill gesture".

Seriously...go save a third world country or something.

When she arrived at the door she said, "Prescription for Ms. Duffy?"

"Yes," I replied.

"What's your address?" she asked.

Your standing at my front door love.  I'm the one INSIDE the fkn address!

I managed to answer without the sarcasm and off she went.  4 days without my own medication and let me tell you...it hurts.  For me this is a welcome quick fix which I absolutely know takes the edge off anxiety and stress.  One day I won't need it at all as I'll have all my ducks in a row.  Right now my ducks are all scattered having a party of their own.  But I know this isn't how it's always going to be.  I know.

Living my best life the only way I know how...doughnuts included!

Taking the last journey home.

It's been almost two weeks since I last updated the Blog, but it has been fairly obvious that I've had some concerns over the past weeks.  The excessive tiredness my dad has had and the daily struggle to get him to eat without turning his nose up at almost everything set down for him.

I finally snapped after he had a fall right outside our front door a week past Wednesday, just after I'd picked him up from the Day Centre.  I was making such a big noise on Facebook just the day before about how excited I was to have just a few hours to myself.  Now I was standing right behind him holding a shopping bag in each hand...never a good idea and wish now I hadn't taken the chance.  But knowing what I know now wouldn't have made any difference whether I'd have had a hand free or not.  To be honest, if it wasn't for that fall I may not have acted on his change in behaviour as quickly as I did.  

He missed his step onto the pavement and began to fall backwards.  I dropped both bags to the ground and reached out my hands to grab his jacket which was made impossible due to it's slippery material.  I tried to hold onto his arm, but somehow my dad began to turn his head around to the right which resulted in weakening his balance and down he went onto his left buttock, 

his head falling backwards onto the concrete pavement.  Luckily his cap slid down the back of his head and cushioned the blow.  There were no bumps or cuts but my dad was visibly shaken.  I got behind him and sat him up allowing his back to rest on the front of my body.  Instructing him to bend his knees and keep his feet together on the road, I managed to lever him up by grabbing onto the sides of his trousers.

"UP we go!"

Moving and Handling course tutors would be so proud of me now....NOT!  But this is real life folks.  I did the best I could in the moment.  I could have hurt myself...I didn't.  I could have hurt my dad...I didn't.  He managed to totter to the front door holding onto my arm and using his walking stick.  In my expert opinion as his daughter and Carer my assessment of the situation was that he hadn't broken his arse!  

 My dad always goes to his bed for a couple of hours when returning from the Day Centre.  I decided to allow him to do this after double checking his head, but when he woke up after a couple of hours I decided to take him to A&E just to be sure.  We sat waiting for 2 hours before a nurse took his details and wrote down the reasons why we were there.  She was very lovely towards my dad and asked him if he was very handsome in his younger days.  "A bit like Tony Curtis," I offered.

"You must have had all the ladies running after you John," she said, smiling.

With a look of disapproval, dad said, "Oh no.  There's only one woman for me."  He glanced towards me.

"Who would that be then John?" the nurse asked.

"My wife!" he said, nodding his head towards me.

"What's my name?" I asked him.

"Mrs Duffy.  Anne," he smiled.

I explained to the nurse that this is how things are 99.9% of the time.  Neither of us felt the need to correct him, so back to the waiting room dad and I went.  As we sat for a further hour, so many people came and went.  The nurses were very busy.

"Nobody's been seen since we came in," dad said.

"They have dad," I told him.  "It's just so busy that there's never an empty seat."

We sat for a few minutes.

"Nobody's been seen since we came in," dad said.

"Yes they have dad," I said...again.  "It's just very busy."

We sat a few minutes more.

"Nobody's been seen since we came in," dad said.

"I know," I said.

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

We got back from the hospital four hours later.  Dad's blood pressure and heart were fine and his blood results showed no more than what we already knew about his anaemic state.  He's on iron tablets for that, so no concern was shown about him.  The only thing that couldn't be checked that night was his urine because he couldn't squeeze a drop even after sitting all of that time.  It didn't seem to matter, but it struck me that dad's toilet habits have been going through a change lately too.  He's never had a problem with his 'flow' shall we say.  He has always drank plenty and made several trips to the toilet during the night in the past, although a little miracle pill reduced those visits to two at most which allowed me to have a most welcome uninterrupted sleep.  I didn't dwell too much on the pee thing.  But as the days progressed, this would turn out to be the one thing that concerned me the most.

After the hospital, dad ate a good sized sandwich and a little snack before going off to bed for the night.

24 hours later, dad was wretching and finally being "sick" he told me, but it was all foam.  He had several bouts of diarrhea which isn't so unusual given that he has Diverticulitis and has occasional spells of discomfort.  But given that he'd had the fall the day before, I called the doctor to visit us at home.  Dad's blood pressure was a little high so another pill was prescribed to take care of that.  It was decided that dad could be suffering mild concussion.  I took the opportunity to mention that I'd noticed irregularity in dad's water works and that he'd been unable to give a sample the night before.  I also mentioned that despite the diarrhea that he still hadn't peed.  The doctor asked me to wait another 24 hours and that I should call him the following day to update him and only then would he decide if there should be anything further to be done.  He asked me to try and get a urine sample from dad the following morning and hand it in to the surgery.  I finally managed this but not without a tremendous effort from my dad.  I was still worried.  I called the doctor again.  Getting past the receptionist was another challenge.  But she finally agreed to pass my number onto the doctor who'd visited the night before and thankfully later that day he called me back.

He had already decided to send in the REACT squad who are a team of nurses who provide the same care as a hospital provides for the elderly except that it's done at home.  The following day, two nurses came to give dad a full assessment which included observations, cognitive test with regard to his Dementia, more blood samples and all the urine he could extract.

When it came to the cognitive test, the nurse turned and pointed to me.

"Who is this person who looks after you?" she asked my dad.

"Lorraine," he said.  "That's my daughter.  There she is standing right there," he said confidently pointing to me...and smiling.

WHAAAAT THE ACTUAL FUUUUUUUUUUUUUUUCK!

Out of all the questions dad was asked, this was the ONLY question he got right!

I didn't know whether to laugh or cry...but laughed in the moment, ultimately weeping later.

I had already spoken to my daughter Vicky who is a nurse in Maidstone General about dad's lethargy and waterworks.  Dad's sudden weight loss was becoming more obvious and a little distended belly was clearly visible to me.  He had to be retaining water and this was worrisome.

Later that day, some of the blood results had come back.  The nurse called me to tell me that dad's kidneys were showing signs of deterioration and that some of his medication had to be stopped immediately.  She also informed me that another nurse would visit us in the morning to take a bladder scan from dad and to also let me know the rest of the blood results.

"Has your dad ever had his prostate checked?" she asked.

"Not that I'm aware," I answered.  Alarm bells!  

As well as finally getting all the medical stuff in order, she informed me that occupational health were going to call in and provide us with a raised toilet seat for my dad and also a rail for his bed so that he could pull himself up a lot easier and my arms could remain in their sockets from now on as I step away from being his personal pulley!

I was pretty excited knowing that there was a team of nurses who would be on call in the future for any further 'treatment' dad needed.  This, I thought, was going to save me from taking him back and forth to the doctor's surgery which tired dad out so much even though it's a short journey in the car and a short but slow walk into the surgery itself.

My excitement wasn't to last long.

The following morning (I've lost track of what day we're on now....things just got busy is all I remember) another nurse arrived with a bladder scan.  Before she took the scan, she spoke with me out of dad's earshot to tell me that his PSA levels were showing to be pretty high.  Although it was likely that cancer was present, the information had to be presented to another medical team who would decide the next best thing to do.  I confirmed my understanding of the situation and led her to my dad so she could scan his bladder.  Just as suspected, dad's bladder was pretty full. The nurse left and returned within a couple of hours with another nurse to assist in catheterising my dad.  It wasn't a pleasant spectacle as it took a little longer than it should have due to quite a bit of resistance of the tube being inserted.  Both nurses looked at each other before turning to me.

"This is also a telling sign that there is a blockage," one said.

  The pain for my dad was obvious as he cried out towards the end as it finally reached it's destination.   Although a catheter can bring it's own problems, I am more relieved at the fact it will stop dad from walking back and forth in his unsteady manner to and from the toilet.

As soon as the nurses left, dad kept saying over and over that he needed to go for a pee.

"You don't need to move dad," I repeated constantly.  "It all goes into a bag now."

I had to relent a couple of times and take him to sit down on the toilet and reassure him...but also to assure me too that the other end wasn't in need of relief.

I finally managed to get him to settle and was glad when he wanted to go to bed ridiculously early.  Although I explained what I was doing when I changed his daytime catheter bag to a night bag, I knew he wasn't really understanding.  I found myself constantly repeating myself as I tried to stop him from pulling at the tubing.  Even though I slept that night with one eye open, my ears failed me as I didn't hear him going into the toilet...but I heard him trying to get out!

I had remained on the couch that night.  I flew off it when I heard something hitting off the bathroom door.  Thankfully it wasn't my dad, but it was him trying to manoeuvre himself with the night bag in one hand and his pyjama trouser leg in the other.  I don't know how he managed to get as far as he did without tripping but I can't afford "what ifs" at this stage.  I don't want to be on heart medication any time soon!

The frightened look on his face and his wavering voice still haunts me.  I've no idea what he must have thought when he reached the toilet.  I was just glad to get him back into his bed and settle him down again with as much reassurance as I could.  I stayed awake for most of what was left of the night.

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

The next day when the nurse returned, dad's test results were confirmed.  His kidneys aren't quite going into failure yet but they are definitely en route.  Given dad's age and stage, it has been decided not to take any further tests to confirm what they already know which is that he without a doubt has prostate cancer.  Knowing the figures and facts surrounding PSA levels means nothing to me and I don't want to be that person who throws around medical jargon not knowing WTF I'm talking about.  The only fact that matters to me is how everything should be handled around my dad.  That is one thing that I and only I can claim to have any expertise.

Although over the course of the past few days and all of the much welcome medical intervention from all concerned, I don't think the reality of the moment struck home until the REACT nurse told me to stop dad's medication with the exception of two vitamins and that the team would now be withdrawing their services and handing dad's medical care back to his GP.  As for his eating and drinking, it's now all about quality and not quantity although I encourage him all day long to drink as much fluids as possible.  But I can't hold him down and force him.  I was so proud to have brought his waistline up a couple of sizes since taking over his care 8 months ago only to now be saddened by his rapid weight loss which sees his newest trousers neatly folded and put away forever in a drawer.  He is fast making his way back to the wee trousers he was wearing before I filled him with sausage casseroles and fish fingers, chips and beans.

Today so far he has eaten a tiny sandwich over a period of an hour, a small banana chopped up in a bowl and some jelly.  By the end of the night he may have finished 400 mls of fluid...if he's lucky.

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

As well as all of the above I've had lengthy conversations about my dad's continued care with the nurses.  Would I wish him to go to hospital as things progress?  Would HE wish to be in hospital if he had any notion of what was happening?  Would I consider having extra help in the shape of carers coming in to do anything that I'm already doing?  Do I understand that looking after myself is just as important?  What use would I be to anyone if I fell ill.

I GET IT....I KNOW!

Thank you.  I'm sorry.  But no thank you.  I don't want my dad to get any inclination of what's happening and luckily Dementia allows him to forget that there's been any medical visitors at all.  As far as he's concerned, the new set up is all down to me.  He has totally relaxed into the fact he has a catheter and makes no protest as I take care of it.  Anyone visiting him would never know as he looks just the same as he always has.  He just has a wee secret tucked up his trouser leg!

I don't want my dad to be unnerved by people in uniform visiting with gizmos and gadgets, prodding and pricking him and asking him questions that he can barely answer.  It's all about his comfort and quality of the remaining life he has.  There will be no intervention when things progress, but he isn't bedridden yet.  I am already looking at portable TV's with a DVD player included so that he can still enjoy his Columbo on a loop when he can no longer make it to the recliner.  

If the man can't get to Columbo then Columbo must go to the man!

As soon as dad's diagnosis was confirmed I paid a visit to Amazon and relied on it's next day delivery service which didn't let me down.  I can now keep an eye on dad day and night when he is in his bed courtesy of a fabulous baby monitor with a wee screen.  I also got a night catheter bag holder which hangs on the side of his bed which can be hidden with the duvet so any visitors don't need to see the contents of his tiny bladder.  I put an electric blanket on his bed which delights him as his feet are always cold at night.  I will be supplied with incontinence pads and catheter bags but all of the incidentals are down to me....or dad I should say.  Much of his pension this week has filled a drawer with gloves, nappy sacks for catheter disposal, bed protectors and anything else I could think of to make life easier...for both of us.

Last night as I got dad ready for bed, he watched patiently as I went about my business.  Making sure he was comfortable and pulling the duvet up around his neck I told him I'd be keeping an eye on him in the other room.

"I don't know what I'd do without you hen," he said.

"I don't know either dad," I said...taken aback and trying to prevent a tear from forming and falling out of my control.  "You'll never have to though."

"Good!" he said.

With that, I kissed him goodnight and left the room before he noticed my runny nose and that damn tear followed by a few more.

So this is it.  Already.  The last leg of our journey.  We mightn't have been able to make all of the little trips away and have the adventures I'd planned in my head after my mother died but at least I can plan his final trip with all the comfort and ease that he deserves.

Sunshine and rainbows dad.  That's what I'm giving you. 💖

"I don't think you're dad will be long after me."

That's what you said when you left Mother...and you were right.  

He thought he'd be here long enough to get a telegram from the Queen.  

I thought I'd save him from your nagging for a few more years!

JUST KIDDING!!

I'm so sorry I couldn't send you on your way with the same dignity that I can give Dad, but I hope your understanding of the situation is a lot clearer from where you are now than from where you were then.

One day you'll be together again Mother...but not yet.

Not yet.

     

When two worlds collide

For the past few days, there has been a change on Planet Dad.  I've thought that something might be wrong then dismissed it.  Repeating myself a little more than normal but not making issue of it.  But when I think that things are just as they always were, I remind myself that I'm living and breathing the world of Dementia.  Even though every day is like groundhog day, there's no room for complacency.  Dad definitely makes sure of that.

For months now he has been in a nice routine.  Medication has kept him asleep for longer during the night with very few trips to the toilet in the night.  I've been boasting at how I've had unbroken sleep for weeks.

The honeymoon period is over!

Dad is now using incontinence pads although he is still independent of using the toilet.  After finding a pad hanging over the hot towel rail one afternoon I now need to check the bathroom after his every visit.  I usually only do this when he goes in there and forgets to come out again, alerting me that something isn't quite right.  I've taken to standing at the door sometimes when I know he's only going to pee and calling from the door, "Are you alright dad?"  Which usually results in his response "Aye.  I'm just comin' oot."

"Don't forget to put your pad back on again," I say.

"Aye okay," he'll reply, satisfying me with his answer...until one night...

He's been unusually tired over a short period.  I noticed it before I went off to visit my daughter in Maidstone but since I returned home I've realised that this isn't a one-off.  He always gets up by 10.30 a.m. at the latest and returns to lay on his bed in the afternoon for a couple of hours rest, finally going down for the night between 9 p.m. and 10 p.m.

All of a sudden he has been going for two naps during the day and retiring for the night as early as 8 p.m.  These days can be very long for me.  I've come to realise that I'd much rather have his company than sit around the house with not an awful lot I can do while he sleeps.  I can't go out.  So I binge watch Netflix and depress myself with Crime Series.  Lately I've taken to watching clips of comedian Micky Flanagan on You.Tube and found myself laughing out loud.  I've decided that Micky Flanagan has been my saviour during this past week for sure.  A daily serving of laughter is welcome...and it's free.  No prescription required.

Dad emerged from the bathroom last night and announced that he wanted to go to bed.  It wasn't quite 8 p.m. but I didn't talk him out of it.  I simply led him to his bedroom and asked him to sit on the edge of the bed while I got his pyjamas ready.  When I've been helping him to remove his underpants lately, I've also grasped the top of his pad at the back and pulled downwards as he takes care of the front.  I have to stand by his side with one hand placed at the top front of his shoulder while the other hand deals with the pants.  This is to help him maintain balance as he stoops very far forward as he drops his head to try and see what he is doing.

With pants and pad in my grasp, I pulled downwards a little too far before I noticed that he'd put his pad on back to front which meant that the plastic non absorbent side was against his skin.  This had become quite sticky with the heat from his body so when I removed them the pad pulled at his bum cheeks.

"Ooyah!" dad yelped.

"You've got your pad on back to front dad," I said.

Noticing a wee furled brow appear I quickly went on, "Be grateful I noticed before I pulled it right down otherwise you'd be singing soprano!"

This made him laugh...thank god.  I tentatively removed the pad and got him ready for bed.  He slept right through until 10 a.m. this morning.  In just a few nights I've watched the entire 5 series of Scott & Bailey either curled up on the recliner with 'dug' or on my chair bed...also with 'dug'.

So now I have added 'check dad's pad' after every visit he makes to the toilet to my ever growing list.  Although I'm happy to say that all of the pads thus far have been clean, I should mention that perhaps the fact he wipes his arse on the hand towel contributes to this.  FUUUUUUUUUCK!

Should you ever visit my house....bring your own hand towel.  I no longer provide them in the bathroom.

I used to dry myself with a towel and hang it up again and use the same one the next day trying to avoid too much laundry.  Nowadays every single towel no matter the size is used once and thrown into the basket.  I have always done this with with my dad's towels anyway because I use a couple every time he showers and a lot of the time I wipe water off the floor or the sides of the shower with one or the other.  He blows his nose when he dries his face.  I can't be sure he doesn't do this when I'm not there to see.  So towels in our house are quite frankly over washed.

I'm thinking about installing a sheep dip and dragging him through it every day as a final precaution!

I've gone through a lot of feeding tantrums with dad lately.  This is another thing that seems to be happening more and more.  After feeding him with toasties on flatbreads over some days, dad has enjoyed every bite.  Noting them as a hit I've fed him these regularly to ensure that he's having something that is decent and warm at least instead of keeping Walkers in business with his copious crisp consumption.  Then all of a sudden...out of the blue.... "I don't like that!"

"Oh really?"  I say.  "You've been eating them for days dad."

"Have I?" he asks, looking confused.

I give up.

Just so you know...he ate an entire cheese and pickle toastie tonight with a mug of tea followed by a small carton of rice pudding.

Tomorrow all of the above might be off the menu...and you'll find me by the wine rack!

A couple of nights ago, I woke up with a fright as dad entered the living room at 1 a.m.  There he was in the dark making his way across the floor to the recliner.  He thought it was time to get up even though there was no light coming through the window blinds.

"It's the middle of the night dad," I said as I steered him back towards his bed.

"I haven't slept yet," he stated.

But he very much had.  I don't know what he was thinking and at that time of night I hadn't the steam left to analyse it.  He lay down and I never saw him again until 10.30 a.m.

"Did you have a good sleep?" I asked.

"Aye," he said.  "I always have a good sleep."  Please don't ask ME dad.  I hate lying!

"What about you?" he enquired.

"Aye...me too," I answered without giving him eye contact.  I think as a prevention of going to Hell this method works.  I'm getting embalmed with asbestos just as a precaution.

Earlier today I sat with dad while reruns of Classic Coronation Street played on TV.  One of the male characters asked a female character if she regretted getting a divorce to which she replied 'no'.  The episode ended there.  I commented to dad that the male character was heading home to ask his wife for a divorce.  "She'll no be happy," I said.

"What if she won't give him one?" he asked.

"I don't think she'd have much choice," I said.

Turning and looking directly at me he said, "Don't you be getting any ideas!"

I decided to laugh and forget about my comment than to remind him that I'm not Mrs. Duffy.  Not today at least.  I'm sure it will come up again...and again....

...and....again.

He went off for a second 'snooze' this afternoon at around 3.30p.m.  I always lead him to his bed and don't leave him until I see he is laying on top of it, telling him I'll see him soon and have a cup of tea waiting.  After a couple of hours he came back to the living room dressed in his pyjamas and housecoat.

The question was out of my mouth before I could stop myself.  "Why have you got your pyjamas on dad?" I asked.  Nice one Lorraine!  😕

"I thought it was time to get up," he said.

He'd only just put them on so his statement made no sense at all.

Shut the f*ck up Lorraine and act normal.

His pattern of events is off kilter and he can't distinguish between night and day.  While he's expecting a plate of cereal I'm feeding him Stovies.

"It's dinner time dad," I inform him.

He thought it was  quarter to 6 in the morning.  I'm hoping he'll stay awake until 9 p.m. at least and sleep throughout the night without issue.  I'm not optimistic.

*As I write this, at 20:18 he said, "I think I'm going to bed now."  As I moved to help him he said, "No, no.  Just you stay here."  Eh...no dad.

"I need to help you dad," I said.  "I'm just coming with you to make sure you don't fall."

He states he doesn't need to go to the toilet first but I lead him there anyway.  He's still wearing his pants and pad.  He doesn't need these through the night...yet.  I struggle with HIM trying to assist ME to remove pants and pad and put his pyjama trousers back on.

"Go for a pee dad," I tell him.

"Okay," he answers...like a wee boy.

He's now deep in slumber as I conclude my blog.*

I feel my head slowly disappearing up my own arse as I contort in frustration.  From the corner of the room, a little wine bottle beckons me.

"Don't do it," says the little angel on my shoulder whispering in my ear.

'1 - Nil' to the wine!!