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!"