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!"