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.