WHEN FATE TAKES OVER

As we know, being a carer for someone living with AD, can be absolutely exhausting.  For me, the physical side is taken care of but the emotional roller-coaster is relentless.  These last few days, I’ve been feeling numb.  Maybe one of the reasons numbness was created was to help us process emotion at a deeper level.  To keep thought out of the way.  This week flung us off in a different direction, one I had not allowed myself to contemplate.

On Tuesday, Leaf was in a reasonable mood, albeit not ‘with it’ in any real sense of the word.  I had to lower my mask for him to recognise me – fair enough.  I poured cups of coffee and opened a box of truffles.  He immediately took the protective layered paper on the top and proceeded to tear it into strips, lots of strips.  I gave him a truffle, he ate half and went back to tearing, then, ignoring the truffle, he popped a bit of torn paper into his mouth.   It didn’t taste too good!  He removed it and tried another bit.  I handed him the truffle.  He finished it off.  So there you have it, rewarding stuff!  He mumbled throughout, mostly incoherently although at one point he asked me ‘Any news of Sue?’  I reminded him who I was and told him I was fine.  When he informed me his brother and sisters were dead, I was able to reassure him!

After that I tried to ascertain what he remembered about home and our neighbours.  He thought we’d not been there long – a couple of weeks perhaps and vaguely recalled Claude and Philippe next door.  When I asked who lived at our house, he answered immediately ‘Pepe and Tommy’.  I reminded him that Tommy died many years back and that our dog is called Monty but he wasn’t listening, he’d pulled back his chair and started wandering around the room. At this point, Manou, the intern, appeared, which saved me from seeking him out.

He gave me the time of our appointment with the urologist.  However, it depended on whether the results of a urine test, taken the day before, came back clear.  I learned that Leaf has had several infections, which was no surprise; he keeps pulling out the catheter tube.  What a nightmare for the staff having to constantly put it back in and painful for him too!

When I asked Manou if he could accompany us to the appointment – his English is fluent and I thought some moral support would be a good idea – he agreed, provided no emergencies cropped up.

I left with a promise that I would be called the following day if the appointment had to be cancelled.  Friends had asked me to lunch, so I was able to put it to the back of my mind and was relieved, when I got home, to find the hospital hadn’t called.

By this stage in my life, I’ve almost given up thinking about how a forthcoming event might pan out, but on Thursday morning, I was mulling over and over what could happen.  Not helpful I know, but difficult to avoid.  I took several deep breaths before masking up and going into the hospital.

The urologist was running late, so I waited in reception for half an hour – the mask over my right ear but held to one side to allow me to breathe.  The ambulance arrived to take us round to the other side of the hospital complex.  Leaf was wheeled out, unmasked, calm and apparently unconcerned about what might be going on.  In the ambulance I held his hand and explained, for what good that did.  I don’t think he registered at all.  Manou joined us at the entrance and Leaf was lifted into a wheelchair.  We passed a lot of patients in the waiting area and were taken straight to the treatment room.  A nurse appeared and tried to get Leaf up onto the bed.  ‘Good luck’ I thought, he doesn’t like taking instructions.  It was a struggle but we managed it between us.  She gave him an antiseptic wash and put a sheet with a hole in it over the appropriate spot!  Leaf fidgeted throughout.  This is going to fun – I imagined how he might react to the camera being put up his privates and worried about how horrid it might be for him.  We waited, making inane conversation.

The urologist finally bustled in, a serious-looking man (behind the mask), I didn’t warm to him at all.  He and Manou exchanged medical talk and he produced the camera tube.  While Manou held Leaf’s right arm, I held his left and the nurse clung onto his legs.  Even though he’d been given a calmer, it hadn’t stilled his limbs.

Up went the camera, not appearing to cause any pain, thank God, and the urologist had a good look around!   Then Manou took a turn.  I didn’t ask for mine, not wanting to prolong the undignified and invasive business.  Not that I would’ve been allowed a look anyway!

The camera was finally removed and the urologist explained the problem.  Leaf’s prostate is fine but the exit from the bladder into the urethra is narrowed by thickening of the bladder walls.  This is not uncommon, I was told, and can be rectified by a simple procedure to ‘shave back’ some of the muscle.  Only a local anesthetic is required.  Of course I understood and had to accept that this was necessary.  The catheter is no longer an option of course.  More harm than good.  That was it, we were transported back to the dementia unit and Leaf was wheeled away.  Now was my chance to talk to Manou in private.

We sat outside and I quizzed him.  How is Leaf?  How does he behave? What does he do all day?  How is he with other patients?  Is he depressed?  And more.  I stressed my main concern, apart from how his general behaviour has evolved, is being able to give him ‘wifely’ reassurance and affection, spending time with him communicating as best we can and keeping him occupied as much as possible. I remember that he paces constantly round and round the ward.  What a miserable way to spend the day!  ‘No, no, it’s not like that at all!’  Manou was a bit upset.  He explained that there are lots of activities – occupational therapy for instance.  And there’s music playing all the time, the patients dance and sing and can draw and paint or do other ‘crafty’ things, if they want.  I couldn’t envisage Leaf willingly taking part, but apparently he loves it.  I was amazed, but pleased too.  

Manou further reassured me that he’s usually in a good mood, chats to everyone, especially a Spanish patient with whom he has no trouble communicating.  It sounded too good to be true.  ‘What about the downside?’ I dared to ask.  

He is stubborn, uncooperative and frequently simply refuses to be showered and dressed.  I remember the trouble I had getting him to dress and undress.  And, to make matters worse, he has lost the connection between going to the toilet and the toilet itself.  This was the sort of news I was dreading.  He wears protective pants but …..   

My first reaction was to empathise like mad.  How horrid it must be for him, how humiliating, how mucky.  But apparently he doesn’t give a damn about that, he just doesn’t like being ‘fiddled’ around with.  Having others do things to his body.  This fits with his character.  His only hospital experience was circumcision when he was in his forties.  He doesn’t get ill, doesn’t take drugs and doesn’t ‘do’ vaccines.  Apart from the AD and attendant problems, he’s very fit, albeit very thin and VERY independent.  But there’s no denying his condition has worsened considerably in the hygiene department.  And he’s never still, if not pacing, he’s fiddling with anything he can get his hands on, pulling it apart, folding, tearing or popping it in his mouth.  And what shocked me hugely, even though an apparently tiny detail, he licks the walls.  I had to go at that point.  I thanked Manou profusely and left.

Emotionally, I feel like someone’s put me through a mangle.  I’m come out completely flat on the other side.  Cognitively, I now admit that I wouldn’t be able to cope having him home, even with a good deal of help.  If I were in my forties, maybe, but at 76, no.  

It’s the end of my dream, the end of being us in our own home, the end of so much.  I was clinging onto a tiny shred of hope.  That’s gone and now I have to come to terms with whatever lies ahead.  Even if a place were to come up at St. Joseph’s, the disruption would probably unsettle him too much.  He’s likely to be better off where he is, provided he can stay there and ‘acceptable conditions’ prevail.  But, at the moment, the future still looks bleak, if the Covid charade carries on and on.  However …

A tiny spark is igniting, I have to be optimistic. One day in the future, I will be able to visit Leaf in a normal manner, not just for a measly half an hour a week, and I could do more than that.  I could volunteer to help with the therapy, take some of the load from the nurses, get involved a bit.  I would be putting something back. 

With this possibility on the horizon, I will get through the weeks and months ahead during which I think there will be huge changes and mammoth disruptions in our world, there have to be.  God willing, we may be about to enter a new age and it WON’T be the one the WEF plans for us.

AND FINALLY: A plea for truth and a return to a life worth living

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