Well, that’s a turn up for the books

I sent a letter to my brother – the one who responded to the first one in June.

Just an update of Mum’s situation, her new address and how we’ve dealt with the house.

He phoned and left a message while I was at work.

He has offered to help with the “top up” for Mum’s room.

I was a little taken aback but all in all it’s a kind gesture from someone who’s shown little interest in Mum over the last few years.

His two children have grown up and one has emigrated to be with a girl friend in Melbourne, the other lives in the City near him and is becoming successfully in a tech firm.

My brother does contract work developing and maintaining web sites mainly for sports clothing shops.

They are comfortably well off so can afford to support Mum.

Our conversations are always a little strained – and odd to listen to as we have identical voices. Jo listened in and sat with her mouth open.

We have a standing joke, Gill and I, about his clockwork brain. I correctly predicted when he would phone back and that he would be on for a set time – usually 15 minutes. He did and he was.

It is kind of him but, like the hundreds of photos of him and his kids we’ve found in Mum’s house, it’s a salve to his conscience for not seeing her more often.

There was no invitation to visit his house, large but empty, or even to spend time getting to know his nephews and nieces.

I’ve promised to scan the old photos and send a Onedrive invitation to him (technofunky me eh?).

He actually opened the conversation with a chat about the weather – we haven’t spoken in three years.

Family eh?

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Alzheimers: coping

It’s been some time since Mum’s Alzheimers accelerated.

A fall in early December helped to highlight its progress.

Now she is in a safe place where her medical needs are met and her safety is assured.

The initial guilt I felt as we cleared her house of the debris accumulated over the year is passing.

Gill busies herself with padding out the room with bookshelves and a laundry basket and is in town now buying Mum some comfortable lounge wear.

Yesterday at work a colleague popped in while on Bereavement. He seemed ok but was croaky and admitted crying a lot.

As he left I felt a strange sort of release. On the one hand I still had my Mum where his has passed. On the other his pain is immediate: mine is a long haul.

A people manager was passing me as I worked to construct a promotional sales end and I called her over.

I thanked her for her support which really had helped me through a rough patch. She expressed concern that lately she’d had real concerns as I had seemed tired and withdrawn. However, several good nights sleep and a haircut had changed this and she was glad to see the change.

Life goes on and we all have to adapt to its flux. Change is inevitable and we survive by riding the wave, not by complaining about its direction.

It’s a lesson isn’t it? Gam zeh ya’avor – this too shall pass.

A lecturer at college ran a Self Actualisation weekend which I attended with tongue in cheek. Much of it was pseudo-science but there were glimmers of wisdom amongst the hooha. One of them was that when we are in crisis we should consider how this event will seem to us in five years.

It’s something I’ve used a lot over the years.

Mum’s dementia is heartbreaking and has an inevitability about it that is frustrating to someone who knows he can “fix” most things.

But it is what it is and we are doing all we can to continue to care for this lady and we will carry on long after she doesn’t know who we are or even that we are sitting with her.

God grant me the serenity to accept the things I cannot change,

the courage to change the things I can,

and the wisdom to know the difference.

Reinhold Niebuhr

Thoughts on Mum’s Alzheimer Dementia

I suppose it’s easy to overthink Mum’s dementia.

It’s a brain disorder, an atrophy of abilities.

In simpler terms it’s been described as the long goodbye.

Each sufferer experiences it differently.

So each family has a different tale to tell.

I’ve joined a forum called myalzteam.com which allows us to ask and answer questions, give hugs and, most importantly, read about other people in similar situations to our own.

Some folk say pray: for what I’m not sure.

Not for strength: even in my most wretched moments I have the strength to pull myself together.

Not for a reason: just as there is no good reason for an all powerful entity to create my son’s broken body, there’s no reason to make older folk die a slow confusing death. None.

Not for a cure: tho scientists are inching forward, Mum’s situation will just progress.

I know prayer helps folk in need but, with the greatest respect, it’s not for me.

A better coping strategy is to try to understand by looking at the bigger picture.

Taking a step back and up helps me gain clarity.

Mum is 75: not a great age today but a decent one. She’s seen my children every week for the last 18 years. She’s been cared for and loved by a close family and a husband of 50 years. She emigrated, ran a Salvation Army Citadel, was a fine knitter and dragged herself out of the slums of post war London.

Mum’s contribution to my life and that of my brothers is immeasurable. Everything I do is a result of her bringing me up right. Many of my parental decisions are guided by her hand.

She did the job right.

As she inches away from me, I know deep down that she’s still deep inside my core.

The remnant of who she was may soon just be a broken body but her thoughts and morality and grit are a part of me.

Thanks Mum.

The deed is done

It’s strange. The build up to Mum’s “internment” has been more dramatic than the actual event.

To recall, she fell in December, banging her head and revealing to the doctors that her heart and diabetes are both in need of attention.

Increasing a medication sorts her arrhythmia out (I think it’s a beta blocker).

Her diabetes is a bit more curious.

She’s reliant on injections now – despite the carers saying type twos never become type ones.

Anyhoo, medically she’s properly drugged up now.

Being a “bed blocker” they moved her to the most awful care home over Christmas for an assessment of her social needs.

After some dithering she was assessed as having a high level of need and her path toward a residential home was set.

We had visited a few and found a decent one nearby which is where she is now.

Financial assessments have to be done after which all but a little of her income will go toward her “board”.

We pay a little and provide furniture for her room.

Everything is labelled including ornaments as they tend to go walkies with a few of the residents.

The two long corridors are at right angles and the top end is secured with a coded door.

Her room is large enough with a cupboard/wardrobe, a chest of drawers and a bed side table. It’s en suite too.

There’s a dining room, mostly kept locked and a large sitting room where various activities take place.

The foot lady comes on Fridays and the hair lady comes on Mondays.

Laundry is free, though she’s still washing out two scabby pairs of knickers leaving a drawer full unused, and mail is discreetly held by staff for relatives.

Do I still feel uncomfortable? Well yes I do. Head says I’m making her safe, heart says I’m betraying her. Tho’ I’m not.

Gill has all but cleared the house where nothing of any real value was found.

The charity shops have done well out of it and I’ve found a treasure of old photos, certificates etc all tucked into books and hidden in sewing boxes.

Her memory is about three minutes long and now, after the event, a local carer has told Gill that Mum often waited for the mail man (postie) on the street in her nightie. Nice to know.

Official wind ups of utilities etc has started tho we haven’t told her landlord, the local council, yet. They are a bit sharp about clearing the house when you do tell them.

The good news is that head v heart battle is being won by the noggin as my sleep patterns return to normal.

My brothers will be told when everything is done to avoid interference. “One dog, one bone” Dad used to say.

The oddest thing is that clearing her house feels like dealing with a death but without the funeral.

Glad it’s all but sorted.

Trust you’re well.

Happy New Year?

I doubt it.

Since the last time I wrote Mum’s dementia has moved on a lot.

We received a call in early December that she had had another fall.

This time she was on the toilet and naked.

Her Fall Alert Wristband kicked in and a duty operator called an ambulance and gave then access to the house.

Her injuries were slight but her blood sugars and heart beat were (again) not good. They took her to the local hospital.

After we got the kids out to school I went to her house and was upset by what I found. An hour and three bowls of soapy water later the place seemed clean.

You do this sort of stuff for. Your kids but never, I repeat NEVER, envisage doing it for your Mum.

By the time we caught up with her in hospital she was on a ward.

True to form, she had no idea why she was there. I took a pic of her head so she could see the damage (heavy graze but no concussion).

They doubled her heart drug to slow her arrhythmia and pumped insulin in to lower her blood sugars.

At our insistence, just before Christmas she went into a Care Home for evaluation.

Because of the festive season that assessment hasn’t started yet.

Through all of this she has repeatedly cycled through her normal complaints of lost keys, purse, independence, abuse by hospital staff, and how much of a waste of. Time even being away from home is.

Her memory lasts for about two or three minutes now.

We’ve removed valuables from her house but are reluctant to get on with clearance until a final decision is made.

The folk at the care home can’t see her going home. She forgets she’s had meals and screams that she’s starving.

We took her flowers and she barely acknowledged us, falling asleep after a while.

Happy New Year? We’ll see.

Memorium Mori

The view from my car is pleasant.

With my back to the old graveyard, I have a view of the English countryside before me. My small thermos of “posh coffee” is open and steaming up the windscreen as I dunk another custard cream.

It’s deceiving really. Beyond the tree line and below the rolling hills but tucked out of view is a large piece of farmland. It’s long past its best and awful to walk through. At its centre is a small boating lake with a yacht club (single seater, not Monte Carlo).
The town hall wants to develop it but locals are in uproar. Folk who never set foot on its muddy paths and boring fields are writing angry letters to maintain the green belt.

Below the treeline and filling my view is a nicely kept memorial garden filled with plants and added plastic flowers and dotted with the occasional wooden arch. Meandering paths are empty at the moment: my only companions have, like me, retreated to their cars for warmth.

Dad passed away three years ago today. In a couple of hours in fact. Mum had taken him to the dentist who had refused to examine him as he was congested.

They’d got back and she’d made him some lunch. By this time he was frail and it was pureed and thickened to help him swallow. He’d eaten a little and she had nodded off next to him waiting for him to finish. He slept too and like this, warm fed and with The Missus, he quietly slipped away.

She woke and busied herself tidying away and getting him some pureed pudding only to find him still and quiet and cold in his chair.

His funeral and cremation were well attended with both of my brothers appearing. Her family, long since estranged, didn’t show.

Del and Ricky were an item for over fifty years and his passing has destroyed her. As his constant carer her mind has disintegrated.

I doubt she knows it’s the anniversary of his death today.

Her thoughts are tangled up with missing keys and bank cards. With deceit and treachery. With the suffering she has for so long advertised to anyone who will listen. With pushing folk away and then complaining about her loneliness.

Today these complaints have no one to hear them. So she scribbles almost illegible notes to herself about the perceived misdeeds of those around her. Her carers are in and out in 15 minutes, performing their duties with little time for her long mournful monologues.

With nothing to complain about, apart from her own self imposed isolation, she has started to create nonsense tales of misdoing about the last people in the world who actually care for her.

Such is dementia.

The coffee’s gone now and a new party of heavy coated mourners have arrived with flowers and I watch them scuttle across the cold windswept garden.

I don’t come her for solace. Dad has gone and his ashes in a nice box with a metal plate are parked beneath a rose bush nearby.

I cleaned the burial plaque which sits in front of the bush today but felt no ties to the spot.

He’d be horrified by her behaviour and would tell her to pull her socks up.

All we can do is ignore the dementia and enjoy the parts of Mum that are still with us.

Alan

Reading has always been a big part of my life.

As a kid I’d hide in Middle Earth or Narnia, spending quality time with the folk there. It was a better place to be than the erratic ever shifting world on the other side of my book.

As an adult it gave me the company I missed living on my own. A social life is only good while its happening.

Life in the last 10-15 years has taken me away from my favourite pastime.

So I resolved to get back into it.

Alan Bennett has always amused me. His early work was superb as he teamed up with the biggest names in clever comedy. Later his Talking Heads were mesmerising in their accurate portrayal of Northern folk.

He, or rather his media portrayal, is interesting too. A sort of bitter old aunt of a man with a razor tongue and a withering stare.

Reading his reluctantly written memoir shows us how a bright kid in an intellectually impoverished family can flip from cute-smart cherub to bitterly disdainful almost hateful young man – he stayed in the car when his aunt attended her husbands funeral.

He details the main players in his life with a loving condescension that tries to justify his outlook. They seem to morph into ee-by-gum caricatures with glaring faults seemingly put there as writing fodder.

Now in his dotage, he has donated his life’s work (a large pile of hand written exercise books) to the Bodleian in Oxford who have found a bookshelf for them in a small room at the end of a long winding tunnel.

As a man, his media persona fails to impress. He entertains WI meetings with his readings and seems unchanged over the last sixty years. He strikes you as essentially lonely and bitter. He has a long term partner though and has survived a cancer scare.

It’s wrong to judge someone from what you see in the media. These days we all think we know someone because they appear on screens every day. If we are to comment it can only be on what we see, what they present to us.

This said, as I read his memoir, it’s his voice which talks to me. My guilty pleasure is that I chuckle along with him as he snips and snipes at those around him. He is a talented man.