Author: dderbydave

A long goodbye

It’s Sunday so I went to get Mum from the care home. We’ve missed a couple to allow her to settle. She was ready to go but fast asleep with her fellow residents. I woke her gently and am sure the look on her face was not for me: just a distance in her eyes. I went to put her new laundry basket in her room and when I got back she’d almost reached the front door. On the drive up she asked me if I’d locked her front door – she hasn’t been back since early December. She’s been here an hour and fallen asleep twice. She wanders a lot at night we’re told so days are spent napping. She remembers nothing of her week. In her room was a note I took which says she wants “OUT” and that she hates us all.

I know it’s the dementia but it still hurts.

The little ones are delighted to see their Nana but there’s not a lot of interaction. Tea is at 4:30 so we’ll get her back soon.

Dementia is a long goodbye.

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Another battle won

Why do people have to be so bloody arsey?

Mum went into a care home two weeks ago and we’ve cleared the house.

Well Gill has cleared it. Works like a Trojan she does.

So having got rid of twenty years of tat we obviously want to hand the house back.

I phoned her landlord, the main subcontractor for our local town council with this in mind.

Unfortunately I got a weasel who felt it good and right and professional to ignore the word dementia and alzheimers and who tried to enforce a standard set of regulations on me. Four weeks notice is standard and won’t start until next Monday. Blah blah blah.

I pointed out that I am not the tenant and so her rules didn’t really apply.

Ditto with Mum. She is no longer capable and rarely remembers what happened five minutes ago let alone has the wit to fill in a form.

She persevered. Though even after I said “you’re not listening to me’.

Gill overheard the call and said she had a mocking lilt to her voice too. Not nice.

Having given her my name and address to send me a form I hung up.

I then emailed the director of her company and cc’d the Chief Exec of my town council. (I don’t have him on speed dial but I’m sure he has an email filter called defcon1 applied to my messages)

Yesterday while working I received email from customers services, the housing director and firstly from the CE. All were hugely apologetic and promised action.

I’m a sceptic but there was indeed action.

The receptionist’s boss called and left a message and emailed the contents. Basically the call was substandard and action will be taken. The tenancy can be ended after just one week and she even gave me an email to apply for the overlap rent to be paid for Mum.

Sometimes things do turn out well – it’s just a shame you have to fight so hard for it.

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?

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.