A Dementia Carer Diary:
Becoming an Inconvenience
As a dementia carer, it’s now clear to me that you may find yourself in an impossible situation when your familial duties are considered an inconvenience by some, especially an employer for instance.
the tale of a friend of mine, whose mother suffered from Vascular Dementia for more than five years before her death last year. He is still
suffering a great sense of loss. But
that’s not all…
My friend kept a diary of the great many hours he spent in hospitals and care homes. It was his way of staying sane. I will publish his diary to ensure his anonymity – you’ll find out exactly why as I release it to you, day by day.
I am astonished as to where carers find the strength to carry on day after day, laying their own lives to one side, watching their social group fall away and find themselves forming their best relationships with hospital and care home staff.
Then? My friend would go home to live an isolated life, washing, drying, ironing nighties and dressing gowns and cursing the weather because his tumble dryer had broken and he couldn’t afford a new one.
Pity and Resentment for the Dementia Carer
It is normal for a person who becomes a carer by circumstance - and not choice - to draw enormous sympathy. Or, to be honest, pity. I am certain that some of you will know that as the disease progresses a dementia sufferer will become more dependent on you and if you are working then your increasing carer role will impact on your work.
Whether you are a carer for someone with Alzheimer’s, Vascular and Frontotemporal Dementia - in fact, all types of dementia from the most common to the rarer types – your life will undergo great change.
And not everyone will be willing to accommodate you.
Thereby, gradually his daily work life, made being a dementia carer a disciplinary matter and support and initial understanding gave way to barely concealed slights, innuendo and contrived lies and indirect bullying. There were very serious arguments. But what was he to do?
What could he do? He told me that the perfect scenario would have been to give up work entirely and care for her, but like us all he needed the wage to survive.
During that time, he never received any criticism directly but always by a second party, lest he confronted the injustice of what was being said or raised observations about wanton and callous cruelty. It is all about cruelty when one purports to support individuals in principle but completely fails to do so at a personal level.
Work was not a comfortable place to be. In fact, at times it became a very abusive place. Either he was anticipating a distressed phone call or being undermined and bullied. Quite simply, life was hell. It was clear there would be absolutely no accommodation for being a full-time employee and at the same time a full-time carer.
I have no doubt that he was a full-time carer because the boss was told this by his colleagues. In the early stages of the disease, his whole conscious day was focused on his mother, alone at home. He was highly capable in his daily work - even at the worst of times - but when the inevitable emergencies arose there was a clear deep resentment at the time away from working for the profit of another.
Social Isolation and Love
Where siblings should have stepped in, they didn’t. They could see the gradual physical damage that it was causing their brother and did not wish to suffer similarly.
Talking to my friend, what stands out above all the suffering was his intense concern, exhaustion and his love for someone slowly and painfully fading into the shadows. He tells me that Love was the anchor to which his mother clung desperately. As her memory faded because of the dementia, that direct love became everything to her.
Carers simply do not walk away. It is viscerally impossible for them to do so. Instead, they merely collapse but keep going on and on and on. Too frequently in isolation and much too frequently to the detriment of their own health.
Read and Get Angry
The diary pages to which I will link from here speak of the lack of real personal support for a carer. You will also learn that even as Dementia and Alzheimer’s Disease become far more prominent in people’s and community lives, other than make noises of support and concern, governments do very little.
It is as if politicians are passing on that responsibility to future institutions and hoping that the medical, economic and social crisis on the way won’t happen on their watch.
Too late, Folks. The crisis is here and you need to act.
In the meantime,
In the meantime, I and my friend had to do most of the caring ourselves. But this is his diary…
Love is the Anchor
I was advised by my brother that once Mam was placed in her first dementia
care home that we should leave her there for at least a week and not visit. The
idea, apparently was that she should hopefully become accustomed to the place
and company. In other words, we were incarcerating
my Mam to break her. Read on...
Day 1. Just three beautiful, elderly ladies sat together
I choose not to kiss her goodnight in case I wake her up. Janine is still sat next to her, as she had with us both for the past hour. And Gwendolen has just taken my place deciding that this is where she is supposed to be after all the purposeful wandering. Just three beautiful, elderly ladies sat together. Read on...
Day 2. Man with Dementia is Arrested on a Railway Line while Mam Snoozes
This evening, one of the care workers nodded down the corridor and I receive the usual tired smile. Staff usually take people to sit in the television room to allow them a bit of peace. Mam doesn’t like noise or commotion. How’s she been? I ask. She’s been alright all day. She was singing this afternoon and it was lovely. Read on...
Day 3. I’m Off to Mexico
My brother was coming out of the house with his golf clubs and said she’d been to see Mam straight from work and that she was drowsy but was alright when he was there. He then told me that he was not going to play golf but going to clean the clubs, which ... Oh, by the way I'm flying to Mexico for a week’s holiday on Saturday. Two days away. Read On...
Day 4. It’s a Full Moon at the Dementia Home
The carers Team Leader, Mike looked up at me from his incessant note-making of the patients’ various conditions for the incoming night staff. He proposed that the Moon was full.
Day 5. Headline! Dementia Carer has a Day Off
This evening, the first time in a long never, I went for supper with two friends at a local hotel. The company was sparkling and full of fun and laughter. They are the type of people who love to laugh. The food was less pleasurable. Who cares. I need my human anchors as well. Read On...
Day 6. Dementia and Bastards
The map is not the territory. The diagnosis is not the person. Mam is still an identifiable person and recognises some friends who have the courage to come visit. Read On…
Day 7. Dementia and the Tummy Conscience
When a patient does something daft, it is alright to laugh. You’re not laughing at the patient but laughing with him or her. Laughter saves you.
Day 8. A Carer’s Hallucination - The Boys are Discussing the Football
David was wearing a very smart waistcoat and looked dashing as he sat next to Simon on the bed. Both were watching the television. Simon was nodding as he stared at the television and from the distance they gave a very strong impression of two friends discussing the football. Read On...
Day 9. Mafia Contract in a Dementia Care Home?
There is only one real troublemaker in Mam’s care home. I think that she is an ex-Mafia hitman: too many incidents and too many falls. Read On...
Day 10. Lost in Thick Mist
I think that place is irrelevant for Mam by now. It is people she misses most of all. I think that home is now an emotional security she longs for. Read On...
Day 11. House of Love
I was desperate to spend some time talking to Mam when she was in such a pleasant mood. Mam leaned back in her chair holding my hand and closed her eyes with her smile on her face. Too late. Too late. It doesn’t matter what time I arrive. Read On...
Day 12. Your Mother’s Not Well
Valentina, the Romanian nurse, smoothed past me with a smile at Margaret. She smelled gorgeous. I must, one day, get close to loveliness again and rediscover how wonderful ladies are. Who am I kidding? Read On...
Day 13. Dementia is Making Me Desperately Unwell
Robert can become very angry on now and then and from sheer frustration has kicked someone and pushed him over. And there was a coldness to him when he did it. Read On...
Day 14 – Buying Women’s Underwear Can Be Bad For Your Reputation.
There was mild amusement in the shop when I asked questions about women's underwear. The time I bought two nightdresses was even funnier. Read On...
Day 15 – There’s Always a Bloody Clock Ticking Down to Zero
I suggested that maybe there should be a flat screen television on the wall, but Vernon shot down that idea by saying that David would probably rip it off the wall. Read On...
Day 17 – Oh Dear! I'm Holding a Man's Hand
Holding a dementia patient’s hand is a wonderful thing to do. Who thought I’d be holding hands with a man and meaning the affection I was trying to share with him. Read On...
Day 18 - Four-Wheel Psychology and a Wotsit of Hares
I hope the person from the Court of Protection I speak to is aware of the ‘Protocol for Dealing with the Exhausted and Alphabetically Incompetent’. Read on...
Day 19 - Never Too Old to Fall in Love
There was a new carer there today. A slim, blonde and beautiful Romanian bombshell called Natasha, who fits snugly into a tight t-shirt and ridiculously tight jeans. Read On...
Day 20 - Purpose, Futility & the Bastard Rabbits! Eating My Garden
I seem to have the knack for germinating and then potting on successfully, but I dare not put them outside. Read On...
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