Trollheart

She has MS (Multiple Sclerosis) which has worsened since about 2010. She is now completely bed bound, unable to feed herself, move her hands or legs or do just about anything for herself. She has two carers who come in three times a day, seven days a week, mostly in the morning to change her and dress her and wash her etc, and again in the evening to put her on the commode (toilet) and that's about it. I do all the rest.

I have to cook her food then feed it to her, give her specially thickened water on a spoon, as normal water runs too fast and chokes her. I have to change her at night so that she's not lying in wet clothes, give her all her medication, hold her cigarette as she smokes it, move her up the bed (as she slides down every time the orthopaedic mattress moves as she is raised up to sit, down to lie down etc).

Mentally she's fine; we get on well but her speech is so badly slurred now that it's becoming impossible to interpret what she says. I'm worried what happens when I can no longer understand her at all. I shouldn't say she's fine; she isn't of course, but she has all her faculties and can watch TV, listen to music and enjoys me reading to her every morning; she can follow everything but if she has to read anything off a screen, no chance. Her eyesight has gone very bad over the last few years. She also tends to choke on her food a lot, which can be downright terrifying.

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Trollheart: Signature-free since April 2018

The Batlord

When the world is mine you'll be payed handsomely to hold my cigarette while I smoke it and occasionally choke me.

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adidasss

@TH: My goodness. I imagine that level of disability leads to a great deal of frustration on both sides so I'm not surprised either one of you ends up losing it from time to time. Hang in there...

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“Think of what a paradise this world would be if men were kind and wise.” - Kurt Vonnegut, Cat's Cradle.

Last.fm

Trollheart

Meh, if you knew me you'd know I'm a wimp who hardly ever loses his temper, but yes, as time goes on and she gets harder to understand and progressively worse, it does start to strain the patience a little. The amount of times I've kicked innocent doors, growled at the cat (poor Eddie, RIP: sorry dude!), punched walls etc just to give my anger an outlet, you would not believe. She can be very frustrating. I'm sure I am, to her too, and I try to see things from her side as much as I can, but sometimes it's damned hard. She can be very obstinate and really thoughtless, though of course not all the time. For a woman of 50 she can act like a teenager or even a child at times.

I worry about how much longer I can realistically look after her at home, and what would happen if/when the time comes. I know it would kill her pretty quickly, and I know I would never forgive myself, so I try to ensure she stays at home as long as I can possibly manage it. Luckily I have my writing to occupy my energy when I'm frustrated, but having nobody to talk to or vent to can be hard. Still, it could be worse.

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Trollheart: Signature-free since April 2018

The Batlord

Well the next time you want to punch a wall or yell at a cat just read your sister some of your writing.

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adidasss

I don't think that would happen. But anyway, I hope you're also thinking of yourself, and will have no regrets about dedicating your life to taking care of her. What did you do before you started to take care of her full time?

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“Think of what a paradise this world would be if men were kind and wise.” - Kurt Vonnegut, Cat's Cradle.

Last.fm

ribbons

Feeling angry/frustrated/anxious is entirely normal under the circumstances. I don't want to embarrass you - but I think you're an absolute saint and I admire you very much.

ribbons

1. What piece of old-style technology do you miss, and why?
I miss the big vintage Blaupunkt tube radio we inherited from my grandmother. As an adolescent/teen I played it incessantly - it had FM/AM/Short Wave and really powerful, pure sound.

2. What's your favourite flavour(s) of crisps/potato chips?
Ruffles cheddar and sour cream

3. If you could visit any planet, real or fictional, which one would it be?
I’d run rings around Saturn and take occasional sojourns on its moons.

4. What was the last thing that made you lose your temper?
Had an argument with my sister before Thanksgiving (didn’t feel comfortable attending a large group gathering at her house); and although I didn’t lose my temper, I did raise my voice out of frustration.

5. What's your level of gardening? Green thumb? Black thumb? No interest etc?
I used to belong to a community garden and grew tomatoes, vegetables, herbs and flowers with fairly good results. I haven’t had as much success in tending to indoor plants for some reason.

6. What do you think is the single most important issue in the world today?
Eradicating COVID-19.

The Batlord

Regular chips < Ruffles < kettle cooked

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ribbons

Kettle cooked are good, but I find them a little rough on the teeth. I don't like regular Ruffles, actually - but those cheddar and sour cream Ruffles are pretty good (although very salty)!