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Re: Mental Exhaustion

Posted: Mon Jun 10, 2019 6:42 pm
by Honey Badger
Chrissie_1902 wrote:
Fri Jun 07, 2019 10:15 am
Hi HB,

We had the speech and language therapist out a couple of weeks ago and the choking symptoms were present then. They've not really advised her to change anything she's already doing- just take small bites of fairly soft food etc. A PEG was mentioned at our big multi-disciplinary meeting last month, but nothing has come of it yet (I suspect they're waiting until the next meeting with the neurologist to discuss it- personally, by then, I think she'll be too unwell to undergo the surgery to have it put in).
When you say soft, do you mean foods which are naturally soft (puddings etc) or is it an actual textured diet like smooth/thick/soft pureed. The likes of wiltshere farmfoods run menu's specifically for providing nutrition where it is hard for the person to eat (small, condensed meals) and caree had a pretty good experience with them.

I just can't get my head around speech and language doing nothing... unless there is a medical reason, tubing for nutrition should always be an absolute last resort because its a huge hit on the persons quality of life, and there are health risks during/post op, as well as maintenance of the tube itself.

Re: Mental Exhaustion

Posted: Tue Jun 11, 2019 10:02 am
by Broostine93
Honey Badger wrote:
Mon Jun 10, 2019 6:42 pm

When you say soft, do you mean foods which are naturally soft (puddings etc) or is it an actual textured diet like smooth/thick/soft pureed. The likes of wiltshere farmfoods run menu's specifically for providing nutrition where it is hard for the person to eat (small, condensed meals) and caree had a pretty good experience with them.

I just can't get my head around speech and language doing nothing... unless there is a medical reason, tubing for nutrition should always be an absolute last resort because its a huge hit on the persons quality of life, and there are health risks during/post op, as well as maintenance of the tube itself.
Hi HB,

Soft as in naturally soft at the moment- lots of soups, mash, gravy etc. My Gran isn't ready to move on to pureed foods yet- I think she'd feel like it was admitting defeat.
Tubing is standard for everyone with MND, unfortunately. The risk of aspiration resulting in fatal pneumonia is all too common and, as the disease attacks the muscles that are used for breathing (as well as every other muscle in the body), the lungs wouldn't be able to cope with it and she'd die.
It's just a horrible disease.

Re: Mental Exhaustion

Posted: Tue Jun 11, 2019 11:22 am
by Honey Badger
Hello,

I appreciate what you are saying, I just meant that while tubing is the "endgame" there are various stages of puree before you get to that point. My sibling (one of 3 people I look after) has a rare/complex disorder they were born with and has always needed complete care.. they are a significant risk for aspiration acquired pneumonia too. It is a big worry as they cannot be tubed due to their disorder and are classed as a permanent risk feed.

We had a scare the other year - hospital acquired aspiration pneumonia (bacterial infection) via outright negligence as caree bought up stomach acid when they were unwell/having a seizure and the staff failed to properly deal with it (and prevented me, even though I had their device packed and am trained to use it) so caree inhaled it and spent the next 2 months fighting for their life and its by no small miracle their actually alive still as you know it is often fatal in the fragile/frail (any age)

They do get on with the meals though, I'll get the menu and read it/show the pictures of them and they'll identify which ones they'd like to try (aside from tasting like regular food, they are visually stimulating which helps). I can respect it is not for everybody however, MND is utterly devastating and my heart goes out to you both as well as your family.. it is genuinely upsetting what people are made to go through.

Going back to the original post I completely get you with the exhaustion, even when we're briefly stationary the mind is doing marathons, its not healthy.

I am actually in the beginning of counselling myself so its a bit early to give you feedback as I'm still establishing how exactly I feel about that one (discussing in another post) as no doubt like anyone else here, life is a bit complicated :)

If you can think of anything else we could help with I will try my best as will others (good people around here).. I can certainly emphasise with the "impending" likeness of things as living with similar for the longest time.

Best wishes

-HB
Chrissie_1902 wrote:
Tue Jun 11, 2019 10:02 am
Hi HB,

Soft as in naturally soft at the moment- lots of soups, mash, gravy etc. My Gran isn't ready to move on to pureed foods yet- I think she'd feel like it was admitting defeat.
Tubing is standard for everyone with MND, unfortunately. The risk of aspiration resulting in fatal pneumonia is all too common and, as the disease attacks the muscles that are used for breathing (as well as every other muscle in the body), the lungs wouldn't be able to cope with it and she'd die.
It's just a horrible disease.

Re: Mental Exhaustion

Posted: Tue Jun 11, 2019 12:09 pm
by Broostine93
Honey Badger wrote:
Tue Jun 11, 2019 11:22 am
Hello,

I appreciate what you are saying, I just meant that while tubing is the "endgame" there are various stages of puree before you get to that point. My sibling (one of 3 people I look after) has a rare/complex disorder they were born with and has always needed complete care.. they are a significant risk for aspiration acquired pneumonia too. It is a big worry as they cannot be tubed due to their disorder and are classed as a permanent risk feed.

We had a scare the other year - hospital acquired aspiration pneumonia (bacterial infection) via outright negligence as caree bought up stomach acid when they were unwell/having a seizure and the staff failed to properly deal with it (and prevented me, even though I had their device packed and am trained to use it) so caree inhaled it and spent the next 2 months fighting for their life and its by no small miracle their actually alive still as you know it is often fatal in the fragile/frail (any age)

They do get on with the meals though, I'll get the menu and read it/show the pictures of them and they'll identify which ones they'd like to try (aside from tasting like regular food, they are visually stimulating which helps). I can respect it is not for everybody however, MND is utterly devastating and my heart goes out to you both as well as your family.. it is genuinely upsetting what people are made to go through.

Going back to the original post I completely get you with the exhaustion, even when we're briefly stationary the mind is doing marathons, its not healthy.

I am actually in the beginning of counselling myself so its a bit early to give you feedback as I'm still establishing how exactly I feel about that one (discussing in another post) as no doubt like anyone else here, life is a bit complicated :)

If you can think of anything else we could help with I will try my best as will others (good people around here).. I can certainly emphasise with the "impending" likeness of things as living with similar for the longest time.

Best wishes

-HB

Hi HB,

Thank you- it's incredibly kind of you to help, especially considering your experience on the subject!

Since I posted this originally, I've finally been able to have two separate 'days off' from caring- I cannot begin to describe the difference it has made. Not only has the anger and resentment almost dissipated between Gran and I, but I actually enjoyed the last two visits I had at her house. Sure, I was still tidying up and helping her by prepping food/helping her use the commode etc., but there was also actual conversation and a genuine contentment to be in each other's company.
One of the best things about it is that I can finally start to focus on the other people in my life, most notably, my fiance. It is utterly horrible to know that someone you love dearly is going through an awful disease and knowing that they will never get better, but it is often overlooked (by both care and caree) that, after the caring role ends, the carer absolutely needs to have their 'other life' to go back to, otherwise there'll be nothing left but emptiness and absolutely no purpose in their life. I am trying to avoid that feeling at all costs and this respite is really helping me to achieve that (whilst also giving my poor Gran a break from my constantly unhappy/stressed/worried face!)

Re: Mental Exhaustion

Posted: Tue Jun 11, 2019 2:34 pm
by bowlingbun
Chrissie, please don't be frightened of your life after caring. I was widowed suddenly when I was 54, I now have a "new" life. There's lots of the "old me" left, my love of sewing (dressmaking) has become a NEED to sew, or I get irritable. I go to Greece on holiday, have many new friends, do different things.

It might help you enormously to have a friendly counsellor who you can turn to as things get worse, who can then help you through the days to follow.

Don't be in any hurry to get married and have kids, just enjoy getting to know your "new" self better, and a time of healing, before you turn over to yet another chapter of your life.

Re: Mental Exhaustion

Posted: Tue Jun 11, 2019 4:00 pm
by Broostine93
bowlingbun wrote:
Tue Jun 11, 2019 2:34 pm
Chrissie, please don't be frightened of your life after caring. I was widowed suddenly when I was 54, I now have a "new" life. There's lots of the "old me" left, my love of sewing (dressmaking) has become a NEED to sew, or I get irritable. I go to Greece on holiday, have many new friends, do different things.

It might help you enormously to have a friendly counsellor who you can turn to as things get worse, who can then help you through the days to follow.

Don't be in any hurry to get married and have kids, just enjoy getting to know your "new" self better, and a time of healing, before you turn over to yet another chapter of your life.
Hi BB,

I just don't want to neglect the other people in my life, who have been so far extremely understanding- I'd hate to reach the point where caring has finished and find that, because I didn't have time/energy for them during the time I was caring, they then no longer had the time for me afterwards (if that makes sense).

I am on a waiting list for a therapist- I've been told there's a long wait time, though.

I'm definitely not in a rush to have children- I don't particularly feel the maternal instinct that most women seem to have. I have been engaged since 2016, so I would like to get married at some point, after all this hectic sadness has come to an end.

Re: Mental Exhaustion

Posted: Tue Jun 11, 2019 5:35 pm
by bowlingbun
That makes perfect sense to me, and shows just how kind and understanding your fiancée is

You both deserve every happiness in your life together. I hope you can both manage a bit of "daydreaming" about what you will do when your caring is over.

Re: Mental Exhaustion

Posted: Tue Jun 25, 2019 2:07 pm
by Broostine93
Hi Everyone,

Thought I would write an update on my situation with my Gran.

After an absolutely appalling few weeks with the in-home care agency (4 carers per day- when they remember to send one -.-), my Gran has finally come round to the idea of moving into a nearby nursing home.

My fiance and I spent the whole weekend going through/sorting/clearing the upstairs portion of the house (as it's a council property, Gran will have to give up her tenancy within a month of moving). Gran wanted us to do this for her, especially whilst she is still in the house and can see where everything is going. So far, so good.

I had a call today from the local nursing home to say that they're coming out tomorrow to do an assessment- I have no idea what this assessment entails- does anyone know?

I have reached out via a local facebook community group to ask any of the locals if they know what the home is like via first-hand experience- the feedback I've had has provided such a breath of relief. Apparently it is excellent and I simply could not ask for more.

The home is going to be funded via CHC because of the medical condition my Gran has, so no worries with regard to funding (another weight off the shoulders for everyone involved).

The amazing Occupational Therapist has also been in touch to say that she's getting CQC involved to look into the failings of the current care agency we've got- the end-result is most likely to be that CHC will never again use this agency because they are simply incompetent and irresponsible.

So, it looks like my time as a primary carer is coming to an end- I will now move into being the care manager. There are still incredibly tough times to get through (such as getting the house cleared, utilities cancelled etc.) and also very sad times (the steady loss of my Gran's voluntary muscle functions, speech and, eventually, her breathing), but it is a massive relief to know that my Gran's final weeks/months/however long are going to be spent somewhere that can not only cope with her medical needs, but can give her an actual quality of life that she currently doesn't have.

I am really hoping that all goes to plan (the home apparently has just one room available, so it does feel like fate).

If anyone has any knowledge of the moving process, I'd be so incredibly grateful (i.e. time-scales from assessment to the move, when does the care plan get written up and put in place?)

Thanks guys!! :D

Re: Mental Exhaustion

Posted: Tue Jun 25, 2019 2:14 pm
by bowlingbun
Hi Chrissie,
As Gran is being funded by CHC, I think she might not have technically moved out until the flat is empty. Might be worth checking with Shelter.
You have done very well, forever feel proud of what you have been able to do for her.
All sorts of things will crop up in the next year, we are still here to answer any questions you might have.
I wish you and your fiancée every happiness for the future, you have certainly earned it.

Re: Mental Exhaustion

Posted: Tue Jun 25, 2019 2:15 pm
by Chris From The Gulag
Ending a tenancy ... all you need to know :

https://www.citizensadvice.org.uk/housi ... r-tenancy/

had a call today from the local nursing home to say that they're coming out tomorrow to do an assessment-


Mmmm ... and CHC / NHS Contuing Healthcare HAS been approved.

The smell of ... money , perhaps ?

That cynical mind of mine is racing ... be very interesting to read what follows !

Early odds on fees upfront / top up fees ?

2-1 joint favourites ... 10-1 bar the field !!!

Posed ... and ready.