Mental Exhaustion

A place for those 18-35 to chat about all things caring.
Hi Everyone,

My Grandma is progressing very quickly with her Motor Neuron Disease now. She has, as of this week, lost the ability to walk completely now.
Her speech has gotten so bad that I'm struggling to understand most of what she says and she is choking very regularly on food (when she actually manages to eat something, that is).
She does have 4 carers come in every day and I have finally been able to arrange a few evening sits during the week (though, if my Gran's usual carer is not on duty for whatever reason, all hell breaks loose and I end up having to cancel the sits, meaning I have to make sure I'm available all the time).
There is a general air of frustration, resentment and guilt between myself and my Gran. I understand that older people want to hang on to their independence for as long as possible, but it's like talking to a brick wall when I tell my Gran that her needs are due to a medical condition, not due to age. I genuinely do believe that she would be better off in a nursing home that specifically caters to those with MND. General carers don't have a clue how to deal with this disease.
Being 26, I have 0 experience of looking after anyone (I don't even have children so I literally have no idea how to successfully tend to someone's daily needs). I flat-out refuse to give up work- I've worked way too hard to get to where I am to give it up for the sake of (possibly) less than a year before she passes.
I am struggling so much with the emotional burden of sorting all my Gran's affairs out- I am cleaning the house, washing hair (apparently the carers don't do it right), arranging appointments including transport to get there and having to book time off work to be there, going to pay bills, doing all the food shopping, sorting all her paperwork, organising the will, sometimes cleaning up after carers or doing jobs they've missed, helping to/from the toilet, sorting increasing levels of care that Gran needs as her condition speedily progresses, ordering and picking up prescriptions.... there's not one day that goes by where I don't have to do something for her or related to her. Don't get me wrong, I absolutely adore my Grandma- she has been brilliant to me for the majority of my life and I wouldn't be moaning about most of what I'm doing if it weren't for 3 things.

1) Working full-time + doing all the above is absolutely draining the life out of me
2) My relationship with my partner is incredibly strained
3) My Gran has become extremely demanding (i.e. getting me to do things that aren't essential) and she regularly shouts at me for 'forgetting' things or for trying to get her to make a decision about what she wants to happen with her care as her condition progresses (she seems to be incapable of planning for the future and doesn't realise that her decisions are impacting other people's lives)

I am waiting for an appointment to come through to get some therapy for myself to deal with all of the above, but I've been told the waiting list is very long, as expected. I am tired of moaning to my poor partner every single day because I've got nobody else to vent to.

I'd appreciate anyone's opinion on the above- any help (or communication of any kind!) is greatly welcomed!
Hi Chrissie.

One thing that literally screams out ... CHC / NHS Continuing Healthcare.

Main thread :

https://www.carersuk.org/forum/support- ... read-35998

Has it been offered / in course / rejected ... even mentioned ???

Could well be the answer to your problems ... as well as being beneficial to your grandmother.

Worth investigating ?

Any help needed elsewhere ... benefits / assessments ( Needs & Carers ) / housing etc . ???
Hi Chris,

She's already got continuing healthcare in place- that's what's paying for the current level of care she's getting, but still doesn't help me in my situation, unfortunately. Half the problem is that she doesn't want help from anyone but me because she is still the 'authority figure' to me and can ask things of me that would be unreasonable to others, I think.

Thank you for your reply, though :D
Your welcome.

Seems like an interesting discussion is on the cards ... time for a change in the assumed relationship ?

It is often said that carers are slaves ... slaves to the system perhaps but ... not necessarily to their carees ?

Even a few more links in that chain won't go amiss ???
Yes, I think I've only read two other people's posts regarding similar treatment by their carees. It's very uncommon and I guess that's why it's so tricky a situation to deal with.

Of course, nobody wants to be the cause of any upset, but I fear I will have to eventually go against my very nature and withdraw myself as a resource to almost 'force' the hand. I'm not sure if I could cope with the guilt, though :(

The hardest thing is that my Grandma is the last living relative that I have ever been close to. My Mum passed away a couple of years ago and I did withdraw myself from her because she was a violent alcoholic and I couldn't help her. Of course, learning of her death and knowing I actively stepped away from her is my source of reference for this case now with my Grandma- I can't let it happen again, but I've never known exhaustion like this. It's such a horrid situation to be in :(
Any caring situation is difficult ... and different ...no two are ever the same.

Kinship caring is virtually no different ... even more so when a generation is skipped.
Chrissie_1902 wrote:
Thu Jun 06, 2019 1:25 pm
Yes, I think I've only read two other people's posts regarding similar treatment by their carees. It's very uncommon and I guess that's why it's so tricky a situation to deal with.

Of course, nobody wants to be the cause of any upset, but I fear I will have to eventually go against my very nature and withdraw myself as a resource to almost 'force' the hand. I'm not sure if I could cope with the guilt, though :(

The hardest thing is that my Grandma is the last living relative that I have ever been close to. My Mum passed away a couple of years ago and I did withdraw myself from her because she was a violent alcoholic and I couldn't help her. Of course, learning of her death and knowing I actively stepped away from her is my source of reference for this case now with my Grandma- I can't let it happen again, but I've never known exhaustion like this. It's such a horrid situation to be in :(
I can assure you it's not uncommon!!
It's just still a taboo subject.
People don't want to be judged.
Hello,

Just passing through so my apologies if this has been covered but the part regarding meal times sent alarm bells off in my mind as it is an area I am quite experienced in identifying problems with.

If your grandmother appears to be showing signs of Dysphagia (problems swallowing) no doubt due to the progression of the MND you should have speech and language come out and re-assess her for nutritional needs as she may well require a change in texture (puree, thickened fluids etc) or possibly even a tube inserted for nutrition as aspiration pneumonia can become a very real threat particularly with this sort of degenerative illness.

Best wishes

-HB
Chrissie, I could write a book about my carees trying to control me, thinking that their needs are more important than the right of the carer to a normal life.

It is time for you nan to move into a nursing home, because if she is starting to choke, she NEEDS round the clock care - a TEAM of people on hand any time of the day or night to help her.

Have you spoken to your local hospice about help and support?
This suggestion would probably be best coming from the GP or District Nurse. What are they doing to help you at the moment?
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).

Hi BB,

She's slowly coming round to the idea of moving into nursing care, so at least that's something. I managed to get her to agree to my sorting out her belongings upstairs (seeing as she can't go up there and see it being emptied anyhow, so shouldn't affect her emotionally too much). As it's a council house and there's 50 years' worth of stuff to sort through, it's going to be a huge struggle to get it all done in the limited time I'll have if she goes into a nursing home (or when she inevitably passes).
We don't have any contact with the hospice yet- they won't do anything until the last few weeks. The GP said that he is available for 'normal' medical issues, but anything to do with the MND needs to go through the MND Team specifically. We've got the OT & Team who come out once a week to see Gran. They have been brill in getting Gran to accept higher levels of care at a pace she feels fairly comfortable with and they immediately put in the evening sits when I phoned last week and said I wasn't coping. Unfortunately, that doesn't stop my Gran from refusing those sits when it's not this one specific carer that she likes. I really feel for this one Carer- she's coming to do the teatime, evening sit and bedtime call for my Gran on her days off next week because she knows how distressing the situation gets when she's not there (the poor woman is in remission herself and I feel it's way too much for her).
Tonight (fingers very much crossed) should mark my first whole day off from caring in months, as long as nothing goes wrong/causes Gran to get upset or distressed.
I am really hoping that, when the OT next visits, she is able to use her professional skills to get the ball rolling on moving into a care facility- as you say, she really is at the point now where she needs round the clock care, as she can no longer even get to the commode that is by her bedside by herself.