Mental Exhaustion

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 :

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 :smiley:

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 :frowning:

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 :frowning:

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.

I can assure you it’s not uncommon!!
It’s just still a taboo subject.
People don’t want to be judged.


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.


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.


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.

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.

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!! :smiley:

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.

Ending a tenancy … all you need to know :

Ending your tenancy - Citizens Advice


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.