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.
- Working full-time + doing all the above is absolutely draining the life out of me
- My relationship with my partner is incredibly strained
- 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!