Re: Tired newbie :)
Posted: Sun Oct 20, 2019 4:23 pm
Hello back fellow MND CarerBroostine93 wrote: ↑Thu Oct 17, 2019 9:41 amHello, Fellow MND Carer
I care for my Gran, who was diagnosed with MND in March this year (though displayed symptoms for a year before that).
It is so hard, not just for the MND sufferer, but for their 'main' carer, too. You absolutely have to take care of your emotional wellbeing so the carer's assessment being done will certainly help you with that.
I know exactly how you feel RE the treatment of the daughter vs the treatment of yourself. I used to feel so resentful that my Gran would put on a smile and spend time talking (when she could talk properly) to other family members about 'normal' things, whereas I would get barked at to do this or clean that or move this there or bring this here. I felt like a little slave at one point, if I'm being brutally honest. The thing to realise is that your husband treats you differently because he thinks you can handle it the best out of everyone else- he will be thinking his daughter won't be able to cope as well, emotionally, as you. It's like a backhanded compliment, in a way! You must tell him how you feel, though- if you don't, it will eat away at you until all you feel is resentment (and who needs that on top of all MND has to bring to the table?)
It's a good thing that you work for the MND charity (MND Association, by any chance?) as you will know what to prepare for, when the next 'dip' in the disease occurs (as you'll know, playing catch-up with this disease is worse than being overly prepared for the 'next stage'). Is your husband on board with this? Reason I ask is because my Gran was always 2 steps behind the disease progression (basically in denial that her legs were on their way out and in denial that her swallowing was starting to fail her- which has now resulted in the palliative team confirming she's left it too late to have the PEG fitted).
One thing I will say is this: if you can book some time off work for yourself, do it. Do not tell anyone you have booked the time off (especially your husband). You will feel guilty to start with, but you need this time to yourself. Go and get your hair cut- you absolutely deserve it! (You could say you called a mobile hairdresser into work during your lunch break, if you need to!) Honestly, I was about ready to throw in the towel- I was emotionally exhausted, depressed, had zero hope, complete disregard for my own health and wellbeing because I thought 'what's the point?'. In the end, I just threw caution to the wind and realised that I was saving my annual leave days for potential hospital visits (and what would I actually be able to help with if I rushed to the hospital from work if she had pneumonia? Absolutely nothing.)- so I decided to take some days for myself. It's the best thing I could have done. It finally gave me chance to process the diagnosis and it gave me a chance to 'see through the fog'. I've felt more in control, calmer and been a better carer for my Gran ever since that break.
I wonder if you've been put on the waiting list for the MND Palliative Therapy? If you're not, please ask for it. It's so, so helpful to be able to vent/cry/rage/moan/whinge to someone who has seen it all before (and someone who won't judge you for the things you say!)
As a final note (as I realise I've rambled on for quite some time now! Oops!), please do feel free to PM me whenever you like- it's rare to find another MND Carer on this forum and sometimes you really do just need to talk to someone who truly understands what it's like to live with it day-to-day.
I wish you and your husband the best <3
Yes, I work for the MND Association. It's quite strange working for people affected and living with MND and now being one of those people. The practice is VERY different from the theory. I've also done a lot of work with carers support services and carers centres and again. the practice of caring 24/7 is very different from the theory.
We are attached to the local hospital MND Care Centre which is really helpful and are due to see the palliative care consultant and respiratory consultant in a couple of weeks. After this weekend hubby is definitely at the stage where MND has hit squarely in the eyes (me too) and we've spent many emotional hours talking about the condition and how quickly it has deteriorated. Having his daughter visit has meant he has had to face the disease and what it has so far done in such a short space of time. He's starting to discuss leaving a will and we will be having end of life care conversations with the palliative care consultant.
Today has been a very difficult day, me and my husband usually pick each other up and hate to see the other upset. We've kind of took it in turns to cry! But I suppost it's much needed. We have a number of professionals visiting this week and husband has now said that he needs to have carers coming in to support him and give me a break so we'll be getting this ball rolling tomorrow.
I'm pretty wrung out today as I realise my lovely husband is fading away quite quickly. However, thank you (and everyone else!) for the kind replies.