feeling helpless

hi i care for my mum with motor neuron disrase living with me, my husband and toddler. i’m also 5 months pregnant and having complications with my pregnancy. because of this i am so worn out, my husband is so tired aswell with mums care packag. i am so drained and i keep getting angry for no reason, i know i sound heartless and i hate that i am writing this but i’m so tired of carers 4 times a day, scheduling my life around them, nurses coming by and making constant phone calls regarding my mums care. she is meant to be going in to respite soon but she doesn’t want to go so is dragging her feet co ordinariness with the nhs nurse even though we found places that would take her. my husband and i haven’t had one break for almost 18 months other than the odd day out if family can come by to look after mum. i love my mum so much but i feel like i don’t know who i am anymore and i dont think i can go the extra mile caring for her at the moment due to being so exhausted. luckily my husband does so much to help me but he’s at work and often comes home to me drained. i just need a recharge but i feel so guilty making mum go into respite when she doesn’t want to go.

Emma, you and your husband must INSIST that mum now moves into residential care, for the sake of your baby and your marriage. You are going to have to be very tough. Mum has no right to live with you, and if she’s having four carer visits a day that’s the maximum SSD will provide. INSIST that mum has an NHS Continuing Healthcare Assessment urgently. Look this up on Google, especially the checklist assessment.

we do have nhs funding since june so even if money was an issue ( my husband and me are willing to pay out of savings) apparently she gets respite paid for. i know she doesn’t mean to but she makes me feel so guilty like i’m abandoning her, it has been hard to get her the right care package etc but now we seem to have things sorted with her care it seems whatever my husband and i had left to give is just getting so difficult to muster up. my mum is in her 60s so is young and i guess she feels i’m putting her in a home, but i just need a break. we all bought a house together so i could care for her so i’m not working atm but the house is in both our names and i really don’t want her to go in the permanent care as i feel day to day if i wasn’t so tired and having pregnancy complications i would be better to look after her. i think she just wanted a everything from a care point- a live in carer, the pop in carers and me there but i can’t live like that nor do we have the space.

Residential care is going to be inevitable very soon if she has MND. Don’t put the future of your unborn child at risk, then once it arrives you are going to have your hands full in any case. If she were in her right mind she would know this and be offering you help. I know it’s an awful disease and you want to do as much as possible for her, but the baby has to come first.

Don’t do it!!

It’s not your responsibility to pay for your Mum’s care.

If mum is receiving NHS Continuing Healthcare already, then that will meet the full costs of her care.

Have you done any research into neurological care centres? I’ve had had a quick trawl around the internet and, on the whole, they seem bright and modern and take those aged from 18 upwards - perhaps not the elderly residential care home that you and your mum are envisaging?

thankyou pennie, i have researched the centre’s and there is one near us so we have got in touch with our nhs nurse to look in to them. i think what upsets me so much is i want to be able to look after her but my health is preventing me from doing it as well as i should be able to. thankyou for all the replies xxx

Hi, I’m sorry I can’t help you, but at least I want to wish you to be strong! You’ll overcome all the difficulties!

My son had to move into residential care at the age of 16, because of my health. Ruined by lack of reliable respite care. The longest he ever had away from me in all that time was 4 nights on a summer residential playscheme, that I’d been instrumental in setting up. I did my best, as you have done your best, but the time comes when someone NEEDS more than one person to care for them. Obviously not what I wanted, I cried buckets and buckets, but it was what my son needed. Residential doesn’t mean abandoning someone, far from it. It means knowing there is a team doing the day to day stuff, so that you can go back to a mother/daughter relationship, not carer and caree. You can visit mum as often or as little as you want, but you know she is safe. Don’t be too hard on yourself. But for your care she would have had no option but residential a very long time ago.

Hi Emma. Well done for caring for your mum all this time. Now it’s really essential that you put yourself and your baby first. Please try to rest and relax xx