Hello,
My name is Helen and I am a Mum of 3, 1 still dependant (7 years old), married and we have my MIL living with us.
She is 76 with advanced multiple sclerosis. She is able to still brush her teeth (of a fashion) and toilet herself once Ive helped her get on the toilet. She can still feed herself but its a very slow process with some sort of choking at most meals. She has sustained kidney injury due to 2 bouts of urosepsis at the begining of the year so she has more utis than I can keep track of. She also had breast cancer operated on in October with most lymphnodes affected and removed so she has a poor immune system now.
My husband works away a couple to a few days a week and we live in a remote area of Wales so things can get quite stressful at times, especially when my husband is away and I have to call ambulances and keep my son thinking its all exciting to see the paramedics when its really very serious.
We are new to the area (2 years) so we are hours away from old friends and any family.
3 days after she came to live with us I had emergency surgery on a tumour that we did NOT know abt! 2 years on and Ive had 10 operations to try and fix the complications with no luck yet so Ive told my surgeon that whilst Im caring for MIL I wont agree to any more surgeries, he has agreed.
Im doing ok but I cant shake the tiredness.
Social services are very good and have arranged a carer to come and shower and dress her each morning and pop her into bed at night.
Also evry few months (sometimes longer, sometimes shorter) she goes to respite for a week. (My husband sees this as an opportunity to do LOTS of things we cant do when she is here…Ive tried to explain I just want to REST but he is a big strapping bloke of 6’7" and I dont think he knows what tired feels like?!)
I tried to do all her care myself for the first 4 months but with all my surgeries it was impossible!
I know I am very lucky as we have the room for her here but I NEVER imagined it was going to be so hard. I feel bad for even saying that but Im so tired…
Ive no experience with caring for severely disabled people and I didnt realise how consuming it is. Even at midnight I will wake up realising I havent done something ready for the morning or I didnt phone a health care provider that I was supposed to or I havent phoned for results of urine or blood tests etc
I have no ability to ‘put it out of my mind’ as my husband so often advises me…
Anyhow, what Im asking for here is advice, coping strategies, how to encourage a stubbornly(dangerously) independant person to let me assist more to prevent falls (which happen because she ‘thinks’ she is still capable) and to prevent illnesses due to not listening to advice.
I love her dearly but she isnt my Mum and her 2 sons havent got a clue because 1 of them doesnt see her hardly at all and my husband doesnt do any personal care (dignity and all that).
Also…I just dont KNOW anyone that cares for an elderly severely disabled non-relative so just some reassurance would be appreciated <3
Thanks in advance x