I have just joined this group and this is my first post! I am 25 years old and still live at home with my parents. My dad has progressive multiple sclerosis and my mum is his full time carer. Since Corona he has deteriorated rapidly and becoming harder to deal with. He is usually such a positive person but we are losing that side of him. I have been working from home so have been able to be around much more to help. Usually i work 9-6 and then help when I get home and on weekends.
I now have a boyfriend and I want to move out soon but I feel such guilt leaving my mum to care for my dad as he becomes more difficult. There relationship has deteriorated as she has become more of a carer than a wife. I know she doesn’t want to carry on as a carer as she has been doing this for 22 years and is 58! My dad also doesn’t show any appreciation towards my mum for everything she does for him and for giving up her life to help him. I am so worried about them both and don’t know what I can do anymore to help. I feel like my whole life has been dedicated to being around and helping and now I am finding it all too much. I feel so stressed about it and I almost feel selfish that I am moving out and leaving them both as I know neither of them are happy.
To add to it all we rent our house so can’t adapt it in any way to help him which is know is making everything much more stressful as it all becomes more difficult without the right equpitment. Since his MS our finances have been very difficult which we all know adds to an already stressful situation.
If anyone has any advice or feels like they are in the same position it would be great to chat!
The assessment can be done together or individually. From what you are saying individually maybe better. Mum can have an assessment even if Dad refuses one. It maybe a good idea to support Mum with hers. It’s her choice and the process is about her. You may well need your own. Even though you are moving out you are still entitled.
You Mum needs to link up with some local support groups.
Hi Mariella. You sound like a lovely daughter and I’m sure everyone reading your post will agree with what I’m about to say.
You deserve to have a life of your own. You have helped your mum and dad for many years and by doing so have made many sacrifices. Now it is time to get a place of your own and start to do the things you want to do. You’re be able to visit your parents at weekends and when it suits you. Your mum and dad had their freedom when they were younger.
If your dad has mobility problems then perhaps your parents would be better in a bungalow or a ground floor flat. Other friends on this site will be able to offer you more advice on this.
I wish you well,
Karen D
Thank you so much for your reply Karen, I often feel guilty and like I am doing the wrong thing here. It would be ideal for my parents to get a bungalow but unfortunately we are in rented accommodation and aren’t in the financial position to get a bungalow they can adapt. Thank you for your kind words xx
Hello,
Thank you so much for your reply! I will show all these links to my Mum and hopefully we will be able to sort something. I think because we have all cared for so long and my Dad is now really struggling with his mobility he is worried about getting someone else in to look after him. (He is a proud man so its very difficult)
We are in privately rented accommodation but can try and look at housing associations but I know we have struggled with this in the past as they can never provide us with something suitable for my Dads needs.
I really appreciate all these links and will look into them, hopefully they can help my situation!
Thank you for all your help xx
Mariella,
Can I ask how old dad is, and why he has mobility problems himself?
How much help does he need?
It is incredibly SAD to have parents who are disabled, but their illness was not caused by anything you do, so don’t feel guilty. Every time what we call the “Guilt Monster” rears his ugly head, tell him to go away. It’s not your fault.
As both mum and dad are disabled, they should get lots of help from Social Services. It’s quite possible that mum is entitled to something called NHS Continuing Healthcare, all the care she needs, free of charge, provided by the NHS. It’s something of a postcode lottery, but worth investigating. Initially, look at the CHC “Checklist”.
After I was disabled myself in a car accident, I couldn’t do much for mum. In effect, I became her care manager, rather than hands on provider. I made sure that she had what she was supposed to have. She lived 6 miles away, on her own. Carers were arranged 3 times a day, and they did all the dressing, feeding and washing. She had a gardener, and someone to do her ironing and shopping. Whenever I visited there were always odd jobs, but all the basics were covered by someone else. Maybe you could think of doing something similar?
Has your education suffered? What dreams for the future do you have?
My Dad is 58 and suffers from Multiple Sclerosis, my mum is his full time carer. Myself and my brother help as much as we can. He is now struggling to use his wheelchair and mostly sits in his armchair most the day.
The guilt for trying to have my own life is so hard as I feel bad on both my parents. I feel like I’m not helping my mum enough with the physical side of looking after my dad and not being there enough for my dad. Its such a hard feeling to shake off!
Thats amazing you were able to do that for your mum. I feel like whenever we speak to social services we struggle to get things going. As we are in rented accommodation we keep hearing that we need a hoist in the house in order to have a carer come in and help, however our landlord won’t allow it! So it feels like we are always stuck! I would love this to be an option though as I am worried about my mums mental and physical health looking after my dad. I know me and my brother will move out in the next few years so its becoming something I’m really feeling stressed about!
I didn’t go to uni as I didn’t feel like it was the right thing to do because of my dads illness and needing to be around to help. I would love to move to London and live with my boyfriend (I am originally from Manchester) but it just feels like such a selfish thing to do considering I will be leaving everyone here with less help.
Sorry to ramble I feel like at the moment I have so much going on in my head about it all and don’t know which way to turn! xx
Its a private landlord, they won’t allow us to have a hoist or a wet room downstairs. (We have had to adapt a downstairs room into a bedroom as the house isn’t suitable already for my dad) Social services then won’t allow us to advertise for a carer without us having these things x
