Hi,
I am newish as in I have not posted anything before. I work full time but look after my mum who had a severe stroke 2 years ago and brother who has special needs. I do have carers come in 4 times a day to change and hoist mum to and from bed and a brother that comes in while I am at work but he says he just feeds them so I know I am lucky in that sense. However, at the moment I want to scream.
When mum came out of the rehabilitation centre (an absolute joke of a place). She was 5 stone and not eating. It took six months to turn this round as I would not give up on her despite what others told me.
It has been two years since I have been out. Carers turnup late to get mum out of bed. I feel like a lodger in my own home. I am not living just existing. I exist on 4 hours sleep a day and it is just work and home with nothing to look forward to. At times I get angry and just shout a bit as I do not have anyone to talk to and feel so isolated. Everything is a fight and I am just tired. I don’t regret looking after them and I am sure I just feel like this due to the time of year as I sure mum would not be here any if I’d put in a home and my brother is the loveliest person you could meet. Sorry for the long post but I thought typing this out would make me feel better.
Jane, something has to change, you can’t go on like this. Everyone is taking you for granted.
It will take a few posts to and fro to understand the whole situation, so here are a few initial questions.
Where do you all live? Who owns it?
How old are you, mum, and brother?
Does brother attend any day services?
When did Social Services last do a Needs Assessment on mum and brother, and a Carers Assessment for you?
When did you last have a two week holiday?
hi Bowlingbun
Thank you for your reply.
We all live together and I own the property.
Mum had an assessment earlier this year but I was not impressed.
Mum is 80, brother is 44 and I am 48.
I had a weekend away when my brother after
My mum but I took my brother away. That is the only break I have had.
In that case, you need an updated Needs Assessment for both of them and an updated Carers Assessment for yourself.
Make sure you get written copies and go through each with a fine toothcomb and keep going until they are accurate.
You, mum, and brother should each have your own advocate too, ask SSD to arrange this.
It’s vital you have a complete break, I find when I have 2 weeks in Crete that the first one is recovering, the second week I’m, ready to party with my friends. If you love them enough to have them in your house, then they must love you enough to let you have a break. It’s in their best interests.
Long term though, you need to think about your brother moving into his own home.
You also need to accept that mum and brother are more than happy with their personal slave, and the situation will continue until you force change. Expect mum to act like an elderly toddler, make a fuss, have a tantrum, but you must persevere. Also, you should have someone to help YOU. Do you have a dishwasher, use a tumble dryer, have a cleaner?
Are you sure your brother is claiming all the benefits which he is entitled to?
Hello and welcome!
Your family need help. Do you work? Can you afford to hire carers or not? Ask for a up to date needs assessment first for her. Some care providers can help you with household chores like cleaning, this is one option. Or you can pay a cleaner to come, there are lots of cleaning companies all over Britain.
Dear Jane
I’ve just read your post. I have been browsing this wonderful, supportive forum for a while before properly joining. I am new here too, but I think you’ve done an amazing job so far. I too am caring for my mum whilst trying to work full time. There is a lot of practical info provided here by many individuals. To get your mum eating again is an achievement in itself so well done and I wanted to ask how you managed this. My mum is also about 5 stone and hardly eating now. I am trying everything without success. Just reading this forum has given me strength when I’ve had some low moments so hopefully collectively you will gain some support. Wishing you calm and strength. Jane H
Hi Jane H
First of all thank you for your reply. Sorry for the delay but I have not been on to the forum since last week.
In answer to your question about food. It did take a while. I started off making soups in the first instance with lots of veg all smooth and when these were a success invested in a soup maker.
Meal wise it was soft foods such as cottage pie and a particular favourite corn beef hash. It did take about 5 months and lots of food got thrown away but it was a case of not giving up, particularly when all of the so called experts had written her off and I had been told to just feed shakes.
It iis a case of building up slowly with small meals which are soft and gradually introduce things. I am no expert but this worked for me with my mum. Hope this helps
Also I feel more positive than I did last week.
Jane
Thank you for your reply which I’ve just seen. Sorry for the delay, I’ve not looked on here for a while,Your love and persistence has made a difference. Well done you. I’ve been making lots of fresh soups, most go in the bin but I will continue and vary it. We’ve had two sudden family bereavements so I’ve got to the point of planning to take some time off work to concentrate on mum and my own well-being. I hope you continue to feel positive and look after yourself too. Thank you again.