Feel terrible: I feel ill but I am caring for my... - LUPUS UK

LUPUS UK

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Feel terrible

kt11 profile image
kt11
5 Replies

I feel ill but I am caring for my mom who has dementia. She moved in with me and my sis who works 10 hours a day. I work 10 hours a week but am struggling with that. I'm just so tired. We have 3 brothers, one who has health issues, one who has a young family and one who lives 500 miles away. My sis messaged them to ask for help but it's difficult for all of them and I don't think they can help. I'm just reaching out really, is anyone in the same situation? I would just like a break

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kt11 profile image
kt11
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5 Replies
Serser profile image
Serser

Hi kt11,

Have you been in contact with your local social services in order to arrange a carers assessment?

I’m a memory service nurse when I’m not I’ll! So I assess situations like yours and often refer to social services, but you can self refer. You just need to go onto your local council website and look for a contact number for adult social services, give them a call, explain, and an assessment should be arranged.

We also have local carers networks/charities that can offer respite and support eg NEWCIS in our area. But there will be different charities for different areas. If your mum has had a memory service nurse or social services in the past they’ll be able to put you in touch with anything locally that’s going on.

They’ll also be able to help inform you of any day centre type groups that can often be run in local homes during the day. This can sometimes benefit families/carers by offering a break during the daytime. It can also be a really empowering experience for Mum too as it gives her time away to do something different. Sometimes (depending on carers assessment outcome) you may get a contribution towards paying for day care, but sometimes (again depending on area and assessment outcome), you won’t- it’s assessed on an individual basis.

It might also be worth getting in touch with the Salvation Army and the Red Cross as they sometimes run groups and provide all sorts of assistance to help families in a similar situation to yours.

You need the support! I’ve seen first hand how full on things can be, not to mention struggling with lupus at the same time.

These areas networks often have opportunities for other carers to meet and talk, which can also be really beneficial and help to reduce your stress. Also carers are often experts in what they do so everyone shares the latest info on local amenities, perks, respite, what works/doesn’t etc etc.

If you can arrange some respite for yourself, I think you’ll find relationships in general all round will improve. That’s half the battle sometimes!

As time goes on you will undoubtedly need more support, so it’s worth starting the ball rolling now before it snowballs and all becomes too much to cope with.

You could also contact either your local memory service or your older persons nhs mental health team/older persons community psychiatric nurse team and they’ll be a wealth of knowledge to help you to get the support you need.

I hope that helps a little!

I’ll have a look on the net for some generic, national support charities that may be able to offer further help/advice.

Take care of yourself chucks!

X

kt11 profile image
kt11 in reply to Serser

Thank you Serser, that's very helpful xx

Serser profile image
Serser

nhs.uk/conditions/social-ca...

carers.org/article/how-pay-...

alzheimers.org.uk/get-suppo...

ageuk.org.uk/information-ad...

salvationarmy.org.uk/older-...

Hopefully these links should get you started, but there will be area specific groups and charities working in your area too.

Probably the way to sustain the situation is to try to arrange some regular respite. This will give you the means to rest and be able to carry on. Definitley a conversation to be having with social services.

I hope things start to improve-take care of yourself x

leslieliesel profile image
leslieliesel

I was DX'd about a year ago at 62...My MIL is 90...she visited my husband and I for a few days with my husbands sister. My husbands sister took total care of her...she is sharp and sweet yet can not get around without help.....If her daughter wasn't here with my MIL, I wouldn't have been able to take care of her...just too much...when I was younger I did take care of my mother and children, with energy to spare...not now...sons rarely are able to help.....My Best to you

xxliesel

kt11 profile image
kt11 in reply to leslieliesel

Thank you liesel xxx

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