Help needed

[JSOEL]

Hi, I am new to TP so I will just say a little about my situation and hopefully I might get some great tips on how to make my mums and my life a little easier.
Here goes - My mum was diagnosed with dementia about 6 years ago and my dad was her main carer, even though that word could never be used and still can't. Sadly we lost our dad to bowl cancer in Nov 2012 after being diagnosed at the end of March 2012. My mum is just 75 and seems fit and healthy, we can have conversations but she is struggling now with getting the words, I know they are there but they won't come out of her mouth!!! My mum still lives on her own in the house she has lived in since 1978 so she knows where everything is and with sticky post its all over she manages to work all the appliances still. I have a hot meal delivered each eve Mon - Fri which is a god send and 3-4 times a week I take her out and once a week her sister takes her out. The other days of the week I go to check on her to make sure she hasn't hurt herself or broken anything.
My problem is I have 5 children who need me too, and of course a husband. I have a sister who lives at the other end of the country and a brother who lives round the corner but sadly lost his daughter the month before my dad to tragic circumstances. They have now set up a charity in her name and run it full time. My brother rarely visits our mum who gets very upset about it. He says he will go when he can and thats that.
My mum won't go to any groups that I have suggested, so I can't get her to meet anyone new, even though there are things out there that I think she would like.
My other problem is when I go on holiday I have no one to take over my role - if any one has a solution to this problem I would be very grateful.

 

[JSOEL]

Hi everyone,
I posted m first post yesterday and it says I have over 300 replies at the end of the post, but I am unable to access them.
Please could someone help me access them.

Many Thanks

JSOEL

 

[jenniferpa]

Hi there, I'm moving your first post into this thread. It was posted in a thread that had over 300 replies so I'm afraid it might have got a little lost.

 

[JSOEL]

Hi there, I'm moving your first post into this thread. It was posted in a thread that had over 300 replies so I'm afraid it might have got a little lost.

Thank you for your help x

 

[fullmoon]

Welcome to TP .

First condolences on losing dad. As he was mums main carer circumstances have changed and your situation needs to be re-assessed, you cannot be expected to fill his shoes as you have your 5 children and husband to think of. I am assuming mum has a social worker (due to meal on wheels?). If so I would contact them immediately and ask for an assessment. If mum still has capacity and refused services such as daycare/satillite clubs, respite for you to have a break/holiday I believe there is not much that can be done. Ultimately, as mum dementia progresses she will need more and more support which will put you under increasing pressure - so perhaps it's worth sitting down with her and social worker and explaining you cannot continue to maintain the level of support you have been giving. I realise this sounds harsh but it maybe the only way you can persuade her to accept help and services.

Others will be along with their thoughts too. Wishing you luck.

 

[annie h]

Hi JSOEL,
Everybody with dementia is different and it seems a long time ago that my Mum was at that stage (she’s now in a NH), but a few of the things you say struck a chord with me so here is my experience:
Day Centre: Mum insisted that she didn’t want to go to a day centre but the nurse in charge of the centre came to see her and managed to persuade her to give it a try. She didn’t immediately take to it but it gradually became a habit and then became a godsend. It was also a massive benefit ongoing as well because, as a specialist dementia day centre, they were a fantastic source of local knowledge and advice as Mum’s care needs increased over the years.
Siblings: I have two. They’ve both had excuses for not visiting for years. Sometimes they are good excuses but mostly they are obviously just excuses. Some people just seem to have a natural defence mechanism that leaves their consciences untouched when they leave all the work and worrying to someone else!
Holidays: Although Mum lived in a flat until 18 months ago it got to the stage where even with regular carer visits I didn’t feel it was safe for her to be on her own for longer than a day or two without me around. The problem isn’t the routine things, but the troubleshooting when something goes wrong and you have to try to establish what’s happened and organise help remotely. Eventually I got Mum to try going into a residential home on a respite basis when we were away. She never really wanted to, and it was incredibly painful getting her there every time, but once she was there she was fine and I was at last able to have some holidays without worrying 24 hours a day what was happening at home.
Meeting new people: this is a big problem for dementia sufferers because making friends really relies on taking on board lots of new information about the new people. Going out to unfamiliar places can be quite scary because you can’t remember the new people you’ve met, where the loo is and all those ordinary things we take for granted. A day centre is great for this because everyone there has similar problems!

That’s my experience but it’s not necessarily representative….

 

[annie h]

Jsoel, I forgot to mention the most important thing about siblings which is that if they don't visit frequently they do not understand your mum's care needs and therefore they shouldn't expect to, and you shouldn't let them, start telling you what is best for her. I hope you'll eventually find other caring people - friends, trusted carers or whatever- to support you who understand your situation properly as their input will be much more useful to you even if they aren't family members. Decision-making is a huge burden, but is only really helped by supportive and relevant input from people who understand the situation!

 

[itsmeagain]

Hi jsoel.
Well you really have a lot on your plate. Please try and get extra help for your mum. Your children need you and that is clearly the main thing. Cut down your trips out to 2 a week with mum, leave weekends for your children and maybe see how that goes.