When and where to get more help

[mahjx001]

My mum was diagnosed about 2 years ago and is nearly 91, she does really well, but a combination of the dementia and simple old age is meaning I am seeing more and more confusion and she is going down hill. She still lives at home and will not entertain moving anywhere else (accuses me of trying to take her home). She is prone to writing cheques and not remembering, to falls and not knowing why she has medication. There is not family apart from myself and my husband and we both work full time and I travel quite a bit.
The situation is running me down and I simply cannot be at mums during the week. It's like living 2 lives at once. Mum does go to a day centre 1-2 days do can go into town, she doesn't know what she has done on any day when I call and it is increasingly worrying. I want her to stay at home as long as possible, but how long?
Even though I have an assessment booked she won't get any help as she has more than the minimum savings, but I don't know what type of help to get.
I want some reassurance that when I can't be there she is ok or is eating etc. I know the issue is that she is getting worse, but not bad enough to go into a home.
Has anybody been in this situation and what did you do?

 

[fizzie]

It is quite hard to tell exactly where your mum is and how much help she needs but from what you have said she needs a lot more help than she is getting at the moment. We were in your situation but I lived 3 minutes away from my mum and we kept her at home but even with support it was really hard work

If she has more than the minimum savings then you are right she will need to pay but sometimes people need to pay so that they are safe and it doesn't sound as though she is coping to be honest.

She is extremely vulnerable if she is not remembering, she is financially vulnerable, from what you have said she is also physically vulnerable and she is at risk. You need to do something urgently.

Can she have more days at the day centre - I think our day centre charges about £45 a day with transport. If there is noone at home then she needs to be there every day.

Someone needs to be managing her finances and helping her with her day to day things, so she really needs day centre all day and carers going in morning and evening to make sure she is safe.

she won't be able to sort this herself, you will need to do it for her.
You can phone Social Services Adult Care Duty Desk and ask for an assessment - services like carers visiting to help with the daily routine/personal care or day care that should be an option - a day centre where they have lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days and there may be other lunch clubs in the area too

Some care homes also do 'day care' which can be useful but I would try the day centres first
This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

Do have a look at it
http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf



If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081.

I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.


The Dementia helpline is a useful number to have

Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday

I hope some of this is helpful and I'm sorry to be blunt but I think from what you have said she needs help urgently. At the very least I would go for a day centre/lunch club each day and a carer morning and evening and more at weekends

 

[mahjx001]

Thanks for the advice, I thought I needed to do something, but his is a learning process, so it's good to get somebody else's view. I have got the age uk number today so I will call them and get some advice as this will be a good start.

I hadn't realised mum could get the attendance allowance so will get that sorted.

I have an LPA, so have taken the cheque book and mum uses cash if she needs to unless I am with her then she can use her debit card.

Thanks again, it's hard but this forum is so helpful

 

[Sue J]

I have help through Age UK it costs £15.50 an hour. It took them a little while to realise that I needed a consistent person and not to be chopped and changed frequently as it was hard enough to let anyone into my home when I really didn't want to have the help. I still have it reluctantly because am used to being independent but do have a lovely understanding home help.

I hope you manage to get some suitable help for your Mum.

Best wishes
Sue

 

[mahjx001]

I have help through Age UK it costs £15.50 an hour. It took them a little while to realise that I needed a consistent person and not to be chopped and changed frequently as it was hard enough to let anyone into my home when I really didn't want to have the help. I still have it reluctantly because am used to being independent but do have a lovely understanding home help.

I hope you manage to get some suitable help for your Mum.

Best wishes
Sue

Thanks Sue, good to know somebody who has help you can trust, mum fights against the help too, by I have learnt that I need to stand my ground to do what's best

 

[mahjx001]

The past few weeks have been busy and we have had social services enablement team in morning and evening, doing mums medication and generally assessing the situation. In the interim I also have a private care company visiting twice a week for a chat and helping mum if she needs anything doing. Its all been a bit much for her, but the outcome is that the assessment has shown that she needs the daily am/pm help ongoing, not just for meds, but also for general checking that she is showering, eating properly. The good news is that now we have the care plan, I can get this set up permanently.
In some respects I am sad, as it is progressing fast, but i also feel a little received at having got help and support form mum. Even though I am the big bad wolf at present and she is fighting me all the way - I have learnt to let things pass me by and not get cross.

The info on compassionate communications from Fizzie is not rocket science, but it is a good reminder, as it is easy to lose it sometimes

http://www.ocagingservicescollaborat...y-Impaired.pdf

All I can say to anybody else in this situation is get help - you need it for you own health and wellbeing as well as the person you care for