I Need Advice Please

[LuceRider]

Hello,

I'm in need of some advice and I'm not sure where to go... I've often come back to this forum over the last year or so to read posts but this is the first time I've found myself needing to post on it, so bear with me.

My Mum has been a victim of Alzheimers for a few years now, but in the last month she seems to have entered a much deeper phase of the disease.

She lives at home with my Dad, who has been her carer since the beginning. We've always said this set up won't change for as long as she's happy, but as she's becoming increasingly more confused and forgetting the basic things about her life, I can tell she's just not as happy as she used to be. She is frequently upset and agitated, crying, behaving in a manic way, misunderstanding who she is talking to in an extreme fashion, and is having quite regular periods of feeling lost, alone and unloved. This is all despite the amount of people she has in her life looking after her, including my devoted Dad.

I know this will be down to the nature of the illness too, but it's making it really difficult for her to be cared for by my Dad. He cannot seem to make her happy and she's becoming really hard to manage, to the point where he will lose his temper and run out of patience. However, he is adamant that she cannot go into a home until she's pretty much completely out of it, and although I think she will need to go into a home before this happens (for his own sanity if not anything else) she's not at the stage of a care home just yet.

So I wondered if there's any middle ground with home visits from professional carers. Are they provided by the NHS or do they have to be paid for? What are the options for this middle ground stage of care for someone with Alzheimers?

Any advice or direction would be massively appreciated...

 

[ElaineW]

Home care from professionals

Hi Lucy - I feel your distress with all of this. I have been caring for my mum who is 81 with AD for the last 6 years and have been finding things extremely challenging at times. I am like your dad in that until my mum gets to the stage where she doesn't know me (if she does - this doesn't always happen) I cannot contemplate putting her into a home. To help me cope my mum gets 3 visits a day (I live in Bristol) where the maximum number of visits per day is 4) - not sure if this will be the same with your City Council. What you have to pay depends on the amount of savings your mum and dad have/pensions etc, it's all taken into account. A financial assessment will be arranged which does take some time to sort so I suggest you get the ball rolling if you want it sooner rather than later. I hope this helps.

Elaine xx

 

[Izzy]

Hello and welcome to TP.

I wondered if your mum has had an assessment of her needs (a Community Care Assessment). Part of this is a carer's assessment which could involve your dad. This is an Alzheimer Society fact sheet about it -

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

I hesitate to talk to much about the process as I live in Scotland and the process is likely to be different here. The fact sheet sets out what happens though.

 

[LuceRider]

Thank you both for the response. Will have a read of the fact sheet and investigate the financial side of it.

It's so frustrating to not just be able to solve this with a quick Google search! I really appreciate the help!

 

[Kevinl]

It's so frustrating to not just be able to solve this with a quick Google search!QUOTE]
If only there were a solution a "quick google search" won't help on this occasion. Regrettably there isn't the only solution is the old fashioned 3 dimensional people who you need help from now, OK we may be in cyberspace but we are real none the less.
You need a carers assessment organised by the DSS so her needs can be quantified but it isn't easy. From this you'll be told what will and won't be paid for and what is available, regrettably this is often not very much. Sorry but that's about as good as it gets.
K

 

[Cole_H]

Thank you both for the response. Will have a read of the fact sheet and investigate the financial side of it.

It's so frustrating to not just be able to solve this with a quick Google search! I really appreciate the help!

I care for my mum and she was accessed and was allowed four visits a day, each lasting 45 minutes. My mum gets pension credit and has little savings so the amount she needed to top up was around £50 a month. I believe 4 visits a day is the max allowed by most local authorities, I might be wrong but that is my understanding.

But to enable me to go back to work after 13 months of full time caring I have had to to increase the carer visits and pay for the extra myself. The extra costs a lot but worth it to me for peace of mind, I do the care in the evening.

But they also have a pot of money for respite care, when I was struggling they offered this. I declined for it to be used to put my mother into respite, instead the money enabled a fulls day care for a week.

I found they were not forth coming with this information and it was mentioned in passing.

What you get offered is based on an assessment of needs and finances. I think if you have over 20 thousand pounds in savings they won't fund it. Owning your own home doesn't come into it. They even built my mum a bathroom downstairs.

But it all comes down to the local authority, my one is quite well off, we are moving and I'm a bit worried that we won't get the same amount.

If your mum is at the stage where she is unable to do personal care, then a carer coming in the morning to do that would make a huge difference and to do the breakfast.

We have one great carer who my mum loves to see, it really seems to help her having someone outside of the family.

Outside of carers you could also ask for an anti depressant, that really helped my mum.