Mum, 62 with FTD BV, cant work out how to get her the care and support needed

[syman]

Hi,
My mum was diagnosed about 9 months ago after a couple of years of gentle changes in her personality..... things are progressing quite quickly now, and dad is really struggling to provide a safe, gentle, accepting environment - making her symptons so much worse.

Other than the heartache and loss, we need some practical solutions. Does anyone have any experience they can share? We will be needing I think as a minimum a carer day to day - (I live too far and NHS provides nothing), and before long some kind of supportive care home that will cater for a quite well to do, fit and active lady....... There appears to be a lot of options if you are over 70, but mum still palays golf, tennis, loves to eat out and travel (even tho she gets more and more confused.
Any help of advice much appreciated.

She lives in West Norfolk.

THANKS!!!!!

 

[Saffie]

Hello and welcome to TalkingPoint. I am not sure how much I can help you but I can see that your post has not yet received a response and I'm hoping that my posting will bring it to the notice of someone who can help you more.

I would say that if your father is struggling then it might be time to ask the Social Services for a carer's assessment. This could then lead to an arrangement for carers to visit the home on a regular basis though, if your mother has capital over £23,250, it will have to be self-funded. I don't know how exactly this works as I never actually had any help at all for my husband and eventually a major operation causing a sudden deterioration in his dementia necessitated the need for his admittance into a nursing home..

There are various factsheets which can help you with this and I will try to find a link to post here later unless someone else does so first.

http://www.alzheimers.org.uk/factsheet/418

and possibly
http://www.alzheimers.org.uk/factsheet/454

Your father could also apply for Attendance Allowance which is is not means tested. I presume that either you or your father has arranged an LPA for your mother

 

[Helen33]

Dear Syman,

I would like to offer you a warm welcome to Talking Point.

My late husband had FTD. He, too, was fit, active and healthy apart from FTD. I found that Alan was able to have a good quality life with FTD but he needed one-to-one attention especially once confusion set in. I found the confusion wasn't memory loss but loss of intelligible speech and language. It really was important to find alternative ways of having positive communication which meant that I had a lot of learning to do. It would be unrealistic to expect Alan to change as he was suffering the effects of this disease. I eventually requested a speech and language therapist who was experienced in this field. She was marvellous and was able to point out ways in which my communication caused confusion or stress. Once I learned positive communication which may not be verbal communication, Alan became much happier and that meant that I was happier.

I hope that you find TP to be a helpful source of support and information.

Love

 

[sunset2013]

Social Services

Hi, it is always worth contacting social services help desk in your area as you are entitled to a Carers Assessment and your mother is entitled to an assessment of her needs. Social services usually have their fingers on the pulse re local services available so worth a call / email to them.

Hi,
My mum was diagnosed about 9 months ago after a couple of years of gentle changes in her personality..... things are progressing quite quickly now, and dad is really struggling to provide a safe, gentle, accepting environment - making her symptons so much worse.

Other than the heartache and loss, we need some practical solutions. Does anyone have any experience they can share? We will be needing I think as a minimum a carer day to day - (I live too far and NHS provides nothing), and before long some kind of supportive care home that will cater for a quite well to do, fit and active lady....... There appears to be a lot of options if you are over 70, but mum still palays golf, tennis, loves to eat out and travel (even tho she gets more and more confused.
Any help of advice much appreciated.

She lives in West Norfolk.

THANKS!!!!!