Mother recently diagnosed with Frontal Lobia

Kieranconcerns

Registered User
Feb 8, 2016
13
Hello all. This is my first post on this forum and I guess I'm hoping to reach out to people who have similar experience and or just some advice. My beautiful mum is 69 and has been a rock for my 2 sisters and my brother and I throughout our lives. It pretty much always been my mum as she and my dad divorced when I was very young. I'm 40 now, and the youngest of my siblings. One of my sisters is disabled and my mum has been her carer for mos her life.

After months and months of increasingly out of chapter behaviour, my mum was diagnosed last week with Frontal Lobia dementia. We are all devastated. It appears this form of dementia is one of the worse as there doesn't seem to be any treatment what do ever and a life expectancy of 8 years.

My mum currently lives with my disabled sister. My other sister who is cabin crew For an airline stays there 3 nights a week when she is in the country. I guess I want to know what I can do now to help my Mum now. I just feel so helpless.

I have applied for a POA about 3 weeks ago now. What else should we be considering or doing?

Thank you for reading
 

Countryboy

Registered User
Mar 17, 2005
1,431
Cornwall
Well I have frontal-temporal-dementia still going strong after sixteen and a half years providing I'm not unfortunate enough to have any other life threatening illness I know my FTD doesn't give me any pain or discomfort and I could go on for several years but I said may times on previous threads I'm only telling it from my own perspective and it may differ in others
 

Beate

Registered User
May 21, 2014
11,833
London
Don't take any notice of average life expectancies - everyone is different. You have very wisely tackled the LPA first so well done. You could also apply for Attendance Allowance for her (Age UK etc can help with the forms) and following that for council tax exemption on the grounds of severe mental impairment. Actually, I think if a relative other than the spouse is the carer, they can be exempt too, but call your council for details.

The next step would be bringing your Mum to the attention of social services. Ask for a needs assessment and a carers assessment for your sister. If she's disabled, she's vulnerable too and as your mum can't be expected to look after her with her own illness to deal with, they'll have to find a solution with carers etc for both of them really. Tell them they have a duty of care for vulnerable adults at risk.
 

Kieranconcerns

Registered User
Feb 8, 2016
13
Well I have frontal-temporal-dementia still going strong after sixteen and a half years providing I'm not unfortunate enough to have any other life threatening illness I know my FTD doesn't give me any pain or discomfort and I could go on for several years but I said may times on previous threads I'm only telling it from my own perspective and it may differ in others
Thank you for your response. Is frontal-temporal dementia much different to frontal lobia?
 

Kieranconcerns

Registered User
Feb 8, 2016
13
Don't take any notice of average life expectancies - everyone is different. You have very wisely tackled the LPA first so well done. You could also apply for Attendance Allowance for her (Age UK etc can help with the forms) and following that for council tax exemption on the grounds of severe mental impairment. Actually, I think if a relative other than the spouse is the carer, they can be exempt too, but call your council for details.

The next step would be bringing your Mum to the attention of social services. Ask for a needs assessment and a carers assessment for your sister. If she's disabled, she's vulnerable too and as your mum can't be expected to look after her with her own illness to deal with, they'll have to find a solution with carers etc for both of them really. Tell them they have a duty of care for vulnerable adults at risk.

Hi Beate, thank you for your response. I will certainly look into the services you mentioned. I guess we, my brother and sister and I ( there are 4 siblings) are worried that getting social services involved might mean they may want to take my disabled sister into care.
 

canary

Registered User
Feb 25, 2014
11,285
South coast
Thank you for your response. Is frontal-temporal dementia much different to frontal lobia?
I suspect that what the doctor said was "frontal lobe dementia". That, and frontal-temperal dementia comes under the same umberella category of Frontal Temporal Lobe Dementias (FTLD)

Well done for getting PoA sorted out - have you applied for both Finances and Health&Welfare? Has she also done her will? FTLD is different from Alzheimers/vascular dementia because it affects behaviour, judgment and if the temporal lobe is involved - speech.

This is the Alz Soc fact sheet on Frontotemperal Dementia https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167

This is a site in USA, but is gives a good understanding of FTLD http://www.alznc.org/index.php/alzheimers-similar-diseases/21-frontal-temporal-lobe-dementias