Dad diagnosed with Frontal Temporal Dementia

[sarahlitsas]

My father who is 71 has just been diagnosed with Frontal Temporal Dementia. We believe as a family he has been dealing with it for about 8 years before diagnosis. My mother who is 69 and not that mobile is the main carer. I am the daughter and the good thing is that I am 5 mins away and I have been looking after them as much as I can. I don't believe in care homes but just want to know what's going to best for Dad.
He is from the UK and there he would be entitled to free care, but he doesn't want to go back to the UK. He is happy in Australia, but we know that the care costs could be very high. I have two brothers, one in the UK and one in Australia 20mins away. Does anyone know what the future holds with this type of dementia? Any ideas if care in a home is best or care at home? Should Dad go back to the UK or stay and live his dream here? Dad is very sporty and still walks every day. He has problems with swallowing but manages to get around it at the moment. The hardest part is false ideas and conspiracy ideas. He also circles the lotto numbers in a crazy way. I am quite happy to care for Dad from home. Any advice will be greatly appreciated as I do not know where this will lead. He is in the moderate stage now and could go into severe within 12 months.

 

[nikky]

Hi Sarah I totally understand your dilema, my husband (58) has just been diagnosed with frontal lobe too and we moved to Canada in 2011. How long has your dad been in Austrailia? How is your mum coping? How would she feel with him being back in the uk? I realise that care is expensive abroad but although its classed as 'free; in the uk its not really and still very dificult to get.I nursed my MiL at home for 18mths after my FiL had a heart attack and later died until she was in the later stages and really needed more care than i could give as 1 person. The sort of dementia your dad has is still quite rare and there isn't a lot of information on it as it is so different in every individual. There is a website called www.theaftd.org it tells you more about the disease although this site is a lot more supportive. It may take weeks or months to get your dad assessed etc in the uk and he would probably have to live with your brother? How would that work? I realise you have too much to think about and like me probably panicking about the future. My mil had it for 20 years and was fully functional physically until the time we needed more care. We even took her to cyprus for a holiday although she thought we lived there lol Is your dad aware of where he is?

We too only lived minutes from my in laws so i used to go morning and night, make sure they were up and had breakfast and a lady came in at lunch and i'd go back in an evening to help get ready for bed. FIL was paraplegic but had his marbles the closeness made it easy for her to move in with us when FiL had a heart attack. Unfortunately care is never cheap, emotionally or financially. Take your time to make decisions and look into all aspects of it. Its easy to go into panick mode because we get the diagnosis, it is a shock and terrifying but its amazing how much help there is out there when you start to look and ask questions. Are there any day centres near you, is he ready for that? Is there anyone local that would just help your mum with a bit of housekeeping and preparing meals? It just takes some of the pressure off you and another set of eyes with them.

My husband is still farming the disease is affecting him in different ways, all personality at the moment and rational behaviour so i just keep an eye on him. Its amazing how you learn to adjust and cope.

I hope i have been of help and am sure someone else will come along soon that has been in your situation and maybe able to advise you better.

Use this site for all your frustrations and questions, i have found it a god send

Nicky

My father who is 71 has just been diagnosed with Frontal Temporal Dementia. We believe as a family he has been dealing with it for about 8 years before diagnosis. My mother who is 69 and not that mobile is the main carer. I am the daughter and the good thing is that I am 5 mins away and I have been looking after them as much as I can. I don't believe in care homes but just want to know what's going to best for Dad.
He is from the UK and there he would be entitled to free care, but he doesn't want to go back to the UK. He is happy in Australia, but we know that the care costs could be very high. I have two brothers, one in the UK and one in Australia 20mins away. Does anyone know what the future holds with this type of dementia? Any ideas if care in a home is best or care at home? Should Dad go back to the UK or stay and live his dream here? Dad is very sporty and still walks every day. He has problems with swallowing but manages to get around it at the moment. The hardest part is false ideas and conspiracy ideas. He also circles the lotto numbers in a crazy way. I am quite happy to care for Dad from home. Any advice will be greatly appreciated as I do not know where this will lead. He is in the moderate stage now and could go into severe within 12 months.