25 and looking after my dad with FTD

[Ceridwen92]

Hi everyone
My dad has frontal lode dementia which means he can't talk anymore and has very little cognitive understanding. I started looking after him when I was 17 (when he was first diagnosed) and have been living at home ever since. I live with my mum and together we look after him. It's been seven years now since his diagnosis and everyday is a challenge. However I am finding it harder now more then ever as I watch him get more and more confused. I find it most challenging when he is in pain and he can't tell me where it hurts, he just sits and cries and holds his head. This breaks my heart every time, all I can do is give him pain killers and hold his hand. Everyday I will sit and tell him about my day but it's so hard to know weather or not he understands me. My dad is very physically dependent now too, I shower and change him everyday. This is something I find so hard to do because he is my dad! I'm training to be a teacher at the moment and would love his advise so much. He use to be an aid worker in Africa and I know he would have had the best advise! I live in Dorset and wish there was a support group here. My mother goes to one and it has worked wonders for her! I don't feel like I can tell people about his condition becauseI feel like people get awkward around me and don't know what to say. Not many people my age even know what the illness it! So now I feel so isolated and don't know really where to turn too. I found looking through and reading people's' stories has made me feel like I'm not in this alone! So thank you

 

[canary]

Wow, I take my hat off to you.
My OH has FTD, although he is not so far along the path. You are so young, yet you have been dealing with this for 8 years. Wow.

Im pleased to hear that you are training to be a teacher - in with all of the caring you need to think about yourself too

PS - welcome to Talking Point

 

[Ceridwen92]

Wow, I take my hat off to you.
My OH has FTD, although he is not so far along the path. You are so young, yet you have been dealing with this for 8 years. Wow.

Im pleased to hear that you are training to be a teacher - in with all of the caring you need to think about yourself too

PS - welcome to Talking Point

It's part of my life now... I can't remember what it was like before! I do feel bad going to university everyday and leaving mum at home but I really needed something for me , ,which sounds awful when I say it out loud!

 

[canary]

No it doesnt sound awful and dont feel guilty about going to uni. When she was well would your mum have wanted you give up your future career? My daughter is the same age as you and I wouldnt her to do that. You count too, you know.

 

[Amy in the US]

You probably already know about this, but you can enter your postcode on the Alzheimer's UK website to see what services might be in your area, including support groups: https://www.alzheimers.org.uk/info/20011/find_support_near_you#!/search

You might also Google "Dorset dementia support group" and see if anything is near you. I turned up a group in Highcliffe that way.

 

[3825]

Hi everyone
My dad has frontal lode dementia which means he can't talk anymore and has very little cognitive understanding. I started looking after him when I was 17 (when he was first diagnosed) and have been living at home ever since. I live with my mum and together we look after him. It's been seven years now since his diagnosis and everyday is a challenge. However I am finding it harder now more then ever as I watch him get more and more confused. I find it most challenging when he is in pain and he can't tell me where it hurts, he just sits and cries and holds his head. This breaks my heart every time, all I can do is give him pain killers and hold his hand. Everyday I will sit and tell him about my day but it's so hard to know weather or not he understands me. My dad is very physically dependent now too, I shower and change him everyday. This is something I find so hard to do because he is my dad! I'm training to be a teacher at the moment and would love his advise so much. He use to be an aid worker in Africa and I know he would have had the best advise! I live in Dorset and wish there was a support group here. My mother goes to one and it has worked wonders for her! I don't feel like I can tell people about his condition becauseI feel like people get awkward around me and don't know what to say. Not many people my age even know what the illness it! So now I feel so isolated and don't know really where to turn too. I found looking through and reading people's' stories has made me feel like I'm not in this alone! So thank you

Hi,
So I was reading through stories and came across yours. My mum also has FTD dementia and she's 52, she was diagnosed about 1year ago, however it was going on for a year prior To diagnosis. She has all motor skills still but has very obvious signs of dementia, such as not knowing what day it is or where she is (when she is just in her home) sometimes forgetting who family members. She basically doesn't remember what she does day to day and will forget what she's done in an hour sometimes. I can understand what you mean when you just want your parent to give the good advice you knew they would have if they were still able to. I'm 24 and so many times I wish I could just speak to my mum like all of my friends do, and wish that she'd be my mum instead of me feeling like hers. For you to be doing it for 7 years is amazing and you must be so strong. I've only been doing it for 2 but it's awful watching your parent deteriorate at such a young age and slowly start to be less of a parent figure

 

[Artist85]

Hi,
I agree, you're doing amazingly well and should be proud that you're a caring and loving daughter who is juggling so much, so well at your age. My mum has also just been diagnosed with FTD but I've known for years that she has it. Not being able to get her advice and support in tough times has been heartbreaking, and at times can be tougher than watching her deteriorate. I was interested to know what support group your mother is accessing? I've checked what is available in my parents location but nothing seems appropriate for someone their age/someone with FTD. Singing groups and memory cafes aren't needed. My dad needs support in supporting my mum in these early stages - is that something your mum received? X

 

[Izzy]

I'm so sorry to read of your situation. Your love for your dad shines through.

I wondered if you have talked to anyone at the uni about your situation. I'm sure there must be someone responsible for pastoral care. If you haven't done so already I think it would be a good idea. They need to take your caring role into account. There may be times it has an impact on your work or teaching placements.

I'm glad you've found this forum.