Early onset dimentia - Alzheimers and Frontal

[cov_girl]

Early onset dimentia - Alzheimers / Frontotemporal

Hi, my name is Kirsty.
It's taken me quite a while to build up the courage to post something on here!
My grandmother will be celebrating her 65th birthday in a few weeks time but has been fighting the disease for quicte some time now. She has early onset alzheimers / frontotemporal dimentia.
I am only 19 and i find it hard to have patience with her, part of me wishes i could flip a switch and she will be normal again. I find that in conversations and general activites i loose patience so quickly, then I get so angry with myself for not understanding her situation properly, then i end up feeling like the worse granddaugher in the world.
Am i alone in this? Does patience grow?
Sometimes I find myself making excuses to not spend time with her because I know that I will eventually loose my patience or feel embarrassed when i'm on public - does this feeling ever go away?
This is my main reason for finally getting up the courage to post on here - although my mum is supportive of our situation, i dont feel as if i can burden her with these questions because, it is, afterall, her mum that is loosing her memory; and what ever i a feeling, i'm sure she is feeling ten times more than me.

I guess I am hoping that this site will help me come to terms with what will happen and what to expect, and learn that i'm not alone in feeling this.

xx

 

[Izzy]

Oh please keep trying - you will get lots of help here. Take care. Izzy x

 

[donkey]

it will do you good to let things out and share your troubles with everyone on hear. keep on trying we are hear for you xx

 

[lastday]

the hardest part

you are already doing more than can be expected.your awarness is beyond your years,just think what your nan would have wanted you to do,visit often,give her a kiss and a cuddel,and let your mum know how well she is doing with this terrible illness.then get on with your life,knowing you are the future and can spread the word about helping us all.god bless

 

[DianeG]

Hi Kirsty,

Well done for posting on this forum. Be brave and you will soon find some great support in fellow posters on this site.

My mum is 57 with Alzeimers and I am constantly battling the same emotions as you. I'm afraid I dont have the answers but I do try to walk away take time doing something else then go back. You need strength and resiliance and more often than not it can feel like you supplies have run dry.

My only 3way of coping is the only way I know how...to be how mum used to know me....the chatty one, the blonde silly one, the one making her laugh with stories and the cuddly one too. You just be you, take time for you and enjoy any precious moments when she is good.

You take care

Diane
x

 

[sarah123]

Hi Kirsty,

I just wanted to reply to your question about patience and does it grow. My mum is 55 and was recently diagnosed with early onset alzheimer's. She hasn't been herself for years and trying to have a conversation with her was the most frustrating thing and she would often talk about things that I would feel inappropriate for a mother & child (even if the child is later 20's!.
I have found since her diagnosis that I'm a lot more patient & understanding, even though it is still frustrating to try and have an actual real conversation, I don't loose my temper as much because I know it's not her fault, so I guess to answer your question....I find that now I know why she is the way she is it makes it a bit easier to be around her.

I don't know if that helps at all, but I understand how you feel

 

[Bookworm]

Hi Kirsty - my husband is older than me by about 15 yrs & is 72 - he's probably been developing what i now see as so obvious but which is still not diagnosable - for at least 5 maybe nearly 10 years - but since we started attending memory clinic as things have worsened - my patience went out of the window - as I'm required to be patient in my work i have been shocked at myself - perhaps after nearly a year of impatience I'm coming through to a more calm & helpful manner - probably as he gets worse, maybe through accepting this is really happening, maybe as the mistakes he makes become not just annoying but actually very sad to watch. My son is 17 and at times he is impatient - but at his best - he is better than me at being patient. He is especially good on the phone to my husband - is the phone worth a try?

Keep posting Kirsty.....x

 

[Happy Dayz]

Hi Kirsty
What a mature individual you are!
Something that you may find useful is a publication called "Who Cares?" I think it's from the Department of Health, so look on the DoH website for it...it will give you more insight into the condition and may be of some help, not sure but I think it may also be free if you request it, if not try the library they should be able to help
Good luck and keep talking here on TP, it's a wonderful facility
Gayna x

 

[janlyn]

hi kirsty,
i have no advice but just wanted to let you know that i felt the same way as you, my husband has just been diagnosed with ftd and i to thought i was the only one that was going through the nightmare of this illness when i joined tp it made me so aware of all the pepole who are in the same boat i do hope you keep posting as it will help

regards jan xx

 

[Countryboy]

Hi Kirsty I shouldn’t worry to much take it from me I was diagnosed with Alzheimer’s in 2000 and after a MRI scan in 2003 which actually showed I had frontotemporal lobe dementia I was aged 60 however I continued in full time employment until my retirement at 65 now I am almost 67, ok maybe a pain in bum in some peoples eyes but I don’t care to hoots I still drive I have never had or needed a carer, unfortunately people with frontal-lobe can be verbally aggressive and in my case swear a bit if I’m left alone no problems.

Cheers Tony

 

[Wolfie]

Natural responses

Hi Kirsty
Sounds like you're experiencing ordinary human responses to frustration and gradual loss, so please don't beat yourself up. Can you find a way of releasing these emotions, singing or laughing work wonders, especially if you can share them with the other person who's also frustrated - your Gran.
You're doing a good job, keep your spirits up and keep in touch with all of us who are struggling with the same concerns.
Di

 

[caz1]

You are most definately not on your own. I see my mother very infrequently. She is only 60 and is quite a long way down the line. She is always worse than the last time and I find that very frustrating. I used to speak to her all the time on the phone, but now she doesn't know me and will not talk on the phone which I find really hard. When we get together it take me ages to get to grip with how she has changed. I hate it and wish we could live closer.