19 year old carer

[EleanorRoss]

Some days I just sit and think about how much my dad has changed. Alzheimer's is so slow in its progression that I often don't notice how much he has changed.

First he was forgetting simple facts about me such as my age, my friends names or remembering to make dinner for when my sisters and I came home from school. Then his driving became careless and he was forced to stop altogether.

One day he bought my mum a Valentines card. I had to sit with him and basically show him how to spell and write again.

Then he was unable to cook. He used to be a chef so I found this particularly hard to watch.

Now he is a shell of his former self. I remember when I was a child my sisters and I used to laugh at him because no matter where we went with him, he would stop and talk to at least 5 people he knew. How he knew so many people I don't know. People absolutely adored him. They would go out of their way to talk to him.

His social skills are now non existent.

Today his daily routine consists of walks with our dog, day outs with his carer and watching television. It pains me to see him living like this. I always think to myself 'imagine if he could see himself right now?'.

What unfortunately makes everything twenty times worse is the fact that he is going to get gradually worse. I'm scared that I'm not cherishing the final years that I have with him. I don't want to live with regrets.

Sometimes when I get really upset about the whole situation all I can think about is the fact that he will not be there to walk me down the aisle on my wedding day. He will never meet his grandchildren. He will miss so many major events in my life and my sisters lives.

 

[jaymor]

Hello Eleanor and welcome to Talking Point.

It is sad you have to deal with dementia at such a young age but so glad you have found us and we can support, advise and offer friendship to you and your family.

For young carers there is a forum for carers age 19-25 that you might find helpful for chatting with carers your own age. www.matter.carers.org

Please use this forum too. Whether you want information, support or just to scream and shout as loud as you like when you are finding the going a bit tough then please do. We have all been there and most of us still are and we understand.

 

[marionq]

Eleanor I was struck by the love and respect you have for your father. That is what you have to hang on to. None of us can love dementia but we look after and safeguard our loved ones during this illness and that is the most we can do. If you can be happy and contented in his company despite his decline then he will be more comforted than seeing you upset.

I wish a good year for you both in 2016.

 

[rosemouse]

Some days I just sit and think about how much my dad has changed. Alzheimer's is so slow in its progression that I often don't notice how much he has changed.

First he was forgetting simple facts about me such as my age, my friends names or remembering to make dinner for when my sisters and I came home from school. Then his driving became careless and he was forced to stop altogether.

One day he bought my mum a Valentines card. I had to sit with him and basically show him how to spell and write again.

Then he was unable to cook. He used to be a chef so I found this particularly hard to watch.

Now he is a shell of his former self. I remember when I was a child my sisters and I used to laugh at him because no matter where we went with him, he would stop and talk to at least 5 people he knew. How he knew so many people I don't know. People absolutely adored him. They would go out of their way to talk to him.

His social skills are now non existent.

Today his daily routine consists of walks with our dog, day outs with his carer and watching television. It pains me to see him living like this. I always think to myself 'imagine if he could see himself right now?'.

What unfortunately makes everything twenty times worse is the fact that he is going to get gradually worse. I'm scared that I'm not cherishing the final years that I have with him. I don't want to live with regrets.

Sometimes when I get really upset about the whole situation all I can think about is the fact that he will not be there to walk me down the aisle on my wedding day. He will never meet his grandchildren. He will miss so many major events in my life and my sisters lives.

Sorry that you're going through this. It's so hard to watch a parent who was so competent and sociable, and all that your dad was, decline - I also share your fear that I am not making the most of this time where my mum is still functioning enough, that I'll regret things when she gets worse. But as hard as it is, you just have to live in the moment, for how they are now - deal with what you have in front of you, day by day, that's all you can do.

I hope that you get a small bit of respite over Christmas, and please post here if it gets too much. I'll no doubt be checking in at Talking Point when I'm at home and feeling low or frustrated. x

 

[sford91]

Hi Elenor
i am 24 and my sister is 22 our mam has recently been diagnosed with early on set dementia and what your describing sounds exactly like my situation with mum however shes doesn't sound as far as your dad yet. But i to feel your pain and mainly about the future with regards towhen I have my own children and when I get married, the onlky way i get threw it is not to think that far ahead at all literally take each day as it comes.

x

 

[Josiem6]

Hello. I'm 27 and my sister is 18. I care for my mum who is 57 and two years ago was diagnosed with Alzheimer's. She doesn't sound quite as far down the line as your dad buy I feel your pain. My sister doesn't help much with my mum and has moved to live mostly with my dad as she gets frustrated and embarrassed by my mum. I wish she was more like you and wanted to be involved in caring for my mum. I live an hour away but I just want to be with my mum all the time looking after every aspect of her life else she is alone in her house. I feel your sadness.


Sent from my iPhone using Talking Point

 

[Pb46]

Some days I just sit and think about how much my dad has changed. Alzheimer's is so slow in its progression that I often don't notice how much he has changed.

First he was forgetting simple facts about me such as my age, my friends names or remembering to make dinner for when my sisters and I came home from school. Then his driving became careless and he was forced to stop altogether.

One day he bought my mum a Valentines card. I had to sit with him and basically show him how to spell and write again.

Then he was unable to cook. He used to be a chef so I found this particularly hard to watch.

Now he is a shell of his former self. I remember when I was a child my sisters and I used to laugh at him because no matter where we went with him, he would stop and talk to at least 5 people he knew. How he knew so many people I don't know. People absolutely adored him. They would go out of their way to talk to him.

His social skills are now non existent.

Today his daily routine consists of walks with our dog, day outs with his carer and watching television. It pains me to see him living like this. I always think to myself 'imagine if he could see himself right now?'.

What unfortunately makes everything twenty times worse is the fact that he is going to get gradually worse. I'm scared that I'm not cherishing the final years that I have with him. I don't want to live with regrets.

Sometimes when I get really upset about the whole situation all I can think about is the fact that he will not be there to walk me down the aisle on my wedding day. He will never meet his grandchildren. He will miss so many major events in my life and my sisters lives.

Hi Eleanor, my husband has just been diagnosed, he's 50. However I have 2 daughters age 15 and 18, I was looking to see if there was any group on here for people their age when I spotted your post. Do you know if there is anywhere on here or a Facebook page etc where people your age can get together and support each other through this? I'm sure it'd be better sometimes to chat to people your own age, rather than us old uns. Xxxx

 

[Olivia15]

Some days I just sit and think about how much my dad has changed. Alzheimer's is so slow in its progression that I often don't notice how much he has changed.

First he was forgetting simple facts about me such as my age, my friends names or remembering to make dinner for when my sisters and I came home from school. Then his driving became careless and he was forced to stop altogether.

One day he bought my mum a Valentines card. I had to sit with him and basically show him how to spell and write again.

Then he was unable to cook. He used to be a chef so I found this particularly hard to watch.

Now he is a shell of his former self. I remember when I was a child my sisters and I used to laugh at him because no matter where we went with him, he would stop and talk to at least 5 people he knew. How he knew so many people I don't know. People absolutely adored him. They would go out of their way to talk to him.

His social skills are now non existent.

Today his daily routine consists of walks with our dog, day outs with his carer and watching television. It pains me to see him living like this. I always think to myself 'imagine if he could see himself right now?'.

What unfortunately makes everything twenty times worse is the fact that he is going to get gradually worse. I'm scared that I'm not cherishing the final years that I have with him. I don't want to live with regrets.

Sometimes when I get really upset about the whole situation all I can think about is the fact that he will not be there to walk me down the aisle on my wedding day. He will never meet his grandchildren. He will miss so many major events in my life and my sisters lives.

Hi Eleanor, I'm 24 now but I was 19 when my mum was diagnosed and I know exactly how you feel. I can't say that it gets easier as the disease progresses but I will say that you will still have some great moments with your dad. I know that's not always much comfort but it's what has always helped get me through, just the small things that have shown me that my mum is still there. She's very late stage now and sometimes I'll get a laugh out of her which always reminds me of who she really is. I wish you all the best and you can always private message me if you ever feel like you need to vent x