Trying to accept why at 25 I have to deal with my dad having early onset alzheimers

[Kevinl]

I understand how you all feel on here our youngest was 16 when my wife (his mum) was diagnosed with AZ and our oldest 24, they never had their mum see them get their degrees, never saw our daughter get to go to the ceremony (if that's the word) when she gets to put Doctor in front of her name and won't be there when our daughter gets married next month.
It does seem to be a common thought that feeling resentment and distancing yourself from the situation is an answer but that just makes it someone else's problem.
Our children don't want to be involved in their mum's care...good for them, I can cope, something, apparently they can't. I don't "snap" or "get angry" it's a disease and if the people who should love her don't anymore then how can you expect care staff who are paid to care do that either.
It's a world of **** but I'm not prepared to give up yet, it's a marathon not a sprint and it would seem our children are sprinters, me I'm there for the long haul, I have to as I know that's what she'd do for me if it was the other way round.
K

 

[Norfolk Cherry]

Naomi, my heart goes out to you. You are very young and your reaction is very normal as you can see from the posts on here. Age and experience can help some people deal with the stress and unbearable pain of dealing with our loved ones slow decline, but you have neither, so don't be hard on yourself lovie. It's as if you have no tools in your box to do the job. See if you can get some counselling sessions to get your feelings out and work out a way of living with this. Take care, your dad would totally understand your feelings as he loves you, so don't feel bad.

 

[Spamar]

Kevin, the word you’re groping for is congregation. Took me years to remember the right term!

 

[LynneMcV]

My husband was officially diagnosed at 58. Our son was 18 and daughter was 20 but, as is usually the case, my husband had shown signs for several years prior to diagnosis, so much of their teenaged years has been impacted by their father's changing behaviour.

There is no right or wrong way to act and our son and daughter approached matters in completely different ways. My son automatically grasped the situation and was happy to take guidance from me on how to handle different scenarios as they unfolded. I wouldn't say that he found any of it easy, but he bit the bullet and did whatever was needed.

My daughter, on the other hand, spent the first four years after diagnosis working on the belief that her father was somehow in control of his actions and could do better if he tried - but that he didn't want to.

It wasn't until my husband first went into a secure unit following a crisis that it finally hit her that he really was ill - and from then on her attitude changed.

She could never bring herself to be a hands on carer, and fair enough, why should she? He wouldn't have wanted that and I was able to do that myself anyway. However, what she did do was help in other ways - ie sit for an hour with her dad while I caught up on sleep, pick up things from the shop if I'd forgotten something, collect medication if her dad was too restless for me to take him out, give her dad a hug and show him various medals she had won from a variety of marathons she was taking part in.

She was never at ease with her dad's illness and it definitely didn't get easier as the disease progressed, but by helping and supporting me, she was still helping and supporting the care and well-being of her father.

I suppose what I am trying to say is please don't feel guilty if you cannot bring yourself to do what you think is expected of you. See what you can do to help in ways that are more comfortable to you. As the disease progresses your mother will welcome support in whichever way you feel able to give it.

My husband passed away nearly three months ago now and I can honestly say I do not value the help offered by either one of our children as being better or worse than that offered by the other. They each played a huge part in caring for and helping me care for their father and it was because of them both that I was able to see things through to their conclusion.

By being part of it all in their different ways, both our son and daughter grew closer to their father, learnt patience and acceptance, put aside any past hurts or misconceptions - and I would say we all came out the other side of things much stronger than ever as a family.

 

[sford91]

I completely understand how you feel. My dad was diagnosed when I was 26 and was suffering a while before that. I am 30 now and my dad is actually in hospital as I type this and unfortunately isn't going to make it. I am sad knowing I won't get to share special moments with him like having children with my husband, his retirement, family holidays etc. Stay strong and keep your good friends and family close xx

sorry to read your post about your dad. Thinking of you and look after yourself x

 

[Amlama88]

sorry to read your post about your dad. Thinking of you and look after yourself x

Hi and thanks for your reply. My dad passed away on 1st Sept. It's really hard to grieve because I feel I was losing dad for the last 3 yesrs. I hope you are okay and keep in touch if you need anyone to talk to x

 

[Amlama88]

My husband was officially diagnosed at 58. Our son was 18 and daughter was 20 but, as is usually the case, my husband had shown signs for several years prior to diagnosis, so much of their teenaged years has been impacted by their father's changing behaviour.

There is no right or wrong way to act and our son and daughter approached matters in completely different ways. My son automatically grasped the situation and was happy to take guidance from me on how to handle different scenarios as they unfolded. I wouldn't say that he found any of it easy, but he bit the bullet and did whatever was needed.

My daughter, on the other hand, spent the first four years after diagnosis working on the belief that her father was somehow in control of his actions and could do better if he tried - but that he didn't want to.

It wasn't until my husband first went into a secure unit following a crisis that it finally hit her that he really was ill - and from then on her attitude changed.

She could never bring herself to be a hands on carer, and fair enough, why should she? He wouldn't have wanted that and I was able to do that myself anyway. However, what she did do was help in other ways - ie sit for an hour with her dad while I caught up on sleep, pick up things from the shop if I'd forgotten something, collect medication if her dad was too restless for me to take him out, give her dad a hug and show him various medals she had won from a variety of marathons she was taking part in.

She was never at ease with her dad's illness and it definitely didn't get easier as the disease progressed, but by helping and supporting me, she was still helping and supporting the care and well-being of her father.

I suppose what I am trying to say is please don't feel guilty if you cannot bring yourself to do what you think is expected of you. See what you can do to help in ways that are more comfortable to you. As the disease progresses your mother will welcome support in whichever way you feel able to give it.

My husband passed away nearly three months ago now and I can honestly say I do not value the help offered by either one of our children as being better or worse than that offered by the other. They each played a huge part in caring for and helping me care for their father and it was because of them both that I was able to see things through to their conclusion.

By being part of it all in their different ways, both our son and daughter grew closer to their father, learnt patience and acceptance, put aside any past hurts or misconceptions - and I would say we all came out the other side of things much stronger than ever as a family.

It's awful your children were so young. O found it hard enough in my 20s, just be even harder in their teens. I understand the pain they must feel. My dad passed away 3 weeks ago and I've been thinking about how I will never share the joy of my first child with him...but at least he walked me down the aisle; even with the alzeimers already taking hold. Your kids are lucky to have a strong mum xxxxxx

 

[sford91]

Hi and thanks for your reply. My dad passed away on 1st Sept. It's really hard to grieve because I feel I was losing dad for the last 3 yesrs. I hope you are okay and keep in touch if you need anyone to talk to x

I feel like everyday is a constant battle of grief/guilt deep down I suppose I am very good at keeping a lid on how i feel, thoughts and feelings etc not entirely sure how but I do it but my friends always joke to me and say one of these days you'll crack, given everything else we have been through in our lives however that day is yet to come ( obviously I hope it never does!) I think eventually there will be a time when I need to talk to somebody but that time is not now I dont think i would know what to say to to entirely honest. I just take one day at a time and makes the most out of the good days which currently there is lots of and these outweigh the bad. Mum is happy and safe in a care home. This weekend is her 60th birthday..and its never how we thought we would celebrate in a care home with a few friends and family ( most her friends haven't bothered with her since having dementia this is what makes me the most angry). Sorry for the long rambling xx

 

[sford91]

It's awful your children were so young. O found it hard enough in my 20s, just be even harder in their teens. I understand the pain they must feel. My dad passed away 3 weeks ago and I've been thinking about how I will never share the joy of my first child with him...but at least he walked me down the aisle; even with the alzeimers already taking hold. Your kids are lucky to have a strong mum xxxxxx

Again i think about this alot I am not yet married or have children yet and these are all things I feel and at times feel like I put alot of pressure on my relationship with my partner to do things because mum hasn't got time left however I also realise i cant push these things xx

 

[cheyelise]

My Dad has recently been diagnosed with early onset Alzheimer’s. Although I felt like I could see this coming for a while I still can’t quite get my head around things.

I feel angry and frustrated as well as the obvious sadness. Alzheimer’s has only been something I have ever known people in their 70’s or 80’s to suffer from. I feel like my dad has been taken away from me. As someone who I grow up with working so hard to provide for our family it is now very difficult to speak to him for him to hardly be able to string a proper scentence together. I find myself being short with him even though I don’t mean to be. I just feel like I can’t cope or handle it very well.

I feel selfish when I think about what I am loosing because of this and how I act around him. I want to support and be there for him but at the moment I can barely stand to be around him which makes me feel like a horrible daughter.

Has anyone else had similar feelings? Or any advice on how to deal with the situation? I know how sound like a really horrible person. I feel like my instant reaction to dealing with it is to be distant with my family almost putting my head in the sand.

It would be really good to speak to others in the same situation, wishing you all the best and my thoughts are with all other people in this horrible situation.

Hey Naomi,
I can completely sympathise with you - i have been looking for someone in a similar situation as me for what feels like forever.
I'm currently 17 but my dad was diagnosed with early onset dementia when i was 15. I have really struggled, and still continue to struggle, with everything that comes with the diagnosis, as well as dealing with every day life. Nothing is the same anymore.
I would love to chat to you as we're very close in age and think we would have a lot in common in regards to our dads!
Hope you're well,
Cheyenne

 

[AaronH]

Hi, I feel like I can relate a lot to this thread. I’m 20 and my dad is 59, he was diagnosed in November last year, and recently I have found myself having much less patience with him as he has declined some in the past couple of weeks. I think I snap sometimes because I’m angry. Not at him but at the situation and then I feel so guilty I cry every night when I’m alone. It’s a horrible horrible feeling but I can’t help myself sometimes

Cath,
I have been in a similar position to you as my mum was diagnosed when I was 18 and I watched her deterorirate very quickly. I sometimes lost my patience and felt incredibly guilty for snapping at my mum, I still do and I’m not 23 now. I am looking for people our age that could talk about our experiences because I’m finding it very difficult to Cope with nowadays. Hope you’re well well,
Aaron

 

[Little Sunshine]

I have just cried reading this thread. Everyone is so brave.

I’m 28 and my Dad is 63 and we almost have a diagnosis of early onset. I feel so angry and sad that this has happened to me and my Dad at this stage in our lives and not in another 20 years when it may be more expected. I’ve just got my life together (bought a house and got my career out track) and now this. It feels so unfair but I just always try to remember how it’s not his fault. And I have had my Dad for a lot of years whereas some people don’t get one at all. It’s hard to remember that sometimes when I am mostly so bitter that this happened.

 

[Duggies-girl]

I have just cried reading this thread. Everyone is so brave.

I’m 28 and my Dad is 63 and we almost have a diagnosis of early onset. I feel so angry and sad that this has happened to me and my Dad at this stage in our lives and not in another 20 years when it may be more expected. I’ve just got my life together (bought a house and got my career out track) and now this. It feels so unfair but I just always try to remember how it’s not his fault. And I have had my Dad for a lot of years whereas some people don’t get one at all. It’s hard to remember that sometimes when I am mostly so bitter that this happened.

Hi it's me again and yes it is unfair and you will feel bitter about it but it is what it is and can't be changed. I am bitter because I should still be working and enjoying life but I am not and I am angry that my clever, kind, wonderful dad has dementia but I am 62 and dad is 88 and I have got used to it now.

It is hard for me but I think it must be even harder when you are young because it was never part of your plan, in 20 or 30 years time maybe but not now. I don't know what to say other than take one day at a time and try to support your mum who is also feeling the same.

Expect every emotion under the sun to arise because they will. It is going to be hard but if you and your mum can support each other then you can possibly start to look ahead but probably not yet. Just accept any support that you can get and carry on with your own life as much as you can because you are young and have a lot to live for and that comes first. Your dad would say that I am sure. So don't feel guilty about emotions because we all get them and we can't help it.

Stay strong but keep your own life because it is important.

 

[Little Sunshine]

Hi it's me again and yes it is unfair and you will feel bitter about it but it is what it is and can't be changed. I am bitter because I should still be working and enjoying life but I am not and I am angry that my clever, kind, wonderful dad has dementia but I am 62 and dad is 88 and I have got used to it now.

It is hard for me but I think it must be even harder when you are young because it was never part of your plan, in 20 or 30 years time maybe but not now. I don't know what to say other than take one day at a time and try to support your mum who is also feeling the same.

Expect every emotion under the sun to arise because they will. It is going to be hard but if you and your mum can support each other then you can possibly start to look ahead but probably not yet. Just accept any support that you can get and carry on with your own life as much as you can because you are young and have a lot to live for and that comes first. Your dad would say that I am sure. So don't feel guilty about emotions because we all get them and we can't help it.

Stay strong but keep your own life because it is important.

Thank you! Yes I really will try to carry on with my own life as it has certainly taught me that life is short!

 

[Naomi25]

Hey Naomi,
I can completely sympathise with you - i have been looking for someone in a similar situation as me for what feels like forever.
I'm currently 17 but my dad was diagnosed with early onset dementia when i was 15. I have really struggled, and still continue to struggle, with everything that comes with the diagnosis, as well as dealing with every day life. Nothing is the same anymore.
I would love to chat to you as we're very close in age and think we would have a lot in common in regards to our dads!
Hope you're well,
Cheyenne

Hi Cheyenne,

I hope you are ok, I posted this last year and for some reason hadn’t looked at it since, I guess trying to not face up to things.

I’ve decided to come back onto the forum and have been reading all the kind messages and other stories.

It would be good to talk with you like we say - both in very similar situations.

Please let me know if you would still like to talk.

X

 

[Naomi25]

Cath,
I have been in a similar position to you as my mum was diagnosed when I was 18 and I watched her deterorirate very quickly. I sometimes lost my patience and felt incredibly guilty for snapping at my mum, I still do and I’m not 23 now. I am looking for people our age that could talk about our experiences because I’m finding it very difficult to Cope with nowadays. Hope you’re well well,
Aaron

Hi Aaron,

I saw your post - I realise this is very delayed.
I just wanted to reach out to see how you are doing/coping.

Happy to talk if you want to speak to another young person in the same situation. sending my thoughts out to you. X

 

[Naomi25]

I have just cried reading this thread. Everyone is so brave.

I’m 28 and my Dad is 63 and we almost have a diagnosis of early onset. I feel so angry and sad that this has happened to me and my Dad at this stage in our lives and not in another 20 years when it may be more expected. I’ve just got my life together (bought a house and got my career out track) and now this. It feels so unfair but I just always try to remember how it’s not his fault. And I have had my Dad for a lot of years whereas some people don’t get one at all. It’s hard to remember that sometimes when I am mostly so bitter that this happened.

You poor thing, it is awful I completely understand. When I feel down I try and think the same as you as although it’s awful at this age some children face it so so much younger and it breaks my heart. Sending all my love and do let me know if you want to chat x

 

[Cat27]

Hello again Naomi. Please keep posting as you'll get lots of support here.

 

[Naomi25]

Hi everyone,

I posted the original message over a year ago and I don’t know why but I just couldn’t look at it since.

I’ve been reading all your messages and my heart goes out to you all. I wish no one here had to go through this but I am glad we can all share our experiences and help to support each other.

My dad has rapidly got worse, he seems more of a ghost than himself now. He has lost a lot of weight and looks 20 years older than he is. He barely speaks but does like to come sit with me when I come round.

My mum is not coping and I have also had his Carers phoning me up to voice their concerns which is very difficult to me. It’s a very lonely place to be.

If anyone wants to talk, I am here. Sending my love to you all. X

 

[Naomi25]

Hello again Naomi. Please keep posting as you'll get lots of support here.

Thank you, I agree - I will continue to post and hope I can also help others.