Feeling a bit alone with all of this at 28!

[londoner111]

Hey all, im writing this in floods of tears im currently on holiday with my mum just the two of us and its hit me that i think shes definately got dementia. Shes only 65 but for years I and others have been thinking this but she had an assessment about 4 months ago (she literally cried her way through it after they mentioned the D word so didnt get any useful results they basically said as she is about to do her activities of daily living to come back if it gets worse).

But now on holiday its been really shocking i've found her up and dressed with her suitcase packed in the middle of the night. She can never seem to find the word she wants and im constantly having to help her find the right word. Shes also obsessed with finding something shes lost in her bag. I literally feel im on holiday with a child. Our conversations are so basic and quite painful to be honest, she keeps mishearing everything. She cant figure light switches/turning on the shower its all so so odd. She really reminds me of my nan when she was in her 90s this all feels 30 years too soon.

I text my older brothers my concerns they ignored my messages and shes single so this literally all feels on me. Shes so muddled with all her appointments and i kinda feel even if she gets a diagnosis whats the point, its seems unless shes at a point shes ready for a care home theres no real support. Im 28 it just feels too early for this. My friends are lovely but they can only relate to grandparents who had other family members on the case. I work fulltime and i dont want this to take over my life

 

[northumbrian_k]

Hi @londoner111 and welcome to our friendly and supportive community. I am so sorry to read about your mum and how this is affecting you. It is often when we are free to spend time with someone - particularly in an environment that is different such as a holiday - that the extent to which they are affected becomes clear. There is support available such as carer visits and respite stays but getting them in place can be tricky. You need to live your own life and I am sure that's what your mum would want. I hope that others who have been in this situation will be able to help. In the meantime you may find these links helpful:

Young-onset dementia: Understanding your diagnosis

Our booklet explains the treatments, support and services that are available to people diagnosed with young-onset dementia. Download your copy or order a printed version in the post.

www.alzheimers.org.uk

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

 

[londoner111]

Thanks so much for your response. Absolutely the holiday has highlighted that anything new and not automatic behaviours is problematic. Also watch her do her medication (antidepressant and heart meds) makes me super stressed I think shes either under or overdosing on them! I think familiarity has covered it up. She lives alone and I feel so bad im not moving in with her to navigate this she would do so much better me living with her but im just not willing to do it the problem with carer visits is she doesnt need help with personal care/house stuff so not really sure what they would do!

Hi @londoner111 and welcome to our friendly and supportive community. I am so sorry to read about your mum and how this is affecting you. It is often when we are free to spend time with someone - particularly in an environment that is different such as a holiday - that the extent to which they are affected becomes clear. There is support available such as carer visits and respite stays but getting them in place can be tricky. You need to live your own life and I am sure that's what your mum would want. I hope that others who have been in this situation will be able to help. In the meantime you may find these links helpful:

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[canary]

Hello @londoner111

When people are at home they can cover up a lot of their dementia symptoms, but somewhere new shines a cruel light on their difficulties. I had no idea how bad mum was until she came and stayed with me for a weekend. I had been wondering whether she would be able to come and live me so that I could look after her, but it showed me that there was no way that I would be able to cope.

You do not have to look after her directly, you can keep an eye on her and make sure she gets the help she needs. Carers are not just involved in helping with personal care (though they do a lot of that) you can get them to administer drugs too and just have someone visiting to make sure she is OK. To start with, though, you may find that getting the drugs put into a dossette box at the chemist so that all the drugs she needs are just in one bubble helps. Other people find a pivotel that will only allow the dose at set times (with an alarm) prevents overdosing works, although it wont stop them simply not taking the drug. It will only work for a while, though and eventually they need an actual person giving them the drugs to make sure they take them - and this person can be a carer.

Carers will also do housework, which can be a way in so that they are better accepted. They can then morph into giving drugs and doing personal care as needed. Organisations like Age UK will also do housework and companionship (they wont do personal care) which will again mean that they have someone going in who can keep an eye on them.

Some people have found technology like camaras, echo show and ring doorbell useful although I never used it.

BTW - if your mum hasnt yet done POA, please do your best to organise it now as it will save a lot of hassle later. Once its needed it will be too late.
xxx

 

[Waitinggame]

I agree with everything canary has said. Be guided by those on this forum as to where to get advice and help but please dont let it take over your life.

 

[jay6]

welcome to the forum @londoner111 Its a horrible situation to find yourself in. You'll get lots of help on here and I agree with @canary pwd can cover it well in their own home.
28 is so young to have to deal with this. You still need to have a life.
I hope when you return you get plenty of help from social, GP's and your brothers.

 

[Rachael03]

Hi @londoner111 and welcome. Im so very sorry to hear what you're going through. It is awful for the both of you.

My mum was diagnosed earlier in the year and although the circumstances are different, there are a few similarities in what you shared that rang home with me. I'm also fairly young (33) and working full time..i have 4 older brothers but I'm the youngest and the only daughter.

I can't speak of the relationship you have with your siblings but don't let them ignore your concerns. If they are a part of your life and your mums, be blunt with them when you get home about the experiences you've had. A head in the sand approach will get you nowhere with this illness unfortunately. Getting a diagnosis isn't always easy but it is important. It will open up access to medication and other support..do lean on.th3 community here as well, they are brilliant.

Do you think you might get your mum back to her gp for a second referral to memory clinic? The results might be more conclusive at a future date and you can speak of the experiences you've had just now.

Guilt is just plain ****..the worst emotion! try and keep your boundaries and remind yourself that it's just as important to look after yourself during this. It's such a young age to try deal with this and in some aspects I feel it demands more than the years of life we have behind us. I moved closer to home following diagnosis but I categorically will not move mum in with me! Even though I have the space! I know she would want me to prioritise living my life too and she's right.

It's all very overwhelming. There are so many people here who can relate to what you're going through. I find that a comfort (even though I wish nobody else had to go through this).

Keep posting when you need to

 

[Tomsamsmum]

Hello and welcome, although I don’t post here often I spend many hours reading mainly through the night here and have learnt so much and actually feel virtual support and realise how alone in this journey I’m sadly not .
I totally agree with what canary said, especially having carers in for medication , they can provide a number of different things and it will ease them in to be come familiar with your mum, the holiday situation possibly exaggerated her symptoms and back home she may settle again x sending a hug x

 

[Tomsamsmum]

Hi @londoner111 and welcome. Im so very sorry to hear what you're going through. It is awful for the both of you.

My mum was diagnosed earlier in the year and although the circumstances are different, there are a few similarities in what you shared that rang home with me. I'm also fairly young (33) and working full time..i have 4 older brothers but I'm the youngest and the only daughter.

I can't speak of the relationship you have with your siblings but don't let them ignore your concerns. If they are a part of your life and your mums, be blunt with them when you get home about the experiences you've had. A head in the sand approach will get you nowhere with this illness unfortunately. Getting a diagnosis isn't always easy but it is important. It will open up access to medication and other support..do lean on.th3 community here as well, they are brilliant.

Do you think you might get your mum back to her gp for a second referral to memory clinic? The results might be more conclusive at a future date and you can speak of the experiences you've had just now.

Guilt is just plain ****..the worst emotion! try and keep your boundaries and remind yourself that it's just as important to look after yourself during this. It's such a young age to try deal with this and in some aspects I feel it demands more than the years of life we have behind us. I moved closer to home following diagnosis but I categorically will not move mum in with me! Even though I have the space! I know she would want me to prioritise living my life too and she's right.

It's all very overwhelming. There are so many people here who can relate to what you're going through. I find that a comfort (even though I wish nobody else had to go through this).

Keep posting when you need to

 

[JessN12]

Hello, @londoner111 reading your story was like reading a memory of my own written down. My mum came to visit me on my year out in Australia and I noticed all those things you have said, I was 29. I took her on holiday a year later and it was like being on holiday with someone else. All the same things you have described.
My mum is still alive but as the Alzheimer's progresses I miss her everyday.
It is so hard, and yes in comparative terms it is young to have to deal with this, the feeling of guilt was strong at first, it still is but as time has gone on I've learnt to be a bit easier on myself. I am no good to her as an unhappy stressed person, which is what I would be if I spent all my free time with her.

I would push for a diagnosis to be honest as that opens lot of doors to help. I admit I stuck my head in the sand at the start as she was still able to cope independently and still can to certain degree but I wish I had asked for help sooner with needs assessments, attendance allowance etc as it all takes so long.

I found that the Samaritans are a excellent place to help you feel less burdened and less alone, they have an email address and there is just something great about being able to put everything you feel down in writing and receive a nice response back that is purely there to support. It helped in the days I felt most alone and didn't feel I could burden my partner anymore or felt my friends who had young healthy parents would not understand.

 

[amberh762]

Hi. Reading your story is sadly relatable. I’m 29 and my dad has recently been diagnosed with young onset dementia. I’ve felt isolated, confused and yes, it feels so rare to find someone who has gone through this at a similar age. Here if you want to talk as it would be nice to speak to someone really going through the same thing. Take care

 

[RobinBird31]

Hi, I'm 26 (nearly 27) and my mum was diagnosed with early onset dementia when I was 21. You're not alone with feeling like you're too young for this - we definitely are!! But there are ways to cope and speaking with 5 years experience now, it is something you eventually learn to live with... So things will get better in a way. Please pursue a diagnosis. I know you feel there's not much point, but with an official diagnosis comes support if your mum needs it. Like Amber says, here if you need to talk

 

[MonicaS]

Hi. Reading your story is sadly relatable. I’m 29 and my dad has recently been diagnosed with young onset dementia. I’ve felt isolated, confused and yes, it feels so rare to find someone who has gone through this at a similar age. Here if you want to talk as it would be nice to speak to someone really going through the same thing. Take care

@amberh762 and @londoner111 I am going through the same experience right now - my dad was just diagnosed with dementia a few months ago at 58. It's been incredibly painful and isolating and just not something that you expect to deal with at this age. I feel your pain and also would be happy to talk and listen! Wish you both all the best.

 

[CharlieS]

Hello everyone,

I am 31 and mum has just been diagnosed with frontotemporal dementia at 58. Feel everything you are all feeling, and definitely feeling guilt for not spending every spare moment with her. At the moment I see her every other weekend (we live 3 hours away from each other). My step dad is wonderful but feeling the strain.
Feels as though you are grieving someone who is still alive.

Also happy to talk and listen. It's such a hard thing for others to understand when your parent is so young.

Sending strength and love to everyone going through the same xxx

 

[londoner111]

Hi. Reading your story is sadly relatable. I’m 29 and my dad has recently been diagnosed with young onset dementia. I’ve felt isolated, confused and yes, it feels so rare to find someone who has gone through this at a similar age. Here if you want to talk as it would be nice to speak to someone really going through the same thing. Take care

So sorry to hear you are relating and for your dad. Agreed it's so weird going through this in 20's! Have found the responses really helpful to read through, absolutely happy to talk x

 

[londoner111]

Hi, I'm 26 (nearly 27) and my mum was diagnosed with early onset dementia when I was 21. You're not alone with feeling like you're too young for this - we definitely are!! But there are ways to cope and speaking with 5 years experience now, it is something you eventually learn to live with... So things will get better in a way. Please pursue a diagnosis. I know you feel there's not much point, but with an official diagnosis comes support if your mum needs it. Like Amber says, here if you need to talk

Thanks so much xx

 

[londoner111]

Hello everyone,

I am 31 and mum has just been diagnosed with frontotemporal dementia at 58. Feel everything you are all feeling, and definitely feeling guilt for not spending every spare moment with her. At the moment I see her every other weekend (we live 3 hours away from each other). My step dad is wonderful but feeling the strain.
Feels as though you are grieving someone who is still alive.

Also happy to talk and listen. It's such a hard thing for others to understand when your parent is so young.

Sending strength and love to everyone going through the same xxx

Thanks so much for that, really relating to grieving someone alive, honestly feel like I'm forgetting what mum used to be like at this point! Happy to talk too x