Mum has early onset dementia at 55

[Liv]

Hi I've just joined.
I'm currently 17 and my mum has early onset dementia. She has had it for about four years now and over the past year has got increasingly worse. To be honest I just feel like I'm crumbling inside and nothing that I can do to try and help myself makes me feel any better because at the end of the day nothing will change the way she is. It's just so unfair, and so tragic. I miss having that woman I could once talk to about everything. Its just unreal how 16 years ago she was going everything for me whilst I was growing up and I'm doing everything for her as she's getting older.


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[jal1004]

Oh bless you honey....I feel for you and send you lots of hugs...

My dad was diagnosed last week, he is in his 70's. I have 2 sons, 1 who turned 18 2 weeks ago and 1 of 16 and I can only begin to imagine how you must feel....

I hope you have plenty of support around you who can help and provide a listening ear for you xxx

Hi I've just joined.
I'm currently 17 and my mum has early onset dementia. She has had it for about four years now and over the past year has got increasingly worse. To be honest I just feel like I'm crumbling inside and nothing that I can do to try and help myself makes me feel any better because at the end of the day nothing will change the way she is. It's just so unfair, and so tragic. I miss having that woman I could once talk to about everything. Its just unreal how 16 years ago she was going everything for me whilst I was growing up and I'm doing everything for her as she's getting older.


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[Liv]

Thank you. I hope you're two sons are okay. It's just so hard and unfortunately it's something I had to get used too. Nothing can change the way she has become, it just seems like no matter who we as a family as for help being a nurse or social worker nobody seems to be bothered.


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[scousemouse200]

I used to be a carer for my mother-in-law

I know that the mother in law daughter in law relationship can be very rocky, but when I became I career for her, things started to change. It was me she wanted to go to the hospital with, as I was never part of the family.
The family understood,After a year of being her carer things got scary and I had to inform my husband that she needed more help.
The daughters hated me, but the best think I every did was to get help. She did. She is now in care home.

I hadn't realised that what we had become was friends. She is still allive but the parkinsons has hit in as well.

I now work as an activity coordination in a dementia home, and the families find it very hard.

I do a lot of remeniscence work, and the stories they tell me about there family growing up is amazing. Don't Crumble Liv. If mum can go to an meeting she and yourself will find the help and support you need. When you show old photographs - she will come back. You are doing brilliantly no matter how you feel. you have made a step to ask for help. I hope this site will give it to you.

 

[jal1004]

I know just how you feel....re 'no one seems bothered'. My Mum and I feel just the same. We are only in the early stages of trying to get support. Our local Alzheimer's Society branch seem to be the way forward at the moment, they have been really good, have you contacted them?

 

[Liv]

It's just so hard, I feel like giving up asking for help cause every help that has been offered too us hasn't really been help it's just been information. I'm not really keen on joining the young carers just because I don't really like talking about the situation face to face as I find it emotionally hard. I rarely talk to my friends about it because they just don't really know what to say because they don't understand the situation which is understandable to I just feel like it's pointless


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[Rathbone]

I am new too. I decided to join when I read your post Liv.

You really touched me, Liv, and you are so young to be dealing with this so hard thing. I am seventy and I guess I thought we two, at each end of the age spectrum, may have something to say to each other. A bit of background: my husband who is sixty is waiting to be assessed for suspected bvFTD next Monday. This is after nearly two years of what I am beginning to understand is the normal progress of diagnosis of this disease. We are nervous, of course, but feel that somehow the "certainty" of knowing will help. Although I spent most of my working life with people with challenging behaviours, I am still learning about this one. And, of course, I am not at work and seeing my lovely husband struggling as he is is so very hard. What I do know is that I am still keen to talk about it, to him and to other people. I have never been backward in coming forward and I am convinced of the benefits of talking it out. That's what I say to you, talk here with people who understand without the need for explanation, but talk too to your friends even if they don't seem to really understand, because you can make them wiser and they will want to help you because you are struggling too. Give them a try. Love to you and your family. X

 

[Liv]

Thank you, it is so unfair and so difficult. It's so awful seeing someone you love so much deteriorate over such a small amount of time. I have to treat her like she's just learning again and it's just so stressful and very emotional. I know at times she gets upset because she knows she can't do something which is therefore even more emotional for me to see her like that. The last thing to leave her is her emotions and I can definitely see it. I may not be able to have a conversation with her but she knows if I'm feeling down or angry it's really touching. She would just come and hug me and I just feel like crumbling inside.


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[Rathbone]

Oh sweetheart, I am so sorry! You are so very brave and your lovely Mum knows that, just as she knows how much you love her; there cannot be a greater demonstration of unconditional love than what you are showing her right now. At some subtle level, your Mum is as clear and able to communicate with you as she ever was. Her supreme effort to show you this, by willing herself to overcome the physical and hug you, is wonderful to read. My thinking is that instead of stripping away, this disease really covers up; it hides the true essence of the person, it doesn't remove it. Because we cannot see it, doesn't mean it isn't there. I am being helped by reminding myself that my sweet husband is hiding somewhere close by, but I just cannot see where. Just like teaching a small child that when you hide behind your hands, you haven't really gone away. The burden you are bearing is huge and you MUST take time to repair. Please find some respite. I don't want to be presumptuous and give you pointers, but if you want choices, I know there will be so many people here who can guide you. Keep on keeping on KOKO. We send you love and here is a great BIG hug from me.X

 

[Liv]

Thank you for taking the time to send such a caring reply it means a lot. I just feel like because I don't really talk to anyone about it I feel alone. My dad and I don't really have the relationship we used to as we argue all the time due to the stress we are both under when really all I want to do is spend valuable time with the both of them and it is so hard to do so.


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[Rathbone]

Talk to me - you can say anything you like and if it helps you, I shall be SO happy.

Liv, isn't there a family member or friend of you all who could help you to reconnect? It is so hard to offer you help when I have no idea of exactly what you are having to cope with, but TALK you must. I am a Psychologist by profession, although I have worked as a teacher too and I absolutely KNOW that when we are carrying such a heavy burden as you are, the only way to get by is to share it. If I could physically help you I would, but we don't have that choice, so let's use what we DO have an that's your voice and my listening ear. Oh and a few comments too unless you tell me otherwise. Right now my husband is still managing very well and his problems are as yet with reasoning and thinking. Apart from running my home, I am retired, so I have time to devote to listening to you if you'd like. Absolutely NO pressure on you. Just let me know, or not. Big hug X

 

[jacquih]

Hi Liv, I am so sorry to hear about your situation. Mine is quite similar, in that my mum was diagnosed with early onset 3 years ago (when she was 60), and things are getting worse for her and more difficult for us to manage, but we are determined to keep her at home for as long as possible. Some practical tips I can pass on that may help. I know you said the social workers wasnt very helpful but it is worth pursuing things with her or ask for another one. Is she a specialist in young people with dementia? If not, ask your gp to find one for you. Also, has your mum been given a care manager from the young persons with dementia team? If not, ask you gp to get one for you. These 2 people should help you get practical help at home for your mum, which in turn may help you and your dad. For example, you may be able to get quite a few hours a week help, funded by social services. If your dad doesnt have a lot of savings, then it will be free, but anyway, the funding side is a separate issue, but you should look into getting practical help. For example, my mum has got carers calling in twice a day to see her. They can help with showering, cleaning, food prep, social contact, taking mum out for a walk.. basically, whatever you need them to do. Even if you feel that you and your dad can manage all of these things, it will do wonders to get a little bit of help involved so you can step back, even if it's just for 15min, and take a breather. Sharing the responsibility will really help you both. You should also contact your local Alzheimer's Society office and ask to be put on the waiting list for a volunteer. This is someone who is allocated to call in to see your mum once a week for a few hours. Even if this person just chats to your mum and has a cuppa, it'll be social contact for her and again, you and dad, can just give yourselves a bit of a break. It's also good to have these people dropping in because they are there if you ever fancy a chat. I hope some of this is helpful and I really hope you can get some support because you really do need it and any way of sharing can only help you all. Lots of luck and if any of this doesnt make sense or you want to ask more q's, just fire away. xxx

 

[Kate and jack]

My mum was diagnosed at 60, she's now 66 and in the Middle stages.I miss her very much,the hardest is grieving for a person ,but not being able to move on as the person is still here,it's all very hard sometimes ,and the condition is so very cruel . My advice is to take and accept any help that is offered . Being a part of this forum is a god send ,because I think it offers real life people whom are in the same boat ,this makes me carry on from day to day ,knowing I'm not alone.

 

[Tanya92]

Hi I've just joined.
I'm currently 17 and my mum has early onset dementia. She has had it for about four years now and over the past year has got increasingly worse. To be honest I just feel like I'm crumbling inside and nothing that I can do to try and help myself makes me feel any better because at the end of the day nothing will change the way she is. It's just so unfair, and so tragic. I miss having that woman I could once talk to about everything. Its just unreal how 16 years ago she was going everything for me whilst I was growing up and I'm doing everything for her as she's getting older.


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Hi Liv,

Before I blab on let me start by saying you are not alone. I'm 21 and my 58 year old mum is experiencing similar circumstances. As a family we've known for years but it is only this year that investigations at the hospital have begun. It's like losing your best friend and not knowing where or who to turn too! I wish I could give you coping stratergies and helpful tips but I really can't, the truth is I don't think anyone really knows how to deal with it all. I've been a mess all week and this forum I think is the only thing over the difficult years to come that will get me through it all. So if you feel like a rant or someone to talk to message me because I'd also like to know I'm not alone!!

xxxx

 

[KeddyL]

Hello!

Hello Liv. Im Laura and I to was 17 just turning 18 when my mum was diagnosed at 47. Im 22 now and since my mum was first diagnosed she is non verbal and has the mental capacity of a 18month old child. Im sorry to hear how you are feeling.. I no your pain. I have thought along similar lines to you "My Mum brought me up, why has it changed around?" She would be a little bit sad if she knew i would give up everything to look after her, but i no she would also be very proud. I try to be patient and try to understand what she must be going through, when she used to repeat things over again i tell myself that my mum had to deal with all my questions growing up and make her repeat the same songs and books over and over again, when i am trying to show her things and shes being a little ignorant, thats ok, you have all the time in the world. I hate that she doesn't remember me, and when i get married and have children, she will be non the wiser, but no matter how hard things get, remember she loves you, cherishes you, and will always be proud of you. Xx

 

[MLM]

Hi Liv,

I'm Michelle and I'm 25. My father in law has Alzheimer's which was diagnosed last month but he has shown signs of it for roughly 2-3 years. I'm a student social worker and I want to give you my thoughts from that point of view though. It might feel that nobody cares and they just give you information but the reason for this, in my opinion, is because it is extremely difficult to try to mend the hurt of seeing a person you love with dementia and losing elements of what makes them who they are to you. Sometimes the person changes, sometimes things, particularly memories of better times with that person, get overshadowed.
A client of mine described dementia as "selfish". It makes being around that person difficult for a variety of ways. What is really important is to keep doing whatever you can to see beyond the condition and see the person. They're still there and doing the things you can, with or without them, but that reminds you of why you love them or special memories etc, will keep reminding you why you care for them and why you stand by them. And talking about our loved ones, and not just in respect of their diagnosis, keeps them very much who they are in our thoughts and hearts.

Social workers and nurses are very stretched for time a lot of the time but if your social worker is anything like me then I assure you they will care and probably think about you and your family more than you realise I think about the families I work with whether I'm at work or not. I'm on maternity leave right now and I still think about the families that I've passed on to other social workers whilst I'm away. That's why we do a stressful job, because we (generally, I can't speak for every social worker) really do care. I certainly care!


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[hopefulasever]

Hi I've just joined.
I'm currently 17 and my mum has early onset dementia. She has had it for about four years now and over the past year has got increasingly worse. To be honest I just feel like I'm crumbling inside and nothing that I can do to try and help myself makes me feel any better because at the end of the day nothing will change the way she is. It's just so unfair, and so tragic. I miss having that woman I could once talk to about everything. Its just unreal how 16 years ago she was going everything for me whilst I was growing up and I'm doing everything for her as she's getting older.


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Hi Liv,
Your post has struck me for several reasons, firstly because we have the same name and because I feel the same way about my mum. I'm a bit older than you (22 and I was 19 when my mum was diagnosed) but if you want anyone to talk to who's not too far off your age, just send me a message we all have days where it seems like all is lost and it is such an incredibly hard thing to go through - but remember that there are good days too.
Best wishes x

 

[kathleenr]

I am so sorry for your terrible situation. I have had to fight so many battles to get good support for my husband who was the same age as your mum when he started with alzheimers. I have found it hard with an NHS background so I can imagine how difficult it must be for you. Is there a young carers group locally you can get support from and is there an advocacy service to help you and your mum get adaquate support socially therapeutically and financially. I do hope you get the support you need soon.

 

[zeeeb]

My mum was diagnosed at 57, shes 60 now, but I'm 38. I can't imagine what you are going through having to deal with this while you are so young. Remember to take care of yourself too. Don't ever forget that you deserve to have a life of your own and that you can't be expected to sacrifice everything for this disease. Try and accept and ask for any help you can get, it will be easier to ask for help in time.