Newby

[Jase]

I just wanted to say Hi as I become familiar to the site and find my way round.
I'm 30 years old and my mum who is 59 has this week had a confirmed diagnosis of vascular dementia. Mum has been treated for depression for many years but over the last couple of years her mental state has deteriorated and this last 3 months she has had many tests which have brought us to this point.
I was expecting the diagnosis but it hasn't made it any easier now it's been confirmed.
My dad works away a lot so I am my mum's main support, at the minute he is not accepting and does not want to know what the future may hold.
I have 2 older brothers who have not had very much involvement but we all met with mum's CPN on Tuesday and they had their eyes very much opened.
I work for SS as an unqualified social worker- too much information is not always a good thing.
Just wanted to introduce myself and learn from others and have some support from people who know
Thanks x

 

[Lynne]

Hi Jase

Glad you found TP (Talking Point) but sorry you need to.

You'll find there are quite a lot of cases of early-onset dementia represented here, which is really sad.
However, you'll find real understanding of the kind of things you're dealing with.

Best wishes

 

[Grannie G]

Hello Jase

Either diagnosis is improving or something is happening to cause an increase in the numbers of early onset dementia. Whatever the case, it`s very worrying.

If your father is away a lot it will be easier for him to stay in denial but it certainly doesn`t make it easier for you to take the responsibility on board at your age.

I hope you find the support you need from TP. Even with no further information, we all understand what you`re up against.

Keep posting Jase. You have come to the best place, however undesirable a place it is.

 

[salacious]

hey there

hey there jase and welcome to TP.

i hope you find some support on here, i have found it great and really supportive.

if you ever need to chat just add a thread, we will listen.

love

 

[Skye]

Hi Jase, just wanted to add my welcome. You'll find lots of support here.

 

[maddie5177]

hi

hi jase,

welcome... i have only been on talking point for over a week now, but already it has helped me so much....i have to say i am in a very similar position... i am 31 and my mum who is 60 was diagnoised at the start of this year with dementia and suffered with depression for years before that, i too am my mum's main support, although my dad lives with my mum but he too does not want to face the reality of this illness, so continues to live in his little bubble, my sister lives 17 mile away in the middle of nowhere and can't drive but does her best to support us and my brother god love him does what he can but that really amounts to pretty much nothing, feel free to send me a message anytime as i'm sure we can help each other out

love Maddie

 

[Jase]

Thank you for your replies x

I'm on a bad day today but probably worse as I am tired out. Just dropped my toddler at nursery at the hospital where I work and have come home to try and relax and rest.

I did want to ask about if people have told the people they are caring for that they have dementia.
My brother feels that mum should be told so she can make some decisions while she still has the ability but myself and my dad are concerned with this. So far we have told mum that she has had 2 strokes and she seems ok with this as there is a reason for her limitations. Speaking to her yesterday I'm not sure she would be strong enough to know things are going to get change and progressively worsen over an unlimited time period. I asked her if she felt anxious about the future and she said 'yes if I'm always going to be like this. I know I probably won't get better' I then asked if she was worried in case things changed and worsened slightly and she said 'I can't think about that' At this minute in time I feel to tell her would take the rug from under her so to speak. Mum is very much in the stages where she sees her limitations and becomes frustrated and feels she is stupid. The worse thing for her at the minute is her speech, she gets part way through a sentence but then cannot finish it even though in her head she knows what she wants to say.

Maddie- I feel for you because I can see how hard things are for you with the similarity of our situations but I'm so glad you're on here!

Thank you all again x

 

[Lanie]

I think whether to tell someone is very difficult and every person will be different.

In the case of my Mum the consultant had already decided my Mum wouldn't be able to cope. My Mum has been told she has memory problems that are being treated with medication. She seems to accept that. I think in my Mum's case due to her dad, sister having dementia/AD and the memories she has of those times especially her dad as it was in the 70's and he was admitted to a mental hospital. There was a fear I think that all those memories would take over and destroy her further.

I hope you find the right answer.

Take care.

Lanie

 

[Grannie G]

Hello Jase

It sounds to me as if your mother has as much information as she can cope with, for now at least. That her symptoms are the result of a stroke is a very acceptable explanation.
Love xx

 

[maddie5177]

hi jase,

it is difficult how much to say and how much not to say, my mum knows she has dementia, there wasn't really any other explanation, but i don't think she realises the impact it will have on her life, for now i will leave it at that, and let her enjoy as much as life can bring just now

believe me i know what ur going through juggling life.. i also have a child at nursery and i also have a 5 month baby,i'm definately at my limits!! but at least we have each other to compare notes lol xx

Love n Hugs Maddie x

 

[jenny48]

Hi Jase

I agree with all the others before me, each individual is different, I never told my mum she told me she was the same as her mother, in her mre lucid moments she had recognised the symptoms. So I was spared that part, I think you should just take it day by day and see where it leads.

Good luck

 

[jenniferpa]

Hi Jase.

If your mother has vascular dementia you're not even a lie exactly to say that her limitations are the result of strokes. One thing you should do, if you haven't already done it it, is get a LPA (Lasting Power of Attorney) drawn up. If you think raising this issue might upset her, perhaps your father could get one drawn up at the same time (not a bad idea anyway): that way it's less pointed.

 

[Jase]

Thanks everyone
We are going to get together as a family but without mum tomorrow (so not really a family for us I suppose) to discuss what to tell her. I feel the decision will remain to just maintain she has had strokes and this is why she has the limitations she has.
Having a bad day today, in tears lots of the time, probably need a good cry but convinced that once I start I'll never stop x

 

[Skye]

Hi Jase

Don't be afraid to cry, you may need to release the tension.

I hope your family meeting goes well. It's great that you can all support each other. And your mum will be there, because you'll all be thinking about the best way to support her.

Good luck,

 

[Jase]

Thanks Hazel
I just worry that if I'm like this now how I'll manage to support mum through the harder times to come. I know deep down that I just will and probably won't know where the strength comes from but probably like everyone on here I'm so so scared x

 

[Skye]

Jase, you will cope!

It's all very new for you just now, and you don't know what to expect.

Talk to your CPN, if you're lucky, she'll be a great support for you.

And post on here as often as you want. We've all been through what you are going through, and we know how terrifying the initial diagnosis is. I know you've spoken to other new members, and that's great, because you're all going through the samething.

We older members have got beyond that stage, my husband is in the end stage, but is quite stable just now, so I'm here to support anyone who needs support. That's not to say I won't need support in the future, when things change. I know I will.

That's what TP is for. Use it as much as you need.

Love,

 

[Jase]

Thanks Hazel x

 

[Margaret W]

Jase and others (sorry I am useless at keeping track of posters), Jase, you will cope. It is a fact. You might need some support, that is what we are all here for, we do it all the time. Contact us. We are not experts, but most of us have experienced something similar to you, and we will help.

Love and best wishes

Margaret

 

[maddie5177]

hi jase,

i often feel the way u r feeling....oh my god if i can't cope now how will i cope when things get worse, but i have started to not think too much about the future, it'd just to hard and it certainly doesn't help...anyway who knows what will happen tommorow let alone in the future, so take each does as it comes, and don't worry about tommorow, each day has enough worry of it's own

i don't know if you have a power of attorney drawn up, i know it's not something you want to really think about, but it is best to get it done asap if not already.

obviously i having a good day today, giving you all my strong advice!! but i'll probably be back on here tommorow, crying my eyes out lol

love n hugs Maddie xx

 

[maddie5177]

hi jase,

me again!! you will be fed up listening to me soon , but i just read your last post to me, i think a diary is a great idea..... oh and i read something above from you saying your mum gets frustrated when she starts a sentence but can't finish it even although she knows what she is trying to say..... i was at my mums tonight and she was talking away (well trying to!!) and she kept stopping and saying oh it's in my head, but she just couldn't get it out, it just reminded me of our similar positions.... oh what fun:!!!!!

love and hugs again
Maddie x

sorry can i ask, r u male or female, not that it makes any difference whatsoever, i was just wondering x