New and scared

[broomfield2010]

Hi, we have just discoverd my wonderful stepdad has alzheimers. he's 58 this month.
after three years of wondering and guessing, we have just had the awful news we had all silently dreaded.
my parents now have to wait for an appointment at the memory clinic to work out what form, what happens next etc.
devastated doesn't even begin to cover how we are all feeling.
it's been heartbreaking seeing my fun-loving stepdad become a shadow of his former self. he can still do everything for himself, but he has lost his confidence in the typical "man" jobs he used to do, ie maintaining cars, decorating, diy etc. he also struggles to find the right words at times and sometimes forgets a conversation you've just had.
we should feel so lucky we have found out now when we can make the most of what we have until things get worse.
but he's 58 - i've not yet married or had babies (i'm only 29) and my biggest fear is that he won't be a part of it when i do.
someone please tell me how to be positive - for me, for him and for my amazing mum. i don't want to wake up one day to find my adorable stepdad no longer knows who i am.
x

 

[Grannie G]

Hello broomfield

I am so sorry for your family.

All forms of dementia are tragic but even more so when it attacks those who are still very young.

Allow yourself yo recover from the shock, if recover is the right word. No-one can tell you how to be positive but you sound a warm and loving family which is as good a start as you could ever have.

we should feel so lucky we have found out now when we can make the most of what we have until things get worse.

You have shown the best attitude by saying this. This is what you do, as well as you can.

Please come to Talking Point [TP] for support. One thing I am sure of, you`ll get plenty.

Take care xx

 

[broomfield2010]

Thank you so much, i am glad i've found this place just to have people there who totally understand.
my friends have been great, saying how sad they feel etc. but i'm not sure they truly understand how this feels.
we found out on wednesday and i've cried big heavy tears ever since. i can physically feel the black cloud above me.
luckily my mum and i are the best of friends and i've stayed strong through all this to be her shoulder. but on hearing the news i finally fell apart and had to take a few days for myself to be devastated. i know my mum understood (i've never felt so selfish having to put my sadness first just for a moment) but i know i've got to get back to being strong and positive for them both.
one big moment of realisation was sat with my parents and my 85-year-old nan who was happily chatting away - how devastating to realise she suddenly seems more capable than my stepdad.
thanks again, i know this is going to be a great source of support for me.
x

 

[helen.tomlinson]

Hi Broomfield

I am so sorry you and your loved ones are having to cope with this disease.

One thing I decided early on was to forget about what the future might hold and make the most of "today" which I do. Of course some days are worse than others which make me wobble a bit but Talking Point members are always there to help me up again. I try not to concentrate on what Alan (my husband) cannot do but focus on what he can and this gives me heart and courage. If I thought about all those things that "might" be ahead, I'd collapse with fear.

Love and best wishes to you.

Helen

 

[BeckyJan]

Hello and welcome to TP:
I remember being new and scared some 4/5 yrs ago when my husband was diagnosed. It was not unexpected as I had been checking on the internet about Alz. since 2000. You do sound like a very close knit family - that must help. Do try to get your Mum and Stepfather into the local Alz. Society - they should supply local information and contacts. It may help them to meet others in the same situation. We have become very close friends with people we met in those early days.

If there are things you do not understand just start a thread and you will be amazed at the response.

Best wishes Jan

 

[broomfield2010]

And luckily that is what my mum has decided and she and my stepdad have had a few big chats about what they need to focus on.
Mum is generally being so strong, but i know she too will fall apart many times.
as lonely as i feel, i know that she - and others like her and yourself - must feel more lonely than i can comprehend at the thought of what is happening to the person you love most in the world.
mum went through a time of getting aggravated/frustrated with my stepdad. i know that was just because she was so frightened and saddened each time he said something odd. but since the news she has told me just how much she loves him and that she wants to never waste another moment snapping at him.
i hope we can soon get back on track and simply make his life as wonderful as we possibly can.
x

 

[broomfield2010]

in some respects it seems too soon to join support groups and things as in many ways my stepdad is absolutely fine. he's capable of doing everything physical, he knows who we are etc.
but mum would love to meet maybe one or two other couples in the same boat, so she has someone to talk to who is going through the same along the way.
it's such early days, we're in total shock. i suppose until he has his treatment sorted and we know what form he has, we are once again in limbo.
i'm so touched by such a rapid and caring response on here. i will be a regular visitor.
x

 

[helen.tomlinson]

Hi Broomfield

mum went through a time of getting aggravated/frustrated with my stepdad

I still have times like this but having support and an outlet helps these times to occur less frequently and not last as long. I get aggravated/frustrated on line instead

Love Helen

 

[BeckyJan]

I personally think your Stepfather and Mum should go as early as possible. It is good for local 'supporters' to get to know your Dad as he is NOW - it gives them more understanding as the disease progresses.

My husband is known by our local supporters (there are a few who care and many 'chocolate teapots*) - the good ones know him for what he was and that has a two way benefit.

* theres a good thread, with humour, on 'chocolate teapots'!!

Keep posting Love Jan

 

[broomfield2010]

i hadn't thought of that, Jan.
when people meet my stepdad they say "he seems fine to me". even my own "real" dad has said he doesn't see what the difference is in him. but these people don't really know him, how we know him. to us - me and mum - he is a totally different person who has lost his confidence and has a little boy lost look in his eye at times.
i suppose these supporters would get to know his character and would pay attention to the changes.
thank you for that, i've found out lots today to tell mum. it's just knowing there are lots and lots of people and info and help out there that keeps her going.
x

 

[Grannie G]

Dear Broomfield

Does your mother use a computer? If so, please try and persuade her to register with TP. Also your stepfather, if he has computer skills. This site is for both carers and sufferers alike.
It might help them feel less alone.

 

[broomfield2010]

i've just told mum about this. she is keen to get a computer for this very reason. my stepdad, love him, had been saving up the money to buy it for her, it'll be a lifeline for them when they get it sorted - will be interesting to see how well he can handle a computer now, it's been a few months since he used one, although we encourage him to play on the playstation just to keep his ability up.
x

 

[Lynne]

Hi Broomfield

From 'Old & Scared' of Suffolk!

Yes, this stuff IS scarey when it's first dropped on you like the proverbial bombshell, but you'll recover your poise - because you have to. Alzheimer's isn't a short-term illness, and there's still plenty of life left in your Dad yet, and plenty for you to do to encourage & help him maximize what he gets out of that time while he can.

I too would recommend the local Alz group. The one Mum & I go to have a 'Heartsease' meeting (probably just a local name) for Carers + Cared For together, once a fortnight. Our group meet in a local community centre, so are lucky enough to have the facility of a darts board and pool table. This is in addition to other Carers'-only talk & support meetings, & various separate activity sessions for AD sufferers. The range of abilities or disability is very broad. The more 'able' help according to their skills and nature, pushing wheelchairs, setting out tables, setting up equipment (boardgames & crafts),& helping with the inevitable tea/coffee/biscuits etc.

Contact the group nearest you (Chelmsford?) and find out what is available in your area. Ask the group leader how best he/she thinks Dad could be introduced. It sounds (from what you have told us of him) as if he might be more at ease being 'useful' than a passive member. On our first visit, we found several people whom we knew from 'normal' life, & I think that in itself made Mum feel better. One of the other ladies had even worked at the same charity shop as Mum did, and I'm sure this made her feel less 'odd'.

Best wishes

 

[broomfield2010]

i'm sure you've all felt how i do about the idea of my stepdad going to a support group - i just feel he would collapse in a heap at the harsh realisation of what his life has come to.
it's heartbreaking enough to see his little face crumple when he says something wrong or gets confused. i just cannot imagine him being in a group where he looks around at what his life is to become.
i do so hope that doesn't sound patronising or uncaring, it certainly isn't meant to. although he has problems, i can't comprehend him accepting things like that, not just yet anyway. he's already frightened of friends and family treating him differently.
goodness, so much to get your head around.
thanks again for the support and suggestions. mum lives in south benfleet so think her nearest group may be basildon??
x

 

[Lynne]

Yes, I do understand what you mean

My mum is an ex-nurse (psych. nurse at that) so she already has a very good understanding of what Alzheimer's is, & will become.
That said, we found the local group to be composed mainly of 'normal' people, albeit a few with physical limitations, just like ourselves. With some couples, I couldn't tell at first which of them had AD and which was the carer. I might be wrong, but the impression I get is that early-stage sufferers are likely to attend such local group meetings, later stage sufferers probably aren't likely to do so.

By contrast, when Mum went into Respite care for a few days, she was confronted with several late stage sufferers who were unable to converse and, unfortunately, exhibited some distressing behaviours. This was a blow to us, and I could see her thinking " My God, am I getting this bad?"
Yes, I do understand what you mean.

 

[andrear]

HI There
What a shock to you all. But you seem such a loving and caring family you will all pick yourselves up again. You are facing a daunting task ahead, but there is so much support out there it really does amaze me.
Please do as others have recommended and get mum and dad along to the support groups. Also you should look at what is available to you too. There are support groups out there for younger carers and you will not feel so alone then.
I look after my dad and the support from the groups aswell as TP has really helped me come more to terms with what is ahead.
My thoughts are with you.
Love AndreaX