At least we finally know

[just_dolphin]

Hi everyone

I recently posted about waiting for tests results for my mum. Thank you so much for the help and advice.

We finally got the results yesterday and as we thought mum has been diagnosed with early onset alzheimers. They also mentioned something about vascular dementia but because they think tis mainly Alzheimers they are going to treat for that and make a care plan up. Although we kind of knew what the result was going to be it was a massive blow. We are going to be given lots of reading and stuff in next few weeks. I think the most shocking part was that mum asked straight out what the life exspentancy was and if she would die from this. (I dont think she realised that its not curable) They said she will probably deteriate over the next coming 10 years but its really hard to say. I don't really know how to feel or what to expect... can I expect to see this take over fast? or will it really be slowly over years and year?

Mum is not int he best of health anyway she has diabetes and heart problems so this is not really in her favour. I guess I just feel pretty alone and scared at the min as I am sure my mum does to. Thats why Im here I guess as Im hoping for I dont know really support I guess. I have amazing friends and finace but I don't want to constantly bug them. I feel pretty angry right now. My dad was taken away from us when I was 16 so I feel angry that now this is happening to my mum. She has a partner and other children but I will end up being the main carer. They gave me booklets on this yesterday and it feels awfully overwhelming. especially as right now mum can do pretty much everything herself still.

sorry for ramberling xx

 

[ellejay]

Hi there, I'm sorry your mum has this diagnosis & I understand how panicked you must be feeling. The best advice I can give is not to try to see too far ahead, none of us knows the speed this illness travels, everyone is different.

Please keep posting on here with any concerns you may have & try not to worry too much ( I know, easier said than done )

Be kind to yourself

Lin x

 

[bdmid]

Hi everyone

I recently posted about waiting for tests results for my mum. Thank you so much for the help and advice.

We finally got the results yesterday and as we thought mum has been diagnosed with early onset alzheimers. They also mentioned something about vascular dementia but because they think tis mainly Alzheimers they are going to treat for that and make a care plan up. Although we kind of knew what the result was going to be it was a massive blow. We are going to be given lots of reading and stuff in next few weeks. I think the most shocking part was that mum asked straight out what the life exspentancy was and if she would die from this. (I dont think she realised that its not curable) They said she will probably deteriate over the next coming 10 years but its really hard to say. I don't really know how to feel or what to expect... can I expect to see this take over fast? or will it really be slowly over years and year?

Mum is not int he best of health anyway she has diabetes and heart problems so this is not really in her favour. I guess I just feel pretty alone and scared at the min as I am sure my mum does to. Thats why Im here I guess as Im hoping for I dont know really support I guess. I have amazing friends and finace but I don't want to constantly bug them. I feel pretty angry right now. My dad was taken away from us when I was 16 so I feel angry that now this is happening to my mum. She has a partner and other children but I will end up being the main carer. They gave me booklets on this yesterday and it feels awfully overwhelming. especially as right now mum can do pretty much everything herself still.

sorry for ramberling xx

Hi, my brother and I are at the same stage with my mum. but with vascular dementia, and I don't know what happens next either, mostly she is able to do normal things whilst we are there to prompt her, but is becoming reliant on us being there. Its a big learning curve which I guess we make up as we go along and hope for the best, for as long as we can. For the last year we have put our lives on hold to get to this stage, we don't know how long this will last before we have to think about her safety and living arrangements which will be the next biggie.

 

[FifiMo]

Hiya Dolphin,

Can I make a suggestion? Now you have had the diagnosis and the medical people will do what is necessary in terms of treatment, so far as you are concerned, don't go delving all over the internet looking for information because you will scare yourselves to death! Every person's experience with dementia is different. What progresses for one person may never even appear for another. The best approach is to set aside the general diagnosis and to focus on the challenges that your mum has right now. Work out between yourselves the things that can be done to work around the things that your mum is struggling with. Please also treat her as normal. She is no different today than she was yesterday when someone gave a diagnosis. Make the most of the skills your mum has and spend time with her without her feeling she is now carrying a Dementia Label around with her too. Yes there will be ups and downs but you treat these as they arise.

We are here at talking point so you can get support and perhaps reassurance as to whether things that come up are dementia related or not. There are people around 24/7 on here so you're not alone in that regard.

One day at a time is the way too go. Celebrate the good days and find solutions for the bad days. I'm not trivialising the stress associated with dementia, but there is no alternative to the day at a time approach, unfortunately.

Fiona

 

[tom0591]

Hi everyone

.............
We are going to be given lots of reading and stuff in next few weeks. I think the most shocking part was that mum asked straight out what the life exspentancy was and if she would die from this. (I dont think she realised that its not curable) They said she will probably deteriate over the next coming 10 years but its really hard to say. I don't really know how to feel or what to expect... can I expect to see this take over fast? or will it really be slowly over years and year?
...................
Mum is not int he best of health anyway she has diabetes and heart problems so this is not really in her favour.

It is good that you are being given information - you can be prepared for what symptoms and behaviours may / may not occur.

It seems that you are getting good help and advice , and that's something positive which a lot of people don't get.

No one can tell you how quickly it will advance - it varies for each individual.

Just enjoy your mum's presence and don't worry all the time about the speed of progression. It may be slow for your mum.

Her heart and diabetes issues are just as important as the dementia in health terms.

 

[Irishgirl57]

Hi everyone

I recently posted about waiting for tests results for my mum. Thank you so much for the help and advice.

We finally got the results yesterday and as we thought mum has been diagnosed with early onset alzheimers. They also mentioned something about vascular dementia but because they think tis mainly Alzheimers they are going to treat for that and make a care plan up. Although we kind of knew what the result was going to be it was a massive blow. We are going to be given lots of reading and stuff in next few weeks. I think the most shocking part was that mum asked straight out what the life exspentancy was and if she would die from this. (I dont think she realised that its not curable) They said she will probably deteriate over the next coming 10 years but its really hard to say. I don't really know how to feel or what to expect... can I expect to see this take over fast? or will it really be slowly over years and year?

Mum is not int he best of health anyway she has diabetes and heart problems so this is not really in her favour. I guess I just feel pretty alone and scared at the min as I am sure my mum does to. Thats why Im here I guess as Im hoping for I dont know really support I guess. I have amazing friends and finace but I don't want to constantly bug them. I feel pretty angry right now. My dad was taken away from us when I was 16 so I feel angry that now this is happening to my mum. She has a partner and other children but I will end up being the main carer. They gave me booklets on this yesterday and it feels awfully overwhelming. especially as right now mum can do pretty much everything herself still.

sorry for ramberling xx

Sometimes the scariest part is not knowing. For me it was always something worse than what it actually was. I was diagnosed 2.5 years ago with dementia at 54 years old. That was mind blowing. But at least I know. I could move forward and accept my situation, not always gracefully but doing the best that I can.

Good luck with your mom I send you much love and (((hugs)))

Blessed and grateful, Donna

 

[just_dolphin]

hi

thank you so much for all your replies x it has made me feel better just being able to share my worries with people.
I really appriciate you all taking your time to reply x
Many of you have said to just deal with day by day and thats what we are going to do, im trying not to read up to much about it, like Fiona i think said as obviously its differnt for everyone.
Thank you again x
xx

 

[bilslin]

Hi just dolphin my mums had this horrible disease for over eight years. And I've just take one day at a time. Know one knows how long or how quick it takes but get as much help as you can from SS careers .my mum has a visitor once a week from CROOSROADS and goes to club once a week too. TP is a great place to get info and just to let off steam. You've come to the right place. linxx

 

[just_dolphin]

Hi just dolphin my mums had this horrible disease for over eight years. And I've just take one day at a time. Know one knows how long or how quick it takes but get as much help as you can from SS careers .my mum has a visitor once a week from CROOSROADS and goes to club once a week too. TP is a great place to get info and just to let off steam. You've come to the right place. linxx

Hi
thank you i think that is what scares me the most is the not knowing but we are just taking each day as it comes. we are being apointed someone from ss in the next few weeks and they are organising for muum to go to a day centre once a week. She is very nervous about this as she is quite a loner, i mean she likes to spend time on her own and doesnt really make friends easily but i am hoping that she likes it and it becomes a regular thing. Can i ask what is crossroads?

thanks x