Mum just diagnosed

bobbycat1

Registered User
Aug 16, 2013
1
0
Hi everyone,
I am new here,and feel very devastated at the moment.
My lovely mum,who is 64 and has already been through so much in her life,has just
been diagnosed with a rare form of Alzhiemers.
We have yet to find out what this means for her,as we have not been able to talk with her consultant yet.
It started we think,with her having lots of falls,and feeling very dizzy and unbalanced.
She also suffers from a mental health condition,and we feel because of this her symptoms were not taken seriously.
She was admitted to hospital with a mental breakdown at the start.During this time,she started to have problems walking,and ended up in a wheelchair on the ward after falls,and experiencing a great fear of falling.
Nothing was done,re finding the cause,or no physio was given,despite our asking frequently.
After a good few months of this,and her consultant saying at the end,she is mentally well,no dementia etc she ended up having a stroke on the ward.
This wasnt treated for 48 hours!,with our persistence she ended up seeing a consultant who said she needed an emergency op to clear artery.
She had this,it was major,touch and go after and she pulled through.
3 weeks after this,we noticed a major difference in her,not connected to the previous mental health issues.
Word mix ups,confusion,memory problems,the list goes on.
We told everyone something was wrong,repeatedly.
It took a year!!!!!for anything to be done,only because we kept pushing.
Mum has declined rapidly,in a year,she is unable to walk,very muddled,incontinent both ways etc.
We have also just been told,no medication could have helped,or could help,and nothing can be done for her :(
Has anyone out there had any similar experience?
We always thought alzheimers was not this fast and aggressive.
Thankyou,a very sad daughter x
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
Hiya Bobbycat and welcome to Talking Point.

I am sorry to hear of all the problems your mum is having and that it has taken so long to find out what is going on. Even without all the complications that your mum has, people on here will tell you that it took them a year or more to get a diagnosis too!

Before you have your meeting with the consultant I would do some reading on here and get a feeling for what Alzheimers Disease is as opposed to, say, Vascular Dementia as this will help you understand any medical things but will also let you prepare a list of questions to ask the consultant too!

As a starter for ten, given what you have described here are some questions that I would ask..

Are you sure it is Alzheimer's Disease?

Could you explain why vascular dementia doesn't form part of the diagnosis, particularly when there is now a history of vascular problems as she has had a stroke?

Could it perhaps be mixed dementia eg AD and Vascular Dementia?

Now that she has had a stroke, is it possible that her falls were due to her having TIAs or mini strokes?

You say there is no medication but there are medicines for AD that don't cure the disease but slow down the progression? Various combinations do drugs are used too.

Why do you consider there is no treatment for my mum? Can you at least try her on these medications to see if she gets any benefit from them? At least then we would know that we had tried, especially when she is relatively young still.

Could part of mum's problems be as a result of the operation to remove the clot when she had her stroke? Or the anaesthetic?

I don't like to feel that there is nothing whatsoever that can be done to help my mum. If medications is not an option then what can we as a family do to help improve her quality of life? Would day care help her in any way?

If you feel the consultant is effectively writing your mum off by not being willing to try different things, my final question might be...can you tell me how I go about getting a second opinion? LOL

By asking these types of questions is shows the consultant that you have done your homework. That you're not wanting to bury your head in the sand and to be fobbed off. That you as a family have your mum's interests at heart.

At the end of the day a diagnosis usually serves 2 purposes. The first is that it opens up the potential opportunity for medication if there are any that are suitable and secondly it opens up the access to any support services that your mum might need. Outside of that you will find that you end up dealing with the actual problems or issues of the day because these are the things that will help your mum. All else is but a label isn't it?

I hope you get the answers that you need and more importantly that you and your mum get the day to day support that you need right now.

Fiona
 

Chook

Registered User
Jun 14, 2013
238
0
Westcountry
I have no advice but just wanted to say hi and I'm so sorry that you're going through this with your mum. 64 is no age at all is it :-( My mum was in her late 60s when she got diagnosed and it just seemed totally unfair.

Big hugs and I hope you find the answers you need soon.

Chook
xx
 

babes

Registered User
May 30, 2008
12
0
Norwich
welcome

I have no advice but just wanted to say hi and I'm so sorry that you're going through this with your mum. 64 is no age at all is it :-( My mum was in her late 60s when she got diagnosed and it just seemed totally unfair.

Big hugs and I hope you find the answers you need soon.

Chook
xx
just to say welcome & hello so sorry to hear about your mum!!my mother was diagnosed in the yr 2003 she has lewybody dementia!!mum was always falling over!!but now she has stopped a lot of walking now because she doesn't feel it is safe for her to go walking alone anymore!!life is so unfair my mum is now 78yrs old! my mum is doing very well so far so good!!its because our family have never given up!!sometimes we have felt so low all u wanted to do was die in your sleep!so we didn't have to face another day of the saddness we feel cheated of our mother!!who we lost in mind 10yrs :)ago!!but we will never walk away from my mother!!!we are human at the end of the day its so bloody hard to carry on sometimes so we know how u feel!!chin up keep fighting!!:):cool:
 

cusack55

Registered User
Aug 23, 2013
1
0
Mom diagnosed with DLB

Hello all,
Mom was diagnosed yesterday with DLB which totally devastated her, on exit from the clinic she became withdrawn and more confused as she told me she was expecting good results and there to be no signs of dementia just degenerate memory loss. My mother is a very strong independent person who goes out everyday shopping and visits her sister who has severe learning disabilities. My mother has known for the past eight months her memory is failing and most days she's very confused but she was not willing to except there was anything wrong. Recently mom has become tearful and very depressed and unfortunately has taken to having alcohol (mom's way of coping, try to erase the problem), obviously this is making matters worse, as we want the best for mom I am not sure the next appointment with the clinic will help due to medication for DLB will be prescribed and as mom is in denial will this make her worse? Mom lives on her own since my dad past over ten years ago and has always led a very independent, active life. Mom has never held close friends and has no social life, she is very much a loner and would never ask for help (she was the carer who supported everyone). We have tried suggesting (me, my sister & brother)in turn we stay overnight to support her, mom gets angry with this suggestion even though we know she is becoming fearful & anxious. Has anyone any advice how to deal with mom without making her more anxious?

Many Thanks