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Support with Familial Alzheimer's disease

twrist

Registered User
Dec 12, 2012
2
Edinburgh, Scotland
Hello all. I would be very interested in attending the event in February. I'm a teacher and luckily it falls during my mid-term break so I should be able to make it down - is there a procedure through which I have to book? If someone could let me know that would be fantastic.

I am currently in the process of deciding whether or not to have 'the test' to see if I inherited the gene. Having just got married in October it is proving a more difficult decision that I anticipated, but I would love to be more involved with the research and hear about developments.
 

XY123

Registered User
Jan 2, 2010
31
Hi

Hello. Looks like I'm joining the FAD club too (not that I want to). Mum has been diganosed age 53. Her brother has it aged 55. Her mother and two aunts all had early onset too (all by the time they were 50).

I'm waiting to see a geneticist and have counselling but I'm not sure what I will decide to do at the moment as I'm 31 and have three young children.

I'm keeping it together for those around me but am feeling unbelievably upset and anxious about everything. X
 

BungleGirl

Registered User
Sep 23, 2009
74
Lowestoft, Suffolk
Sorry guys, I haven't been on here for a while!

Firstly Fozzy - don't panic. If you don't have a strong family history of Early Onset Alzheimer's I wouldn't worry too much. There are lots and lots of people here on Talking point with a loved on with Early Onset Alzheimer's and no further family histpry of the didease. The Familial form of it is very, very rare. In my family, I know that my mum and aunt had it and also their father and 2 of his three siblings also had it.

twrist, if you send me your email address in a private message I can email you the FAD support group newsletter that has details of the meeting and who to contact to let them know that you are attending.

XY123, I'm really sorry that you have found yourself here because of your family history - I really do understand, it has taken me years to get my head around it and I can't quite believe that I can actually say that I am okay about it all 95% of the time - I never dreamed that I would get through the panic and anxiety but I feel that being as informed as possible and also doing as much as I can to help the research has really helped me. If you would like details of the FAD meeting, just send me a private message with your email address and I'll forward the details to you

Sophie xxx
 

Arnie S

Registered User
Oct 11, 2011
2
I am having a bad day today as my husband said his life was not going in the right dirrection and wanted a divorce, is it common for sufferers who have other health issues to say things that they regret later and how does their spouse or partner copes with that. Advice needed for a distressed carer of a FAD Sufferer

supernurse
Hi Supernurse,

This is my first post. I am sole carer for my Early onset wife.

For a long time before my wife was diagnosed (Oct 09) she routinely told her friends and family that she was being mentally abused by me. More recently she has told them that she wants to be away from me. She does not believe we are married, (our relationship go back about 15 years).

What is painful for me, is not that my wife says these things, she has a serious disease which affects her mental state. What is really damaging to me and has made life unbearable at times is that some people believe her and have reacted negaitvely towards me.

I am receiving professional help to deal with this and benefitting. I now accept that I should not take it personally. I also see the humourous side of the things she says and I have a wedding photo to produce when she denies the marriage. Of course only a short while after making her pronouncements she promptly forgets what hse has said and life moves on.

Don't take it personal. Smile/laugh at lot and remember the good times
 

cmcc84

Registered User
Feb 27, 2013
2
were do u go for help & support?

My stepdad has a bad background with his mum, cousins, uncles, grannys all being diagnosed with FAD. He is now showing signs & my mum is distraught & they don't know who to talk to. It's hard when she gets upset when talking to me. I don't know the words to say. It's all very raw & I feel that there is no hope.
 

shelley c

Registered User
Aug 7, 2013
12
Hi there,

Problem is that afew weeks ago my sister turned the age at which Mum became ill.....and to be honest, I am struggling.
Dear friend, the fact that your mother suffered dementia does not mean that your sister or you will suffer it. There is a dementia component which is genetic but it is not just that.
Think about this: if all the people related to a person with dementia would develop the condition, a greater percentage of the population would develop it. Microgaming develops the games. For more info click here.
I just suggest you to take it a little more easy. Just keep a eye on her but don´t panic.
My grandmother´s sister died after living a long period with dementia but my grandmother herself is now 90 years old and walks two miles every morning.
 

Nuttyneddy

Registered User
Oct 3, 2013
1
Worried about my husband

My husband's mother, her sister and their mother were all diagnosed with dementia in their early sixties (his aunt just recently, which is what has suddenly worried me).

I am worried that he will become a sufferer as well (he's 51) and I don't know what to watch out for, or what to do. His mother is very bad now, although when I first met her she was just a bit forgetful - repeating herself in conversation etc. She attends daycare five days a week now, and she has two carers who come to the house morning and evening to dress and undress her as she will not let her husband near her - swears at him and tells him he's a "bad man".

I know it's very selfish of me, but we have only been married 11 years and I am worried that we may only have a decade left of being "normal". I know nobody knows what is around the corner, but I don't really know what to do (if anything!)

I'm not really close enough to his father to ask him.
 

ajax

Registered User
Oct 21, 2013
4
uncertainty

My husband's mother, her sister and their mother were all diagnosed with dementia in their early sixties (his aunt just recently, which is what has suddenly worried me).

I am worried that he will become a sufferer as well (he's 51) and I don't know what to watch out for, or what to do. His mother is very bad now, although when I first met her she was just a bit forgetful - repeating herself in conversation etc. She attends daycare five days a week now, and she has two carers who come to the house morning and evening to dress and undress her as she will not let her husband near her - swears at him and tells him he's a "bad man".

I know it's very selfish of me, but we have only been married 11 years and I am worried that we may only have a decade left of being "normal". I know nobody knows what is around the corner, but I don't really know what to do (if anything!)

I'm not really close enough to his father to ask him.
it seems you need to find a way of expressing your worries with your husband he maybe worried too!!
 

shelley c

Registered User
Aug 7, 2013
12
I really don´t think that every person with relatives with certain decease should worry and just continue worrying. Just enjoy the games in online casino united kingdom - Spin Palace and that´s it.
Fist thing to do is to visit a doctor and ask all the questions you have and make all the studies the doctor says. And if everything is ok, then enjoy life.
If you worry too much you will finnally have another condition.
 

carpe diem

Registered User
Nov 16, 2011
433
Bristol
Does my family have FAD

This is the toughest question I face every day. Does our family have FAD?
My mum has dementia, my gran had it and my great gran had it, all in their 50s. All the women in the last 3 generations have had it. Me and my sister both believe it is inevitable we will get it.
We have asked about tests but the consultant said "I'm not worried about it", what a joke but they don't know everything about genetics and even if it's not FAD it doesn't mean there is not still a genetic disposition. There obviously is.
How do I cope? Well I live life for now, seize the day. Try and make sure my hubby knows what I want for my future care and make provisions to provide that.
I've grown up with dementia being part of every day life since I was a little girl, it just seems like a normal progression that I have to accept and I can't change it.
I have not had children so it stops here.
 

grannyannie

Registered User
Jun 9, 2011
28
Gloucestershire
Fad

My Mum in law had vascular Dementia and Alzheimer's
My Hubby is 60 and has been diagnosed with Dementia
Now his 62 year old brother is showing signs of it
Our children are 35 and 36 , would it be wise to raise the question of testing for it ?
It is such a hard decision, is it better to know ?
I think I will research the topic further
 

BungleGirl

Registered User
Sep 23, 2009
74
Lowestoft, Suffolk
In general there is a very strong family history e.g. Parent & Grandparent having early onset AD. In my family and the other families that I know with FAD there are so many involved - patents, aunts, uncles, grandparents and their siblings and cousins too. Do you know of any other family members affected? My understanding is that FAD can't start sporadically, it can only come from a parent which is why there is usually lots and lots of family members affected. You could speak to your GP about genetic testing - it takes time as you have to have time to speak to a counsellor and be sure of the consequences and the impact that knowing would have on other family members. I do hope that it isn't FAD that is affecting your family. X
 

CatAnn

Registered User
Jan 12, 2014
1
Illinois
I am having a bad day today as my husband said his life was not going in the right dirrection and wanted a divorce, is it common for sufferers who have other health issues to say things that they regret later and how does their spouse or partner copes with that. Advice needed for a distressed carer of a FAD Sufferer

supernurse


I am so sorry to hear this. I am 59 and have EOAD. I have said those words to my husband. I don't know why this happens. Sometimes I feel scared, overwhelmed, sick of being sick! There are times like this, when I am clear minded. Should I remember some of the mean things I said, I apologize to my hubby. He is a very patient man. He puts me at ease when he says, " That's okay. I don't know what your world is like and how you can be at your best when your life is falling apart". I was and sometimes still is resentful because of my dementia.

Your husband does not know how to express what he feels. His brain is literally scrambled. The only way I can describe it (in my case) is this brain is screaming but but it can't get out. I don't know what stage your husband is in. Really, who on earth knows until the end stages. He might not remember what he said. I am sure he would feel so remorseful if he knew what he had said. This is hard for me to say to you, but he is now a different person. I am thankful that I still have the skill to communicate though I have no recollection of time, numbers, dates. I have a volunteer who helps with computer once a week.

Again, I am sorry ...my mind gets very tired after I write as much as this. I am drained. Hugs. Please take care of yourself.
 
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jojouk

Registered User
Oct 25, 2015
1
I am 46 years old an both my mother and my grandmother developed AD age 50. I don't know anything about my grandmother's family I think she was an only child....my mum was an only child, her father died when she was young, I never knew him.

I could never have my mum tested for the early-onset-familial-alzheimer's disease gene (or one of its mutations PS1/PS2/APP...) when she was affected, the doctor said he'd give me the 'kit' to test her but the kit got 'lost' somewhere and my mother died and was cremated..fast forward 12 years and I have just had my blood drawn this friday gone for a full 'dementia genetic screening' (to screen 'predictively') to see if I have inherited the AD familial early onset gene (well, one of the mutations known).

As they are screening for all known mutations so far I will have to wait 6 months for the results.

Although I am of course 'anxious' I am also 'very relieved' as I feel I 'have to know' if this 'cloud' is hanging over me or not, especially as I am approaching the age of onset for both my mum and grandma...
 

Vara

Registered User
Dec 31, 2015
6
Fad

Hello, I have just joined TP and am looking for support and information on helping a family member who has had a blood test which was positive for FAD. She is now in her thirties and I think she is showing early symptoms. How and when do I break this news to her sibling. I am having many sleepless nights.
 

Gemma112

Registered User
Feb 17, 2016
1
Hello everyone!

Hi there,my dad has been diagnosed with early onset Alzheimer's,he is nearly 58. We are all upset and I'm struggling with it to be honest,I've joined here in the hope of getting some advice and being able to chat to people in the same position.
 

Welshblack

Registered User
Aug 9, 2015
26
Anglesey
Hi there,

This is kind of difficult so please bear with me. We have familial alzheimers in my mothers side. It was all confirmed and the like while she was alive. She died 10 years ago and we have all pretty much ignored the implications, just getting on with life and not worrying about the future. Problem is that afew weeks ago my sister turned the age at which Mum became ill.....and to be honest, I am struggling. I have no one to talk to about it as my mums family have all but deserted us. I cant talk to my sister about it because I know that she is terrified and if she knows what's going on in my head, it will make it even harder for her. All my friends turned tail and bolted a long time ago and my partner doesn't need to hear the things that are going through my head!! I was hoping that there may be someone around that can understand some of how I feel and maybe lend a friendly ear?? Or at least point me in the direction of someone that can? Thanks
Hi, are you still on here?
This is the toughest question I face every day. Does our family have FAD?
My mum has dementia, my gran had it and my great gran had it, all in their 50s. All the women in the last 3 generations have had it. Me and my sister both believe it is inevitable we will get it.
We have asked about tests but the consultant said "I'm not worried about it", what a joke but they don't know everything about genetics and even if it's not FAD it doesn't mean there is not still a genetic disposition. There obviously is.
How do I cope? Well I live life for now, seize the day. Try and make sure my hubby knows what I want for my future care and make provisions to provide that.
I've grown up with dementia being part of every day life since I was a little girl, it just seems like a normal progression that I have to accept and I can't change it.
I have not had children so it stops here.

Sent from my Moto G (4) using Talking Point mobile app
 

sford91

Registered User
Nov 4, 2015
112
How would I find out if my mum had the one that could be passed onto my sister or I? My mum haw early onset frontal lobe dementia she's 58 now x