Anyone in their 30's dealing with a parent who has been diagnosed AD?

sandy25

Registered User
Nov 30, 2005
54
0
In my 20's!

Was 20 when he was diagnosed - now 26. So really its all i've known in the 'grown up' part of life. Don't think much to growing up!
20 years where I didn't really get to know the real dad, thought that could wait. Too late now
:(
 

cgf

Registered User
Sep 12, 2007
17
0
It saddens and heartens me at the same time to hear all the stories of people coping and adjusting to the life changing experiences that comes with dealing with the diagnosis of someone so young.

I am struggling with the idea that Mum may need to go into full time care. I just cant imagine her in a home surrounded with older people that ordinarily she wouldn't be socialising with. I see all her friends and people of her own age and they are enjoying retirement etc and I cant equate her living in a care home environment. I feel awful for feeling like this but this wasn't how it was supposed to be.

I just cant get my head around the fact that I might lose Mum in the future and even though I'm in my early 30's I still sometimes feel like a child myself and really want my Mum there for me for just that little bit longer.

Mum as I have previously said lives on her own on a retirement complex with active people there to enjoy the latter years of their lives and to participate in all that, that entails, and I would ideally like her to remain independent for awhile longer but when does that become a life of struggle for the sufferer? I know Mum struggles to keep up and every day and feels that bit more alienated from everyone she lives around. I'm not sure Mum would like someone in her 'own home' to be helping her and invading her space and for the friends that live around her to know that she is receiving that kind of help and although the thought of a home terrifies me would it be better for her to be safe and well looked after rather than her just muddling through each day and becoming exasperated regarding her own failings and for us to be constantly worried about her every moves each and every day? I dread her doing something that would utterly humiliate her and cause her such upset.

I will come to terms with this eventually it's just so hard. I again thank everybody for their postings they are of huge benefit.
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Hi cgf

it is so difficult, isn't it?

in my experience of dementia all sorts of things seem irresolvable because we are unsure of when the right time will be, and we don't want to do them anyway.

then one day, it suddenly becomes apparent that something has to be done and this is the time. Then we have to consider the unconsiderable, and work out the hows and whens.

I'd be keeping a close eye on mum to see how she continues, while slowly yourself coming to terms with the fact that changes will have to happen in her life. those changes may not be as bad as you currently believe because your Mum will have moved on a bit in her condition, and the alternative will be worse.

It is all a question of balance.
 

Cymbaline

Registered User
Aug 23, 2007
36
0
I'm 33 and my mum who's 61 has had AD for the past 12 years or so. I can't remember exactly what age she was diagnosed with it but she started developing noticeable symptoms in her late 40s. My father who's 63 is her carer - he retired early to look after her, something I'll always be grateful for.

I find it tough in a different way to my father. He's got the really though job - having to deal with my mum day to day. My job takes me away from home during the week and that's saved my sanity. I come home most weekends to give my dad a break and to help out. That's had its good and bad sides. I'm torn between wanting to live my own life and being pulled back towards home where things are getting more difficult. I never had the carefree 20s in the way that my peers had. Sometimes it bothers me, usually it doesn't. Having said that, I feel my life has passed me by a bit because I'm 33 and single etc. Then again, I just would love to cut myself loose and not have to worry about anyone ever again - no husband, no kids.

It took me a long time to accept my mum's Alzheimer's and it's only in the last year and half that I can talk to anyone about it without bursting into tears. When I was growing up, we were very close and I miss her dreadfully. I never thought I'd have to dress my mother, change her pads, liquidize her food or help her with other ordinary everyday things that we all take for granted. It's like we've switched roles - now I'm the mother. Because it's been such a long drawn out process, it's given us time to adjust. From a family point of view, I think the saddest thing is that our memories of what a wonderful person my mother was have faded and are being replaced by what she is now :(
 
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DianeG

Registered User
Oct 12, 2007
50
0
Glasgow
My mum is just 55 with AD (I am 33)

Hi

This forum is a god send. I have felt so alone since my mum was diagnosed earlier this year. I felt like no one my age could possibly understand how I feel - like I was/am losing my my mum and anger (why us?). My brother is not around much at all (long story) so that leaves me and dad. Dad seemed to be in denial for a while but gradually the AD words can now be spoken and we all don't break down and cry.

My mum was prescribed the drugs to slow down the condition but her and my dad decided to stop them as she felt 'drugged up' and didn't want to feel like that. For a while I felt like the only one flying the NHS flag and saying she needed to take them - I just wanted to hold on to my mum for as long as possible. Anyone else feel like that? She has not been on the drugs for a few months now and I think she is better without them. Invitably she will decline but she says to me privately that she would say if she was unhappy with the treatment/care/attention she was getting.

Sometimes I think she is really really bad with AD and then other times I think she's ok and will live forever the way she is. Summary of how she is at the moment - can't work anymore, doesn't write, can't drive, visual spacial problems - bumps into things lots, struggles to turn on lights and pick things up, doesn't write, I had to undress and dress her the other day in a shop changing room. We tend to focus on negatives but I am trying so hard to focus on what she can do and build on that if I can. I find that her confidence is completely gone and she doesnt participate in conversations easily and when she does she finds it hard to articulate what she wants to say.

Sorry this is so long! I think all us 'young ones' need to keep talking - it may help us learn to cope with whatever life is gonna throw at us next.

I find that huge hugs make a huge difference to both me and my mum. So huge one to each of you out there.

Diane x
 

david1975

Registered User
Oct 15, 2007
1
0
London & Suffolk
wow... me and my sisters thought we were alone with this. it is helpful to read that there are people in such similar situations as us. i am 32, my sisters are 33 and 35. our mother is 63. a few years ago she was the life and soul - now she is a shell of her self. some of you describe your feelings and your situations in a way that could have come from my own family. we have been told that mother has "lewy body" type dementia - does anyone else know about this? my dad is looking after her at home but it is practically impossible for him now. he is very low and is frustrated and angry and his patience is running out, which is horrible for my mum but understandable. they have lived in the same house for 15 years but mother cannot find the loo on her own. they have no conversation. she sometimes asks me about "david" - not realising that i am her son. then 5 minutes later, she will know exactly who i am. she cannot write or read or tell the time. but every now and then she smiles or has a period of time when everything is more or less ok, but those moments are so brief and so rare. her diet is really bad - she hates all foods and this is a real problem (on top of everyting else). if anyone has experience with this, that would be good to know too. becuase her diet is so bad, we have to convince her to eat protein milk shakes. her weight dropped alarmingly over the summer but it is better now - however there are further complications because of the diet. she seems to be in constant pain. i am glad to have read the posts on this website because, as has been mentioned above, friends dont always really understand it... "is your mum any better now?" etc... no, she is only getting worse and will continue to do so... it is very difficult. it is warming to see that so many poeple are getting the benefit of reading this page, just like my sisters and i have done. Thank you.
 

Kate P

Registered User
Jul 6, 2007
565
0
Merseyside
And there's more...

Hi,

I'm 29 and my sister is 32 and our mum has had FTD for four years.

I know what you mean when you say that friends just can't understand. To be fair I doubt I would have if it hadn't happened to us.

I think our friends just don't know what to say - they know she won't get better and they know the problems we have and I think they just can't think what to say about it.

That's what I like about TP - people on here truly understand what you mean, how you feel and what you're going through.

Before I found TP I was on the point of cracking up but now I'm feeling strong, confident and on days were I'm not coping I know I can come on here and have all the support, understanding and virtual hugs in the world.

I'm really surprised there are so many of us - I hadn't realised.

It does beg the question then why more facilities/care/consultants are not available for "young" dementia? I'm having hell getting any help from anyone at all. Even our consultant is no damn good.
 

cariad

Registered User
Sep 29, 2007
89
0
Hi Kate! My mam was diagnosed a few weeks ago with AZ but now the neurologist thinks it's FTD. She doesn't have amnesia like what you'd expect with AZ and she still dresses and cooks for herself. She has little facial expression and 'says it as it is'! She is 64 (and I'm 36). We are now waiting on MRI results to see if they can shed any light. How long did it take for your Mum to be diagnosed? Apparently, as FTD is much rarer than AZ, it is harder to diagnose and people are often misdiagnosed with late onset depression, then AZ then finally FTD. If you have any advice for me as a carer, I'd be grateful. Also, I'd be interested to hear about your mum if youdon't mind.

Love berni x
 

Kate P

Registered User
Jul 6, 2007
565
0
Merseyside
Hi Berni,

That sounds pretty much the course of what we've been through with mum - at first it was depression, than as her speech become much worse we thought it must be more serious but dad wouldn't take her to the GP. Eventually as her behaviour started to go (late 2006) she was forced to finish work (she doesn't know that, she thinks she took early retirement - luckily I work for the same organisation and was able to arrange things).

We've since seen a consultant who said she had a mental block, then one who said it was dementia but they didn't know what kind. When I said I thought it was FTD she said it couldn't be because it didn't effect speech!!:eek: The next consultant said it definitly is FTD but the past consultant (who we still have to deal with) it disputing the diagnosis. That's pretty much where we are at the moment. It's taken us four years just to get this far!!!

If you want to PM at any time to discuss any specifics feel free but I won't be on here again until Friday (work stuff :( )
 

Westie

Registered User
May 14, 2007
155
0
63
South East London/Surrey border
Hello Berni,

Although no longer in my 30's, I care for my husband who was diagnosed a year ago with FTD at the age of 51.

Your description sounds like our experience as well. Originally it was thought Peter had depression, then some sort of 'mid life' crisis. It was only after a brain scan showed serious deteriation of the frontal lobes that a firm diagnosis was made. That has since been narrowed down further to Picks Disease.

Like your Mum, Peter has no memory problems at the moment. But he has lost the ability to feel anything. No emotions, no empathy, no social skills. He looks and sounds very flat all the time. He is very, very restless and is unable to concentrate on anything for more than a few minutes. Due to losing various inhibitions he says whatever he is thinking - even if totally inappropriate at that time.

I have found it a nightmare to find any services suited to him but I think it varies from area to area.

I won't pretend that FTD is easy to deal with as it isn't and I have found that most people just don't understand what is wrong with Peter. He doesn't present with typical Alzheimer symptoms so others find it hard to understand he has dementia.

If I can help in any way, please ask away.

Mary-Ann
 

jc141265

Registered User
Sep 16, 2005
836
0
49
Australia
Count me in..

I am 32 Dad's 63, diagnosed at 53ish (tho my dates are getting hazy) with early onset dementia, so I was about 22 at the time...seems a lifetime ago...and not a life I would have chosen!!
As a child of a young sufferer these are the things that hit hardest for me:
1. For a very long time I mourned the fact that I never really got a chance to talk to Dad as adult to adult, to know him as a person, rather than just my Dad.
2. Seeing my father naked was something hard to come to terms with at first, but I have ended up not being bothered by it at all and when it used to seem to bother him, I did my best to save his dignity in many subtle ways;
3. Back on 1., I found it very hard to be sure I knew who my Dad was, to know if my memories of him were true because other people who knew him as a person had an entirely different opinion on who he was, whereas I saw him a my protector and saviour and creator in a way and all my memories were blurred by a child's perception;
4. I found myself now thinking of my father as 'my poor baby', as my child. Its very weird to have this change in relationship occur because it changes the way you hug and kiss and touch the person too;
5. I lost my ability to connect as well with people my own age, because whilst they were out having fun, meeting other young people, travelling and kick starting exciting careers I was dealing with a parent that seemed to die each day - my life for the past 10yrs seems as if it were put on hold;
6. There was a lot of grief and I mean a lot, leading me into times where I thought I might be suffering depression, times when I just didn't think I could carry on holding onto a job;
7. Made me question how could there be a God, how could a God be so cruel to do this to someone;
8. Made me stop believing in fairy tales, happy endings and dreams for a very long time;
9. Had always thought prior to this that everything that happens to us in life happens for a reason, so we can learn and grow from it, but I just could not make sense of this disease, couldn't see how any good could come from it;
10. Suffered many fears and dreads that I might also end up getting this disease at a very young age;
11. I mourned the fact that Dad would never know my children and my children would never get to know him;
12. I have wondered a lot about what my life would have been like had this not happened, would I have travelled the world like I had planned to, would I have had children, would I have gotten married a lot younger, etc;
13. I have wished and wished and wished, and continue to wish to have my Dad back. I dream he gets better and I wake in the mornings to the truth, it never stops being heartbreaking..I am hoping that this will get better after he passes on, that the fact that he is always here and yet not here is what makes it so painful;
14. It has absolutely blown me away to discover how much I care about him, how can I still be crying about this after 10years???!
But to sum up after 10yrs experience:
I am a stronger person for it. I value life. I appreciate every wonderful moment of it more than many others do. I love my Dad more than ever and am so proud of him for fighting on for all these years.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
Dear Nat.

I seems that everything you respect and admire about your father, has been passed down from him to you.

Love xx
 

DianeG

Registered User
Oct 12, 2007
50
0
Glasgow
Incredibly brave

Nat

I have just read your post and finished with the biggest lump in my throat but also the biggest smile on my face. You have touched on so many of the feelings I have about my mum and I am so glad you took the time to shared them through TP.

One point in particular you mentioned re: wondering if you yourself could in fact develop the disease, is something I too have worried about and couldnt get out of my head for a while. I still think about and have no idea how to cope with it other than pushing it to one side of my mind and trying to keep going with everything else at 100mph! I am more forgetful myself than ever at the moment and have silly thoughts about it happening to me right now (please tell me this is normal - anyone??) but I am trying to convince myself that is just because I am juggling many balls (like the rest of you) i.e. work, run a home, bring up my son and live a normal life.

Nat - I think you are incredibly brave to be 10 years on and delivering your message in such a strong and postive way.
 

DeeC

Registered User
Oct 16, 2007
1
0
Hi cgf

I can really understand how you feel......I am 31 and my mum was been diagnosed with Alzheimers 2 years ago when she was only 61.
I find it very hard even now to talk about it as it is only now my mum is starting to get worse. She too was first diagnosed with depression. I have started seeing alot of changes in her now and it is very very frightening.

I also feel for my dad who is now 63 and still works full time and looks after my mum with the help of carers and myself. It is so sad to see how he has to deal with things and watching him see his wife he has been with for years deteriorate into somebody we do not know.

Even now i find it so difficult to talk about it, i try to be the strong one in the family, i also have 4 brothers who just really block everything out as they cannot handle to see what she is now like. She doesn't know there names, she still knows my name and my dads name and my younger brothers name.

I got married a couple of months ago, i just wish my mum could remember the day, it wasn't the same as i didn't have my mum to help me with the preparations, i did it all on my own and i have such a big family, i am not the sort of person who asks for help.

It is nice to read what others are going through as it makes me realise i am not alone. My husband and friends try to talk to me about it but i find it difficult to talk.

Love Dee
 

cariad

Registered User
Sep 29, 2007
89
0
Hi mary ann and Kate,
Thanks for taking the time to respond. This FTD really is a strange illness isn't it? My mam looks so normal (apart from the lack of expression), yet she acts like a stranger. Manners are now non existent and I dread walking past anyone even slightly different looking in the street as mam points it out. She is totally self centred (opposite of the beautiful caring woman she once was). She says the wrong words (like, there's a big snake by your feet). It was a worm and I've now recovered!! She appears to understand languauge but doesn't really. She says yes and nods like she understands but her comprehension is very poor and her speech is slurred. Her memory is going slightly but hardly noticeable. I hope she stays like this for a while though because there is still so much she can do.
 

jc141265

Registered User
Sep 16, 2005
836
0
49
Australia
To Dianne and anyone else feeling the same...

Diane,

Just in response to your question about your forgetfulness...
I have to say, its very possible that it is just the stress and strain of your situation as I went through some bad periods of forgetfulness where I would do things like forget the name of a person I worked with everyday while I was talking to them. :eek: One time I actually couldn't remember where I was when I went to the toilet, didn't know what building I was in and what I would see when I opened the door to leave!:eek: :eek:
I also often had what I called a 'slipping sensation' in my head where it was almost if I blacked out or got dizzy for just 2 seconds or so.
Last year I developed piercing shooting pains in my head that would wake me up in the middle of the night and have me in agony that no painkiller could get rid of...
My hormones also have been crazy over the last 6yrs or so.
BUT all of these things have finally passed it seems, my last headache was August last year and lately I've had no other worrying symptoms either.
Its all very frustrating because everyone (including yourself) thinks you are obsessive and just worrying too much about the possibility of getting this disease, but the stress of the situation and the additional stress that occurs when you find yourself being forgetful etc makes feeling normal almost impossible. Its a vicious circle...many people will tell you to stop stressing, calm down and then the symptoms will go away, but there is no escaping the stress. AND..sometimes you need the stress, relaxing can often mean risking falling apart!!
So I won't belittle you and tell you to calm down and stop stressing, but I will tell you that unless there is evidence of the disease running in your family, there is a very high chance that you like I was, are just suffering from a body and mind that is over exhausted.
I advise seeing a doctor if you are truly concerned, but be aware that there is a good chance that unless you have obvious external symptoms they might suggest you could be depressed,... duh who wouldn't be?!
Some people find in this situation that anti-depressants do help them so you could try that...they might not help either though. They won't help you unless you are actually suffering from a depression caused by an imbalance in your brain's happy chemicals which could be the case as excessive stress can cause this. But if you are like me...its not the brain chemicals that are the problem it is just the completely sad and seemingly never-ending situation you are in.
So all I can say is just try to keep your chin-up, and remember my favourite saying, this too in time will pass.;) The odds are in your favour that you will not get this disease.
 

cgf

Registered User
Sep 12, 2007
17
0
I read the thread about some AD medication that can in effect turn people into zombies. I have been told that it will even out her mood swings, which she has plenty of. Mum is to be prescribed Aricept next week has anyone any info on this or any experience of it.

Mum is finding it increasingly difficult to manage with every day things now. We are experiencing her putting on different shoes now and not being able to see the mistake. Not being able to carry out tasks to there conclusion. Diet has been bad for ages now as she can't cook or prepare the simplest meal. Making a cup of tea now is a huge effort.

We are in the dilemma now of whether Mum now needs more full time care and 24hour care and support. She lives on her own and there is a real fear that she will come to harm or certainly make a serious mistake one of these days and it occupies my thoughts constantly that something needs to be done but it's such a big step. As Mum is still young I don't want her in a home surrounded by much older people and that hindering her emotionally each day and certainly not helping her state of mind emotionally either or it not keeping her stimulated enough. Does any one have any experience of looking for care for the younger sufferer?
 

Petrus

Registered User
Aug 7, 2007
61
0
Northumberland
Some Answers

CGF,
You have my sympathy. My wife (J.) was diagnosed mid last year at 61. Our son (A. 35) who lives 300 miles away helps me from afar but he is (properly) busy with his business and his young and soon to be expanding family. We are a close family and the diagnosis hit him just as hard as it hit me - we have sobbed together on more than one occasion.

There is a society fact sheet on Aricept http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm you can get further info. if you google. I have found the NICE report helpful as well as the Mayo Clinic site in the US.

In essence the message is, there are some undesirable side effects for some people so the dose should be built up in 2 stages. The benefits are hard to see (i.e. probably aren't any) unless you are one of the lucky ones that sees a very clear benefit in the first 2-3 months.

Homes for younger people are essentially non-existant - not surprising since the disease among younger people is relatively rare. Further, most homes are only licensed for people 65 and above - but an exemption for a younger person can be obtained and I am told it is a rubber stamping exercise.

I am working to have J. go into respite care next month. Today she visited the home at the top of my list for a couple of hours including lunch. The staff (understandably) were horrified when she got up from the lunch table and made to go out for her walk. Not surprising since she walks 3-8 miles over the hills each day (with me and the dog) and swims for 30 minutes. Physically she is young for her age; mentally her skills are about gone (she is severely demented and can do virtually nothing on her own and I have to be with her 24/7). Today's problem of no walk is related by her to an incident when she went walk about on holiday at the age of 9-11. She told our son that she "Felt like a little child with all those old people but was not allowed even to go out on my own - something anybody would do and I always have". It took us about 5 minutes to get this message clear when she talked with A. on the phone to tell him about her day. Admittedly the message was especially confused because she was so angry and frustrated. To be clear: this is not the home's fault; it is this wretched disease.
 

VIB35

Registered User
Oct 15, 2007
27
0
Herts
Aricept and care at home...

Dear CGF
I have read your message and sympathise with you. My mother has AD and is only 63. She was prescibed Aricept last year and sadly it did not help us. We had our hearts set on this huge improvement in my mother but sadly, it was not to be. She has also tried Exelon - again to no avail. I have heard of many success stories with Aricept so my fingers are crossed for you. I think it was too late.

We have also got to the stage where we require more help at home. My father is her main carer but is absolutely exhausted. We have used Crossroads, CareUK and lately have found another agency, Allied Healthcare who provide care for 8 hours at a time. This has proved successful and the lady that comes to us is lovely and well experienced. I'm not sure where you live but I think Allied Healthcare have offices around the country. They also provide o/n care when required.

Like your mother, we felt that a care home was out of the question, due to my mother's age and would like to keep her at home for as long as possible. She can no longer be left alone and her diet is also terrible. She has to drink these horrid milk shake drinks to get some minerals etc in to her. Does your mother have these?

I think this forum is invaluable - there is not enough help out there for younger sufferers and their families. This illness destroys so many peoples lives and there is no where to go for help.

I, too, am in my 30's and feel so sad to have 'lost' our mother so early on....
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Post Code Lottery

My husband at the age of 58 was diagnoised with. A.D. What I find so distressing apart from the disease, is how long people are waiting for diagnoises.
From the day I took Peter to the Doctor's (and he had lost his memory completely), withing the week all the scans, spending a day at Oxford and we received the diagnoises that day. Peter was put on Aricept - no side effects and it took me 8 months working with him on a daily basis i.e. name, address, date of birth. I know they have problems finding Day Centres, Care Homes to place the under 65's in. From the time of diagnoises at our local Branch are working on Doctors giving Carers all the relevent information that we need. This will take time and I know it is no conselation for us at the moment. My heart goes out to all of you yound people who are going through this herrendous illness. So many of you have young children (I have young Grandchildren), some of you have jobs. Having to cope means your lives are put on hold. Until the Powers that be understand what Carers and the families understand our plight, it is a long hard, stressfull live.
I wish you all the best. Thank God for T.P.
Christine