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

[cgf]

Dear VIB35,

Thank you for your reply. I like you were, am hoping, that I will see some huge and life changing alteration in Mum when she begins the course of Aricept but after the few days I have just experienced I know now that I may have been clutching at straws.

Mum was admitted to hospital over the weekend after me having found her unable to move on her bed and then her suffering some kind of fit or seizure which was so frightening that I had to call an ambulance and she is now in hospital. She looks so scared to be there and I've had to reassure her a dozen times that I haven't put her away in the 'loony bin' and headed for the hills. She mentioned to my sister that she thought I had kidnapped her and it breaks my heart.

I am exhausted after the last few days and have had to cancel the appointment we had for the Aricept and the only saving grace I have been told is that I have Mum will now move up the ladder of importance and urgency for a social services assessment and some kind of help. It has to come to this for any kind of help to come our way, it maddens me.

I will look into Allied healthcare and see where they can help. Mum has been drinking the 'slimfast' milk shakes which contain vitamins and minerals and also, we thought, would help her with the weight gain that she had acquired in part due to her poor diet.

Thank you also to Pertrus I will look at the website you suggested regarding Aricept. I hadn't realised that we could encounter problems regarding care for someone under 65. I assumed it was a given that if they required full time care for something as specific as AD, then finding a place would prove not to be a problem?

 

[cgf]

To christine_Batch,

We had to wait 2 years for a diagnosis for Mum and now find ourselves in the situation where the disease it taking it's toll rapidly. We have even had it intimated that the medication may not work because we are a way down the road. She is now in hospital having suffered some kind of stroke/seizure which may or may not be indicative of AD and has deteriorated quite rapidly in hospital. At times it all seems so hopeless and unfair that we had to wait so long and lose such an amount of time when we could have been managing the disease at a much earlier stage.

I believe that she is more aware of AD than she lets on and is petrified of the future and where it will take her and that upsets me greatly.

 

[scarlett]

my mum was diagnosed in 2003 age 56 and i was 36 and as mum was lone parent there is no one else to visit or give support and initial diagnosis was devastating. Although my husband is great, we had only just married at that time, and my son from 1st marriage was 14 at time. I went thru a lot on my own as i felt i couldnt burden anyone with my grief. I know exactly what you mean when you say how hard it is for people our age to understand what we're going thru when they are enjoying relationships with parents who are young and vibrant, having been sheltered possibly from grandparents.
Its entirely NORMAL to have feelings of anger etc at how unfair this seems to be.
Remember there are many stages of greiving because of the losses we are having to deal with , not least the loss of the future we planned with our parent: the one we'd enjoy as two adults and which our friends take for granted.
we feel guilt...... where to start???? for things we might have said or done before we understood they were ill, for example.
I am so glad you've found talking point, everyone here is going thru it too but we're all at different stages. I only discovered it earlier this year and had no experince of it affecting this age although i am a nurse and have been managing nursing homes for last 10 years! how i wish i'd known before because really its amazing how common it seems to be.
when i took my mum out and she was a little 'odd ' like if a shop assistant asked her something and she couldnt immediately get it (early on) they would talk over her to me which greatly upset my mum whose IQ was 152 when she was 40.
people seemed to assume she must be mentally deficient or something because only 80 year old get dementia, don't they??!!!
my mum was a psychiatric nurse and used to say to relatives of people with dementia that "they'll be better for being worse" now i know what she meant
because for so long i felt i had to be with mum as often and as long as possible because i was her only link to finding herself and her memory but as time has gone on and she has got much worse she doesnt need me and 20 minute visits arethe normal now when i can as she speaks very little, needs all care and often walks off in middle. I take her chocolate etc and talk to her while she eats it but i know she now takes very little in. Theres a saying "what you've never had you can't miss" My mum cant remember having anything more than she has now ( true for at least most of this year as she deteriorated) in one way she has lived completely in the moment for a long time, imagine that nothing to worry about no wonder shes got no wrinkles! also as time has passed i feel better and able to cope.

sorry for the essay, i want to give some comfort to those earlier on in this awful, awful thing that you WILL cope and things wont always seem as bleak as they do now.
love , Scarlett x

 

[Grannie G]

my mum was a psychiatric nurse and used to say to relatives of people with dementia that "they'll be better for being worse" now i know what she meantx

Thank you Scarlett, that quote from your mother has pressed exactly the right button for me. It is just what I`m hoping for.

Love xx

 

[tmitch]

mum with the same

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

Hi there

I cant believe all of the stories on these pages, I am replying to this one in particular as it seems exactly the same as what I am experiencing. My mum has been diagnosed with front lobe dementia after 2 years of not really knowing what was the matter, they have thought for the last 6 months that it has been depression and she has been taking Sertraline anti-depressants for 6 months with no affect.
She has been under a psychatrist since April of this year and we have been told that she will get better with the medication, bu myself and my dad have seen no improvement, I am 34 and have a 13 year old daughter and my mum is 57.
We were told about 3 weeks ago by another psychatraist that it was frontal lobe dementia and an MRI was suggested to see how much damage has been done, we are still waiting for the results from this and are not sure long we will have to wait, but that is all we seem to have done is wait wait wait, and lots of other people seem to be in the same boat.
My dad is not coping well with her illness as she is accusing him continually of having an affair, she rings him 15 times a day, I think he is going to leave eventually, I am an only child and do feel an awful amount of guilt, that I should see her more, but as she can still dress herself and wash, do her hair etc, I dont want to take her independence away, but she cannot talk anymore, she finds it hard to have a conversation, she finished work in April and is no longer allowed to drive, she has an occupational Therapist who comes in once a week, which is great, I probably see her 3-4 times a week, but only for a short time.
I think its the not knowing how long before she gets worse is the hardest bit and what we are going to have to cope with then, I think she has had this for about 2 years now, thats when we noticed a gradual change

Its nice to be able to talk about this with everyone who knows exactly how it feels
Thankyou
Natasha

 

[NixiD]

I'm so glad I've found this site. I'd convinced myself there was no-one else my age going through this! My dad has alzheimers and was diagnosed 4 years ago but he had been behaving out of character for at least 2 yrs before. He is 64 now. I'm 36. I've spent my 30's trying to come to terms with this amazing man's deterioration. It's happening so quickly that we are living each month wondering what the next one will bring... I've changed so much too and have had counselling to help me deal with the intense anger and sadness but decided to stop because I felt I'd gone as far as I could or maybe I'd outgrown my counsellor as she could only relate to alzheimers because her 85 yr old mother has it but my dad is young and that's where the pain lies. I have watched a handsome, confident, hilarious, wonderful man change into a silent shell of what he was. To write this upsets me but I'm hoping to find anyone who is going through this because it has got to the point where I feel so alone. my mum is his carer but she has her pain to deal with. I speak to her every day to check on them both but we can't talk about our loss as we are trying to keep ourselves going. Coming from working class northern stock we have to be "strong" and keep going. I'm hoping to find a meeting of similar people in my area because I think that will be the way forward for me, even though I have great friends and husband and a gorgeous 16 month old they can't help or understand what I'm going through because they don't really want to imagine it. But who would even want to?!!! Some days I don't even want to go out because it makes me feel so sad but otherdays I go out and am so positive because I know my dad would be proud of me. Sorry this is the longest msg ever but I got so excited because there are people my age going through this!!! Hope to have a chat with some of you. Take care Nixi

 

[connie]

Hi Nixi. Welcome to TP, although sorry that you had to find us.

I am sure someone in your position will join in talking to you soon.

My situation is somewhat different, although my partner was 60 when he was diagnosed. As you describe your dear dad, you could have been speakig about my Lionel.

Here is the difference. His daughter has walked completely away from her dad.

I am so glad you are still there for your father, and you must be a comfort to your mum as well.

Bless you.

 

[Grannie G]

Dear Nixi,
I`m not one of the thirty somethings, but I just wanted to welcome you to TP.

I was horrified to read your counsellor was unable to help you because she could only relate to Alzheimers in her 85 year old mother. That says little for her counselling skills.

Can I just say, as a northerner myself, that as soon as you and your mother start talking properly to each other, the sooner you`ll be able to help each other.

You both have a unique relationship with a man you both love dearly, and his condition affects the two of you more than it affects anyone else.

You will get lots of support from other 30+`s on TP. but you and your mother really need to talk.

Take care.

Love xx

 

[Skye]

Dear Nixi, I'm afraid I'm and 'oldie' too, I care for my husband. But we do understand how you feel, we have to watch the suffering of our own families.

Please try to talk to your mum about how you feel. The trouble is, you're both trying not to upset the other, when in fact it would be good for both of you to talk.

You're welcome on TP at any time, and I'm sure that some of the younger members will reply to you soon. But why not also see what is available in the way of carers' support groups? I'm sure there will be some in Brighton.

Ring your local branch of Alzheimer's Society, they will have groups, but they may be mainly for older people. A better bet for you may be the Princess Royal Trust for Carers. They support any carers, not just AD, so they usually have younger members. You'll find the numbers for both of these in your local directory. PRT do also run a counselling service, so you might find that helpful.

And post here as often as you like.

Love,

 

[DianeG]

Nixi

Hi, I am 33 and my mum is just 55 with AD. I hop eyou don't mind, I have sent you a PM.

Keep talking through this forum - it truly lifts you when you are having a tough day.

Keep smiling.

Diane
x

 

[nickyd]

Hi, Nixi
I didn't no whether to post as my Mum passed away recently, aged 68, I'm 37. But I wanted to let you know that I'm thinking of you.My Mum was diagnosed with vascular dementia at 58You never imagine at our age having a parent with this disease, I am so angry still with it all. It is so cruel to watch your beloved fade away,Keep posting,
Love Nicky xxx

 

[jackie1]

Hello and welcome Nixi,
I hope you find this site as useful as I have. Like the earlier posts, I'm no longer in my 30's (45) and it's my husband that has this horrible disease (we have 2 young boys). But I do think that the anger, sadness and fear is similar for all of us. There are, of course, different needs and emotions but the anger I think is pretty consistant.

I really would suggest that you try talking to your friends, they may surprise you. I know that mine have kept me sane.

Take care of you
Jackie

 

[NixiD]

Thank you for replying to me I spent the hour after reading all of the replies just crying and releasing a lot of pent up sadness. I am truly grateful for everyone who sent me messages. I'm so glad I found you all and hope to carry on keeping in touch. Nixi

 

[tmitch]

Keep strong!

Hi NixiD

I am 34 and my mum has not had an exact diagnosis yet, we saw the psychatrist today who works with the elder patients and she said it wasnt Picks and it wasnt Alzhemiers, but somewhere in between, we now have to wait for 19th Dec before we see the neurologist, its all a waiting game but we feel helpless, anger and guilt.It is so hard on a day to day basis and wears you out, knowing that sometimes you feel like nothing you do helps.
I have found this website fantastic,as others know exactly how you feel and you are not on your own, even though we feel like we are sometimes
I just thought I would let you know am here if you want to talk, anytime
Keep strong, your doing a great job.



Take care
Natasha

 

[pam01]

MY kids are 24 and 22 ...too young to be saddled with this bloody nightmare as their dad is only 54. although i am desperate for their help I have to realise that they have their own lives to live. He really adores his kids and they can sooth his rages...unlike me who is the butt of them. I'm grateful that they still live at home...for the moment.

 

[lucia]

Hi,im new to this site i decided to join as my mum was diagnosed with AD a year ago she is only 56 but she had the symptoms for a couple of years before we got told,Its heartbreaking to watch someone you love go through this,she was always the life and soul at family party's,and now she won't go out,only to take the dog for a walk,i try my best to get her out and about but she won't.Also she has been very argumentative with me saying i have took money and took her jewellery from her which is not true,she is also saying to me she hates me and other stuff which im finding hard to deal with,i know its not my mum its AD but it just so hard to deal with,can anyone out there give me some advice,thanksxx

 

[Grannie G]

Hello Lucia, welcome to TP.

I`m sorry you are having such a difficult time with your mother. She is very young to have AD.

Apart from the devastation itself, the mood swings and unreasonable behaviour are so hard to manage. All I can say is don`t try to reason with your mother, she will be unable to accept a logical discussion.

If she becomes very aggressive or accuses you of things you haven`t done, just tell her you are not staying with her to be accused and insulted, but you will be there whan she calms down, and either go out or go into another room, and leave her by herself.

Try not to shout at her, be as calm as you can, but firm. It has worked for me and many others. It doesn`t stop it happening again, but it solves the problem for a short time.

Keep posting on TP. Everyone here will understand what you are going through as we are all going through it too.

Take care

Love xx

 

[Kate P]

Hi Lucia and welcome to TP. I hope you will find it as helpful and comforting as I have - the people on here are great!

It is so very difficult - do you live with your mum? Are you the main carer? I only ask because it seems to me that the main carer is the one who takes the brunt of the aggression and accusations - in my case, my dad. Mum can be very aggressive and violent towards him and although she can't hide her bad mood from me she doesn't act on it.

It is very difficult and to be honest of your mum was only diagnosed a year ago you're still in early stages of learning how to deal with this and about how you feel about it. It's taken me a good few years to reach a point of acceptance and counselling throughout that which I whole heartedly recommend as it did me a world of good, as has coming on here to TP.

Someone once told me that dementia was a "long bereavement" and for me, that's certainly been true, as I've watched the mum I adored turn into a person I hardly know and (big breath for bravery here!) a person I don't really like. It's taken me time to learn not to blame her but just to accept this new person.

I don't know if that makes sense - either way, I hope you continue to find TP helpful (other people will be even if my ramblings are not!).

 

[sharon1]

Hi there, I have just registered on this site today, I know how you are feeling as I am in a similar position to you, I am in my early forties, I have two daughters aged 16 and 6, two years ago My Mum and Dad moved in with us as my Dad was diagnosed with Alzheimers and Vascular Dementia,I started the grieving process about 18 months ago, as my Dad is no longer the man he was, it has been so very traumatic and painful to watch his decline, the long goodbye this illness has been called, how right that is. I love my Dad so much, I am lucky as my Dad is very lovely within the world he is now in, he needs constant supervision and I need constant patience, its having to repeat the answers to his constant questions as if its the very first time you have answered them, it is draining and exhausting, I am coping with the personal care side very well and get on with the job in hand, maintaing his diginty, we have lovely times each evening, we have a baileys together each night, just the two of us on the sofa, in quiet, memories to cherish, My life is hard going, with two children and I also work at the weekends too, sometimes I go to bed so exhausted and i just sob and sob, very hard times and bad days, it so good to know there is a support talk forum like this, hope all is well with you, kind regards sharon

 

[lucia]

Hi,and thanks to you all for posting the messages on there for me,that really brought tears to my eyes i feel better already knowing that i can talk to people on here who are going through the same situation as me,I have got my friends but they don't really know how to take it so im so glad i found this site.I live with my mum and dad,i work of day and so does my dad so my mum is home alone until we come back from work,my mum is only in the early stages of AD so she can still do stuff for herself,we are going back to the hospital in a weeks time to discuss how my mum and us are getting on,thanks again for your advice,i will be on TP all the time now,luciaxx