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

DianeG

Registered User
Oct 12, 2007
50
Glasgow
Hi,
My mum is at home too but this week we have had a major development. She was interviewed (with me and dad) and got accepted for sheltered home just 1.5miles from my house. This has been hard to accept - young parents going into 'old' folks' accommodation but I know deep down that it is the safest option for mum. Dad still works and it is going to be such a comfort to know that someone will be there to ensure she is okay when dad is out early in the morning. We viewed the house today and mum is so excited - it's as if she has a new life -and in a way she has - new neighbours, new surroundings and a new social life. I am both gutted (that it has to happen) but chuffed to bits she will be nearer me and have extra support if she needs it.

Not sure how relevant my note is but I just wanted to share my latest news with you. Mum will be in her new home in time for her birthday (23 dec) and for Christmas and I can't wait...

I have cried for days over it all -joy and sadness.

You all take care.

Diane xxb
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,391
Kent
Dear Diane,

Try not to be affected by the accommodation being for `old` people. It`s ideal for your mother and that`s all that matters.

It will give you and your father more peace of mind than you have had for a long time, and that is the most important thing of all.

I wish them well on moving day.

Love xx
 

DianeG

Registered User
Oct 12, 2007
50
Glasgow
Sylvia

Thank you for your kind note.

I spent the day with my parents clearing out the old in their current house in preparation for the big move. Mum was really disorientated with everything and struggled with the simplest of little tasks. I think we are in for a toughie few weeks as she adapts to moving out of one home and setting up the new one. I think we can all grin and bear it though as the long term gainf or everyone should be good.

I know I shouldn't think of sheltered housing as 'old folks' houses and I know deep down it tis absolutely right for her at this stage. I guess we will all face these feelings as the illness develops.

Diane x
 

stikwik

Registered User
Oct 31, 2007
109
Nottingham
me too but early on

hi all

i've just spent the last hour or so reading the 5 pages so far.

i'm 33 and its my husband not parent, although he's 54, and diagnosed vascular dementia recently (was diagnosed FTD 18 months ago).

he's still very capable, and i think i've convinced myself he'll stay like this for a long time, but secretly know it's not likely. but we're living in the moment and doing what we can to enjoy life. he understands what he's got, although we don't talk about it as much as we used to so hopefully his understanding is waning.

i can see deterioration in some ways, but since aricept 10 weeks ago, improvements in others. i'm pleased i'm a practical sort of person as i've got all the paperwork dealt with (DLA, IB, Power of Attorney before it changed), and in my mind i don't spend time with regrets or wishes (so far... maybe when he's worse...)

i find that it's less scary thinking of him as unique, and dealing with it is easier because i love him, whereas stories of other people i don't know can horrify me at the thought. but i think the love makes the difference and maybe the changes will still relate to his personality like they have so far (eg was never good at socialising, so it's not being missed too much now it's increased). who knows. i'm sure many of you may be thinking i'm naive in that hope.

but we are coping, my daughter is just 14 and is as practical as her mum so that helps (except for the 80% of teenager moments in the house too!)

it's brought us closer in a way...
 

ginny33

Registered User
Dec 30, 2005
3
middlesbrough
mum with AD

Hi everyone,

My mam was diagnosed with AD when she was 52. she is now 56. I am 35 and it is heartbreaking I know, to have somebody you love with this disease.
I was shocked and upset when we first got the diagnosis. I am close to my parents and the fact that she is so young really hurts. I and my brother and sister are lucky that we have a wonderful dad, who looks after my mam at home. Considering she has now had the disease for four years, she is doing marvelously. When she first got diagnosed, I thought that she would not be here now. you automatically think the worst, but each case is different. She can still dress herself, go to the local shop etc. I believe that because she has a strong support network around her, it has helped a lot. For example, we always try and make mam laugh, and she is devoted to her grandchildren, my sister only lives 5 doors away from mam and dad, so she sees them all of the time. she loves the kids and I believe that this makes her happy and improves her quality of life. She goes to the shops every day and loves bargain hunting in the charity shops for toys etc for the kids. it doesnt have to be anything major you need to do, just try and carry on doing all the things that the person has enjoyed. On boxing day, for example we have always gone to mam and dads and had some drinks, party food and singing on the karaoke. ( i am a terrible singer, but my mam always laughs and she always remembers that boxing day = party! and my bad singing! on a more serious note, I have just completed a Dementia awareness course which can be done on at home through my local college. Whilst I realise this is not for everybody, learning about the disease is distressing, but it has helped enormously in understanding the disease, the feelings of the person who is affected by it and also the family. It has helped me understand how my mam is feeling, and how I can make it easier for her and how to talk to her when she is in the later stages of the disease. Just take each day as it comes and some will be worse that others, but remember that love and understanding from the family goes a long way in improving their quality of life.

Hope this helps.

xx
 

nickyd

Registered User
Oct 20, 2007
146
49
warwickshire
Hi Ginny 33,
I understand the feeling of being broken hearted, my Mum passed away in september aged 68, after suffering with vascular dementia for 10 years, I'm 37.
Thankyou for your post, I found it amazing, it moved me...
Love,
 

BeverleyY

Registered User
Jan 29, 2008
716
Ashford, Kent
I'm 38, and dad had the first signs about 5 years ago.

I don't exactly know what type of dementia he has. He wouldn't go for the MRI scan after his assessment.

They were reluctant to label him. I think mum didn't want him to have the scan (probably in denial of it all).

My parents came to live with me just under 5 years ago. Sadly, my mum passed away 2 weeks ago leaving me to carrying on caring for dad.

We've two kids (7 and 13), and they don't really know a life without a forgetful Grampi around.

I keep thinking.. why why why. I went to the cemetery today and cried and asked mum why she had to go and leave me to cope without her.

At 38, I still feel I need my mum for strength.

Beverley
 

Cloudwatcher

Registered User
Nov 2, 2007
33
West Sussex
My Mum was diagnosed when I was 37, she was 66. I have just turned 40.

I was staying with my parents on my 40th birthday. Dad, her fulltime carer, had just had heart surgery so I spent 6 weeks up in Glasgow looking after them both. I live in West Sussex. Dad has made a fantastic recovery.

The milestone in the disease I dreaded most happened when I was there, Mum not knowing who I was! It was quite bitter sweet and I try and see the funny side although it was truly heart breaking.

2 weeks after my birthday I walked into the kitchen where mum was pottering and she looked at me and said "Now you have to tell me your name again as I keep forgetting it so you will have to keep reminding me" So with a smile on my face and a pain in my heart I laughed and said "It's Lee, my name is Lee" She gasped and asked me if I knew the other Lee??? Did I know Lyn? (my sis). I told her I was Lee, her daughter. She looked at me in disbelieve and said "You can't be Lee, you're too old to be Lee!" Thanks Mum, just what you need to hear after your 40th!!!!

During my stay she occasionally wouldn't know who I was of what I was doing there, sometimes she thought I was someone sent into look after them both. I think it was because it was not normal for me to be there for so long and do so much. On the occasions I have been up since for the normal 2 or 3 days she has been fine and known who I am.

BeverleyY, My heart goes out to you at this difficult time. You are doing a wonderful job and I admire your strength.

Love Lee x
 

Catherineskii

Registered User
Jan 31, 2008
2
My Dad

My Dad was officially diagnosed with AD about 2 months ago, although we think he's been displaying symptoms for a couple of years now. He is 62, and I'm 30.

Luckily for Dad, my Mum is doing an amazing job of taking care of him. She is his primary and only carer at present (until he gets 'in the system' and we can start accessing additional care). I'll be honest - I'm as concerned for her as I am for him. Neither she nor my Dad are particularly sociable, and they don't have a lot of friends or family around to rely on. I'm concerned that as things progress, Mum will become increasingly overwhelmed and isolated. Therefore I have been nagging her a lot lately to get 'out there' and meet other people in their situation. Luckily, there is good provision and support in their city: lots of social drop-ins for both sufferers and carers, as well as other support specific to younger people with AD (a rarity, I'm told). She is beginning to access some of these services now, which is a huge relief. I also suggested that she introduce herself and start posting on TP!

To complicate matters somewhat, I live overseas and am unable to be around to help anywhere NEAR as much as I'd like. My Brother lives close to my parents, and I know he is a good source of support, but he works long hours and has a family of his own, complete with hyperactive 3 year old, so...well you know how it is!

So if I can talk about ME for a second :D... along with all the feelings of sadness and weird premature grief, I'm also feeling a huge amount of guilt - for not being there and helping my Mum & Dad as much as I (and they) would like. At the same time, part of me is glad that I don't have to be around to witness the painful decline in my Father's health. Which also makes me feel incredibly guilty! :( It's.... complicated, and very upsetting.

Dad's just been prescribed Aricept, which Mum is weaning him onto slowly - 5mg to start, then more as he adjusts to the drug.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,391
Kent
Hello Catherine.

I`m so sorry about your father`s diagnosis. He is very young.

You have so many mixed emotions, so you really have found the right place.

I can only welcome you to Talking Point [TP] and hope that by reading the posts you will learn you are not on your own. There are many long distance carers, many young carers, many concerned for the primary carer and many riddled with guilt.

But this is how it is. This is life, and out of our control. We can only do our best in the circumstances we find ourselves.

The best help you can give your mother, in my opinion, is to really encourage her to start posting on TP.

It is so isolating, being a full time carer and TP is a life line for all of us. She will find support and friendship here from people who know and understand her situation.

I hope you will find support here too.

Take care xx
__________________
 

rio_stokes

Registered User
Mar 21, 2008
40
i need help

Hi my name is rio i am 22 and my mum was diagnosed with alzheimers last summer. I am finding it extremely scary and worrying and no one my age has had to deal with this so i am also lacking support. i need some advice. as my mum's only daughter i have got to handle all the women's side of things. She is finding it extremely difficult to dress herself some mornings mainly because she can't figure out how to put on her bra. I live 80 miles away so i can't help her get dressed plus i would like her to maintain as much independence and dignity as possible. Does anyone have any suggestions?
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Firstly, welcome Rio.

Hopefully very soon one or another of our members who are in similar shoes to you will come along and help you.

Just trying to think practically here (and I have no experience of your problem) but you say:
She is finding it extremely difficult to dress herself some mornings mainly because she can't figure out how to put on her bra.
Would she manage a sports bra that pulls on over the head, ie no fastenings? Just an idea.
 

rio_stokes

Registered User
Mar 21, 2008
40
thankyou for your reply. she is coming to stay with me for the weekend so i'm going to take her shopping so i will certainly look at sports bras and see how they work out. i think i will porbably have to just buy 1 for now and see how she gets on then buy more if they work for her. thankyou again.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,391
Kent
Hello rio.

It`s a worry introducing anything new in case it causes even more confusion.

A lot depends on how much support your mother needs. My mother lose quite a lot of weight and she was comfortable just wearing a camisole like vest.

Good luck with the shopping.
 

rio_stokes

Registered User
Mar 21, 2008
40
she's not far enough along to get confused its more that she forgets how to do something. she needs a lot of support and has a lot of scarring in that area so it can't be something restrictive which leaves me in quite a dilema.
 

cgf

Registered User
Sep 12, 2007
17
Time fly's!

I can't believe my last posting was on the 29.09.07, how time passes so quickly. It's been since last September, when we received Mum's diagnosis, that we have been coping with AD.

Mum now has a care package in place at home as she can no longer cope with most day to day things. I now find myself having to do things for my Mum that I never thought I would have to do and that can be difficult at times and very saddening. Mum has also aged alot and when I look back at photographs of her a year ago I can't believe the change. Mum always was particular about her appearence and was youthful for her age, so that can be distressing seeing her look so aged. Sometimes when I turn up to see her the carers have dressed her in something that doesn't entirely match or does not go together, as they are so rushed with the large client base that they have, and it's a shame as Mum always liked to look her best and did.

Mum loses the thread of a converation so much more frequently now and gets her words muddled and uses the wrong words in sentences. She has deteriorated so much since the diagnosis last year and I worry where we will be in another year's time.

We are currently trecking through the minefield that is 'care homes'. There is just not the care for people with early onset dementia and some of the care homes have readily admitted to me that whilst they could take Mum they probably couldn't provide the stimulation needed for someone of her age. The care homes that do have activity coordinators and do get residents to participate in activities do then not offer young enough people for Mum to associate with or converse with. It's such a nightmare as she will need more care soon that we just can't provide at home.

I am now dreading the Summer months and lighter evenings as I know it will disrupt Mum's nightime routine. Mum used to love the lighter evenings when she would be able to be out in her gardden for longer periods but now that's just not possible as when she leaves the front door to go into the garden she get's lost and can't find her way back in again. I know she is frustrated at watching the world go by her window on the day's when we can't be there to take her out etc..

Everything now seems to require so much thought, energy, consideration and worry which can have such an impact on everyday life whilst still coming to terms with the diagnosis and the future can be tough enough.

I know at the beginning of this thread I said how time passes by so quickly but I have just worked out that it's only 6 months since we received the diagnosis and Mum seems to have declined, and the AD taken it's grip, so rapidly that it hardly seems possible. It highlights just how quickly life can alter in the blink of an eye.
 

silvergoblin

Registered User
Mar 31, 2008
13
Naples, Florida....USA
Hi....I just found this site and this is my first post here....I am 34 years old and my Father has Alzheimer's....it has just about torn me up inside....nobody really understands unless they are going/have gone through it....I need to read the entire thread....I was just so happy to finally find others in my age group going through similar situations....