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Mum diagnosed today at 54

mmartin88

New member
Sep 23, 2019
2
I haven’t been able to stop crying yet. I’m so upset and so angry about what has been taken away from not only me but my children. They are 1 and 2, and I know they won’t have that relationship with nanny. I can’t call on my mum when the baby won’t stop crying or to babysit. I don’t know how I will deal with this in the years ahead, I feel so lost.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,087
Nottinghamshire
Welcome to DTP @mmartin88 although I'm sorry that you have had to find your way here at such a young age.

I hope you will find the forum to be a supportive place where you can share your feelings and find both emotional and practical advice.

It is especially sad that your mum has been diagnosed at such a young age but she may still have many good years and , although your relationships will not perhaps be what you expected hopefully you can still find some joyful times together.
 

Pete1

Registered User
Jul 16, 2019
580
Hi @mmartin88, you reaction is totally understandable, it is so difficult to process and get to grips with for all the family - including your poor Mum I would expect. It can be a massive shock to hear it even if it is expected, and the fear of what's next?. I can concur with @Bunpoots though your Mum may have many good years ahead. The forum is here for you and can hopefully help you and the family. All the best to you.
 

Sodon321

New member
Sep 24, 2019
3
I haven’t been able to stop crying yet. I’m so upset and so angry about what has been taken away from not only me but my children. They are 1 and 2, and I know they won’t have that relationship with nanny. I can’t call on my mum when the baby won’t stop crying or to babysit. I don’t know how I will deal with this in the years ahead, I feel so lost.
I know exactly how you are feeling as my mother was diagnosed at 53, she is now 57. It has not been easy seeing the change in her but i have tried my upmost best to make memories and spend as much time as possible with her. My mother loves music and dancing so i often take her out alot over the summer to festivals or where ever there is music.

It is all about making memories,I try my hardest not to think too far ahead and just take each day as it comes, but i know it is hard to not let your mind wonder.

Some days are easier then others, but i have so much fulfilment when i take her out and see the joy on her face. I try and take as many pictures and videos as i can so i know i will have them forever to hold on too.

Maybe try and plan things in now, make memories and get your kids involved as much as you can, it will be things you can look back on and show them pictures of when they are older.

My thoughts are with you and your family, i really do understand how hard it is x
 

Hoots

New member
Apr 20, 2019
2
My mum was diagnosed this year at 55. I’ve got a 5 year old, 2 year old and a baby on the way. I totally get it. I used to be so reliant on my Mum and now I can’t be as she has already deteriorated:( we expected her memory loss over the past couple years (it didn’t seem extreme enough for this!!!) to be grief/depression after loosing my Dad. My mum used to babysit my kids all the time. Shes still so good with them but everything’s changed now and it was so so tough. I took 6 months off work just to try and get my head around it all. Xxx
 

Abbey82

Registered User
Jun 12, 2018
80
Just offering out another hand to say you're not on your own. My Dad was diagnosed last year at 59 and my parents moved in with us so we could share the care. Unfortunately his Alz/FTD has progressed incredibly rapidly and we are now forced to look for a residential nursing home. However we have had good times in these last 20 months and we never give up hope or trying to find small positives in everything we do
 

KeddyL

Registered User
Jun 8, 2014
24
Argh my heart breaks for you all, all over again.

My mum was 46 when she was diagnosed with dementia. She died a year ago this week aged 57. 5 weeks before I gave birth to my daughter. I have had days when my daughter has gone bed and I've sobbed. I've wanted my mum to see her, to hold her, to help me, to support me, to watch me and to teach me. I'm 27 now and crave her motherly figure so bad. I strive each day to be as strong and wonderful as she was. I have been through the emotional torture and now still mourning. Please message me if you would like somebody to talk to, rant to or to just listen who understands.

All my love, Laura x
 

Cazzita

Registered User
May 12, 2018
538
Absolutely heartbreaking to read these posts. So sorry to hear that your PWD have been disgnosed so young. So unfair :( x
 

Poface

New member
Dec 20, 2019
2
It all just feels so wretched. I am 59 and was diagnosed the week before Christmas. I am still numb. I haven’t told any of my family yet or talked to anyone about it.
I don’t know how I’m going to tell my two grown up children. I feel guilty that I’m leaving them. That I’ll miss my grandchild growing up. I’m their mother, I’m supposed to be the strong one, aren’t I?
I am so sorry for you and your situations too.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,794
Yorkshire
hello @Poface
a warm welcome to DTP
I'm glad you have joined us here so now you have folk to chat with, and you can say whatever you want, whenever you want
I'm sure it's tough on you wondering how your family will be ... my parents were very much the kind who said 'we didn't want to worry you', yet as much as they looked out for me, I wanted to look out for them ... so I hope you find a time and place that's comfortable for you to be able to talk with them
 

Poface

New member
Dec 20, 2019
2
hello @Poface
a warm welcome to DTP
I'm glad you have joined us here so now you have folk to chat with, and you can say whatever you want, whenever you want
Thank you. It would help if I knew what type of dementia I have. All I have been told so far by my neurologist is that I have it and I've been referred to a specialist unit for a "formal diagnosis". I have odd visual effects so I am terrified that I may have PCA and will go blind as one of my children is Deaf. How can we use sign language if I can't see them? I'm waiting anxiously for the postman every day to see if my specialist appointment has arrived but I suppose everyone else is too. Not enough specialist consultants to go round in the NHS.
 

mmartin88

New member
Sep 23, 2019
2
Thank you all so much for your replies on this post. I went for 8 weeks of counselling and I suppose it allowed me to be a little more rational about the time left. Mum was put on medication and was so much better, it was almost easy to forget the diagnosis. However, then she collapsed. On arrival at hospital her blood pressure was way too low and she was taken off the medication. It was a horrible Christmas, she couldn’t complete a sentence or walk down stairs. She was put on a lower dose and has been great again, however they changed the medication this weekend and she is really bad again. She’s so annoyed that she can’t even remember where things are in her own house.
It just made be cry all evening again. I hate this disease so much.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,794
Yorkshire
such a rollercoaster for you and your mum @mmartin88
no wonder you are tearful
maybe go back to the medics and suggest the lower dose is more suitable for her
and keep posting if it helps at all
 

CherylB

New member
Feb 22, 2020
7
I haven’t been able to stop crying yet. I’m so upset and so angry about what has been taken away from not only me but my children. They are 1 and 2, and I know they won’t have that relationship with nanny. I can’t call on my mum when the baby won’t stop crying or to babysit. I don’t know how I will deal with this in the years ahead, I feel so lost.
I'm so sorry. 54 is so young. I'm 53 and caring for my mom with Alzheimer's. She's 85 which isn't easier but more understandable that she's aged....Omg, I'm not a doctor of any sort, but I've read so much about this disease and it says there's no cure, however, I find that socializing with family and friends is definitely a way to slow down the disease. Looking back on my mom living alone, I wish I would have taken her in much earlier than we did. It's like when she talks on the phone to her sisters, she sounds normal again.....It's amazing how this disease works. She still knows my sister and I and she was diagnosed ten years ago. Read all you can about what you can do. We did the one drug Aricept which is said to slow down the symptoms....I can't tell if it worked or not. We stopped it recently when her anyerism tore. YOu see, in life, even if we are diagnosed with a disease....that may not be what kills us. Enjoy every minute as you would if she was healthy....but do make decisions now that can help this outcome. Socialize her with friends and family regularly. That helps alot!!!!! Don't cry. Ask her questions about your babies.....make her think as much as possible and feel needed. She's your mom. She deserves that! God Bless you sweetie
 

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