Mum diagnosed in her 50's, struggling at 27

[CL90]

Hi there,

I've read a few threads about parents who have been diagnosed at a young age. My Mum was officially diagnosed 18months ago, aged 55 however it's been going on for many years.
Unfortunately, we are reaching stages of delusions and forgetting faces. My mum doesn't remember me anymore, and refers to me as my dad's daughter and talks about "her daughter". It's
been really hard to digest over the last 6 months, but I have to remember its the disease talking not my mum.

Im 27 and reaching an age of weddings & children, I feel like i've been cheated out of my mum that i cant share these moments with her, & have even had discussions with my partner to maybe start thinking about wedding & children ourselves so I can share as much as I can with my mum.

I really am struggling with dealing with this. I have an older brother and my dad is her full time carer. My dad is brilliant but is starting to struggle, but he keeps saying it's not our problem. I fortunately live 20 mins away so help him out when I can but its starting to reach
a point that we need extra help but my dad is scared they will just put her in a home.

I just feel heartbroken for what is happening to my mum, but most of all for my dad. He is a closed, proud man & I can see him struggling to deal with losing his wife of 35 years and it's so hard to watch.

Sorry this post is all over the place. I just need to speak to people of a similar age who are going through the same thing.

 

[Shedrech]

hello CL90
a warm welcome to TP - glad you've been able to ramble away here, that's exactly what TP is for, to share experiences and chat with others involved with dementia
such a shame for all of you that your mum has the condition and so young - she's fortunate to have your dad and you and your brother to support her
let your dad know that the last thing Social Services want is to have your mum move into a care home; they will do everything to not have to make that move - the people to contact are your Local Authority Adult Services; ask for an assessment of your mum's care needs and do let them know that your dad has been caring for her for a number of years and is now finding it tough - your mum has a right to this assessment, so don't let them begin to discuss her finances until the assessment is done - then they only need to know about your mum's savings NOT your father's; and rest assured that the house is disregarded for the financial assessment and will be even should your mum eventually move into a care home, as long as your dad, her spouse, lives there
your dad also has a right to a carer's assessment - from the 2 assessments, there may be home care visits available, time at a day care centre, a sitter, respite and visits to their home from an occupational therapist to see if any aids may help them both
suggest to your dad that as they have a right to this support, having paid into the system, he should grab as much support as he can, as soon as he can, that way your mum is helped and equally importantly your dad will hopefully be able to manage your mum's needs at home for longer because he isn't trying to cope alone - so getting help will benefit them both
maybe also go have a chat with the Citizen's Advice Bureau to check out what benefits your mum is entitled to (as I believe she's too young to apply for Attendance Allowance) - there's also carer's allowance, though your dad isn't eligible if he earns more than £115 a week
your mum may not be quite placing you as her daughter because she's looking for and thinking of you as the child you were years ago - it's actually good that she believes you are her husband's daughter, as she still knows somewhere that you have a connection - if she ever asks where the child you is and is concerned, maybe tell her a little fib to ease her mind eg that she is at school, or away on a school trip or ... something that would have been reasonable back then - maybe even chat about some memory you share of her lovely daughter so you both get to talk about the times you had together - bitter/sweet for you, I appreciate
and just to mention - has your dad put in place Powers of Attorney for finance & property and for health & welfare; these will help him in the future to manage his wife's affairs, and you if you and your brother become joint & several attorneys with him, or you are named as replacement Attorneys
your mum and dad must be very proud of you - what a good job they did to raise such a thoughtful and caring daughter
best wishes

 

[Ihtl]

Hi, I'm the same age as you and my dad was a similar age to your mum when he was diagnosed in 2014, though had been attending the memory clinic/having investigations into memory loss as early as 2011.

I won't lie, it's been very hard dealing with all of this. My dad's dementia progressed very quickly and he required full time care approximately 18 months after his diagnosis (though it was another year before he moved into care).

It was especially hard for my mum to cope with his changes and she began to dread the prospect of retirement. She had health problems of her own and passed away unexpectedly 7 months after my dad's diagnosis.

The feeling of loss (of things yet to come) is something I'm still struggling to deal with.

Good luck.

 

[CL90]

I'm so sorry to hear about your loss. My dad cut down his hours but hasn't retired fully as I think he is scared to incase anything happens to my mum, he will need to keep himself busy.

Mum has good and bad days. Sometimes I think she is going down hill quickly but other days she seems fine. It's a horrible disease to watch someone you love just slowly drift away. I feel I'm mourning for her although she is still here. It's very tricky!

X

 

[Hayleymarie]

Sorry to hear you are going through this, it really is so hard and you feel like you're in limbo a lot of the time. Your Dad is lucky to have such a supportive daughter.

I have a young daughter and she has been a great help/distraction/keeping me busy whilst my Mum has been going through the early stages.

 

[dons]

Hi CL90,

im 23 and look after my dad who is 56...so similar age, nearly.

its been really hard for me to cope, but somehow im managing....my dad seems to be at a similar stage as your mum...hes forgetting names, makes absolute no sense most the time...is finding it hard to wash, change etc etc.

theres always the bad days and the good days. watching a parent go through this absolutely takes it out of you. I feel that the stronger you are the easier it if for the both of you. just so you know i feel like i am going through the exact same thing, its an absolute rubbish situation. but stay strong....all will be ok!

 

[JessL87]

Hi, I've only just joined and I'm in a similar position to you. My mum has early onset Alzheimer's, she was diagnosed about 2 months ago. She is 53 and I'm 29. Mum lives with my dad, he's 67 and retired last year a few months before mum started becoming "unwell" mum isn't forgetting people yet but forgets most conversations we have and only remembers certain bits and pieces. I'm here if you want a chat. X

 

[Loop]

Hi there,

I've read a few threads about parents who have been diagnosed at a young age. My Mum was officially diagnosed 18months ago, aged 55 however it's been going on for many years.
Unfortunately, we are reaching stages of delusions and forgetting faces. My mum doesn't remember me anymore, and refers to me as my dad's daughter and talks about "her daughter". It's
been really hard to digest over the last 6 months, but I have to remember its the disease talking not my mum.

Im 27 and reaching an age of weddings & children, I feel like i've been cheated out of my mum that i cant share these moments with her, & have even had discussions with my partner to maybe start thinking about wedding & children ourselves so I can share as much as I can with my mum.

I really am struggling with dealing with this. I have an older brother and my dad is her full time carer. My dad is brilliant but is starting to struggle, but he keeps saying it's not our problem. I fortunately live 20 mins away so help him out when I can but its starting to reach
a point that we need extra help but my dad is scared they will just put her in a home.

I just feel heartbroken for what is happening to my mum, but most of all for my dad. He is a closed, proud man & I can see him struggling to deal with losing his wife of 35 years and it's so hard to watch.

Sorry this post is all over the place. I just need to speak to people of a similar age who are going through the same thing.

I'm in a similar position. Mum was diagnosed with (suspected) vascular dementia last year, though we think it's probably been going on for a lot longer and has suddenly escalated during the past 2 years.

She has just turned 60. I'm 28 and it feels like a rug has been pulled out from under the feet of the whole family. Dad has retired early to become her full time carer.

Happy to talk - I don't feel that I can talk to colleagues or friends about it so much, even though I am sure it would be helpful to share my feelings. There are a lot of things running through my mind - primarily for my dad, who I hate to see struggling through this. But also for mum - we didn't get on when I was growing up and I now regret that we never made amends earlier.

Feel free to PM, or just discuss your feelings in this thread. Talking Point has been my main source of support since we got a diagnosis.

 

[Amber_31]

I'm a bit older, at 32 and my mum is 67, but my feelings are the same. I read TP every night but don't always write as I just can't find any words, I'm exhausted. It is just really awful to lose your mother, as you know her, especially so when you have been very close to her as a daughter. I miss my old mum terribly but still painfully love the new mum. When I was a child I always said I would live with her when I grew up.... never truer was the saying 'be careful of what you wish for'! I have a lovely hubby who supports me and a beautiful baby boy, but this intergenerational living with dementia in the mix with me as queen and skivvy is very, very, very difficult.