Only 2.5 years after diagnosis and such a rapid deterioration

[El31]

It feels only like yesterday I was posting about getting a diagnosis for my mum. That was probably around 3 years ago, she was finally diagnosed in Jan 2020 when I was heavily pregnant with my son. I had my son in the February and then lockdown hit, I still saw mum and dad most days because at this point I was her carer , but when she broke her leg following a fall a year later we decided she needed 24 hour care as dad was just not coping and I living 18 miles away with 2 children and working part time just couldn’t give the support they needed- I did consider giving up work but I realised I needed to Give myself self care, and my mum wouldn’t have wanted me to give up my career, something she was so proud of. My has been having live in care for the past year, the lady she has is just amazing and she takes such good care of mym, we are so lucky that mum had the finances to fund this at a cost of 1000 a week (still cheaper than a care home)
Mum in 2.5 years has gone from walking and talking to now needing a hoist as although she can walk with a shuffle she cannot stand without being lifted, she is doubly incontinent, cannot talk, does not respond to Mum , I think recognises me but I’m not sure. I was told because she has had symptoms since 65 and diagnosed at 70 this is early onset and can progress quicker, well it has certainly done that. I feel myself going through so many waves of emotion and I think I’m actually going through the process of grief. I didn’t think at 35 I would be losing my mum when all she wanted was to grow old with me and her grandkids by her side. I feel so robbed. Hugs to everyone else going through this horrible journey xx

 

[Grannie G]

Hello @El31

I`m so sorry to read your post. It`s true some people with dementia experience a much more rapid progression than others yet there are always exceptions to prove it wrong.

Sadly we cannot choose.

I was 29 when my father died at 53 and it`s so long ago I can`t remember the age he was diagnosed. He had Hydrocephalus which was fluid on the brain.

We do grieve while caring because the illness is so distressing.

I hope you are helped by knowing you are doing everything possible to make sure your mum has the best care. There is nothing more you can do.

 

[El31]

Hello, oh goodness , I am so so sorry for your loss, to lose your dad at the age he was is just so cruel. I really hope you are doing ok ❤️❤️ Sending hugs xx
Xx

 

[Roman223]

It feels only like yesterday I was posting about getting a diagnosis for my mum. That was probably around 3 years ago, she was finally diagnosed in Jan 2020 when I was heavily pregnant with my son. I had my son in the February and then lockdown hit, I still saw mum and dad most days because at this point I was her carer , but when she broke her leg following a fall a year later we decided she needed 24 hour care as dad was just not coping and I living 18 miles away with 2 children and working part time just couldn’t give the support they needed- I did consider giving up work but I realised I needed to Give myself self care, and my mum wouldn’t have wanted me to give up my career, something she was so proud of. My has been having live in care for the past year, the lady she has is just amazing and she takes such good care of mym, we are so lucky that mum had the finances to fund this at a cost of 1000 a week (still cheaper than a care home)
Mum in 2.5 years has gone from walking and talking to now needing a hoist as although she can walk with a shuffle she cannot stand without being lifted, she is doubly incontinent, cannot talk, does not respond to Mum , I think recognises me but I’m not sure. I was told because she has had symptoms since 65 and diagnosed at 70 this is early onset and can progress quicker, well it has certainly done that. I feel myself going through so many waves of emotion and I think I’m actually going through the process of grief. I didn’t think at 35 I would be losing my mum when all she wanted was to grow old with me and her grandkids by her side. I feel so robbed. Hugs to everyone else going through this horrible journey xx

Hello E131: I am sorry to read about your mum and your circumstances. Dementia is a horrid disease and you just don't know what it's like until a family member or someone close is diagnosed. It takes away the person you love bit by bit. My mum was diagnosed in Dec 20. She has had numerous complex illnesses over the last 2 years and since she broke her hip a few months ago has rapidly deteriorated. She has gone from being able to walk with a frame, go to the toilet unassisted, eat herself to being imobile, incontinent, losing lots of weight, having to be spoon fed, and totally unrecognisable. Please be reassured that myself and others do understand what you are going through. It is heartbreaking to watch. Sending you love. x

 

[Firecatcher]

My Mum has deteriorated rapidly since she was diagnosed in a January 2020. She received no help from services following diagnosis and was simply given a book about Alzheimer’s to read. A short trial on oral Aricept was stopped after she developed very vague side effects which were probably anxiety related. She could have been offered patches as an alternative to tablets but wasn’t - the NHS wanting to safe money I imagine. I don’t think lockdown helped matters either.

 

[Sjwbertie]

It’s the most dreadful illness and somehow we have to find the strength to cope with the unbearable sadness. Take care of yourself and be kind to yourself.

 

[Cat27]

It’s the most dreadful illness and somehow we have to find the strength to cope with the unbearable sadness. Take care of yourself and be kind to yourself.

Welcome to TP @Sjwbertie

 

[El31]

My Mum has deteriorated rapidly since she was diagnosed in a January 2020. She received no help from services following diagnosis and was simply given a book about Alzheimer’s to read. A short trial on oral Aricept was stopped after she developed very vague side effects which were probably anxiety related. She could have been offered patches as an alternative to tablets but wasn’t - the NHS wanting to safe money I imagine. I don’t think lockdown helped matters either.

I’m so sorry to hear about your mum. I can completely relate to the not getting any support, they diagnose and leave you to get on with it. Def go back to mental health team if you feel she needs medication , my mum is on memantine and also an anti anxiety tablet due to awful hallucinations she was having. Sending hugs to you on this awful journey xx

 

[El31]

Hello E131: I am sorry to read about your mum and your circumstances. Dementia is a horrid disease and you just don't know what it's like until a family member or someone close is diagnosed. It takes away the person you love bit by bit. My mum was diagnosed in Dec 20. She has had numerous complex illnesses over the last 2 years and since she broke her hip a few months ago has rapidly deteriorated. She has gone from being able to walk with a frame, go to the toilet unassisted, eat herself to being imobile, incontinent, losing lots of weight, having to be spoon fed, and totally unrecognisable. Please be reassured that myself and others do understand what you are going through. It is heartbreaking to watch. Sending you love. x

Thank you ❤️❤️❤️I’m so sorry about your Mum, she sounds a lot like my mum. Sending hugs to you on this difficult journey xxx

 

[Lisa777]

Hello E131: I am sorry to read about your mum and your circumstances. Dementia is a horrid disease and you just don't know what it's like until a family member or someone close is diagnosed. It takes away the person you love bit by bit. My mum was diagnosed in Dec 20. She has had numerous complex illnesses over the last 2 years and since she broke her hip a few months ago has rapidly deteriorated. She has gone from being able to walk with a frame, go to the toilet unassisted, eat herself to being imobile, incontinent, losing lots of weight, having to be spoon fed, and totally unrecognisable. Please be reassured that myself and others do understand what you are going through. It is heartbreaking to watch. Sending you love. x

This is exactly what happened to my dad, he’s 94 but was managing to shuffle around with a frame. In March he fell and broke his hip. He’s never walked since. I visited him today and he didn’t have covers over him. He was so so thin, he wears a pad all the time, sleeps all day and night and doesn’t know who I am. He doesn’t look like he knows what I’m talking to him about! His throat is affected and he eats half the amount of mashed up food he used to. It is very heartbreaking but could carry on for ages ?

 

[Roman223]

Thank you ❤️❤️❤️I’m so sorry about your Mum, she sounds a lot like my mum. Sending hugs to you on this difficult journey xxx

Thank you E131: I lost my beloved mum nearly 2 weeks ago .... I will never regret the time I had with her! Treasure the moments even though it is difficult to see your mum like this. Take care of yourself. x