Dad diagnosed with early onset Alzheimer's

[justanotheruser2022]

Hello all!

Really not sure how to begin this, but I feel this is the right forum to explain my situation and how I'm feeling, as well as hopefully get some advice and support from fellow members going through the same experience.

My Dad was officially diagnosed with early onset Alzheimer's in July 2021 at the age of 58. We noticed signs for a number of years before this, dating back to 2017. Memory issues primarily, which have gotten worse over time.

In January of this year, he moved into an assisted living facility. I'm finding it incredibly difficult to watch my Dad fade away, and so quickly. There's a substantial difference in him from his diagnosis to now.

I'm 29 and just feel this is so unfair.. His mum (my Grandma) was diagnosed with Alzheimer's at 70 and sadly passed in 2015 at the age of 75. He always had an inkling he may get it. But, if that was the case, why couldn't it be in another 10 years at a minimum?

It's been very difficult to see him having to give up work, driving, and now living on his own. I try my best to keep my emotions at bay when I'm with him. However, when I go on a night out with friends and have a drink, I'm in floods of tears.

What I would like to know, if anyone has been in a similar experience (and if you don't mind saying)... What is the general prognosis going forward? I don't want to pessimistic, but I want to have somewhat of an idea of how fast this is going to progress. Sadly, I've read that early onset speeds up much quicker the younger you are.

Thank you for reading. Much appreciated.

 

[Izzy]

Welcome to the forum @justanotheruser2022. I’m so sorry to read about your dad’s diagnosis at such a young age.

I think it’s very hard to determine the prognosis. I‘d imagine you’ve read a lot about this but wondered if this factsheet would be of any help -

Young-onset dementia

Find out what young-onset dementia is, including the causes and symptoms, and how it is diagnosed and treated.

www.alzheimers.org.uk

I’m so glad you found this forum and know you will get lots of help and support here.

 

[try again]

Any illness is hard when parents are young. My father was diagnosed with cancer at 39 and died at 52. All through my teens he was in and out of hospital.
I cried a lot and think the experience has really impacted my outlook in life. Seek counseling. Admiral nurses deal specifically with family of Alzheimer's patients. Don't let it define your life.

 

[LynneMcV]

I am sorry that you are facing this @justanotheruser2022

I do understand what you are going through to some extent as my husband was diagnosed with early onset dementia at the age of 58 and I have seen, first hand, how that impacted on both our son and daughter who were living at home with us and had to endure watching and living through every stage of the disease from start to finish.

It's not easy watching this disease strip away the abilities of a loved one, whatever their age - but there are different dynamics playing out when a younger person is involved. My daughter, in particular, struggled with it all and felt quite isolated because friends, though being as supportive as they could, hadn't experienced watching a parent become more and more estranged from them and their parent's abilities disappearing on an almost daily basis. Like you, she would also break down and cry whilst out with friends.

I was also told that dementia progresses more quickly in a younger person. I learnt as much as I could in order to prepare myself for what might come, and in my head I estimated we had between 6 - 8 years from diagnosis. I hoped we would have the 8 years but we were, in fact, just a few weeks into year 6 when my husband lost his battle. This is just how it happened for us, it is not a prediction of how it happens for everyone with young onset dementia - every individual has his or her own circumstances which play into the path of progression.

My main wish for you is that you are able to get as much support as you can - and you have taken the right step by joining Dementia Talking Point. Neither my son nor daughter accepted outside support/counselling during (or after) their father's illness and, unfortunately, they both ended up with mental health issues at different times despite my efforts to help them through things as best I could myself. I am glad to say that my son is on top of things again now but my daughter still struggles with her mental health almost four years on.

Please do keep posting, we are all here to support you with what we have learnt from our own experiences. You are never alone here.

 

[betsyann]

Hello all!

Really not sure how to begin this, but I feel this is the right forum to explain my situation and how I'm feeling, as well as hopefully get some advice and support from fellow members going through the same experience.

My Dad was officially diagnosed with early onset Alzheimer's in July 2021 at the age of 58. We noticed signs for a number of years before this, dating back to 2017. Memory issues primarily, which have gotten worse over time.

In January of this year, he moved into an assisted living facility. I'm finding it incredibly difficult to watch my Dad fade away, and so quickly. There's a substantial difference in him from his diagnosis to now.

I'm 29 and just feel this is so unfair.. His mum (my Grandma) was diagnosed with Alzheimer's at 70 and sadly passed in 2015 at the age of 75. He always had an inkling he may get it. But, if that was the case, why couldn't it be in another 10 years at a minimum?

It's been very difficult to see him having to give up work, driving, and now living on his own. I try my best to keep my emotions at bay when I'm with him. However, when I go on a night out with friends and have a drink, I'm in floods of tears.

What I would like to know, if anyone has been in a similar experience (and if you don't mind saying)... What is the general prognosis going forward? I don't want to pessimistic, but I want to have somewhat of an idea of how fast this is going to progress. Sadly, I've read that early onset speeds up much quicker the younger you are.

Thank you for reading. Much appreciated.

Hi there, I just discovered this forum as tonight as I was feeling quite alone, lost and pretty upset.
My father has early onset and was diagnosed around the same time your dad was and we also noticed the signs for some years before this. He lives in a assisted living facility and has had his driving license removed too.
I am 28 so around your age as well. My dad will be 64 this year and he’s only getting worse.
Your story really resonates with me and I can relate to how you are feeling.
I’m so sorry that you are dealing with this as I know how hard it can be.

 

[Shedrech]

Hello @betsyann
A warm welcome to DTP

I'm sorry to hear of your situation but glad that you have found DTP

I hope reading and now posting have helped you feel less alone ... there are many members here who will recognise your experiences, so do keep posting, sharing does help

 

[Xhanlbxx]

Hello all!

Really not sure how to begin this, but I feel this is the right forum to explain my situation and how I'm feeling, as well as hopefully get some advice and support from fellow members going through the same experience.

My Dad was officially diagnosed with early onset Alzheimer's in July 2021 at the age of 58. We noticed signs for a number of years before this, dating back to 2017. Memory issues primarily, which have gotten worse over time.

In January of this year, he moved into an assisted living facility. I'm finding it incredibly difficult to watch my Dad fade away, and so quickly. There's a substantial difference in him from his diagnosis to now.

I'm 29 and just feel this is so unfair.. His mum (my Grandma) was diagnosed with Alzheimer's at 70 and sadly passed in 2015 at the age of 75. He always had an inkling he may get it. But, if that was the case, why couldn't it be in another 10 years at a minimum?

It's been very difficult to see him having to give up work, driving, and now living on his own. I try my best to keep my emotions at bay when I'm with him. However, when I go on a night out with friends and have a drink, I'm in floods of tears.

What I would like to know, if anyone has been in a similar experience (and if you don't mind saying)... What is the general prognosis going forward? I don't want to pessimistic, but I want to have somewhat of an idea of how fast this is going to progress. Sadly, I've read that early onset speeds up much quicker the younger you are.

Thank you for reading. Much appreciated.

Hi there ,

I am 32 and my dad was diagnosed in 2018 with early onset dementia at the age of 58.

I can hundred percent relate to your pain as I have always been close to my dad and the grief is ongoing and you will find that in your journey you will go up and down like a rollercoaster of emotions.

I can be fine for weeks maybe even months and then it will hit me and the grief will poor out , it is hard adjusting with the new normal when there is a change but just remember your dad loves you and would not want you to be sad , this is what I remind myself when I’m very down.

I know it’s hard but try and not relate your grandmothers illness compared to your dads because it is very different , early onset is so different to an elderly person developing dementia with age so the decline is going to be more obvious and it is hard .

I wouldn’t ever want to put a time frame on anyones journey or tell you what could happen or what will happen because honestly you just don’t know how the journey will pan out .

With my father we found that his cognitive skills declined first rather than his connection to people but you will find articles all over the internet which confirm dementia means people forget which is not always the case .

My dad needs support with all daily activities now but he knows who I am and that he loves me but it doesn’t make it any easier.

My advice to you is to make the most of your dad while he is able to do certain activities , take him out spend quality time together out the house because that is one thing I wish I did more of.

I spend most my time with my parents at the weekend now just because it’s quality time and we still laugh and we also cry but it’s all about using that time because taking my dad out now is not as simple as it would of been a year ago.

I really do relate with your feelings as it is the most horrific disease , if you ever need anyone to speak to I am happy to speak to you , I can’t tell you how your journey will be but I can relate with the feelings.

Please keep smiling for your dad ❤️