Mum mid stage with no diagnosis

[Anna T]

That sounds quite negative with regards to meds it’s all trial and error all you can do is try there is no guarantee with anything but you don’t stop trying.

 

[Jintyf]

Anna you are so overwhelmed with this and rightly so.
I am so shocked that the help differs so greatly. In my opinion, Alzheimer's drugs can work to slow the disease down and in my Mums case they needed to try a few things to get what worked. Luckily for us, we had really good support here in East Lothian where I live.
My understanding is though, that the drugs will only work well in the early stages and if someone has progressed too far then they are not as helpful?
Mum was diagnosed Jan 2013 and so we lived for a few years with a relatively high quality of life - just the past two years when thigns got really bad and she is now in a nursing home since March this year.
I wish you well on your journey.... it's not easy but support and help are here for you. I've cried more tears than an ocean. Big hug.

 

[Anna T]

Anna you are so overwhelmed with this and rightly so.
I am so shocked that the help differs so greatly. In my opinion, Alzheimer's drugs can work to slow the disease down and in my Mums case they needed to try a few things to get what worked. Luckily for us, we had really good support here in East Lothian where I live.
My understanding is though, that the drugs will only work well in the early stages and if someone has progressed too far then they are not as helpful?
Mum was diagnosed Jan 2013 and so we lived for a few years with a relatively high quality of life - just the past two years when thigns got really bad and she is now in a nursing home since March this year.
I wish you well on your journey.... it's not easy but support and help are here for you. I've cried more tears than an ocean. Big hug.

 

[Anna T]

Sounds like you thankfully got the support your mum deserved @Jintyf and yes crying oceans is a daily thing.
Sorry your mum had to eventually go into a nursing home it must the the most anguishing part of the journey ? - the thought of that possibility keeps me awake at night literally..
How was it/ is it for you emotionally? and how had your mum settled in? x

 

[Jintyf]

Sounds like you thankfully got the support your mum deserved @Jintyf and yes crying oceans is a daily thing.
Sorry your mum had to eventually go into a nursing home it must the the most anguishing part of the journey ? - the thought of that possibility keeps me awake at night literally..
How was it/ is it for you emotionally? and how had your mum settled in? x

@Anna T
Tears are better out than in! This dementia journey is not easy and I never thought I could cope with Mum going into a home and having to sell the family home of 60 years but it's amazing what we are actually capable of doing. It's hard but it is possible to come through this. Rather than telling myself I was putting my lovely Mum in a home - I told myself that I had actually kept her out of a home for the 6 years I looked after her from her diagnosis (my Dad died 6 months after that). I was the only family member in this country who could be there for her and I did everything. And at the end I was so exhausted I knew I couldn't carry on. There comes a time when you will know it is the right thing even if you don't want it to be so.
Mum is as settled as she was ever going to be. I looked around for the very best place for her and she has a lovely bright room full of her own things. She's very popular with the staff and other residents and takes part in activities. Most importantly they can give her the nursing care that she needs now at this stage.
The tough part now is that she has recently been turning on me telling me I have left her there she wants to go home and that I am a bad daughter. That is tough to hear but I have to remember that is the disease talking not Mum....we are very close and love each other very much.
I still cry buckets - had a review meeting with social services and the home yesterday as she has been there 3 months now and I found myself crying for no apparent reason just an overwhelming sadness.
Each part of the journey we are faced with loads of 'new normals' and we learn to adapt/adjust and get on with things as they are. I can't fight the disease, I can't change the situation, so I try to focus on doing the best I can for Mum and try to look after myself too as its so easy to get overwhelmed.
Take care and feel free to PM me at any time.

 

[Anna T]

@Jintyf Thank you for your uplifting message which resonates a lot I only hope that one day I can be as measured as you are and that my mum can eventually find some “peace” in an environment that she likes.
Today has been one of those particularly bad days and I’m afraid I wasn’t patient,we are trying to arrange respite ASAP.. similarly to your mum, mum has been in her home for 55years living alone for the past four years after dad died - I’m sure grief and loneliness triggered her illness because she is so so different and the symptoms are escalating very quickly... like stages of grief I’m so flipping angry when I see older ladies out and about I’m so resentful that they are ok this even extends to mums lifelong friends who are living their lives I’m trying to understand why her why my mum? - I know that’s terrible and it will pass as I don’t wish illness on anyone I’m just so hurt... thanks so much again take good care x oh and I will