Waiting is so frustrating!!

[Angelah18]

Hi, I've posted a few times before. My mum is 58 years old & currently awaiting referrals and tests, seeking some sort of diagnosis. She is being seen by a neurologist for symptoms relating to alzheimer's but also a separate issue that at present is seen as more urgent. In brief, my mum has had some memory issues since last summer which at first we thought was due to lack of sleep as she has other health issues, in November she was admitted to hospital with severe confusion, mri showed some loss if spinal fluid but nothing showed relating to alzeimers, fast forward nearly 5 months & things have deteriorated very quickly. She sometimes isn't aware of what day it is, she relives memories from the past that she thinks are happening in the present & becomes very upset & distressed, she has very poor word association at times, she is exhausted constantly, her personality has changed & she can be quite unreasonable about things that wouldn't normally be an issue. In the last few week's I've also noticed her hearing seems to have deteriorated & she staggers & walks much slower than normal. The neurologist was aware of some of this when she was seen last month. I'm just feeling so frustrated that we don't seem to be getting any referrals at present to gain any answers. I think it's alzheimer's that she has, she is frightened herself as she sees the changes. In a way sometimes I feel like I'm the parent & it's Heartbreaking to watch & I feel helpless as we have no answers yet.
I guess I'm just looking to see if anyone has or is going through similiar. I don't know where to turn for support.

 

[Grannie G]

Hello @Angelah18

It sounds as if there have been many changes in your mother`s symptoms over the past years and perhaps that is why there is no definite diagnosis yet.

All I can suggest is you continue to make contact with her doctors and advise them of changes. I would put everything in writing so there is some hard copy evidence of your concerns.

 

[nestle]

It is so frustrating . Keep asking . Keep chasing the system . I wish you strength

 

[Storm trooper]

Hi, I've posted a few times before. My mum is 58 years old & currently awaiting referrals and tests, seeking some sort of diagnosis. She is being seen by a neurologist for symptoms relating to alzheimer's but also a separate issue that at present is seen as more urgent. In brief, my mum has had some memory issues since last summer which at first we thought was due to lack of sleep as she has other health issues, in November she was admitted to hospital with severe confusion, mri showed some loss if spinal fluid but nothing showed relating to alzeimers, fast forward nearly 5 months & things have deteriorated very quickly. She sometimes isn't aware of what day it is, she relives memories from the past that she thinks are happening in the present & becomes very upset & distressed, she has very poor word association at times, she is exhausted constantly, her personality has changed & she can be quite unreasonable about things that wouldn't normally be an issue. In the last few week's I've also noticed her hearing seems to have deteriorated & she staggers & walks much slower than normal. The neurologist was aware of some of this when she was seen last month. I'm just feeling so frustrated that we don't seem to be getting any referrals at present to gain any answers. I think it's alzheimer's that she has, she is frightened herself as she sees the changes. In a way sometimes I feel like I'm the parent & it's Heartbreaking to watch & I feel helpless as we have no answers yet.
I guess I'm just looking to see if anyone has or is going through similiar. I don't know where to turn for support.

Hi
I feel for you, we had memory issues with mom for a couple of years and found it really hard to even pop it in the conversation, even getting the ball rolling to visit the gp was horrendous!! In the end we got her there by saying it was her well woman clinic (I had spoken to the gp and given then the heads up first) but it was awful I just wanted the ground to swallow me up!! Anyway fast forward it’s taken a while but last year she was diagnosed with mild cognitive impairment and was chuffed it wasn’t anything bad (my moms words) since then it’s been terrible she has been hallucinating wondering off on one occasion in her pjs after midnight and picked up by the police (thankfully)don’t even want to think about what could of been!!!!! That was ur down to a possible water infection and delirium Anyway we have since had another memory test and a head scan and have an apt next month with the consultant!! I’m dreading it!!!more so because mom knows her memory is not good but we haven’t mentioned dementia or Alzheimer’s for fear of what’s to come and how on earth do I then once confirmed if it is which I’m certain it is how do I talk to mom about it and more so what do I say I’m petrified!!!!!!! It’s awful isn’t it!! Glad I have TP to have a rant

 

[Susieknight]

I really understand how you feel, I am currently waiting for a diagnosis of something after over one year of tests and my life has stopped. I have lost my job because I made mistakes. and now i don't feel safe for me to leave my flat. My daughter is suffering along side me because we can't get help until we know for sure.
I have worked with Dementia my whole life , I'm not afraid of it, living well with Dementia if a reality with support. I am 56. Employers need to be more aware of the early stages and how to support employees who are struggling. Sometimes it's the not knowing that causes more distress than knowing.