Another newbie, but the same dilemma: mum being diagnosed at the moment

Yorkshire Girl

Registered User
Jul 16, 2014
21
0
This is hardly the most original post, but I just wanted to write it all down and maybe get some perspectives on it.

My mum is 84 and lives on her own since my dad died just over 3 years ago. I live 200 miles away, my half brother (mum’s step-son, but they get on incredibly well) lives 200 miles away in the other direction and my half sister also lives 100 miles away. Over the last couple of years we’ve had to face the fact that mum’s memory is beginning to go and that she is a lot less mentally able than she has been. She still manages to run her house and mostly gets on ok with everyday life but gets confused by some paper work and sometimes forgets what she’s told us or what we’ve told her. She has some good friends and excellent neighbours who look out for her.

Mum (at my suggestion) is in the middle of a diagnosis with the memory clinic. She had an initial assessment, which I attended, where she did the ACE test and scored 71 (which I gather is not good). The initial report from the memory clinic was “Mild impairment and no significant risks” which I think is a reasonable summary of where she is at. Tomorrow she has a brain scan, alas I can’t go with her, but a good friend is going to the hospital with her. And then the memory clinic will contact me (of course with mum’s full permission) to arrange an appointment for a diagnosis.

I don’t think mum is fully aware of the implications of the current investigations. She enjoyed the first visit to the clinic (!) and described the test as “Some interesting questions”, but is worried about the brain scan (bless her, when I was down visiting last weekend she asked me would I still love her if the results of the scan weren’t good :() She thinks her brain is lazy and gets a bit frustrated when she can’t describe or remember things, but seems to think she should just get a grip of herself.

So why am I posting? Well to say hello as I guess I may be around here some more in the future, and just to find out how other people cope with the feelings of guilt, frustration and sadness that I’m feeling. Part of me wants to wrap my mum up and bring her to live with us, but I know that would be a bad idea at the moment, and part of me wants to shut my eyes and make it all go away. Most times when I come off the phone from talking to her I want to burst into tears. Last night I was on the phone to my mum when she suddenly squealed and said she could see my dad standing behind her in the mirror. She knew straight away it wasn’t real, but it gave her (and me!) a real fright.

We’re lucky in many ways, my brother is incredibly helpful and supportive and has her to stay for breaks whenever he can. My husband is very supportive and I have a very flexible job so I can attend clinics etc most of the time. But I just feel completely out of my depth and could do with some friendly advice.

Sorry for the long post and thanks for reading.
 

Trisha4

Registered User
Jan 16, 2014
2,440
0
Yorkshire
Welcome Yorkshire girl. Firstly I'm sorry we have to meet on here. There are all sorts of practical steps to take with or without a diagnosis. One very important one is power of attorney which someone can only give while they have the capacity to do so. Without it things seem to be much more complicated. Then there's attendance allowance. Here are many memory cafés in East Yorkshire, probably everywhere. They can be very helpful and informative. Others will come in with lots of advice I'm sure. For now welcome. You always find someone here to advise, help or just listen.
 

Gossy

Registered User
Jul 16, 2014
3
0
Sounds just like my mother in law. I was hoping we could get her on to some sort of medication which will slow down the process. Be interested to know how this progresses. My husbands Mum had a test and came home saying "I passed". They seem to think most older people have memory loss and she is in denial!
This is hardly the most original post, but I just wanted to write it all down and maybe get some perspectives on it.

My mum is 84 and lives on her own since my dad died just over 3 years ago. I live 200 miles away, my half brother (mum’s step-son, but they get on incredibly well) lives 200 miles away in the other direction and my half sister also lives 100 miles away. Over the last couple of years we’ve had to face the fact that mum’s memory is beginning to go and that she is a lot less mentally able than she has been. She still manages to run her house and mostly gets on ok with everyday life but gets confused by some paper work and sometimes forgets what she’s told us or what we’ve told her. She has some good friends and excellent neighbours who look out for her.

Mum (at my suggestion) is in the middle of a diagnosis with the memory clinic. She had an initial assessment, which I attended, where she did the ACE test and scored 71 (which I gather is not good). The initial report from the memory clinic was “Mild impairment and no significant risks” which I think is a reasonable summary of where she is at. Tomorrow she has a brain scan, alas I can’t go with her, but a good friend is going to the hospital with her. And then the memory clinic will contact me (of course with mum’s full permission) to arrange an appointment for a diagnosis.

I don’t think mum is fully aware of the implications of the current investigations. She enjoyed the first visit to the clinic (!) and described the test as “Some interesting questions”, but is worried about the brain scan (bless her, when I was down visiting last weekend she asked me would I still love her if the results of the scan weren’t good :() She thinks her brain is lazy and gets a bit frustrated when she can’t describe or remember things, but seems to think she should just get a grip of herself.

So why am I posting? Well to say hello as I guess I may be around here some more in the future, and just to find out how other people cope with the feelings of guilt, frustration and sadness that I’m feeling. Part of me wants to wrap my mum up and bring her to live with us, but I know that would be a bad idea at the moment, and part of me wants to shut my eyes and make it all go away. Most times when I come off the phone from talking to her I want to burst into tears. Last night I was on the phone to my mum when she suddenly squealed and said she could see my dad standing behind her in the mirror. She knew straight away it wasn’t real, but it gave her (and me!) a real fright.

We’re lucky in many ways, my brother is incredibly helpful and supportive and has her to stay for breaks whenever he can. My husband is very supportive and I have a very flexible job so I can attend clinics etc most of the time. But I just feel completely out of my depth and could do with some friendly advice.

Sorry for the long post and thanks for reading.
 

Yorkshire Girl

Registered User
Jul 16, 2014
21
0
Thanks for the welcome. I've been reading some of the other threads and it is comforting to read how other people are feeling very similar emotions and concerns.

In terms of practical things: mum already has an enduring power of attorney (set up and signed before 2007 so it is still valid), I must get a certified copy though. We've also sent off for the forms for the Welfare and Health Lasting Power of Attorney and will fill that in as soon as they arrive. Mum has one of the bracelet alarms which she is good about wearing and plenty of her neighbours have spare keys and my contact details. If there are other practical things we could do please suggest them!

Beyond that I guess it is just a waiting game until we have a diagnosis. When I spoke to mum this evening she seemed more up-beat and was saying she just hoped the brain scan would find something so she could know what was going on with her forgetfulness.

I'll post when I hear more, but in the mean time thanks for the welcome and for letting me witter!
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
Thanks for the welcome. I've been reading some of the other threads and it is comforting to read how other people are feeling very similar emotions and concerns.

In terms of practical things: mum already has an enduring power of attorney (set up and signed before 2007 so it is still valid), I must get a certified copy though. We've also sent off for the forms for the Welfare and Health Lasting Power of Attorney and will fill that in as soon as they arrive. Mum has one of the bracelet alarms which she is good about wearing and plenty of her neighbours have spare keys and my contact details. If there are other practical things we could do please suggest them!

Beyond that I guess it is just a waiting game until we have a diagnosis. When I spoke to mum this evening she seemed more up-beat and was saying she just hoped the brain scan would find something so she could know what was going on with her forgetfulness.

I'll post when I hear more, but in the mean time thanks for the welcome and for letting me witter!

Even though neighbours have keys, I'd recommend a key safe outside to allow for emergency access. It has already been very helpful several times enabling nurses etc to get in when mum didn't hear the doorbell. In the middle of the night paramedics aren't going to be able to knock on neighbour's doors....and I wouldn't want them to be woken anyway. The one we have is police and insurance company approved, cost about £80 including fitting charge, and was supplied by the local Carelink organisation which runs the emergency alarm set up.
 

mommycancook

Registered User
Jul 17, 2014
2
0
family

You are blessed to have a very support family member, this is a very important. It seems like you have a very good attitude in approaching this illness. Get your mom the right nutritious diet and exercise. The NY Times had a great article on walking to help the early signs of dementia. There is also much help with diet in the early stages of dementia.

You may want to google "MAL ALZHEIMER"
 

Mr Rusty

Registered User
Jul 14, 2014
14
0
London
Hi Yorkshire Girl,

I'm a newbie too. Sending you a big hug since I know exactly how you are feeling at the moment.

Just wanted to say something about the brain scan. My mum had one too and a week later the doctor called me back to say that the scan results were clear - ie no tumor or abnormality. I breathed a huge sigh of relief, thinking that the memory loss was just down to old age...but then the doc said that because the results were clear this means she must be suffering from dementia. I wasn't really prepared for that at all. I thought the all clear would be a good thing. And in hindsight I guess probably is (ie a tumor would have been life immediately life threatening
) I But I hadn't been prepared or forewarned about why mum was having the brain scan in the first place. My fault - should have asked...

It was another three years before a different doctor mentioned the A word (as per my first post).

My thoughts are with you and I hope you get the same feeling of support and camaraderie that I have recently received from TP
 
Last edited:

Yorkshire Girl

Registered User
Jul 16, 2014
21
0
Quick update

Hello again,

I just thought I'd give a quick update. Mum had her scan last week. She said it was a bit of an anticlimax, thankfully they didn't give her any details - we will have to wait until we go back to the memory clinic to find out what (if anything) they found. Mr Rusty thanks for sharing your experience about your mum's scan (I've read your thread, and when I read your first post I was very struck by some of the similarities between what is happening with our mums). I am absolutely convinced that mum's diagnosis will show that she has Alzheimers - I thought there was something that could be seen with a brain scan?

We had a slightly disturbing episode yesterday that I'd welcome people's thoughts on. Mum is coming to stay with us for a week's holiday next week.Usually when she comes for the weekend she arrives on Friday lunchtime (thankfully she is still able and enjoys travelling by train) and then I go with her to the station on a Monday morning on the way to my work to put her on the train home. But when she comes for this week's holiday we'd agreed that she would stay Saturday to Saturday because I have to go away with my work on the Monday after she leaves and so I need some time to get organized etc. When I spoke to mum last night she said to me "Why am I coming Saturday to Saturday?" and I explained to her that we'd talked about it and I was going away with work on the Monday. Then she burst into tears and wailed (that's the only word for it) "but I want to stay til Monday". I reminded her what we'd discussed, but she just wailed again "why can't I stay until Monday". I was so suprised and shocked that I ended up saying that it would be ok, she could stay until Monday and we would work out a way of getting her to the station and me away with my work. She then just started sniffling and saying how much she loved us.

I came off the phone thoroughly bemused (and quite fed up). Then an hour later she phoned to say I was to ignore everything she'd said and that she was fine with going home on Saturday.

I found it really disturbing, and a bit of a worrying taste of things to come. I'm worried I didn't handly it properly and that there will be much more like this. I love my mum to bits and try as much as possible to do things with her, go to doctors appointements, have her to stay etc, but sometimes I absolutely can't rearrange things and I don't want to have her in floods of tears and as distraught as she was last night :( Is this something typical and that I should expect more of?

Sorry - I've rambled on again: I really need to learn to be more brief! Thanks for reading.
 

smailes

Registered User
Jun 26, 2014
76
0
Ditto

Hey there. I hear and feel exactly what you are feeling. You sound like you have a good relationship with your mother. Unfortunately it's not quite the same for me. I too am a newbie to all this. My mother has had a memory test and a cat scan. The memory test results were significant but the doctor said that they were average. Whatever that meant and we are still awaiting the results of the scan.
My issue is that I'm coming to this at a very difficult time. My mum is in total denial that anything is wrong. Absolutely denial. Shes managed to get herself into so much debt and wont acknowledge the fact. She withdraws money and then can't remember what she's done with it and then isn't left with any for food. My mother is brilliant at playing "the I'm in control" game and refuses help from me. I'm so lucky to have my husband to support me but he's just lost his father so my rock has slipped away for a bit.
I'm trying get as many agencies involved but she's not having it. She says I'm making up stories and telling lies on her. I'm too am also trying to get lasting power of attorney but that's only going to work if she actually signs the forms.
sometimes I feel like I've got somewhere and I feel that she's listening and finally getting the fact that I want to help but that lasts all of five minutes. It's sad to say but I almost wish she was further down the line as she would then be able to relinquish some control or at least not have any awareness. Sad for her but easier for me. Totally selfish I know. Being so far away with nobody close by her to help makes the situation really difficult.
It's very frustrating and this forum is amazing to have, to release some of. It's great hearing people in the same boat as you so you don't feel alone.
I took advice from here and it helped so much.
It's a long road but I know that this forum will continue to support me and I hope it does the same for you too.
Sorry I couldn't offer any hard advice but just wanted you to know you are not alone.
Roz


Hello again,

I just thought I'd give a quick update. Mum had her scan last week. She said it was a bit of an anticlimax, thankfully they didn't give her any details - we will have to wait until we go back to the memory clinic to find out what (if anything) they found. Mr Rusty thanks for sharing your experience about your mum's scan (I've read your thread, and when I read your first post I was very struck by some of the similarities between what is happening with our mums). I am absolutely convinced that mum's diagnosis will show that she has Alzheimers - I thought there was something that could be seen with a brain scan?

We had a slightly disturbing episode yesterday that I'd welcome people's thoughts on. Mum is coming to stay with us for a week's holiday next week.Usually when she comes for the weekend she arrives on Friday lunchtime (thankfully she is still able and enjoys travelling by train) and then I go with her to the station on a Monday morning on the way to my work to put her on the train home. But when she comes for this week's holiday we'd agreed that she would stay Saturday to Saturday because I have to go away with my work on the Monday after she leaves and so I need some time to get organized etc. When I spoke to mum last night she said to me "Why am I coming Saturday to Saturday?" and I explained to her that we'd talked about it and I was going away with work on the Monday. Then she burst into tears and wailed (that's the only word for it) "but I want to stay til Monday". I reminded her what we'd discussed, but she just wailed again "why can't I stay until Monday". I was so suprised and shocked that I ended up saying that it would be ok, she could stay until Monday and we would work out a way of getting her to the station and me away with my work. She then just started sniffling and saying how much she loved us.

I came off the phone thoroughly bemused (and quite fed up). Then an hour later she phoned to say I was to ignore everything she'd said and that she was fine with going home on Saturday.

I found it really disturbing, and a bit of a worrying taste of things to come. I'm worried I didn't handly it properly and that there will be much more like this. I love my mum to bits and try as much as possible to do things with her, go to doctors appointements, have her to stay etc, but sometimes I absolutely can't rearrange things and I don't want to have her in floods of tears and as distraught as she was last night :( Is this something typical and that I should expect more of?

Sorry - I've rambled on again: I really need to learn to be more brief! Thanks for reading.
 

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