No diagnosis

[BeadieJay]

A couple of days ago I posted in Sue38's thread about "Licence Revoked" saying that my mum had promised me her car when she finally gives up driving, and how I was hoping she'd remember because I couldn't ask her for it.

Well, a short while ago my dad phoned to ask if we'd like to have mum's car I thought it was great that mum had remembered, but found out later that my sister had prompted her. Anyway, I'm glad it's happened without any embarrassment all round. I spoke briefly to mum, she sounded her usual chirpy self, but couldn't remember what her consultant had told her today, even though she had it written in her diary.

So, I phoned my sister to find out the results of mum's brain scan. There is no scarring and no tumours and the consultant said there was no evidence of mum having had a stroke. He said that he wasn't prepared to give a diagnosis yet, because he doesn't want to put her on any medication because of the possible bad side effects. My sister made another appointment for September, so we're still no nearer knowing what's wrong with mum.

She is totally confused about everything. She doesn't want to do anything at all. She's still on anti-depressants. My sister goes in every day to visit. She says that, although mum knows how to dress herself etc, she can't get enough enthusiasm up to decide what to wear without getting my sister to decide for her.

Mum and Dad are going to see a solicitor tomorrow about giving Power of Attorney to my sister (I told sis that I know where she lives, in case she does anything dodgy LOL) I think that there will inevitably come a time when both mum and dad will have to go into a nursing home. My dad is still able to deal with his finances, but his short-term memory is practically non-existant.

I'm sorry this is turning out to be so long - it helps to get it all off my chest

There are a couple of things that my sister said that made me think that mum is suffering from early stage Alzheimers. She said that mum was panicking because she didn't know if Jean (my sister) knew how to get to the hospital, and did Jean have a map. Jean has been to this particular hospital many times, not least the last couple of weeks with mum The second thing is that mum made a comment to Jean which really upset her. I can't remember (LOL ) the details, but Jean used to see Mum & Dad every Saturday, every Tuesday after work and would phone during the week. Mum turned round to her and said that Jean had stopped coming on the Tuesday because she (Jean) didn't like her (mum) anymore. I don't know why mum said that, as Jean is now seeing them every single day. She is letting Jean do everything for her.

My sister thinks that Mum hasn't got Alzheimers because she still knows how to do things, but I think she's in the early stages. Is that possible? That mum could have Alzheimers but still know how to look after herself? That capability could disappear at any time? I don't know why I want it to be Alzheimers, but I think it's because I want a label for what's wrong with mum. Does that make sense? Is that wrong of me? Should I just be rejoicing that there's no diagnosis yet, or continue to read up everything I can about Az so that I can help mum and advise my sister when the symptoms get worse?

Thanks for reading this far

 

[Margarita]

Should I just be rejoicing that there's no diagnosis yet, or continue to read up everything I can about Az so that I can help mum and advise my sister when the symptoms get worse?

I would perceive that as in think of the worse and hope for the best So why Not
Should I just be rejoicing that there's no diagnosis yet, & continue to read up everything I can about Az so that I can help mum and advise my sister when the symptoms get worse?

Just a thought, as I use those kind of philosophies (think of the worse and hope for the best)

 

[Grannie G]

Hi Beadiejay

If your mother`s seen a consultant and all the tests have drawn a blank, I feel you`ll just have to take his word for it, unless you`re not happy with his diagnosis and want to go for a second opinion.

My husband was diagnosed with Alzheimers after his scan showed brain shrinkage.. If this was so, it would surely have shown up on your mother`s scan, wouldn`t it.

The consultant sounded pretty sure nothing was conclusive at this stage, so really all you can do is wait for September, to see if there is any change in your mum`s condition.

It is difficult. I understand you wanting a label. Even if the news is devastating, at least you know where you stand, whereas not knowing anything definite, leaves everything in the air.

Take care

 

[Skye]

Hi BeadieJay

I can understand your wanting a diagnosis for your mum. I'm the same, I like to know what I'm up against. Possibly the consultant is unwilling to give a diagnosis because according to the NICE guidelines he wouldn't be able to prescribe medication until the disease has progressed.

It's perfectly possible for your mum to be able to look after herself at this early stage. The progression is different for everyone, but my husband was able to wash and dress himself for six years from diagnosis. He can still make himself a sandwich, although he doesn't do any cooking.

Possibly when you see the consultant again in September he will be able to give you a better idea.

In the meantime, it's good that you're getting the legal and financial matters sorted.

Keep in touch,

 

[sue38]

Hi Beadiejay,

It sounds as though there may be other reasons for your Mum's conditions other than AD and I understand your needing to know. A diagnosis of AD is shocking but at least to a certain extent you know what you're dealing with and can start to move on. With any illness I think the 'not knowing' is the hardest part.

With regard to the EPA, I know you were joking about knowing where your sister lives , but it might be worth appointing you both on a joint and several basis so that you feel more involved and would be there to deal with things if your sister couldn't? Just a suggestion.

Sue

 

[jeanierec]

Hello Beadiejay

I had to post `cos what you`re feeling struck such a chord with me. My mum was only diagnosed a month ago and she is still looking after herself maybe not up to full strength but certainly adequately.

But the real reason I`m posting is because like you I`d already diagnosed what was wrong with mum and on hearing it confirmed my first response was one of relief that I had been vindicated and that I hadn`t been imagining things.

However I cannot urge you strongly enough to TAKE CARE OF YOU and I know all our other friends on TP will say the same . I`ll not bore you with the details of my " temporary " breakdown but suffice it to say that in order to be there and be strong for everyone else you have to look after yourself first and foremost.

You have found an amazing source of strength by coming to TP everyone totally understands and supports even in the early stages when certainly I felt almost ashamed for mentioning my problems in the face of what everybody else was going through . Accept the help that will be showered on you `cos it is so heartfelt and genuine and is a constant source of comfort which you in turn will repay.

So whatever the ultimate diagnosis take heart from the friends you make here.

Love Jeanie x

 

[Margarita]

If this was so, it would surely have shown up on your mother`s scan, wouldn`t it.

Now that a good point , you would think that I would also , if what I type below did not happen to my mother

when BeadieJay says

There is no scarring and no tumours and the consultant said there was no evidence of mum having had a stroke.

what was they looking for , was they ask to look for AZ ?

I only say this , because when my mother had a bang to the head last year , taken to hospital sent back home after they thought every thing was OK . then sent back hospital because my mother was vomiting yellow water so they thought she had a blood clot in the brain

So when in hospital , they done a brain scan . When I ask about how was the AZ , they said they don't know because they was not looking for that , only the blood clot

So My point is , if they not looking for AZ they would not pick up on it .

I still go for hope for the best

 

[Gromit]

Sounds familiar

Hi Beadiejay,

My Dad is in very early stage AZ. We got the diagnosis a month or so ago. He went through all the usual tests, bloods, ECG, brain scan etc. The brain scan didn't show anything - i.e. it ruled out things like tumours etc - there was no mention of brain shrinkage - though in some cases this can be seen, though i don't believe it can be seen in all.

The consultant didn't want to diagnosis AZ too soon, first she wanted to start Dad on anti-depressents, then after having been on the anti-depressents and having 3 sets of memory tests over several months - the consultant made the diagnosis of AZ. Like you I thought forewarned was the best thing - though it still came as a total shock when we got the "label" as such.

Jeannie's advice is extremely important - you must look after yourself and try whatever works best for you to keep a healthy (if possible) perspective. Many people on TP can help you with this.

In order to address your question around AZ and the ability to do things for yourself - if you met my Dad you wouldn't think there was a problem at all (unless you spoke to him for a short while then you notice that he repeats things). He dresses himself, washes himself (when reminded I have to add) and can make basic meals (though only if someone is around in case he forgets to turn something off). He has forgotten how to use certain appliances - its as though they are new to him as he isn't always sure what button to press - but more often than not he can get there in the end.

I know how you must be feeling - not knowing if it is AZ or it isn't, but still knowing that something is wrong. Unfortunately most everything seems to take a long while to get to the point of progress - and if like me you are impatient then it can really take it out of you.

You and your sister are doing the right things, ask as many questions as you want with the consultant - I took a notebook with me which I kept my questions in and I also wrote down everything when we were there. Perhaps this could help you too.

I hope you get some answers soon, but be prepared if you can, it can be a difficult journey but there's always TP.

Take care and I hope the above helps you a little.

Love
Alison
x

 

[BeadieJay]

Thank you all so much for your replies and most especially for your support.

I've just sat here for about 20 minutes trying to think what to say next, but I'm feeling really depressed because of other things going on in my life (a very, very depressed 12 year old son, who is making life depressing for the rest of us) Not knowing what's wrong with my mum is really hard to deal with, but like Margarita said, I need to think of the worst and hope for the best.

My dad phoned tonight about the car. He wanted to remind my husband to take the MOT certificate with him when he collects it. Half an hour later he phoned again - to remind my husband to take the MOT certificate I didn't know whether to laugh or cry

I'm sorry, I wanted to reply to each of you individually because I really am grateful for the time and effort you've taken to respond to my post, but I just can't concentrate. The kids are refusing to sleep (this is part of my son's problem - he hates his bedroom, it's tiny, he has every right to hate it, I hate it, hubby hates it, but we can't afford to move house or an extension of any kind, so he's stuck with it, and even if he persuades his sister to swap rooms, it'll only mean that soon she'll hate the room and the same depressing cycle will begin again. I'm seriously thinking of buying a nice comfy sofa (our current one is horrible!!) and letting one of them sleep downstairs permanently.) Arrrgh, hormones

I think the best thing I can do right now, is go to bed. Thank you again, and goodnight

 

[Skye]

BeadieJay

I'm so sorry you're feeling so low. I know how you feel, I've just come out of a very bad spell. I can't help with your problems, I wish I could, but it may help a bit to know that you're not alone.

I'm sorry I didn't catch you before you went to bed, but if you log on in the morning it may help you to know that someone was thinking about you.

Please post again tomorrow and let us know how you are.

Love and hugs,

 

[BeadieJay]

Dear Skye

Thank you so much, your words were a real comfort to me first thing this morning. I'm feeling slightly better, I took the kids ice skating this morning with some other families and they had a lovely time.

The trouble with depression is that sometimes every little thing becomes so big. I'm a bit embarrassed now at mentioning the problems we're having with our son and his sleeping arrangements - it's all so trivial compared to what so many people on here are going through. But I imagine tonight will be the same traumatic time for all of us, so I think I shall invest in some earplugs, go to bed before my son and hide under the duvet

My dad phoned again this morning about the car. He thought my husband was coming down on Saturday to collect it - we hadn't made any plans yet, so I don't know where he got Saturday from! We live about 3 hours away from mum & dad. I'm glad my husband will get to visit with them for a little while when he gets the car. I want to hear from him how he thinks they're doing, rather than just taking my sister's word for it. I'm as worried about my dad as I am about mum. He's not been diagnosed with Alzheimers either, but his memory loss is severe and debilitating.

I will definitely be staying at TP, it's been a real comfort and help. Thank you

 

[Skye]

Hi BeadieJay

I'm glad you are feeling a bit better today.

Please don't be embarrassed about posting. Your problems are not trivial, because they're all part of the whole scene. You're right that small problems become magnified, but when we're stressed, they can't be seen in isolation; they're all part of the general misery, which is huge.

I hope your husband will be able to give you a better picture of where your parents are at, and I hope it will be reassuring.

I'm glad you're going to stay with us, please let us know how you get on.

Love,