is this a proper diagnosis

ellie 123

Registered User
May 25, 2006
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0
Thanks Hazel.

Yes, there are loads to think about and do but I have decided that when things settle down a little I am going to treat myself to a break otherwise I think the whole thing (practical and emotional) will prove too much for me. I realised that over the last four weeks, mum's health went down ill so fast that every day/night there was a different worry/problem. By the end of last week, I could feel myself losing it a bit and I am now slowly catching myself quite relaxed at times and that's because mum is not my responsibility at the moment.

And actually there are moments, such as the consultants hoping they have as much energy and are as feisty as mum when their 70 let alone 90, as she is. Apparently at the mo she's not co-operating and giving them a hard time, telling them off and slapping their hands like naughty school boys. As I'm not allowed to speak to or visit mum until she's more settled, the doctors telephone me and I sense a certain amount of admiration for her in their tone which if she had awareness, she would relish!

I have a one to one at my local alzheimer's group after the hols, so that will help a lot.

Happy Easter to everyone.

Love ellie
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Ellie

Glad you're feeling a bit more relaxed. Your mum sounds one feisty lady! I bet she saves the feistiest bits for you, though!

Enjoy your Easter while you can. You need a break, and you deserve it!

Keep in touch,

Love,
 

ellie 123

Registered User
May 25, 2006
91
0
Hi everyone

Unsurprisingly the euphoria of the past 24 hours had disappeared today and I've moped about all day feeling v depressed. I think it's anxiety/worry about the immediate future and long term future. I know I should be taking one day at a time but this is my only remaining parent and i'm certainly having difficulty dealing with the turnabout that life throws at us - that of becoming the parent to our parents. I'm scared and that's really stupid for a 50 something adult to say.

How do other people cope with this when they're on their own? I know I've got my sons but they have their own lives and I know they'd be there for me in a second but I just don't feel I can call on them like every day. It's like sometimes just a hug or a cuddle and a reassuring voice telling me 'everything's going to be ok', which is what dad would have done. Must go, getting v tearful now.

Thinking of you all over the hols, ellie
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
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Kent
Dear Ellie,
You`re bound to go through quite dramatic ups and downs for a while, following the trauma of your mum being sectioned. What happened takes some getting used to. It must be even harder when you`re on your on your own.

Don`t be too independent regarding your sons. I understand you don`t want to put on them, as I feel like that with mine, but you could let them know how devastated you are. If they don`t know how badly this has affected you, they won`t realize how much you need that little cuddle or bit of human warmth.

Be gentle with yourself. I understand when you said you find it hard to open up on message boards, but TP is no ordinary message board. It`s a very special support group for all who are in the same, or very similar positions to you.

There will always be someone here to give `virtual` cuddles and very sincere warmth.

Please keep posting and let us know how you are coping.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
ellie 123 said:
Hi everyone

I'm scared and that's really stupid for a 50 something adult to say.

How do other people cope with this when they're on their own?

Hi Ellie

As you've quickly realised, ups and downs are par for the course. We all have days when we feel we can cope, when things are smooth, if not 'normal'.

Then the following day, wham, we're brought back down to earth with a bump!

If it's stupid for you to feel afraid, what about me? I'm 69, and I'm scared stiff! It's all part of this illness, we none of us know how it's going to progress, or whether we will be able to cope. It's impossible to make plans for the future. And that's scary.

And I'm on my own too, caring for my husband whom I love so much, but can't communicate with.

And that's where TP comes in. OK, the hugs are only virtual, but the warmth of sympathy is there. We are all in the same boat, or have been, so we understand when things are rough.

Just take one day at a time, enjoy the good days, and survive the bad -- we'll all help with that.

Love,
 

ellie 123

Registered User
May 25, 2006
91
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Just had to post this reply tonight - you're all so right (ups and downs), have a good day today!!! But I'm really not too sure how much that had to do with having a chat with a lovely nurse on mum's ward today. She actually sounded as if she had time for me and had a real insight into mum. I was able to ask stupid questions and she explained the usual outcome for situations such as ours. I t put my mind at rest and calmed me a lot. Whereas I'm thinking in minutes and hours, she made me realise it hasn't even been a week yet and there's so much ahead before I can look at my mum's choices. It made me stop and take a breath, it was really strange, as if someone had given me permission to get back to my own life. Because since this all happened, although I'm not aware of thinking about it 24/7, I know I must be because I've had so many panic attacks and butterflies and nausea and every thing I eat goes straight through me - which never happens to me usually.

Also, and I don't mean this in a weird or sick way, but it kinda comforts me to know that I'm not alone in being alone, if you see whaat I mean!! I tmakes me feel part of a group and that's comforting at the moment. Thanks Sylvia and Hazel.

Lots of love ellie
 

ellie 123

Registered User
May 25, 2006
91
0
Update on mum's sectioning - actually she's been taken off section now, as she's co-operating! But every five minutes she asks to be taken home and ' why is she being kept in hospital - because there's nothing wrong with her.'

Mum's ward is good and the staff are brilliant. But initially I found it v. distressing as I had been promised a small team who would keep me in the loop. Unfortunately that didn't happen and once again I had to fight to get someone to even talk to me. I stood outside the door and heard about my mum's being taken off section (the doctor didn't have time to tell me directly). I was advised of ward rounds and case meetings but when I mention these things, I just get blank looks. Sometimes I think I'm losing my mind. For days I had no idea what was happening and it made me ill with worry and angry and frustrated.

Mum had a scan - I thought they were looking for damage to blood vessels - but apparently they were looking for a tumour (all clear on that score). When I asked about any vascular damage, the doctor explained that they hadn't been able to see that as the pixels weren't good enough. Still I guess I should be grateful, last week I was told a scan was too expensive. But then the nurse in charge couldn't understand why they hadn't done both at the time as according to her they can check for any stroke damage, etc.

The doctors are all v. positive and tell me how well mum is getting along and even talking about a home visit (occupational), so she can show them she can make a cup of tea at home. While at the same time the nursing staff are telling me how worse mum is and how she is becoming more confused. I must admit she talks a lot of rubbish now which she didn't do before she was admitted. She also has great difficulty in communicating now but I guess that could be a side-effect of the drugs she's on. She's also really scared of two other women on the ward and she feels sorry for them - she tells me 'poor things - it must be terrible to be like that'!!

She's so sad and keeps asking me how it has come to this.

Finally the doctors have said they do not know what is wrong with mum. She doesn't present with the usual symptoms. This is frightening because if they cannot pigeon-hole her, I fear they will just send her home and in six months time she and I will be back in the same situ.

I want my mother back - even though she wasn't a particularly pleasant person - anything is better than this living death. She sits there crying, asking to go home - a small, frail 90 yr old and all I want to do is pick her up and take her home.

Ellie
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
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Kent
Thank you for the update Ellie.

I`m sorry you are having to fight for every scrap of support re your mum. I hope she receives the care she needs to enable you to feel less anxious. She sounds so vulnerable.

Take care
 

ellie 123

Registered User
May 25, 2006
91
0
Thanks Sylvia and Hazel, I really needed that hug. Today I was so stressed that my body was rigid and I had to keep saying to myself - relax, relax.

Sometimes I feel so selfish moaning on about my problems when I know we're all in the same boat. Sorry. I hope that sometime my experiences will help others on TP.

I had another one to one at my local Alzheimer's (there was a time, before it affected me personally, that I could never remember how to spell that word!) group today and was able to let go and pour it all out, it did help.

Will give you all another update in a few weeks time when the professionals should be letting me know mum's options.

Love ellie
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Ellie

Glad you were able to find some support from your AS group. We all need to talk sometimes.

Don't feel you have to wait until you have some news before you post again, we're always here for you.

Love,
 

ellie 123

Registered User
May 25, 2006
91
0
Will mum die in hospital

I know it sounds dramatic but I think I've signed my mother's death warrant by allowing her to go into hospital.

Mum was sectioned six weeks ago and although she was removed from section almost immediately and is now on anti-phsycotic and anti-depressant drugs, I was still unhappy with the hospital's decision to discharge her this coming Monday with only Homecare and meals on wheels - mum has a history of not allowing them access - however that seems irrelevant now.

Last night I was informed that mum has pneumonia and a hospital born stomach bug. Each time I'm told something different. Sometimes it's she fine and I sleep easy but then within the same day, another person will tell me she's seriously ill and they are worried about her and because I'm the other end of the country I can only judge by the way mum sounds (I have been going up to mum every second week for the last six weeks but I never seem to be there when things go wrong). Mum sounds really bad today and I no longer trust what I'm being told. I can never speak to a doctor and it was five days before anyone told me about the bug and the pneumonia. She's still delusional and confused but now she's got this to contend with as well. She was healthier before she went into hospital and I'm really scared now and I've done this to her. I don't know what to do and I have been feeling v suicidal today. I went out to talik to friends earlier on in an effort to lift my spirits and although they are v. sympathetic no-one has experience of what I'm going through.

I wish I'd just left her at home.

ellie
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Dear Ellie

You and your mum both sound like you're having a rough time of it. None of us have a crystal ball, and certainly pheumonia etc is not to be taken lightly. However, if you like, I could give you an exhaustive list of what could have gone wrong if she'd stayed at home, although I doubt that would improve your mood. Sadly, the ideal situation is one we can't attain: our loved ones shouldn't be ill. But they are, so we have to do the best for them that we can. You have/are doing the best you can for your mother. I understand that the news isn't great at the moment, but please try not to feel guilty: you couldn't have left her in the situation that she was in, because then she wouldn't have been safe. Look at it this way - if you hadn't done this and something had happened you would feel incredibly guilty because you hadn't taken steps to keep her safe, and some might say that you would have had some measure of responsibility for that. This way you feel guilty for something you are not responsible for: her getting sick. They wouldn't have sectioned her on your say-so, only if they felt she was a real danger to herself or others. This was not really your choice: it seems like it because you put it into play, but it could just as easily have happened because she had been found in the street.

Best wishes

Jennifer
 

ellie 123

Registered User
May 25, 2006
91
0
Thanks Jennifer and my rational side does know these things, is just seems to be my irrational side seems to be more in control these days. Even my mood fluctuates depending on how my mother is - if everything's ok, I'm ok but then like now - well everything falls apart. My biggest fear is that she dies in hospital as a result of the bug/pnuemonia as opposed to the AZ.

ellie
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
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Kent
Dear ellie

You have no cause to feel guilty and deep down you know that. Nor are you responsible for your mum once she`s been admitted to hospital.

If , because of her weakened state, she deteriorates, for whatever reason, it`s not your fault. Nor could you have had a crystal ball to show you what would happen.

I sincerely hope your mum will be Ok. Please stop beating yourself up. There`s only so much you can do.

Take care.

Love xx
 

jenniferpa

Registered User
Jun 27, 2006
39,442
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I hestitate to mention this, because I don't want to worry you more, but the fact of the matter is many people DON"T die of AD, or at least not directly. Unfortunately, the illness affects all sorts of different body systems and I think it would be fair to say that many people die of opportunistic infections. I'm telling you this not to scare you in the current situation, but to make you aware that it may not be entirely reasonable to expect your mother to die of AD. I understand that doesn't make it any easier, particularly as she is ill at the moment, and it's also fair to say that people can make remarkable recoveries from these infections. Even if she didn't have AD, respiratory infections are not uncommon causes of death in the very aged in all living situations.

I well understand the rational/irrational responses, and I also understand that since irrational fears are, well, irrational, there's not a lot you can do to push them back. If they could respond to logic, we wouldn't have them.

Take care
Jennifer
 

ellie 123

Registered User
May 25, 2006
91
0
Thank you Sylvia and Jennifer.

I appreciate your comments and taking the time out to respond as I know we are all in the same boat.

I have been taking the time out this evening to read some of the other threads as, selfishly, is does make me feel better. Especially Maggie's, at times they are hard to follow but at all times they bring a smile to my face. I'm currently reading about her english/cockney accent and spanish thoughts - and I've been in hysterics. She always helps make me feel better.

Sometimes, well a lot of the time actually, I wish I could give something back to you all.

love ellie
 

Nell

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Aug 9, 2005
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So many wonderful people on this forum - Sylvia, Hazel, Jennifer, Maggie - just to name a few!! And SO MANY other people with words of wisdom, great empathy, knowledge and a never-ending source of comfort and support.

Ellie, Jennifer and Sylvia are so right. I think we all know rationally that certain things make sense, but getting ourselves to accept them at an emotional level can be altogether another matter.

No doubt the distance between you and your Mum adds to your challenge and to your stress levels.

Can I just say that, if your Mum does die as a result of the pneumonia, it may release her from more years of the torment of AD?? Not much comfort for you, I know, but Jennifer's right when she say the AD may not actually cause her death. Even if it does, I don't think they can always be sure. . . . . my Grannie died at 97 after having AD (and other health issues) for a number of years, and her death certificate states "Cause unknown"!!!

I'm sending you heaps of caring wishes - and please, look after yourself. You sound so down, and this is such a hard time for you. Remember that many people care a lot about you, not least your fellow TPers.
 

ellie 123

Registered User
May 25, 2006
91
0
Thanks everyone for all your usual support, it really helps.

Mum doesn't seem to be improving and I don't know which worries me more the pneumonia or the stomach bug which they do not seem to be able to treat with any success. They are barrier treating her and it is making it difficult to speak to her on the phone as some of the staff do not want to have to sterilise the phone after she's used it.

Actually I'm so concerned, I've involved the PAL association. I honestly think that if the professionals made more effort to communicate with me and be more transparent I wouldn't be so worried. But because of my experience so far, my worries are around what they are not telling me or keeping me in the picture about.

Can't wait to get back up there again this weekend.

love ellie
 

ellie 123

Registered User
May 25, 2006
91
0
Just read your response and my heart is screaming - yes, yes, I know exactly what you mean - even about the wine.

I'm not the same person because of previous life events and so I figure that is why I am not coping so well with mum's situ. Don't get me wrong, I'm actually surprising myself with how well I am doing, but unfortunately it's at the expense of other things happening in my own life. I just don't have the ability to do both and anyday I expect the whole thing to come tumbling down around my ears.

Somedays I feel so alone and helpless I feel like running up and down the street screaming HEEEEEEELLLLLLLPPPPP.

But we carry on don't we. I am so glad that my outpourings have helped you in some way. I must admit I've constantly looked for someway to give back since I started posting here as I always seem to be the one asking for the help.

By the way, Margarita, I've mentioned you on another thread somewhere - how your postings always cheer me up, I love reading them.

I just wish we all lived closer together so that we could give one another more hands on support, or is that just too pie in the sky. I know I'm not too realistic at the best of times and can live in cuckoo land!

lots of love
ellie