Just needing support . . .

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
I often feel guilty about this forum where so many people are doing it so much tougher than I am, and yet I still have days like today where I feel really down.

Mum and Dad are together in a Hostel specifically for Alzheimers patients - Dad does not have an AD diagnosis but is disabled and Mum (who has AD) was his full time carer, so now they are both in the hostel. That is one of the good things- that they are together. It is also good that it is a brand new, state of the art hostel and the carers are generally very good. I have support from my wonderful husband and my two sisters, so you can see why I feel guilty about being down - most of the TP people have a much tougher job than I do.

Mum is currently in a "good" phase, and oddly enough, these make me feel the worst. I think it is because I start to doubt the diagnosis, yet intellectually I know it is correct. Mum has always been a mad keen Scrabble player and still plays an extraordinarily good game - beat me three times yesterday. She came up with one 7 letter word, and also used the word "jocund"!!! How can she do that and yet have AD, I ask myself???

She can no longer score Scrabble - problems with addition and sometimes misunderstands the coloured squares (double word, triple letter, etc.), but yesterday she was completely "on the ball".

Yesterday she and I did their accounts together - I have POA and we "do the accounts" together to help her feel nothing has changed - usually I do everything and she just watches, but yesterday she insisted on writing the cheques, addressing the envelopes, etc. - and she didn't make any mistakes!!!!

I know that she cannot "recover" from this illness. Do other peope have experience of sudden improvements like this? It feels "surreal" that she seems to be (almost) back to her old self. . . ??!!!

My real guilt stems (I think) from wondering how long this (caring) will all go on for (and knowing no-one can possibly say) and wondering if I'll be able to keep going. When I see what others face, I feel as if I should be grateful for how fortunate I am (and I AM grateful!), but I still feel down and in need of support today.

Thanks in advance!
Nell
 

Helena

Registered User
May 24, 2006
715
Strange that you should say your Mother has good phases and that basically its problems with figures/acounts etc that you notice most

My Mother never played scrabble but she sure could do fantastic mental arithmetic yet now she cant understand the items on a till reciept and refuses to pay bills but will happily write cheques to cover dividend cheques and post them god knows where

She is argumentative, abusive,thoroughly confused most of the time with long silences and using incorrect words yet she can argue the hind leg off a donkey and can direct me to bank or the supermarket but sees imaginary cats etc

No one else here can figure out how she does this and we do not yet have a formal diagnosis of what form her dementia is
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Nell,

I'm another one who knows she doesn't have it as tough as most people here, but also finds it difficult to cope sometimes. I don't even live in the same country as my Mother, and although that means I struggle because I can't do the hands on thing at a distance, it means I can't do the hands on thing. It's a lowering reflection to realise that I don't have the mental fortitude to do this day in and day out - if I had to live with her I really think I would go off the rails. It's the inconsistency that gets to me - sometimes she seems fine, absolutely on the ball, and then she's back to being a bit like an unteachable toddler.

Intellectually, I know I've done the best for her that I possibly can - extra care housing, great carers, I visit for a couple of weeks every three months, phone her most days, but the one thing that she wants me to do is be there all the time, and I can't do that. Although her dementia is due to strokes, not Alzheimer's, there is an element, and this is going to sound dreadful, of counting the days. I worry about everything I can't do anything about - will she have another stroke and survive to struggle on for another few years, will she have another stroke and not survive? Would she be better off actually in a nursing home facility so that she had more company? Would she be worse off because she's always been a private person?

Anyway, I really feel for you, although I don't know what to say to make it seem better.

Jennifer

PS My Mother plays a mean game of scrabble still too!
 

daughter

Registered User
Mar 16, 2005
824
Hi Nell,

I also feel the guilt you speak of in regard to not having it as tough as some on this forum and yet still wanting to have a moan sometimes. :( I've never actually cared for my Dad (that's sounded bad, but I hope you know what I meant - in the practical day-to-day tasks), just had to watch my Mum go though the pain of losing her husband to this disease and trying to cope with all the aggressiveness, wandering etc.

Then Dad went into his home. We spent quite a good summer last year (all things considered), taking Dad out walking, making him laugh occasionally, having a few giggles ourselves at some of the strange things Dad would say, playing table tennis and catch (he still had quick reflexes).

This year its not so good but I will never forget that summer - it was almost like any good moments were brought sharply into focus while I struggled to realise there might not be too many of them soon - but how long? As you say, know no one can possibly say.

It still happens sometimes. Just when I think Dad has completely given up, he'll read some words very clearly off of a magazine, or he'll give me a typical Dad look or he'll pass a football to me in the garden using one of his old football skills of crossing his right leg behind his left (sorry I can't describe that very well!)

So, yes, very "surreal" moments that, if Mum wasn't there with me to witness, I may well think I had imagined! Still, I believe that TP is here for everyone who cares, at whatever stage, so keep on posting! {{hugs}}
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Nell,
I have read that with AD, these more lucid moments are common, as though some transmitter system temporarily clears. How long will this caring go on? The million dollar question!! It takes as long as it takes.
I know what you mean about feeling guilty - why should we get down when we are not involved in practical day to day stuff? Mind you, there were days before mum went into the NH when I wished that I could be with her full time, so as not to have to do the juggling act of work, kids, husband and parents - from our point of view, fulltime carers at least know that they are doing all that they can. (Though I am sure that they would say that they too feel guilty that they could do more, or do better) I now try to see mum once or twice a week, and separately spend some time with dad, and feel guilty if I don't get to see mum, and feel even more guilty that sometimes I think "well she doesn't know me, she won't miss me"
All we can do is our best. We have every right to feel down as whether we care fulltime or not the person that we love and have shared our lives with is ill. That illness puts different strains and pressures on all of us - the immediacy of daily caring, the feeling of impotence because we don't live close enough to do anything; the pain of the realisation that we want it to be over, so that we can get on with our lives without the worry and hurt.
So Nell, you are not on your own. You have as much right to feel down as anyone else on here, as much right to TP as anyone else. So keep posting, and hope you feel a little better soon - and enoy those more lucid times with your mum.
Love,
Helen.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Hiya, Nell. I do feel my current situation is a 'doddle' compared to others. I have even found positives in my personal situation - that's mostly thanks to the people here who are brave enough to share their experiences amidst the angst they are going through - and so I try to hold on to what positives I can, while I can.....

Doesn't mean I don't get terrified at what the future might hold, how/if I will cope (when I can't always cope now)...

Came away from my mum today feeling totally incapable of either coping myself let alone supporting her.... she is tearful, showing signs of sinking into depression, worrying about her memory and inabilities but 'lucid' enough to know that she is..... I find the days she appears 'blissfully unaware' of her own situation and what the future may hold far easier to deal with.... not sure that makes sense.....

We all here may have very different circumstances to deal with, and different ways of coping, or different triggers for not coping..... yet I feel we are all on the same path ..... I hope I can be brave enough to still be around here for those starting out on the journey when I have travelled further....

I don't know where I'd be now without the help and advice of 'other travellers',

For now, a hug,

Love, Karen (TF)
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I feel there a no win situation in if you care for a love one at home or if there in a care home the guilt feeling are just the same.

When I read Helena posts that was me and mum how we was before getting diagnosed 4 years ago, arguing and at logger head mum finances in a mess, me working full time dad just died .

Then what nell said
I think it is because I start to doubt the diagnosis
when mum was diagnosed with AD. There was days that mum seem back to her old self I thought doctors must of got it wrong or I got it wrong it’s a horrible feeling and all thought go running around in my mind ,took a long time to really believe it when mum had good days .

Even now 4 years on its crappy really mum come back & its like we our having a normal conversation & I tell her things I think she understand try to share it with mum but then she gets all work up ,worried then forgets all that I tell her.
 
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mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
Hiya Nell
no matter if we care for our loved ones at home or whether they are being cared for in a home all of us on TP have one thing in common....we have all had our lives changed by this awful disease....so we all have a right to feel down, to want to scream, to want to cry... No matter what our circumstances the disease won't allow us to carry on our lives as we did before....it's with us from morning til night.....
Love
Wendy
x
 

DickG

Registered User
Feb 26, 2006
558
84
Stow-on-the-Wold
Come on all of you! What's this about degrees of difficulty? Difficulty is like pain - it exists, but how can you compare one persons pain to anothers? Carers have it tough, don't apologise - nuff said.

Dick
 

moviefan318

Registered User
Apr 30, 2006
32
64
northamptonshire
hi all
Have'nt posted for a while, but have been reading all your post, and this one hit a nerve, since mum went into a nh which has turned out to be a really lovely place, I feel sort of out of a job, although I visit every other day.
mum lately has looked at me as if I am a stranger and I tell her I'm your daughter carol and she just repeats what I say without I think understanding, I aways thought that with mum in a nh life would be easier and lease stressful and it is but now the worry of her care and wellbeing are sorted I have more time to think about what mum used to be and what she would say about how she now is,and I fully thought I could deal with her not knowing me,yet it broke my heart when she did'nt .so Mel you are so right this desease does change all our lives whether in a care home or at home, some times I wish I could be inside mum's head for a day to experience what that world she is in is like, to better understand how she feels sorry for going on carol
 

Kayla

Registered User
May 14, 2006
621
Kent
No recogition?

Dear Carol,
One day I visited Mum in her NH and she didn't know who I was. Then she said, "How could I possibly have a daughter?" The problem was that she had gone back in time to being a young girl at home. In her own mind, she was only a teenager and not old enough to have children. I felt devastated when I drove home, but the next time I visited her, she seemed to be in a more recent time zone and knew exactly who I was!
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Thanks to each and everyone of you for your posts. I've felt pretty down the last few days but your posts have really brightened me up. It does sound selfish to say that it makes it better to know others have gone through something similar - when you know the "something similar" feels so bad, it sounds like I'm glad others have had it bad!!! But I hope you all know that isn't what I mean! It is the comfort of not being alone - and still wishing NONE of us need ever go through any of this!
Thanks everyone.
Nell
 

rummy

Registered User
Jul 15, 2005
700
Oklahoma,USA
Dick said it best,

Come on all of you! What's this about degrees of difficulty? Difficulty is like pain - it exists, but how can you compare one persons pain to anothers? Carers have it tough, don't apologise - nuff said.
There are no barometers on TP, just all of us in the same boat......one deck or the other!

Debbie
 

martin77

Registered User
Jun 29, 2006
9
Helena said:
...........we do not yet have a formal diagnosis of what form her dementia is
join the club, it makes things very difficult, you don't how much of the behaviour is down to what exactly. My mother in law (whom I live with) can be fine sometimes, then just when you think it's all alright she get's confused, aggitated and one thing leads to another and it's a nightmare again.....for her and us. Her memory problem and confusion makes her very distruting of everyone around her....including her daughter and me (especially has we live in her territiry). Must be awful for her but it''s tough to be around as well.....without knowing what's what with the mental health I don't know how to deal with it properly etc.....can't help get annoyed at certain behaviour as it has a massive impact on our lives as well......"hardening of the brain arteries" is the most I know about it.

Think most people on this board get down about things (not nice seeing loved ones suffering and also the stress of living with it or caring). The impact of my MIL's health has had a such a big effect on all our lives, day to day and in the long term that I can't help getting down about it.

Take care.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,662
Kent
Just needing support

Hi Nell

I`ve only just read your post and identified with it immediately.
My husband asks me over and over again, the same questions, what/where/why/
how/who , he forgets what I`ve said a minute after I said it. That`s our life for most of the time.
Sometimes, he has flashes of insight, and sometimes he goes through a really good spell, and then we both become excited and begin to hope that the medication is working or he`s come to a plateau.
His strength has always been with numbers and he never has trouble with money or change or shopping. He even remembers his pin number.
Sadly I no longer allow myself to get my hopes up when he surprises me as I know now it won`t last.
Some friends visited, who hadn`t seen him since last year. They had heard how he had deteriorated, but as they came during a `good `weekend couldn`t believe how well he seemed. If they had seen him the following day, they wouldn`t have believed it was the same person.
Make the most of the good times.
Take care Grannie G