Confession of a carer

[Mjaqmac]

For all the great praise I get from the loving family whom are never around, and the pats on the back and wonderful words from neighbours and strangers about what a sainted and worthwhile human being I apparantly am. Most mornings I wake and think, Dear God I can't face another day. I don't even want to. So much for the self help books and the fake smiles. Everyday my heart weeps buckets, sometimes I just want to run as far and as fast as I can. So there, that's the real me! I'm tired and irritated and sick of dementia world and I want out. God forgive me. I confess.
Not such a great girl after all.

 

[thompsonsom]

I know exactly how you are feeling as will everyone who logs into this forum. I think people patting you on the back and saying how good you are make it worse as then when you feel like packing it all inthe guilt stops you.
But at the end of the day we all know that there will come a time when we can't cope any longer and then we will just have to remind ourselves that we did the best we could and for as long as we could but we are no help to anyone if we go under with the stress and certainly not to our loved ones with dementia. When we can't cope we need to ensure we have enough strength to check the follow up care plan.

 

[Kriss]

Dear Magic (thats stuck now hasn't it!)

you've hit that delicate nerve for me - I've been on a downer today as well, nearly signed off my earlier post with "beam me up Scottie - I want off of this planet!".

Its very nice when somewhen tells you how lucky Aunt/Mum/etc are to have you and how you've "done so much" but it never feels enough does it? I guess we'd like it to be perfect and painless for them but it can never be. I've never been one for wanting to know what the future holds but in this set of circumstances I wouldn't say no to a glimpse of what, when and how things may go even if its for the worse I think it settle my mind if I could just accept where we are at now and drop the "what ifs".

Onward and downward?

Kriss

 

[Brucie]

True Confessions

Hi Magic,

I have been there.

I live there.

But it does get a bit better when there is some sort of cavalry appearing. For me that was the home [though I didn't welcome it at the time, nor for at least 6 months after Jan was admitted].

For the last year or so when I was caring for Jan at home, I did go to sleep each night not wanting to think about waking in the morning.

Now I just despair for her whenever I think about her, or am with her.

 

[Jude]

Dear Magic,

It's wonderful being a saint, isn't it? Apart from the rare snipe from the rellies, I derive huge satisfaction from being such an exemplary human being.... NOT.

Most mornings I wake up and think I'd rather be in Bali. In fact, I'd rather be ANYWHERE in the whole world than where I am just now, so long as it was warmer and I didn't have to go through this mindless routine every day.

So yes, 'beam me up Scotty'. The only problem with this is that somehow I've decided deep down to look after the oldies to the 'bitter end' - and it will be bitterly sad too, I feel.

So Magic - don't think you are alone in feeling like a fraud, which is how I feel quite often. It's the 'Tears of a Clown' syndrome!

Jude xxx

 

[karen_white]

Hi Magic
I did want to email you directly after seeing another post from you about spiritual comfort.
Many people may not agree with these words, but I hope you find some comfort in them.

I find God and the Bible an immense comfort through all what I go through with my Dad.

Romans 15:4 I find it comforting to know that the bible is beneficial now and we can find comfort there.

I can't wait for Dad to be back to his old self, even if I do loose him in death: Acts 24:15 - There will be a time (as promised in the bible) when I will see my dad fit and healthy again - not in heaven, but on earth.

I hope these thoughts find you well.

Karenxx

 

[Mjaqmac]

Thanks Karen

Thanks Karen, will look up the verses you quote.
Need something to lean on at the moment.

 

[Mjaqmac]

Thanks Guys

Thanks for all the supportive messages. Yesterday was such hard going with mum. I think it was the longest day of my life. My arthritis was playing up something shocking and I just so desperately wanted to lie down, but with mum it's relentless. She won't be in a room alone and if I leave a room and leave her with dad I'm hunted down, though she doesn't even know I'm her daughter! My stomach is in nerves all the time about trying to get back in before she starts the repetition with him of where, "the wee girl" has gone. I'm trying to save him from all the hassle but I can't win. Then my brother phoned and said his mother in law was in hospital and this was all he needed with all the problems with his own mother. I had to laugh, he never comes near here. Dearie me the poor wee soul. It must be very stressful for him having a sister nursing his mother 24 hours a day. My bloody heart bleeds.
Sorry folks, these relatives can really do your head in. I think it's actually better when they just don't bother at all.
I know I'm moaning here, but no one else listens and I just need to get it off my chest. I feel imprisoned and utterly utterly browned off.
Will probably delete this later!!

 

[karen_white]

You need to let off steam. It must be hard for you when you don't get the support you need from your siblings.
You can always send a private message to any of us if you need to.
Karen

 

[Jude]

Dear Magic,

Another great song for you - Bill Whithers - 'Lean on Me' Goes something like,

Just call on me, brother, when you need a friend
We all need somebody to lean on.
I might just have a problem that you'll understand,
We all need somebody to lean on.

So, if you're not strong, feeling down
and can't carry on.
I'll pick up your load, I'll be your friend
I'll help you carry on.

HANG IN THERE!

Jude xxx

 

[Mjaqmac]

With a little help from my friends

Thanks again. You guys are terrific!
Ok, changing from film titles to song titles now. Let's see how many we can fit in on our regular moans, encouragements, poems and carer confessions.
I think the theme song for this particular little bunch we have on this site could be, "This is the self preservation society" from The Italian Job movie.
Any other suggestions?

 

[snuffyuk]

Thank goodness someone has started a thread where we can express real feelings.
My mum has been a member of the local village church for many many years. The only visits she gets these days are her old cronies but none from the church. The vicar does come, by request to give her communion once a month.
When mum does eventually "pop her clogs" ( bless her) the church will be full of rather hypocritical ones who offer awfull words such as
"mercifull release" "so sad" "the best thing" etc etc
I will not be there as that is the very last thing that I could cope with. My goodbyes will be whenever she goes. between her and me and NO ONE else is there as they do not understand what this caring involves!!!!!
Thanks to all

snuffyuik

 

[Norman]

Snuff & Magic
I agree with all that has been said,I get the "How's your wife"
I answer "still the same" "Thats good they say".I don't know what's bloody good about AD.
They don't even listen,they don't want to know.
I know they are not really interested and I cannot be bothered talking to them.
With all the praise I get for being such a good guy it's a wonder that I don't have birds sitting on my head and be called St Norman.
I recall the statement made to me about a lady who's husband had AD,"avoid her,all she wants to talk about is her Husbands condition".There is a moral there somewhere?
Thats the end of my gripe for the day carry on
Day To Day
Norman

 

[Mjaqmac]

Motormouth

Norman you're so right. People feel they have to ask but they don't really want to listen. I can't really blame them. I find now that dementia, mum and my unhelpful family is my only source of conversation with everyone. I am "dementia woman" I feel I could go on Mastermind and take it as my specialist subject, as I'm sure the rest of you all do.
One thing that's really starting to bother me is the way I seem to share every intimate detail of myself with complete strangers. Is anyone else doing this since their loved one's illness started? Anyone coming in to our house is getting chapter and verse of my life, mother's life, the family and the illness. It's as though, if I tell people, I'm hoping someone will eventually say, I knew someone like you/your mum/with this illness, here's what they did and it all went away. Suddenly I've gone from being very shy to having no privacy whatsoever and telling my life to anyone who'll listen.
Are there any amateur psychologists out there can explain why I am now Motormouth? Is anyone else doing this? I feel so invaded afterwards and sorry I've confided in people.
I've just done it again. DOH!

 

[Brucie]

One Trick Pony

Hi Magic

I imagine we all do it.

The role of carer becomes so all-encompassing that there isn't much of an option - the rest of life gets closed out. Nothing else seems that important.

I do think it helps the carer - as long as the other person is receptive, and one needs to check for that. Also check that one is not repeating the same thing to the same poor individual constantly.

I have a relative with ME and each time we talk I simply hold the phone from my ear for long periods because I want to stop myself reciting along with her. I could produce a record album "Singalonga ME".

It also helps the other person, I believe, to understand just a little.

Firstly because the way things are going - they may need the knowledge at some stage, themselves.

Secondly, because if they are real friends, they will care.

I have changed completely since Jan has been ill. I'm far more open now. I think the change has been for the better.

Last point - I think the talking about the dementia and the caring role is a kind of flushing out of the pain. The awkward thing is that it takes a hell of a lot of flushing. It is the Forth Bridge of flushing - just as you think you have finished, you start over again.

 

[Mjaqmac]

Holding out for a hero

Braveheart, where would I be without you?

Flushing out of the pain is a brilliant description of what I'm doing. I didn't realise.

Have you ever thought of becoming a psychologist? I hear the pay is very good!

Love and thanks,
Woody Allen

 

[karen_white]

It's so nice to be able to open up in this forum and you don't get the token responses like many of you have recited.
I'm so glad I found this place to express my feelings and learn about others.
I only wish I had it when Dad was still at home. We could have done so much more for him.
We all did our best, but there are so many great ideas tucked away in this forum, it would have made things maybe a little easier.

 

[Jude]

Dear All,

Well, since we're all up for sainthoods, then I'll claim St Jude - Patron Saint of Hopeless Causes. She, by the way is a real bona fide Saint and that was her real title. How apt...!! Does anyone know anything else about this woman? I've often seen ads in the paper dedicated to St Jude, entitled 'Thanks to St Jude, my prayers have been answered', etc.

Yes, I do rave on and on about the oldies AD. Well, let's be frank about this, there isn't a hell of a lot going on day to day apart from that, is there? It's time consuming and mind consuming.

People always start conversations with 'Hi Jude, how are your parents?' Answer, 'Well, they are just fine' - apart from the fact that they can't find the loo; say the same thing over and over again 116 times per hour; get upset if they eat at 12.01 instead of 12.00 prompt; rearrange their sock drawers every afternoon; and wear the carpet out every evening by marching up and down the hall'. Apart from that, well, everything's just normal really!

I mean, WHAT DO YOU SAY - 'Yes they're really well, today - they managed to find the toilet ALL BY THEMSELVES...! No wonder peoples' eyes glaze over......

Next question is - 'When are you going back to Bali?' Answer, 'Well, I hope to be able to go over again in November'. This translates as, 'As soon as bloody possible, to get out of this nightmare'. These conversations make me feel so guilty. I just want to run away sometimes.

Now I've got another topic of conversation, which is the Inca Trail Trek. 'Oh really, why are you doing this?' This is much more satisfying, because I can hit people from another angle about AD and the need for funding. It makes a change. What they don't understand is how I could possibly imagine that slogging my way up a vertical Peruvian mountain for 40 hours, could possibly be easier than looking after the oldies for a fortnight'. The same level of effort is involved....

Looks like I'm in a snakey mood this morning...!!!

Jude xxx

 

[karen_white]

I love your posts Jude - that one made me laugh out load.
People at work wondered what was wrong with me!!!

 

[Jude]

Dear Karen,

It's the AD BLUES, baby........ but I'm so glad I made you laugh!

Jude