suffering

Sheila

Registered User
Oct 23, 2003
2,259
0
West Sussex
Night night Magic, God bless,sleep tight, don't let the bed bugs bite! Hang on in there girl, your a Bxxxxy Saint!! Love, She. XX
 
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Chesca

Guest
Dear Magic

Emotional blackmail is very effective because You are prepared to pay the ransom. Your blackmailers know it, that is why it works every time, and why 'the skanks have the luxury of not even seeing the hell of what's going on daily' And, yes, it is despicable. You are making it very easy for them.

Don't be too hard on the professionals telling you they 'don't know how you do it'. There is a hiddden meaning in what they are trying to say and that is: when you've had enough give us a call. Because as we see it, you so far are not prepared to accept it.
Part of you hates them because you know they are telling a truth you don't want to hear. Consider this: if your lovely Mum was physically ill ONLY, wouldn't she be in a hospital - anything other would be criminal?

Only when I had completely folded (and it was a very frightening place to be) was the whole business taken out of mine and Dad's hands. I still rail at it, still have guilt, anger, tears and am a 5 star pain in the wossname because it is ever-present, but I have to admit (when now somebody puts me on a rack and stretches me beyond endurance with the threat of boiling oil) that, yes, it is less of a worry and stress and there is life after some kind of a death.

I try to make sure that I back up mum's care in conjunction with the nursing home: if anything untoward happens to Mum there will be questions to be answered. Most of the staff absolutely hate me, I don't blame them, but I've heard the odd one or two say well, what would you do if it was your mum? They are the ones I cling to. And don't forget, it's not a prison and you can take her out for a day, weekend, wherever if you want to.

Dad does the same but he plays Mr Fluffy in the home and they all love him, and that's as it should be. She's ten minutes down the road and I can, and do, see her when it suits me. On the way to the shops, for five minutes, or for an hour or so with a picnic of treats I know she loves. I kid myself I'm seeing her in own home and call in as I would do anyway. That's my way of coping.

And you know, really, most of the time it's not as bad as you think. You can't fulfill what I refer to as a 'deathbed promise' when you don't even know anthing about what you're promising. Sometimes you have to listen to those professionals saying 'don't know how you've coped this long' they said it to me and my reply was because of love. But you have to have some time for love yourself.

I think you and your Dad have some serious decisions to make without the emotion: and that's the hardest call of all. But I mean it when I say if it goes on much longer you may find the whole kit and caboodle of decision making taken out of your hands. And for the disapproving relatives? It's not really for them to judge unless they are part of the machinery that makes it tick over every day. At the end of the day you are the one who can face the world, your god, your judges, whatever is your wont, and say: Yes, I did the best I could and I did it with a great heart, love and compassion.

Lotsa, and you know I'm here
Chesca
 
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Mjaqmac

Registered User
Mar 13, 2004
939
0
Thank you Chesca. Thanks She, Jude and Norman. Everyone's walking a hard road here. At least we now have someone to talk to. I couldn't really have coped without this forum, I was close to ringing the Samaritans a few times because no one wanted to listen to how I felt or what we were going through, and I was so desperate just for someone to hear me. I was so incredibly lonely even with family, friends and fiance there. They have their own crosses to bear. Getting some support here helps beyond words.
 

storm

Registered User
Aug 10, 2004
269
0
notts
Dear magic, I really dont know what to say to you,i want to ask you to think about your mum as well has yourself but i dont want to upset you.Do you think it might be better for her to go were she can recieve the enormous amount of nursing care she needs from people who change shifts ever 8hrs so they are not constantly worn out and are not so emotionaly involded? I am sure she knows you have done everthing possible for her and if others were doing the hard part of the nursing you would have the strengh and time to spend with your mum just sitting talking and loving her enjoying the precious moments with her.She wouldnt have to watch you wearing yourself out doing 24hr care because im sure they do realise what it is doing to us sometimes. thinking of you storm
 
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Chesca

Guest
Dear Magic

I've been doing some thinking about you and what you said yesterday, about 2 weeks on/off respite, which sounds like a whole lot of upheaval anyway.

If there is funding for such a level of respite why don't you go back to the drawing board and consider the possibility of inhouse, round the clock, respite for two days each week, maybe at weekends - for someone to come in to look after your mum around the clock. That way you get to go and stay with Rhett or whoever or do whatever you please............. like a little bit of rebuilding your life? This may also be helpful to your Dad if he can see that you have some light in your life. Nobody can truly believe you don't deserve a little happiness, surely to god.

Just a thought.

Lots of love
Chesca
 

Mjaqmac

Registered User
Mar 13, 2004
939
0
Thanks Storm. It's a big decision, but I can see it's one that is going to have to be thought about soon. Have decided to try to get some respite again but this time it will have to be a nursing home. Maybe if we like it we could build up to putting mum in. It's an option I suppose. But it's one that's still off on the horizon.
 

Mjaqmac

Registered User
Mar 13, 2004
939
0
Chesca, Have just replied to Storm. Would rather have time in my own house alone, and am not dying to go away with Rhett as the panic attacks make coming out of a safe environment no joy for me.

Dad clings to me as though I know and can solve all problems, as much as he loves me, my "happiness" doesn't really come into it. He's too devastated thinking about mum. It's not that he doesn't care.

I think the best short term solution is respite in a nursing home to give us all space to breathe and make decisions etc. It's all I can come up with at present that isn't too much of a wrench. Feeling very delicate emotionally at the moment. We all go through this I suppose. But thank you all for your concerned words, thoughts and friendship. You all should be available on prescription worldwide!

Have also arranged to get my sitter service upped to another day, so that's 12 hours per week now. This is the only help I get with mum and I would go insane without it.
 
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Chesca

Guest
Dear Magic

For what it's worth, I think you've made a brilliant decision. Time on your own in your own home has to be the best, I know, if you are to have time to collect your thoughts. Slowly, slowly......
Sorry, if I'm adding to the info overload!
Lots of love
Chesca
 

Mjaqmac

Registered User
Mar 13, 2004
939
0
You're not adding Chess, I appreciate it.

I seem to be the type whom likes peace and quiet and a good book these days as I get so little time to myself. My party days are well and truly over.
God forbid! Would hate to be doing all that again! Time and a place etc.
 

storm

Registered User
Aug 10, 2004
269
0
notts
Dear Magic, I am sure you are doing the right thing ,try and get mum in nursing home for respite ASAP, i know exactly what you mean about being at home people keep trying to get me out of the house but thats just the point i want to be in MY home and i know it sounds awful but i want my home just for myself for a little while. When you are alone and rested you can make some plans for the future that will benifit all of you.chin up chuck luv storm
 

Sheila

Registered User
Oct 23, 2003
2,259
0
West Sussex
Hi, just caught up with the postings. You are right Magic, respite to give yourself time to think clearly, that's what is needed. It's natural your Dad should be distraught at what is happening to his beloved wife, also unfortunately, that he is not seeing how you are struggling to cope. I get the feeling you put on a brave face, (I kept mine in a jar like Eleanor Rigby and it fooled everyone) so they all come to you for the answers don't they. Trouble is, your hanging on by your fingernails yourself. Get on to whoever and get that respite sorted, when you are rested enough, make a plan for the future, either as Ches says respite at home, or else regular respites in a nursing home. That's how we did it, duel registered EMI unit, every 4-6 weeks and it got us through. Hope today has been a bit better, love, She. XX
 

Mjaqmac

Registered User
Mar 13, 2004
939
0
She, feeling a bit better now that I've faced up to needing another break. It sounds awful when mum's only been home 2 weeks! But it really is intensive care, and unfortunatley I'm not a robot. Though my family think I am! My fault in some way I'm sure for coping and saying it's ok. It's either that or a full scale row and I hate confrontation.

Dad and I will be fine, I'm sure. Some days are just harder than others and when that terrible all consuming exhaustion kicks in, it really messes with your head and your emotions. Will get a 4 hour break on Wed when sitter comes, will take dad out for lunch then.

You must have been through hell with your mum. It's brilliant that you were able to strike a balance with respite and keep her at home. That's quite an acheivement, hope you know that.
 
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Chesca

Guest
Dear Robonurse

I've a shed load of oil for your joints should they malfunction! Yours for the price of a pint of Guiness.

Wonderful that you are sounding brighter. (I've also some metal polish for the dull bits that I could include in the transaction - fine when mixed with a drop of lemonade)

With love
Chesca
 

Mjaqmac

Registered User
Mar 13, 2004
939
0
I usually just dunk myself in a vat of coke, come up like a new penny I do!
Obviously I mean the liquid kind, couldn't afford the other!
 
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Jude

Registered User
Dec 11, 2003
2,287
0
70
Tully, Qld, Australia
Dear All,

Sorry to have missed out on all these posts. Hope things are looking clearer and brighter now Magic. The robot routine will only work until you collapse in a big heap.

Doesn't matter how long respite has been, I expect everyone has has trouble re-entering the 'twilight zone' again and sometimes it's just too hard to handle. Respite probably makes one aware of just how much work you've been doing and how much it was taking out of you.

Time for Plan B......

Jude
 

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