Be Careful what you wish for

Mjaqmac

Registered User
Mar 13, 2004
939
Am getting the much fought for and longed for respite tomorrow, of course it's with the conditions attached that I have to go twice a day for the oxygen and if she's "unsettled" I must take her home immediately. Let's face it mum is unsettled in her own house so I don't hold out much hope for this respite, I haven't even packed for her yet. I don't have a time limit as she's being brought down on a 'see how it goes basis' so basically I can't make any arrangements to do much, whilst waiting to see if she's getting thrown out.
Surely this can't be right? I feel terribly let down by my family and the social services. I have finally got the respite so why have I spent the past 2 hours crying? My fiance has been great but I think maybe this is all wearing a little thin now. It's his 40th this week and I haven't even mentioned it. I feel such a failure for not handling the whole mum thing well and not being a fascinating and exciting fiancee. He hasn't said this but I feel it.
I am using this forum as a councillor. I just need to vent this tonight, it's doesn't matter if anyone reads it, I can get it out here. I feel so incredibly lonely. You see, everyone is shouting about me needing more help etc, but what is really killing me is watching my mum deteriotate. I dread the mornings as her lung disease is getting worse and washing and dressing her is a nightmare. She looks like she's having a heart attack and everyday I have to gadge if I should get an ambulance or not, then she can miraculously come round and appear normal again. I ring doctors and tell the family and when they see her she's great. I'm starting to feel like they think I'm making it up. My father has seen it.
People seem to think that because I look after her that the dementia and the other illnesses don't effect me, that I can deal with it. If anything, because we have been so close and spend every waking hour together it is tearing me apart. All the respite and help in the world can't take away this terrible grief in my heart. It's like someone has ripped away a piece of my soul, and losing my faith hasn't helped. I feel cast adrift in a sea of terrible despair.
I know there are lots of you suffering like this and much worse. I feel for you all in your terrible pain as I am beginning to struggle with it everyday myself.
I just want to feel I can talk, I'm so desperate to talk and I can do it here on an empty screen without having to see the uncomfortable expression on people's faces or deal with the angry response I always get from my own family for daring to mention I'm struggling, or mum's getting worse.
I feel a bit more able to cope already by writing this.
I'm sorry guys, I'm not looking for sympathy, I know you all are in despair too, I just need to process my own thoughts and see what's going on in my head and I can do this here. Maybe I should just press delete. Maybe I won't
Maybe this will help someone else see that you're not bloody abnormal when you feel like you can't keep going. As Scarlett says, "Tomorrow is another day". I can honestly say I'm dreading putting mum in respite tomorrow. I'm sorry I bleated on about it so much now. It's no magic wand, the pain's still there as big and throbbing as it always has been.
Thanks for listening guys. Thanks for being there.
 
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Kriss

Registered User
May 20, 2004
513
Shropshire
Dear Magic

take heed of Judes words re panic attacks - the label might not sound right but deep down the effect sounds the same. You're gonna feel wiped out just getting Mum there aren't you, don't even hope for the relief you so badly need today, just take what comes. Hopefully you will get the opportunity to build up on it again and again and again until you start to feel some benefit.

We're all hoping things go as well as they can today for you. Try to srep back and let them all get on with it - don't try to put on your brave face for the benefit of others - let it out!

Love
Kriss
 

carol

Registered User
Jun 24, 2004
196
Surrey/Hampshire
Dear Magic,

Thinking of you and your Mum today. Keep strong for you and her. Life stinks sometimes, she is so lucky to have you to care for her.

Love Carol
 

Nutty Nan

Registered User
Nov 2, 2003
790
Buckinghamshire
Fingers crossed!

Good luck for today, Magic - hope it goes well and even if you have a good old sob once you are on your own: it will do you the world of good.
Take care.
Carmen
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Magic

yes, we're all thinking and feeling for your plight.

Sometimes you have to be what might seem a little hard, and that's not easy. I'll take my situation as an example.

Jan and I have been together for 39 years, 36 of those married. The last 3 years she has been in hospital respite or the care home.

I feel a huge responsibility for her care, but our past closeness means that seeing her deteriorate has been crucifying for me.

No matter what I do, or try to do, that deterioration is there, and will continue. It would do her no good, and me a lot of harm, to see her all day long if I were caring for her at home. There's a threshold of pain that we all have, and I reached mine some time ago. I know that once I am above that threshold, I myself become unstable. Been there. Nearly done it.

Bear in mind that her condition is the worst in a home of 24 residents, and is so bad she has 24 hour 1-to-1 care, And she is 63. Other, older sufferers are in no way as bad a condition, so the situation is different for them and theirs.

Visiting her as I do, 6 days a week, I can concentrate on being cheerful and bright for the time I am with her, and that does have a positive effect on her. With the best will in the world, if I were anguished at seeing her condition all day, as well as being tired out, she would not get my best.

The business of putting someone into a care home on respite or permanently is bloody difficult; there is little that is worse. I was severely upset the first time I went even into the assessment ward at the hospital prior to Jan going there.

If you can start with the respite and see how that goes, and build on that, then it is probably the most you can expect for now. Once that is resolved, you can consider... what next?

All together now..... Day by Day.

You are doing well in a near impossible situation. Use the forum as much as you want, whenever you want. We're all in the same boat here. Some have found a bit of deck closer to the lifeboats, some are manning the instruments playing "Abide with Me". We all know that some have tipped women and children out of the lifeboats so they can get away.

Oh grief, I've started wandering. Nurse! The screens!
 

Mjaqmac

Registered User
Mar 13, 2004
939
You guys are an army of angels. I couldn't do any of this without your help and advice. It helps so much to talk to people whom REALLY understand.
THANK YOU.
Brucie Braveheart you made me smile again. Sounds like we're all sailing on The Carer Titanic!
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Magic,

This Titanic ISN'T going to sink. It's more like 'The Good Ship Lollypop'. And I don't mean that life sucks, either......!! Yeah, well it does it bit, admittedly, but we can handle it can't we?

Look how far you've got in the last few weeks!

You've gone from total daily despair to fronting up to all sorts of organisations; being really assertive; telling your family where to get off... got your Mum into respite... You've done a GREAT job and you DESERVE a bit of free time now to reflect upon your huge achievements. And on top of that, you've still had time to post some wonderfully positive messages here to help to others.

Go out and have a brilliant birthday celebration with your fiance. Have some fun. Relax. Read a book. Have a couple of drinks..... Give yourself some treats. You really deserve it.

Jude xxx
 

Mjaqmac

Registered User
Mar 13, 2004
939
Well, Mum went into respite. Lovely place. Left her bantering quite happily with the staff. Fingers crossed.
Thanks to everyone for all the encouragement, it helped so much and made me feel a little stronger, managed even not to cry, yet!
 

carol

Registered User
Jun 24, 2004
196
Surrey/Hampshire
Dear Magic,

So pleased your day went better than expected. Very often what you imagine is far worse than the reality. Now relax ...........

Best wishes,

Carol
 

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