suffering

[Mjaqmac]

Jude, have just ordered book off the net. Hope it helps as I have never felt as down as I do today. The thought of getting through this day is horrendous! Have already had physio in, was in the middle of washing and dressing mum when she arrived (9.40am hello? tad early!), this resulted in a huge rush and practically having to carry her downstairs. Do these people not understand how difficult it is to get someone with dementia and heart and lung disease ready in the morning? Was told she wasn't drinking enough fluids (I push fluids into her all day) just looked at this 25 year old in front of me telling me what to do, and felt like pulling her blonde hair out by its black roots. Christ!!!!

They have no idea what the morning routine is like, then trying to push all the meds in and get breakfast and nebulise and toilet. Would like to see them manage for 10mins in this house.

Utterly utterly sick and tired, fed up, headache, overeating, disgruntled, depressed and totally S T R E S S E D!

Thanks. I really needed that.

Back to the grind.

Don't let me be moaning minnie alone, everyone have a pop at this whinging lark, it's great.

NEXT.......

 

[Jude]

Dear Magic,

Great - wait till you get the book. This guy needs to be told how wonderful he is.

Talking about whingeing - I've just had a massive one about my father. He is quite literally driving me INSANE..... Talk about mental abuse. For God's sake! I am feeling MURDEROUS today!

Jude

 

[Mjaqmac]

Thank God, I'm not the only one! Partners in perseverance.

 

[Jude]

Dear Magic and all......

Our morning paper didn't arrive, which has added to 'Dad's Daily Diatribe'. Went to the shop - they'd parcelled it up with the rest of the Merchant Seaman's papers. Went to the Mews; went and asked most of the residents; went to the Office [closed]. Ended up in the Bar - no drink and no paper, but a lot of hugs and kisses from the blokes [very nice indeed]. Finally located the paper. Back home to make lunch.....

Managed to miss out on one lot of financial discussion so far......

Jude

 

[Sheila]

Dear Magic and Chesca, thanks for the kind words,... made me cry! But you are both lovely and big hearted and and and, oh you know! Yes, she was ALWAYS there for us, and yes, it is the little things that make you keep going. I mentioned The Selfish Pig last year, if you don't buy any other, PLEASE buy that one, it is brilliant!! Sorry you are not getting help when you need it Magic, I hope you explained about the difficulties a bit, (after you slaughtered her!) they won't change their "I know it all" stance till you do. We turned away carers more than once, a) because they came an hour after I had got her up and sent her to the day centre! b) because if she was put upstairs to bed at 7pm she would not go anyway, would get in a strop and would then be awake all night in a right old mood. So absolutely no help and no good at all. The second time they tried that one on, I managed to keep the girl talking, sure enough, within five minutes Mum was yelling at the top of the stairs to come back down, message received and understood!! If you cannot use the service because they do not come at the given/requested time, DON'T sign the book! It really does your head in. They also found that they got a clout from her for their trouble a couple of times too! (Least they got paid for it!) Jude, saw your thread and replied as had similar trials. Love, She. XX

 

[Mjaqmac]

Shiela I really wish that bloody physio hadn't come today, in making mum lie down and get up from a low sofa and making her turn around etc (the woman has rheumatoid arthritis) I now have a woman on my hands whom has an agonising pain in her side. Thanks a lot love, your expertise knows no beginning! Am really P****d off today. Am just so terribly exhausted.

Tried the "helpers" for more than 7 months they almost gave me a breakdown. Mum definitely seems to be needing more care than I can give these days. I just can't do all of this, there are too many physical needs now with all the illnesses and everyone just stands back letting me carry on and then huffing if I put her in respite. I'm so sick of all this. Can't even get respite now as she proved too high a care level for the respite home.

What the bloody hell are we supposed to do as carers? The CPN just says I don't know to everything. I don't even bother asking anymore. This system has really let us carers down and we're too exhausted to fight back. When would you get the time?

 

[Chesca]

Stuff the huffers and puffers

Dear Magic

I've told you once and I'll tell you again, again, again and bloody again! If the huffers and puffers want to take over Mum's care for a couple of days then you won't need the respite and their lungs can rest deflated. Otherwise, it's none of anybody's business or conscience but yours when and where Mum is placed into respite care, or however you get a break. (If you say it to yourself often enough you might start believing it). If people want to be helpful they will not be those drawn from the species huff and puff.

I think you are going to have to try to let go a little if you want to save yourself - your sanity and physical wellbeing. Nobody professional does this 24/7 they have time off, any job requires that you have some time out to recharge your batteries otherwise you are not going to be very good it. Exhaustion isn't productive. And neither will you be when there is no choice but to send YOU for respite and the pressures you are enduring are leading down that route, please believe me! I've been there and with less than you have to deal with because of the additional physical disabilities of your lovely Mum.

And don't lose it if you've answered this 475 million times before, but what about this voucher scheme business that everybody is talking about? Whereby you get carers chosen by you but funded by 'them'.

Any outside carer is never going to be 'the business' because the love element is missing but they should be guided by you. And if your mum is now in dreadful pain because of the physio, call the doctor and see what they have to say and if this is acceptable. Why are none of the carer fraternity who come to your home never fully au fait with your mum's complete medical history? The lack of communication must be infuriating, enough to tip you over the edge!

Wish I could help more
Lots of love
Chesca

 

[Mjaqmac]

Chesca I hear what you're saying, I am just so numb with tiredness that I cannot seem to make sense of anything or plan a stategy to help mum dad and myself. I will bounce back, I know, I always do, I am basically just mentally on the floor today and more than a bit miffed that I am yet again The Lone Ranger. All the great plans of respite 2 weeks then home 2 weeks on a regular basis made my heart fly, as usual it was another case of flying pigs. This is only possible if mum is in good physical health, can you see anything wrong with this picture? Exactly!

 

[Jude]

Dear Magic,

Right! It might be time to really think about respite full time here, as in a Nursing Home. If you can't do it any longer, well then that's the end of the monkey. Frankly, I just don't know how you've kept going for SO long already....? I could not possibly do what you have been doing for months and months now.

For the sake of your mental health, stress levels and sanity - not to mention your other relationships and life - perhaps it's time to start getting geared up to get Mum into a Nursing Home as soon as possible? It isn't a cop out. I'm sure your mother would be horrifed if she really knew and could appreciate the stuff that you have been going through. I am.

There surely comes a time when you have to say 'OK that's it'. I've almost reached that point a few times lately, but I somehow know that I can keep going just an extra mile or two. I also feel that there WILL be a day when I KNOW that I have to stop. If you're at that point, then please DO something before you crack up completely. You can only do so much after all. I am not planning on playing Superwoman and killing myself in the process - neither should you.

Have a good think about it.......

Jude xxx

 

[Sheila]

Hi Magic, you sound so tired right now,wish I had a magic wand (sorry about the pun!)There is truth in what Chesca and Jude say, can you get the voucher system? I sacked our first agency because they were so useless, the second, I wrote out the care plan I expected and insisted they follow it. You need help not hinderance. That physio needs shooting, they just don't see the big picture, "Oh do this, do that" doesn't matter that your Mum is laid up afterwards because they're off out the door long before that and your left to cope, makes me so mad. I feel so sorry for your Mum too, poor little love, as if she isn't coping with enough already. It may not be what you want to do, but Jude does have a point, your Mum would be devastated if she knew how hard things are getting for you. No one, especially your Mum, would blame you, no one that has been in your situation I mean, not the huffers you take no notice of them girl. You could give her quality time when you visited and still be as involved as you wanted to be. It's just another way of dealing with this no win situation, only you can make that decision. Hope your Mum is in less pain tomorrow and that you are not so sad. Thinking of you, lotsaluv and hugs, She. XX

 

[Chesca]

Lovey ducks chucks, Magic

I'm not surprised you're unable to string two thoughts together. You're tired to the very core of you, tired of the grind and suffering from compassion fatigue. I know what you mean when you say 'I hear you but in the overall scheme of things it means sod all'.

You get so overloaded with information - the various organisations and their various offshoots with their 'please see section x-s' and nothing seems tailor made to suit our individual needs without a load of research that even at it's best is still full of 'please refer to section x of subsection xxs para1a(b)xyeffinz. What you need is a fairygodmother and she's apparently otherwise engaged. This is the horrible reality of what draws us all together.

Rant and rave to me when you feel the need. Always here however little help that appears at the mo.

Lots of love me old mucker
Chesca
XXX

 

[Chesca]

Dear Magic

I was writing mine as Jude and Sheila must have been writing theirs. Similar but the same? There's the spooks again!

It's back to the 'unvoiced' feelings, again, isn't it. You know it makes sense but your not yet able to countenance it. I'm here, along with others, don't forget it!

Lots of love, you
Chesca

 

[Mjaqmac]

Thank you girls for all your support.

Will just have to think about it all very carefully and discuss things with dad. But at the moment, neither of us are ready to let her go. As tired as I am and as hard as it is, it just isn't the right time. I can take this a little further.
Sometimes it just feels like you can't go on. But you do. Somehow.

 

[Jude]

Dear Magic,

If it's not the right time, then hang in there. I'm sure you will KNOW when it is. I guess we all will.

Jude xxxx

 

[Sheila]

Dear Magic, you sound so much like me,you always think, well lets hope this passes, tomorrows another day, she will get over this stage and it will be easier etc. etc. I know how helpless you are feeling to put things right, it's what you want so much, the old days when your Mum was not ill. Every memory haunts you, you want so much to make her smile, to hear her say things as she used to, it's a bxxxxy nightmare walking. You'd do absolutely anything for her and she for you, that's why you don't feel ready yet, you may never. We even got as far as going and looking for a suitable home. I put Mum on the waiting list, but every time there was a vacancy, I said thanks but not just yet. Thing is, strangely, it gave me strength in a way, to carry on, just knowing that I had found a lovely home IF it ever had to come to it. As you know, it didn't Mum passed away here at home as she had always hoped to, but as I said to you, she would have understood if I'd had to do it. You sound as if you use the inner reserves we all seem to find for this lark of caring, ha ha, some lark eh! Just make sure you do give your batteries a chance to recharge a bit soon, tell the huffers they must hold the fort for a while as you are taking a short break on the orders of the TP association! Love, She. XX

 

[Norman]

Magic
a lot of these feelings are common to us all.
I recognise all the ones described by the girls.
I am determined to keep my wife at home,always.
Having said that there are times when I could kill her,and at that time some one came along and said "we will take her off your hands "I would let her go.
But we don't,we pick up again, and the day to day kicks in ,tomorrow will be better and off we go for another session telling ourselves that we can manage forever.
You are not alone or unique magic shout when you feel the need

bestest wishes
Norman

 

[Mjaqmac]

Sheila I just want to do the right thing, I want to try to take it to the finishing line and not be pipped at the post by exhaustion. There's no one cares for your loved one like yourself. I was really delighted with respite, but I couldn't wait to take her home and breathed a sigh of relief when I took her out that nothing had happened when she was there. I would be blamed for all eternity by my family and myself.

My brother already said gran going into a home killed her, this is not true, she didn't have dementia, she chose the place herself, she was a fit and healthy 86 year old, went of her own accord, as she didn't want to live alone or with any of her children. She died peacefully in her sleep there with never a day of illness. But when things like that are said it makes you feel terrible. I know it's emotional blackmail and it's very effective. At the end of the day, I won't listen to the invisible siblings, I will do what dad and I feel is right, when or if it is ever right. What annoys me is who the hell do they think they are coming off with **** like that? It's all done in a very nice way, but I know what they mean and frankly, I find it despicable.

At least by reading this site I have found I'm not the only one whom has to suffer selfish siblings. They want everything played out like The Waltons but none of them want to be here at the end of the day to cry out "Goodnight Johnboy!"

 

[Mjaqmac]

Thanks Norman, you've all helped me through another bad patch again.

At least here I get varied opinions and experiences and by writing stuff down in reply, I also get to process my own thoughts, then I can see where I'm coming from, just not where I'm going!

God this is hard, isn't it? We must all be made from girders inside!

 

[Sheila]

Yup, just like me! This emotional blackmail is a real pain in the posterior. Before she was ill Mum always used to laughingly say "If I get like that, stick me in a home" when she became ill, I told her, "the only home your going to is mine". But it's so hard, the feelings you have rage from all ends of the spectrum, sometimes jumbled together till you feel it's you with the problem. But it's because we care, thats why. We love our Mum/Dad/Wife/Husband, we hate the illness and we hate what it has made all of us become, the sufferer and the carer, it changes us all and we can never go back. I had other family members say, "I couldn't do what you do, but I suppose you get used to it", or "I'd would be too frightened of doing the wrong thing" thats a really good cop out I thought! We just have to do it as Norman says day by day, in every way. We all have to do the best we can, but we also need to remember that we are only human.Love, She. XX

 

[Mjaqmac]

She, I get the "I couldn't do what you do" all the time. I even got it from my own GP and the sympathetic CPN from the gestapo said she never expected mum to still be living at home this far down the line. Nice! She always takes my feelings into account. What makes me laugh is the insinuation that I am somehow "different" that I can accept all the pain and suffering I see on a daily basis but it doesn't really bother me. What bloody idiots, don't they know that it bothers the carers more every minute of the day, because the rest of the skanks have the luxury of not even seeing the half of what's going on daily?

Right, that's me finished with the whinges now. I started the day with one, I'm finishing the day with one, I will get up tomorrow and stick my two fingers up at the dementia demon and start all over again. I won't say anymore. I've said too much today. But thanks to you all for being there and helping me, my invisible friends, the host of frightened angels.

Magic.