Why is it, practically every single post, somebody mentions fighting? I do it all the time. I fight the professionals, to try and get reasonable care for my husband. I fight the powers at be to get the help that they have all recognised that he needs. I fight his family to try and get some extremely tiny bit of support. I also fight S to get his medication, food, liquid, you know all the vital things in life, down him. Why? Am I wrong in thinking it's what everyone should be doing for my husband, including him? Or is it me that's wrong?
I just can't bear this lack of caring from all n sundry. I know S is one of the bad guys in the world, he set up his own business, with his own money, employed about 60 people in the good old days. Worked every hour God gave him, made sure his employees got their fair share. At one stage we were the lowest paid workers in our company, he even took out loans, to make sure everyone got paid. The tax man got his full share of the money. Yet we are still treated like s##t!
Sorry, feeling very sorry for myself. Having problems that his son could sort with total ease, will he........ .? I am made to feel like the ogre, because I won't empty some cupboards and dump the contents in the middle of floor, while they take weeks to sort out my boiler that is about to pack in. How do I look after a dying man, with no heating or hot water????
Please, please can someone tell me what I am doing wrong???
Lots of love
Heady
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Heady
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Oh, Heady, I AM sorry you are having such a rotten time. Your husband sounds like a wonderful man - even deserving of you! It's horrid that it comes to this. I know folks wonder why I have such a hard time sorting out all the practical things I need to be doing, but there's just so darned much of it that even the small and easy things get dropped by the wayside, and the hard things, well, I just can't get that organized. Every day is exhausting. but we keep fighting because there is no choice at all. hugs to you, since i can't do anything practical for you either! Love, Ec
Just knowing someone understands helps EC. As for S being deserving of me, well most would agree with you, but not the way you kindly mean it!!!
How can you organise anything from the bathroom, where I have spent most of my day, 'cause he won't take his laxatives! I am losing all these little battles, how can I hope to win the big one???
Can you hope to win the big one? We can't really beat this, can we? We can only fight a rear-guard action and hope to slow down the defeat so we arrive alive and with as much grace and strength intact as possible. Loving all the way down is the closest thing we can get to winning, I think.
Gee thanks EC!!! You're pretty cool yourself. Wouldn't it be lovely to have a huge get together of everyone on here. The laughing that would be done, would keep the incontenance pad companies in business for years!!! Not the forgetting the vineyards.
I'll be working the kegels - the incontinence supply folks have had enough of our business already. Always glad to support our hard-working vintners, though!
Heady -I'm new to this game - but already feeling like there is very clearly no right nor wrong! Mum going into respite....too early? Going to make Dad feel guilty? Going to keep her safe or spoil her so she struggles when she comes out?! No right or wrong answers!!! You can only be lead by a healthy mix of head & heart & do your very best.,.,.which I already know you do! There is no more to give & nothing else that can be done ! Hugs X
You may be new on the block Suze, but you have the right attitude to get you through a lot of the hard stuff. But remember, if you talk the talk, remember to walk the walk! The last bit I'm rubbish at!!!
Oh, Heady. I am so sorry you are feeling so overwhelmed. I wish I lived closer. What about your sister ?
It is certainly so unfair and so hard feeling abandoned by those who should support us in times of need. Of course we shouldn't have to fight the world to get what we have all contributed to and rightly expect when we need it. The support of his family is another thing. Sadly many on this site feel let down by family members.
You're not doing anything wrong. Its all too much for any-one without lots of support.
Have a glass of wine. Let the carers do their work.
A fellow fighter [ but not so far in the line ], love and a big hug, Jean xx
Hi Jean, having that much needed glass of wine. But oh, oh, I am so tired of this constant fighting. It never seems to end. There is always someone deliberately trying to upset you, unmind you, or just make you feel so damned inadequate. I am doing my best, I think extremely well, so why do others make me feel bloody c##p at the job I am doing????
Thanks for the hug. I was doing so well until this afternoon!
My sister is my hero, nobody could do more for me, but I do try hard to not become total reliant of her, she has enough problems, without me dominating her life.
I don't think most are trying to make you feel bad. But they are in their own issues. I don't think most of them have ever been in our position so they can't really know. So we are made to feel a nuisance if we question their assumptions.
I decided early in this game that I forget about being a good girl if I'm unsure about anything. I'm not out to make friends, although mostly we are. There's only me to fight for Chris. Fortunately Chris values that and I feel appreciated by him.
I'm sure S values you but being angry is what keeps him going !
Heady darling, your doing NOTHING wrong! It's every other bugger (that's me being very polite) that's let's us all down and are bloody useless!!!! Unfortunately we all have to keep fighting for our loved ones to get the help and support they need, meanwhile we feel like we are going mental! Time for wine I think for you! X
Definitely, second day from hell here. I see you had a rotten day as well. Let's raise glasses, I think I will last until about 6.15, when I give S his dinner!
Heady you are a wonderful person, always ready with advice for us all, I remember in one of your post, when you was in South Africa, you took S out for dinner, you had to go and park the car, you left S with the door man, and he complemented you on how well you cared for S. We fight all the time for the right help for our loved ones. Do you know what it feels like, when our children were young, we would protect them like a mother hen, well it feels like we are doing the same for our partners. S son sounds like a not very nice person, hopefully you will get the boiler installed very soon, with not a lot of disruption, look at all you have done. George was like S worked very hard, payed lots of tax, and it feels like we have to fight for everything in our lives, George has got a chest infection and a urine infection, have been sleeping in the same room as he, because I am really worried about him, not feeling much better myself, but have to carry on. Heady you really are an inspiration to us all, you are doing a wonderful job, sending you a big hug Yvonne xxxxx
Thank you Yvonne, for your kind words and remembering and reminding me of that moment. To think, I thought life was tough then, boy how stupid can you get!
Hope George is starting to feel a bit better today.
Heady, I don't fight, I just ignore if I feel they are not doing the right thing. D is having a bad time, think he he has another UTI which is knocking the hell out of him. It stinks when you get no help from family, I know that, but somehow or another you will get it worked out. Wish I could help. You are not doing anything wrong Its just getting help somehow from someone, I wish I knew who. I thought I was going to have a complete breakdown 2 days ago, but somehow or another I pulled myself together with my compression fracture in my spine. I won't let it beat me and neither will you. HUGS
TY ec but it is really getting me down, He just won't listen to me which is driving me crazy. Again, TY for the Bravo! Oh yes, he does not have a UTI, so progression?
Yes, the progressive lack of response is awful. It's like a curtain is thickening into a wall between us, but randomly, so it sometimes seems as if he could get through if he'd try, so I get impatient - but of course there's a limit to what he can do. I wish I knew what he is thinking, but maybe that would break my heart. He's being so good about it all, really. Couldn't talk much this morning, but stopped me as I was transferring him to give me a warm hug. It's so hard and sad, but I know he loves me and appreciates my care of him - - most of the time!
He is getting more and more confused and having more difficulty moving. I think he will have to back to the hospital, since none of his rotten Dtrs called me today. I think it is a progression and I hate sending him back there again. Breaks my heart.
Heady being so tired is part of it. D has two nights of not letting me sleep through. Had him tested for UTI and he is clear. Progressing, I don't know what is going on anymore. I am so exhausted I can't see straight and he refuses to listen to me which drives me crazy. Our wonderful aide just came over to get him off the sofa and put him to bed. I hate calling her so late but she doesn't live very far from us. I hurt my poor compression fracture back trying to help him and scared to death I will need surgery. Who will take care of him and my dogs, my babies?
Hi Audrey, you can't worry about the "what if's". That will take you over the edge. But if you have to have surgery, things will get sorted, because they HAVE to.
Well my dog is great for doing the hoovering, washing faces. Though cleaning food and other "substances" off clothes and floor is his speciality. Get the others to learn to take food from the fridge and put it in the right place and everything will be fine!!!
Heady, One of our dogs is great for grabbing english muffins off the table, usually my breakfast, the others clean the floor, only if its something they like. Picky Taking stuff from the fridge i sincerely doubt would work. Back still hurting unfortunately. Up side Don got himself out of bed today. Made me so happy. Now hoping he can off the sofa when its time for bed. Everything crossed!
Heady ... you are an amazing , caring and supportive women !!! I have only been on this site a few months and you are an inspiration to me with your words of wisdom , empathy and encouragement also! Keep doing what your doing ... I'm only very new at this and already understanding what battles I have ahead of me as I fight for everything for my mum . I do think people see you as so capable and doing a good job that they back off and don't get that it's all hands to the pump and any little help is gratefully received ... or they just don't get it !! .... as in my families case! Mum is first thing I think of and last thing when I shut my eyes .. but it's not same for them! So practically ... you need hot water .. is there someone else who can come and sort the boiler ... shame the son!! you need hot water and heating!
Heady sending you a huge hug and loving vibes from me x
You are right Mary, people just don't get it. I am my worst enemy, I hate anyone to see me crying or in need. As for admitting I need help and support, forget it. Things are changing very quickly now, I do let go and tell people how it really is now. Even said step son got a mouth full this morning. Not that it did any good, I have been forced to live in chaos, 10 days before I need to, but at least he emptied my cupboards, ready for the gas fitter.
Gorgeous one when you are having a low phase like this try to remember that you are doing your absolute best. Give yourself time to let out the emotions, like you have here.
I have frequent times of feeling like I'm on verge of a breakdown and then after a while the mojo comes back.
Us carers have such a tough time physically and mentally. We are watching and grieving for our loved one now and want the best for them to try to reduce their suffering. Most the time at the detriment to ourselves.
It is a battle with everyone and that is so unfair. It really shouldn't be that way.
Oh dear heady. I agree with everything you're saying. We are bad guys here in harrow. Hubby and I worked hard all our lives, didn't do "sick", paid for our own house and saved a few bob so we weren't a burden on the state. And in hindsight that was our biggest mistake. We should have been a burden and bled the system dry and more would be thought of us. But that's either your personal or not, and in our case, as in yours, we weren't reared like that.
As for fighting. In my own defence I think I'm becoming very good at it. Sometimes the satisfaction of getting something they didn't want to give you outweighs the frustration you went through to get it. But it is wearing all the same.
My sister, like yours, is an angel. So good with ger. I don't know how I would go on without her, and she has her own problems like everyone. Family are "ok" but can't be relied on as they too have their own problems.
On a more positive note the consultant said gerrys episodes were not hallucinationsbut cognitive deterioration and not alzheimers.
I am normally fairly good at battles, but when it's your man, who you have to fight, or worse his son, then I do lose the will to live!
Still my sister has just phoned, she is on her way round, with dinner and wine. That, hopefully will pick me up. At least tomorrow's headache will have a cause, not this rotten permanent stressed one!!!
Heady the problem with fighting is it tires you out. A big hug of support from me you need to have a time out even for an hour or two (I know not easy) if you don't you will burn out and then you will not be there for S. if it helps please let out the frustrations here on the virtual support net.
As always you say what we are all feeling ! It is a constant battle to get the right thing for our loved ones and it seems that most days we are the only ones with their best interests at heart.
Fighting jobsworths and red tape is very tiring and demoralising, so when you are also exhausted from the physical and mental side of looking after S , no wonder it all gets you down - you are human after all !!
We have all become the voices of our loved ones and if we can`t fight or speak out on their behalf, then who will ? Keep strong and have another glass of wine ... the best medicine for us !
That's what worries me, I am so near the edge, so, so tired, if I can't carry on fighting for S, there will be no one. Certainly not his family, as it's his son that has caused this crisis.
My sister is coming over, so there will be plenty of wine to drown my sorrows! I know it's only the middle of the week, but there are times, when that HAS to go out the window.
Heady I hope you feel a bit better after your sister's visit? You are very lucky to have her there to try to make it better. I know nobody can but good to have someone try? I have no family apart from my son and daughter. My son is there for me as much as he can, but my daughter is only there if there is an emergency. Apart from that I have a couple of friends who take me to visit my husband who is in respite. It's not doing me any good as I have spent most of my time trying to sort out his medication when I am not visiting that is.
He was in hospital and they totally screwed it up! Why is it when he was at home I was deemed fit to order his medication and give it to him? He goes into hospital and the first thing they do is lock it up! Then when you tell them to get have forgotten to give him his medication they lie! I could write a book about the past 2 years! Maybe we should do that? Put all the things that have gone wrong into writing and get some publicity for this damn condition! Our social worker doesn't even know what it is! We could do it bit by bit? Someone would surely print it?
Heady I have read lots of your posts and would want you on my side if anything ever had happened to me. To be honest all the carers on here are brilliant. Everyone doing all they can and then that bit more. All of you deserve a hug and a few more! I am so glad I joined you a few days ago as I really felt so alone. Now at least I know I am not the only one and also know there is something very wrong when people end up at near breaking point for the want of some help. Not much to ask for is it?
Heady you need to be kinder to yourself and remember you are doing your best. There is nothing you are doing wrong. It is the ignorance about PSP and the other rare conditions that need addressing.
Oddly enough I have a similar problem with the heating and need to empty a display cabinet to get a hospital bed into the dining room. Are they queuing up to help? What do you think?
Lots of love to you. All of you, as you are all great. Hope I manage to last too! That is my worst fear.
I think it's everyone's fear that we won't last until the end. How can you, when its PSP you are fighting and all that comes with it. It's far to much for any normal human being, yet we are expected to, with only the minimum of help, no understanding. How can anyone understand, if they have never heard of this evil disease. The district nurse has finally admitted S's bowel problems are too complicated for her, so is calling in the experts. Another load of incompetent's coming my way.
Glad you are not feeling so alone, now that you have joined us. We all need each other and the support that is gained from sharing our stories.
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Taking stuff from the fridge i sincerely doubt would work. Back still hurting unfortunately. Up side Don got himself out of bed today. Made me so happy. Now hoping he can off the sofa when its time for bed. Everything crossed!
Dad lost his fight
Exhausting day of fighting the CCG!
My husband has lost his fight with this awfull disease 
