Mum Had A Bad Night...
They are happy how Mum's tumour is and another problem she has appears to have improved. However, Mum did not feel like eating yesterday so we were back to Complan drinks even though I had cooked an evening meal and it was ready to go!
I'll find a use for the sprouts, chicken and potatoes today so they'll not be wasted.
But of course this also means Mum did not have her bath yesterday either.
So she has to wait until 9.30am-10am for the carer to give her a bath as it is written into the care plan...
Well you know what? Sod the care plan...
Mum is awake...she wants to rest but does not feel like waiting until the carer arrives so even if the carer is booked for a forty five minute slot(and we still have to pay for that time period)I'm giving Mum her bath in a few minutes and taking her back to bed and the carer will just have to write what happened in her report/record that she fills in every time she calls.
Mum wants her baths when she feels like them, be it a morning/afternoon/evening and does not want to be tied to a particular time on a particular day. And though the care plan says she will probably have the minimum of three baths weekly, taking our bath care, it could be more than four.
I don't work to a time and so Mum can stay in the bath as long as she wishes and hopefully will get more benefit from them.
And this time I/we am not going to be dictated to and will tell the Social Worker that as well if she ever gets back to us. She may be busy with other cases but she often says she'll phone or call("I'll get back to you")she often does not.
I think I managed to get this home to the District Nurse finally after our talk yesterday. Alot of her happy disposition is over the top, when she arrived she kept waving and laughing and smiling as she came over from the car and now I don't fall for any of that guff, I'm sorry its not my nature but I was cool and non responsive.
All they do may be done with the right intentions but when they have a genuine, caring person like myself they seem determined to cause un-necessary problems(and they will probably happen sooner rather than later whatever we do)and I am so easy to work with.
Even now though the chair lift is better than a board across the bath but Mum still misses being able to lie in a bath and feel water around her body so its not the wonderful experience it used to be. Whoever bathes Mum they are a chew on.
When all this is over Mum is going to try and eat some breakfast(probably porridge and toast)which will build up her strength and release energy slowly.
I'll find a use for the sprouts, chicken and potatoes today so they'll not be wasted.
But of course this also means Mum did not have her bath yesterday either.
So she has to wait until 9.30am-10am for the carer to give her a bath as it is written into the care plan...
Well you know what? Sod the care plan...
Mum is awake...she wants to rest but does not feel like waiting until the carer arrives so even if the carer is booked for a forty five minute slot(and we still have to pay for that time period)I'm giving Mum her bath in a few minutes and taking her back to bed and the carer will just have to write what happened in her report/record that she fills in every time she calls.
Mum wants her baths when she feels like them, be it a morning/afternoon/evening and does not want to be tied to a particular time on a particular day. And though the care plan says she will probably have the minimum of three baths weekly, taking our bath care, it could be more than four.
I don't work to a time and so Mum can stay in the bath as long as she wishes and hopefully will get more benefit from them.
And this time I/we am not going to be dictated to and will tell the Social Worker that as well if she ever gets back to us. She may be busy with other cases but she often says she'll phone or call("I'll get back to you")she often does not.
I think I managed to get this home to the District Nurse finally after our talk yesterday. Alot of her happy disposition is over the top, when she arrived she kept waving and laughing and smiling as she came over from the car and now I don't fall for any of that guff, I'm sorry its not my nature but I was cool and non responsive.
All they do may be done with the right intentions but when they have a genuine, caring person like myself they seem determined to cause un-necessary problems(and they will probably happen sooner rather than later whatever we do)and I am so easy to work with.
Even now though the chair lift is better than a board across the bath but Mum still misses being able to lie in a bath and feel water around her body so its not the wonderful experience it used to be. Whoever bathes Mum they are a chew on.
When all this is over Mum is going to try and eat some breakfast(probably porridge and toast)which will build up her strength and release energy slowly.
posted by The Great Gildersleeve | 8:43 am
9 Comments:
If your Mum & you have a good rapport with the carer, perhaps it's not a good idea to do her job for her, unless you've got other things lined up. It puts her in rather a difficult position doesn't it ? & presumably she'll have to report back, unless she says on her form that she did bath your Mum.
Perhaps your Mum sensed you were angry & upset yesterday , & that meant she didn't feel like eating.
I know it's tough, but try not to fight the health professionals, otherwise they could think you're being deliberately obstructive.
No it was for other reasons that Mum was unwell. I wasn't so angry or upset and found it helpful that I had the chance to put someone else in the picture. And just possibly the District Nurse backed down a little.
We were still ok(for now)with the original plan... and again the DN realises that certain aids we have came after the original plan was instigated so when she thought certain things were not being done perhaps that was the reason...
The carer is not allowed to do anything other than what is in the plan...so if Mum said her back was hurting, I can massage it and put some kind of pain relief gel on it...she would not be allowed.
Three baths per week? Mum already gets that and its reasonably easy for me...and nicer if its when you want them.
But now she has to have them somewhere amongst the now daily visits we have to have.
They could've just written those baths into the original plan.
I think that some of the care makes matters worse and I am still able to do things in a more relaxed way.
Again, if Mum deterioates I//we are ready to shout for help but we both appreciate it when we can close the door and know that no one is coming for the rest of the day.
I am not influencing her in any way, I know what she says herself.
I should add that "we" have not agreed to the extra visits or the new care plan, it has been forced upon us so we were up front that "we" did not want to change things at this moment in time.
And as one of my friends(who comes on here as an anonymous poster)said on the phone the other night she knows that sooner or later some kind of problem arises when you have to work with Social services or whatever its called in other countries...even she had problems of sorts over her parents when perhaps it meant going into residential care.
And we are not being deliberately awkward, I think we could be seen as easy about things, too easy.
Hey Gildy, it's Jan :) I've been catching up on your blog. I'd been out of whack for the last few weeks.
What the heck has been going on over there?!!!
I'm glad you're finally getting your back up over this forced care thing.
I do not agree with the other poster that you should just go along with what they say.
As her primary caregiver, you know what's best for your Mum.
I know from personal experience that being in the position your Mum is in, you feel like you have no control over your own life anymore, and it is essential for her to have as much control over what she does, and when, as possible.
When you get into "The System" they want you to do things to suit their convenience, not what's convenient for the patient, who should be the focus.
Patients are not made to cookie-cutter standards. Everyone is unique. I don't find it strange at all that she (or you for that matter) don't want to get up at 9:30 am, and she should be accommodated not them.
Perhaps they could revisit "The Plan" and give alternatives for the carer on days when your Mum either has already had her bath or just doesn't feel like having one when the carer is there. Perhaps on those days she could have other duties, and put them order of priority (i.e. bath first, if no bath massage her, etc...), that way it gives your Mum the choice and the carer's time isn't wasted when she's there.
Here in the States we have ombudsmen who aren't part of the system but work as an advocate for the patients and/or their families. Do you have anything like that over there? Someone who might intercede on your behalf with no "dog in the fight", so to speak.
I've known you long enough to know you are by no means a pushy man, and that you go out of your way to be polite and easy going. Anyone who'd think you anything else is sorely mistaken.
Maybe I don't understand your system and have this totally wrong, but it seems to me a conflict interest to have the private company suggesting you need more hours. Is that right? Shouldn't that decision be made by someone who does not profit from those extra hours?
And here's one thing I know for sure, Gildy, you are your Mum's only real advocate, and if you don't fight for her wishes who will?
You're not an ill-tempered person by nature and I feel confident that if you feel strongly enough to speak-up then it's important for you to do so. You don't have to be mean, just firm, and remind them that your Mum is the reason you're all doing this in the first place, and she needs to be as happy and as comfortable as possible, and that before they make decisions willy-nilly, they need more than one visit or comment before making an assessment that will change her routine she seems to be happy with.
Sorry to hear you're having to deal with all this on top of everything else. Hang in there, Buddy!
Jan :)
Jan,
Good to see you...
That's much how I see it.
I am so sorry for not getting back to you after your original support and the wonderful last PM you sent.
I popped back into that site and somehow got distracted.
I value your views and input(Your friendship)
And I would feel the same if you had to say actually..."I think you are wrong on this point or that point"
A good friendship can survive criticism...if gone about the right way. Usually its a case of saying..."Have you looked at it this way?"
In many ways even asking advice from other charities/organisations still gets you nowhere.
Mum is much better since coming home from hospital(see the later blog entry)but I bet they try to bring in more care and change things again, not looking forward to that battle...
I value your friendship too, my friend. I think about you both all the time.
And if you start worrying about whether or not you've gotten back to me, or hurt my feelings, I swear I will get on a plane...come over there and shake you! :)
I knew you had your hands full. That's why I decided to post over here so you wouldn't have to worry about keeping track of both places.
I'll send you my e-mail address on the other board so if you have something you don't want floating around in cyberspace for all to see you can send it privately.
As for whether or not you're wrong, I haven't seen any evidence of it. I gave an overview of whats going on to my older brother, (who's in worse shape than me) and he was actually getting mad at the way their doing you.
Like he said, "If she doesn't feel like she has some control, she'll start to feel like a prisoner", and he's right. Her happiness is the best medicine. Stress will slow the body's repair processes way down.
I read the whole month's posts in one go and noticed at the beginning "Mum is happy. She's eating well", as this mess continued I was reading, "Mum had a bad night. She didn't want to eat." I don't think this is just coincidence.
Your mental outlook has so much to do with your health. I can't believe these folks don't know this and just keep pushing.
As for the battle ahead, you shouldn't even have to be thinking about it, let alone doing it...but if it must be done you'll do fine. You are a lot stronger than you think you are...especially where your Mum is concerned. You'll fight for her where you might not for yourself, and you'll find the strength.
I think a helpful thing might be to sit down and write out your own plan out with your Mum.
Once have a written goal of what you want done for her, and it's solidified in your head, it will be easier not to get caught up mentally in their kerfuffle (which is so easy to do) and keep yourself "on message" (for lack of a better term) with the others.
You can define what she needs to the others and fight in the places where they're not complying. I think it will make it easier to let the other drama go. It's so easy to get distracted by it, especially when you know it's not true and you are putting your heart and soul into her care.
It might put you in a better headspace and help you deal from a place of strength instead of so much worry.
It won't stop the worry, but it might help.
Anyhoo, keep swingin', Buddy! You'll be okay. :)
Jan
Jan,
I am amazed that I have put all that I have in cyberspace and sometimes thought should I but hey its what's going on and just somewhere someone else may be going through a similar situation.
I found myself having a kind of confessional with a taxi driver coming home from the hospital when Mum was kept in and actually lost it a little but as the Taxi Driver said they hear so much and like the old joke about the bar tender hearing a customer's woes he said that they do and by the time I was home I felt better and he had his own story to tell...very similar...
Many of us do when we start to talk.
That's not stress, just the end of a very long day, its never good to leave a loved one in hospital. That is a natural reaction if you come from a loving family.
Too true. :(
Jan
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