Bad day today

[GillPJ]

So I'm having a "how much longer must I do this?" moment. Mum has been on another planet all day, slept most of the day, and that makes it really hard to change incontinence pads, feed, make sure she gets enough to drink, etc. It's days like these where you think, what is the actual point, my own life is being wrecked by someone who doesn't care that their own life is already wrecked. It's the not making any effort at all that really gets to me. She halfheartedly offers me her left arm up to be lifted upright in the morning, but with eyes closed, and won't bend her legs for me to get my arm underneath and swing her upright, as if to say, I really can't be bothered, and yet I'm supposed to be bothered. I wouldn't mind if she met me halfway, but she doesn't. I tell her to lean forward a million times in the morning while 'm trying to hold her upright and get her dressed at the same time. Her left arm is always in the way, it's like it's not connected to any consciousness anymore. It's in the way when I get her dressed, when I put her on the standy-uppy gadget, when I take the belt off her when she's sitting down again - it's just always in the way - it grabs hold of straps I want to undo, belts I want to unhook, it's just always bloody there with a mind of it's own.
Please don't tell me I've got years of this still to go. I wake up in the morning thinking same **** different day. I can manage without carers, they'll just bring their own set of problems, like the dogs - it's bad enough waiting for the nurse to arrive, and making sure the dogs are out of the way.
Of course, telling her to lean forward a million times has it's downsides as well, because, when she leans forward to nosedive onto her table - "but you're always telling me to lean forward".
Aargh
Thanks for letting me have my little rantathon.

 

[Sarah1208]

Oh I feel for you...I’ve had so many days like that. You are exhausted but have made no progress. It’s hard. You say you can manage without carers....getting mum some carers to come in gave her another 2 years at home...and maybe stopped me from going over the edge. If I’d had a breakdown which I nearly did she would have been straight in a care home there and then. I worked with the carers and for a while it really worked. She went in a care home a month ago...and she is going downhill fast. Hope tomorrow is a better day for you.

 

[canary]

You need help @GillPJ - thats way too much for one person, no wonder you need a rant.
I have found getting carers in a sanity saver.

 

[GillPJ]

No, honestly, having carers in would be more hassle than doing it all myself. I'm fine if I can have a scream occasionally. Take the nurse for instance - we know he comes sometime around lunchtime, but never exactly when. Do we let the dogs out or not? Will we get the dogs back in if they're out? Should we keep the dogs in or not? Do I feed mum before (and risk getting interrupted), or after? Unbelievably, that is as stressful as just dealing with mum. I really don't want to go down the "what time are we expecting them, who knows?" route. The less disruption to our lives, the better.

 

[Sarah1208]

You need help @GillPJ - thats way too much for one person, no wonder you need a rant.
I have found getting carers in a sanity saver.

That is so true they really did save my sanity!! As well as looking after mum it was so good to have them on my side, we would chat about wether it was a good day, a bad day etc we even had a laugh about things. And it made me feel better knowing they actually knew what mum was like...as opposed to chatting to friends who just assume they know what’s going on. I used to love looking at the clock knowing that they would be at mums house at that time so I could breathe for half an hour. Priceless.

 

[canary]

Yes @Sarah1208 - I find the same. Is it really sad that during this time of lockdown, having the carer in is the highlight of my day?

 

[Sarah1208]

No it’s not sad at all. I didn’t live with mum but sometimes I crossed over with the carers and it seems to give me comfort that someone else had seen her ‘ having a bad day’ and just a few reassuring words from them would make enough difference for me to carry on. I would love to go back to that set up right now. But it just wasn’t enough.

 

[RosettaT]

I too love my OH carers, they have become friends and a couple almost like family. They have kept me sane and given me someone to talk too, lean on and rant at (about all things) if need be.

 

[GillPJ]

That is so true they really did save my sanity!! As well as looking after mum it was so good to have them on my side, we would chat about wether it was a good day, a bad day etc we even had a laugh about things. And it made me feel better knowing they actually knew what mum was like...as opposed to chatting to friends who just assume they know what’s going on. I used to love looking at the clock knowing that they would be at mums house at that time so I could breathe for half an hour. Priceless.

I think though, that "at your mum's house" is the difference. Mum lives with us, so any outside intervention is intrusive, especially when you've go two boisterous dogs. It's enough that the nurse disrupts our whole daily routine, thankful though I am for his visits. Of course it would be nice to expect the impossible - an exact time for each visit so we can plan around it. The nurse's visits already govern what I can do and when I can do it, so adding to that would be insupportable.

 

[Sarah1208]

Mums carers came 4 times a day and each call was within 15 minutes each way of a set time. Obviously there was the odd exception if there had been an emergency but generally very reliable. I must have been very lucky with the agency I used. I was so desperate for some help I would have tried anything. They are amazing people, paid so poorly but really love their jobs, sorry to go on but I will always sing their praises. It might be just what you need. Both of you?

 

[canary]

Its my OH who has the carers, so I do live with him and the carers come into my home. I have a rota which Im sent as an email attachment each week telling me who is coming (there has only been 3 different carers during the past 12 weeks) and what time they are coming. I was told that because of the virus there might sometimes be last minute changes, but so far the carers have all been within 15mins of their time slot apart from 2 occasions. The time slots are different each day, but I was asked what time would be the earliest that I would accept and what time was the latest and they have all been within this "window".

I have managed to sort out a reasonably flexible daily routine for OH and I that takes into account the different times and sometimes I do things in a different order if their time slot is later.

 

[GillPJ]

A very strange day today. Mum seems to go through phases of sleeping 24 hours a day, just waking up enough for meals, followed by awake days. Today she was quite awake and with-it, though she didn't want to get up after her afternoon nap.
"Are you going to get up?" says I.
"No"
"Are you going to think about getting up?"
"No"
"I think I'm going to pass on" she says.
"No chance" says I "you're far too healthy"
"Oh ******" she says.
"Are you going to get up for dinner and for me to change your pants?" I ask.
"I don't want any dinner."
"I'll go and water my plants then"
10 minutes later - "are you going to get up?"
"I suppose so"
Got up and ate a hearty dinner.
There's a contradiction here. It's my job to keep her alive, and her job to tell me to go away. We're never going to reach an agreement on that.
She's bored but doesn't want to do anything, she's got a zillion DVDs but doesn't want to watch them. I did manage to get her to listen to a Bach CD. I saw a post earlier about large piece jigsaws, but I know she wouldn't want to do them. It's exhausting just trying to arrange my life around hers.
To be honest, I prefer it when she sleeps all day.
I do feel for her, she's got this nasty ulcer, which is getting better extremely slowly, so she has to go through the rigmarole of dressings changed daily, heaven only knows when it will finally heal, if ever. I know if I was in her place I'd just want everyone to go away, and probably tell them so more forcefully.
All you can do is the best you can do.

 

[canary]

Have you tried either doing things without actually asking if she wants it, or to ask questions that dont give the opportunity to say "no" ? If you ask someone with dementia if they want to do something the default answer is almost always "no", so i try not to give them the chance.
Are you getting up by yourself, or do you want me to help you?
Would you like tea or coffee? Sometimes I dont even ask, I just hand it to him
Dinner will be in 10 mins (I never ask what he wants, just plonk it down in front of him - we both eat the same at the same time)
A lot of the time I just let him be

 

[GillPJ]

Yes, I'm beginning to realise that "choice" is often counter-productive. I rarely give her a choice of dinner anymore. It's funny that one thing she used to say about her mum (who had dementia), is that it didn't matter what you asked her, the answer would be yes.
It's easier when she's more cooperative about getting up. Today she lifted her legs and moved them almost off the bed. No mean feat for someone who's about to "pass on". I do generally set the scene of what's going to happen next, but it is easier if she's planning the same moves rather than the sack of potatoes mode.

 

[fromnz123]

Hi GillPJ, my mother came to live with us for the last 6 years of her life. I couldn't have done it without outside help and remain sane. At the beginning I did all her care then had a private arrangement with a carer that knew mum well who would come to shower her in the morning and do breakfast, to eventually having 2 carers x 3 times a day for personal care and I did the rest, in-between.

To enable me and my family to carry on having a normal life as possible whilst caring for mum's increasing needs, the carers were under instruction to let themselves in, this enabled me to have a lie in, have a shower and get on with life generally without feeling tied down to having to let them in.


Mum was a handful, and even the last 3 years of her life when she was bed bound she used to give the carers hell, especially if for any reason she took a dislike to one she would swear and curse at them.

Take care of yourself.

 

[GillPJ]

Thanks fromnz. The main problem being the hounds of the baskervilles, all hell breaks out if a bicycle goes past, never mind a carer turning up. The lesser of two evils tells me no carers and peaceful dogs. It just wouldn't work- mum has her own shower room, but everything else involves dogs. The dogs don't let me have a lie in anyway, so I'm used to that. I generally get up, we take the dogs for a walk, and I have breakfast before getting mum up, she often doesn't surface until 10am anyway. Then the rest of the morning is spent making sure she eats her breakfast and drinks enough, then it's lunchtime and time for the nurse and her afternoon nap afterwards - which often lasts until 6pm, so there's plenty of time for me to catch up on the washing etc.
My biggest problem with it all is the repetitive routine of it. I get one trip out a week to go food shopping, and that seems to come around quicker all the time, and it's not exactly fun. I'm not complaining (OK, I am) I know it all has to be done.
It used to make me quite cross, in discussions about caring for a parent, that often the argument was well they cared for you, now it's your turn. Of course that ignores the fact that mum wasn't 66 when she had me, and nor did I weigh 10 stone, and there was always the hope that in a couple of years I'd be potty trained. This childhood in reverse is much harder work.
Timing is also a problem. Being diabetic, she needs to eat. Do I get her up, give her a shower, having to cover her ulcer dressing with something waterproof first? Or blood test, inject, give her breakfast first - then I have to undress her again even if she's managed to eat all her breakfast before lunchtime, then she has to lie down again before I put her compression socks back on. At the moment, she's not getting a shower, just an occasional bed bath.
I'm sure once I can sort out a better routine I'll be fine.

 

[canary]

It sounds to me @GillPJ that you have just got too much for one person to do in a day and even with the best organised routine in the world it wont make there be more than one of you

 

[GillPJ]

Well, I don't think so. I have all the time in the world, it's the order in which to do things I'm having a problem with. Which comes first, diabetes or hygiene? In any case, carers really aren't an option, for reasons of finance (I'd need to get power of attorney which is very difficult in France), facilities - mum's shower isn't best designed for wheelchair use - I've had to make a ramp out of mats for wheelchair access, dogs, as previously mentioned, access to food not possible without encroaching on our (dogs) side of the house.
I appreciate that the answer to go for is get carers in, but I really don't want to go that route. I do know people who've actually managed to go the whole caring route on their own, so it is possible. I'm not dismissing your advice out of hand, but I just don't think it's right for me.

 

[Bunpoots]

I remember one person here who managed without any help until the very end so feel free to ignore us and rant as much as you need to.
Personally I’d do breakfast first ..

 

[GillPJ]

I remember one person here who managed without any help until the very end so feel free to ignore us and rant as much as you need to.
Personally I’d do breakfast first ..

Ha, I did the opposite today. It's hard to get her up before 10am, so I gave her a bedbath first - that woke her up! I do appreciate everyone's advice, and I'd be the first to advise getting help in for others. It's just not right for me. Her blood sugar is generally on the high side, so it's not so urgent to feed straight away, just give a small breakfast and an early lunch (to avoid the nurse coming in the middle of it).
Thanks, I really do need to rant occasionally, possibly without any answers, I'm sure my husband gets pretty fed up with me ranting at him. See, all this ranting and I'm answering my own questions