But don’t forget to find time for you!

[Thestruggleisreal]

Anyone else just smile when they hear these words spoken however well meaning 🙃
What is time for yourself when you’re looking after someone with dementia, plus a family and trying to keep everyone & everything afloat? Even when you do find time for yourself you’re still never totally care free are you. Just a little (a lot) tired today but I know you’ll understand x

 

[Nanny1086]

Anyone else just smile when they hear these words spoken however well meaning 🙃
What is time for yourself when you’re looking after someone with dementia, plus a family and trying to keep everyone & everything afloat? Even when you do find time for yourself you’re still never totally care free are you. Just a little (a lot) tired today but I know you’ll understand x

hi there , i totally understand, and like you today im very tired ,,,, ive had a bad day today my husband has got alzimers, and today his hurtful words have deeply embedded themselves in my mind,
, “Make time for yourself “ ,,,, fruitless words , that people seem to say when they are at a loss of what else to say , if your like me when people ask hows things ,,, you smile and say “okay ,,, or not too bad ,,, “ when deep down your screaming ,,,,,,,,,,,, sometimes i take myself upstairs and leave him with his colouring book ,,,,and i run myself a bath and put on some relaxing music and for 10/15 minutes life is calm and ,,,,normal ,,,, i hope you manage to a peaceful day and find 15 minutes all to yourself , sending lots of gentle hugs ,

 

[Thestruggleisreal]

Yes I too say he’s ok, he’s doing well.. mainly as as it’s just too much effort to try and explain. Yes I love a bath too! Thank you for your understanding words, sending those hugs back to you too x

 

[Blissy]

Sounds like we are all the same. Easier to say things not too bad and coping ok although you might be longing to walk away from it all.

 

[Cardinal]

I always tell my daughter he is fine because I worry she would find an excuse not to help if she thought he was going to be difficult.

 

[wurrienot]

I had a lovely lady from a carers support group wanting to book me in for a free spa afternoon. I asked if I should bring dad with me or leave him to fend for himself. She didn't suggest it again.

 

[leny connery]

Sounds like we are all the same. Easier to say things not too bad and coping ok although you might be longing to walk away from it all.

because, I always am mindful that people do not really want to hear your hard life story. not really. it is tedious, even to my own ears. so, yes, I just say well, same as always. To the well meaning advice about not forgetting to look after myself, I just say , yes, of course. thank you

 

[Lawson58]

because, I always am mindful that people do not really want to hear your hard life story. not really. it is tedious, even to my own ears. so, yes, I just say well, same as always. To the well meaning advice about not forgetting to look after myself, I just say , yes, of course. thank you

So have you tried answering that ‘no, he’s not doing too well at the moment’?

I understand that some people are just being polite, but there are those out there who have had their own traumas and difficult times and who really do sympathise with you. I do know that if I ask that question of someone else, it’s because I would like to know if there’s something I can do even if it’s only listen while they offload a little.

I think it would be a sad old world if some nice people didn’t ask that question out of genuine concern. I am sure that the suggestion to look after yourself is well intended and my guess is that they have no idea that they are the umpteenth person to say that.

 

[special 1]

Anyone else just smile when they hear these words spoken however well meaning 🙃
What is time for yourself when you’re looking after someone with dementia, plus a family and trying to keep everyone & everything afloat? Even when you do find time for yourself you’re still never totally care free are you. Just a little (a lot) tired today but I know you’ll understand x

Hi there. No we don't all just smile that is for sure. Deep down we all want it to end especially when things get sooooo bad for us and our O.H. Just like you I am in tears every day. I try to keep it in as much as i can, then I start again. Lawson I feel like I can really feel and understand all that you say. I won't say have a good day, or take care as it is useless. 💔

 

[lollyc]

I had a lovely lady from a carers support group wanting to book me in for a free spa afternoon. I asked if I should bring dad with me or leave him to fend for himself. She didn't suggest it again.

I asked if the carers group ran a creche, so I could bring PWD with me. Got a blank look, then the nice lady suggested I got someone to sit with her, so that I could attend. I did say that if I could do that I wouldn't need the bloody carers group! Suffice to say I never did go.

 

[special 1]

Hi there . Yes they are all full of great ideas etc, but when it comes to getting our O.H. looked after for a bit, it all goes pear shaped again. I had the same experience when I was looking at getting a befriender in, when I said he gets a bit agitated at times, well I saw the look in her face and she said she would get back to me. I knew then that was a no no, She called the next day and said he would not be suitable. Well what can I say.🤷‍♀️🤷‍♀️🤷‍♀️

 

[JBK]

I had a lovely lady from a carers support group wanting to book me in for a free spa afternoon. I asked if I should bring dad with me or leave him to fend for himself. She didn't suggest it again.

That is so typical of these “professionals.” They just do not understand the life we are forced to lead.

 

[leny connery]

So have you tried answering that ‘no, he’s not doing too well at the moment’?

I understand that some people are just being polite, but there are those out there who have had their own traumas and difficult times and who really do sympathise with you. I do know that if I ask that question of someone else, it’s because I would like to know if there’s something I can do even if it’s only listen while they offload a little.

I think it would be a sad old world if some nice people didn’t ask that question out of genuine concern. I am sure that the suggestion to look after yourself is well intended and my guess is that they have no idea that they are the umpteenth person to say that.

 

[leny connery]

dear Lawson58. thank heavens I do have one or 2 friends who really understand as they did look after a family member with dementia in the past. I mean to most friends and acquaintances, I just try not to bore them, is all. So, I just say it s okay, same as, and not go into more detail. I do appreciate them asking tho.

 

[Helly19682]

Totally get the theme here. Everyone says "take care of yourself". Always makes me think - what, in addition to going backwards and forwards to the hospital, trying to explain to my Dad why he cannot come home immediately, taking care of his life admin and collection of exotic animals, when am I supposed to be taking care exactly?
In between that and work, there isn't a lot of time to take care of myself. I know this is wrong, but too many people offer platitudes rather than solutions IMHO.
Then, when the hospital are finally thinking about discharging him, first question, "are you going to look after him yourself?". Me, "I have a disability so probably not". Them "oh I am so sorry". Me, in my head "I would rather some practical support than your apologies". Give me strength.

 

[jennifer1967]

Totally get the theme here. Everyone says "take care of yourself". Always makes me think - what, in addition to going backwards and forwards to the hospital, trying to explain to my Dad why he cannot come home immediately, taking care of his life admin and collection of exotic animals, when am I supposed to be taking care exactly?
In between that and work, there isn't a lot of time to take care of myself. I know this is wrong, but too many people offer platitudes rather than solutions IMHO.
Then, when the hospital are finally thinking about discharging him, first question, "are you going to look after him yourself?". Me, "I have a disability so probably not". Them "oh I am so sorry". Me, in my head "I would rather some practical support than your apologies". Give me strength.

i know and put a broom wherever and i will sweep the floor at the same time!!! even the carers group have a meet up which i cant get to, not on a bus route, i dont drive and house bound. there is no consideration for disabled carers who have needs as well. totally swept under the carpet.

 

[Chizz]

Some people think, but v few.
This even applies to some carers' groups and their convenors.
Last Thurs pm I joined in an online zoom meeting for carers in my area. The carers were all sorts, not just for a PWD, but a parent for an autistic adult child, a lady whose OH has Parkinsons', a lady looking after her adult bi-polar sister, etc etc. Anyway, coming near to the end of the session the care professional running the group thought she end the meeting on a lighter note and started with me by asking if I had anything coming up this weekend (the weekend just gone).
Whilst I try to be cheerful most of the time - my version of hosting mode! - I was feeling tired (not unusual) and a bit grumpy about another washing machine load to put on. So I just asked her what a weekend was as I couldn't tell the difference between caring all day etc on Friday or on Sunday. I told her it was OK for her as she'd have time off her work. What was time off? I asked her. She was a bit taken aback. She said I might have had family members who do work, who would visit on their weekend. I apologised, but said most people don't understand that full time every day caring is caring full time every day.

 

[Helly19682]

i know and put a broom wherever and i will sweep the floor at the same time!!! even the carers group have a meet up which i cant get to, not on a bus route, i dont drive and house bound. there is no consideration for disabled carers who have needs as well. totally swept under the carpet.

@jennifer1967 - totally agree. It's like it is binary, you can either be a carer or disabled.
If you are both, no one knows what to do. Services do not think about any access flexibility. I can support some aspects of his care (and probably will end up doing so) but clearing a downstairs room, at very short notice, not so easy. Hospital communication can be a bit variable to say the least, probably end up in a last minute panic. Familiar to many on here.....

 

[jennifer1967]

@jennifer1967 - totally agree. It's like it is binary, you can either be a carer or disabled.
If you are both, no one knows what to do. Services do not think about any access flexibility. I can support some aspects of his care (and probably will end up doing so) but clearing a downstairs room, at very short notice, not so easy. Hospital communication can be a bit variable to say the least, probably end up in a last minute panic. Familiar to many on here.....

i could write a thread on just being a disabled carer. there is nothing out there that recognizes it or the problems that it raises. theres got to be a better way for looking after ourselves and caring.

 

[Sally1975]

Oh my goodness, if we had a pound for everytime we hear this. And also when you go for a doctors or appointment for yourself and they say you only need to take 10 mins to fit this in so you should do this and that. I heard this 3 times from different things last week. I just laughed when they said it as no one really understands even when you explain what you have on your plate.

Like you I have a Dad with Alzheimer’s, diabetes and 2 heart conditions. Siblings that do nothing - not even take him out or to their houses. And then cause trouble. Then I have. 4 year old and a job. Me and my partner are the only 2 with all this, so it’s tough.

When you get these carers forums sending emails on things to attend, I think I would love to do that fun stuff with Dad, but mine is all about taking him to appointments and sorting stuff for him. Usually tired and also snappy!

So you know what, we are all doing amazing and the fact that they have us there caring for them, they are very lucky people to have you there loving and caring for them on a daily basis. Huge love to you all, it’s good to talk.

Please open up and talk to people, if they are friends they will listen. It’s good to get it off your shoulders sometimes.