But don’t forget to find time for you!
- Thread starter Thestruggleisreal
- Start date
I can remember the time a lady from social services was giving a talk to our dementia group.
She was telling us about respite and did say it was means tested but to ask for an assessment.
I asked her how much it cost her to pay for her six weeks a year holiday replacement. How much she paid for someone to do her job at weekends. She looked surprised and gave no response. I said, "No you don't pay do you. So I do this job free and you expect me to pay someone else to do it when I want my rest time. Great, thanks"
She didn't hang around at the end for coffee and biscuits. Says it all.
I had a carer sitting in for two hours while I had an appointment with my GP.
I needed half an hour travelling time each way on public transport so could only allow myself one hour in the waiting room.
When the hour was up I told the receptionist I had to go, I had no further time to wait because my husband couldn't be left alone.
They were embarrassed, to say the least. I was so upset, I saw the doctor immediately.
People need to know how it is. They don`t need chapter and verse but replying to enquiries by telling them it`s tough, we don`t have a minute to ourselves or it`s a 24/7 responsibility can improve awareness.
I needed half an hour travelling time each way on public transport so could only allow myself one hour in the waiting room.
When the hour was up I told the receptionist I had to go, I had no further time to wait because my husband couldn't be left alone.
They were embarrassed, to say the least. I was so upset, I saw the doctor immediately.
People need to know how it is. They don`t need chapter and verse but replying to enquiries by telling them it`s tough, we don`t have a minute to ourselves or it`s a 24/7 responsibility can improve awareness.
Well said @maggie6445 My biggest problem at the moment is the Care Farm we visit each Wednesday. My husband goes there for three hours and I go with him for 'respite'. I love it there - I have so much support from the volunteers and staff and it's lovely to be outdoors doing something that doesn't involve caring although I am still with my husband but we can enjoy it together.
Just recently OH has resisted going. He loves to be there but doesn't want to 'go' (if that makes sense). Once there he is fine - it's just getting him ready and out of the door which is the problem.
The staff are aware of this and are trying to find solutions but it isn't easy. They have said we could go later and stay later but then we would be there (mostly) alone and it wouldn't be the same. They have offered to have someone visit us at home but then the farm is the 'special place'.
I don't want to force OH to go against his will but I need to go there for my down-time. If he wasn't enjoying it I could understand the resistance but he loves it there once we get there.
i think that they dont like being disturbed if you know what i mean. mine can be reluctant to go to mens shed because he has to get up earlier and hes warm and comfortable in bed. also the routine is a lot more hurried with breakfast etc. especially when its cold. once he gets ready and ive said he will enjoy it with the men and playing supervisor, hes up for it. hes making a bowl for our daughter so he has a purpose and he does like a bit of a gossip[worse than ladies actually].
My OH hasn't wanted to go singing the last couple of weeks. I think it's the effort of going and having time pressure from me. I've managed to cajole and afterwards he's said he's enjoyed it.
So I h easier to say everything is fine. By the way Im not ok and I would love to have time for a bath or read a book, thanks for asking 🙄🤦♀️
I have that problem as well, we used to go to a wellbeing group but recently he doesn’t want to go out. We also had home support from age Uk but he doesn’t want that anymore, says we can manage on our own
I just smile, like you
(most of the time, that is. Sometimes I just roll my eyes - especially when it's someone medical who says that to me - they should know better).
This is one of my gripes too in that our local carers organisation run courses, face to face and Zoom, plus carers outings and all sounds wonderful but totally impossible to commit to never mind leave her alone for hours without and help to either attend or even sit in front of iPad on Zoom while LO in the room never mind the house! 😜
So Many friends say "make time for yourself" and I am appreciative of an odd hour away from the house while the carer takes him out. But if people are too sympathetic I get very emotional / Does this make me look weak and out of control? I try to appear strong and on top of every problem thrown at me but sometimes feel very sorry for myself. Then I feel guilty as so many people have worse problems. Life is a real juggling act and it is exhausting so you can't sometimes think straight, but yes it is 24/7 in spite of those odd hours of respite or distraction your mind is never free of the situation. My only consolation is my husband is always happy and whistling his way through and when I feel down, he does make me smile as I can remember the fellow he was.
When I do find some rare time for myself, the ‘friend’ I’m with ,will give me graphic descriptions of someone else who is much worse than my OH. Usually they have gone into a care home or have died. How can they be so insensitive!
I had a similar response from age uk when I tried to reach out for befriending for hubby. He loves to walk and it was suggested I contact them by his consultant. I emailed age uk to see if they could help and was told their volunteers are not trained in dementia. I asked how they could perhaps help and got no response.
I was the same.
I was ok as long as I was left to get on with it but any sympathy reduced me to tears. It was the same when I had to ask for help and some of the best support I had was when a friend, herself a carer, asked for me.
It has made me realise how much we bottle up in order to keep our heads above water and it`s not surprising carers show symptoms of different health issues when their person with dementia either goes into residential care or sadly dies.
Oh was going to contact Age UK as been given carers vouchers to help get my brother out a bit more for walks etc. I wasn't sure if they were all volunteers, might still enquire.
Oh that's so sad. Walking is such great therapy for the soul. Would a local walking for mental health group take him under their wing? Very disappointing from Age UK, our training as carers is all unpaid learning on the job/messing up as we go.
A couple we know as friends have had a problem, to say the least. He has had a massive stroke. He's now out of hospital and at home. She has a terrible time coming to terms with his disability - not yet recovered proper speech, but it is possible, with time and patience to understand his slurring. He's v frail and wobbly on his feet, using a frame. He can use the computer, one handed, to keep in touch by email. He mostly copes with eating and drinking, but it's a bit messy without full control of both arms and hands. They have started to have a carer in the morning and evening to help with toileting and showering. It is, in my view, unlikely that he will recover, but he might not get any worse and he's with it mentally, can write (after a fashion) notes and questions. He can see. He can hear. He can follow programmes on the tv and radio.
She is desperate to have a break and go away away, and I have suggested respite care for him to help her.
Whilst he can no longer manage to come to bridge, she comes most times.
Now compare and contrast my situation as full time carer for the last 7 years for my OH, firstly with multiple myeloma bone cancer (now fortunately in remission) and now Alz's (and probably mixed). With gradual deterioration, my wife can no longer speak properly, she cannot cope with cutlery and I have to feed her food and drink, she can no longer weight bear and cannot get up to go to the toilet or bathroom/shower (and thus is as good as (if that's the right phrase) incontinent). I have a sitter for one three hour session per week, and son no.2 comes one evening a week so that I can go and play bridge. I keep up my 1 hour per week zoom meeting with friends for a chat (they all do it just for me); and I have a list of family and other friends I try to keep up with by occasional phone calls. Yes, it's very restrictive, yes it's difficult not going out when you want to, yes it's difficult not being able to join in friends' trips into town, or to the theatre, or to anywhere ever!
Friend, with husband whose had stroke, says to me "How do you manage? How do you cope mentally in being trapped in the house, no holidays, etc., etc.," I often wonder this myself, but it's in the mind and I have no real choice other than to get on with it for my OH in her darkest hours when she needs me most. Sure there are times when I'm down, when I wonder what's the point of going on, would it be kinder to put her into a care home, or to put a pillow over her head. How long is this torture going to go on for? etc., etc.. But generally, my natural optimism prevails, and I feel I'm privileged to be trusted with her care, because I care.
As the thread is headed "don't forget to find time for yourself"
Thanks for reading my rant, if you still are!
I'm not always sure if I'm the sane one here.
I'll go and read in bed for a few mins/pages, before going to sleep, so that I can get up and do it all over again! What a life - that's both of us!
Cheers. Smiling and laughing about it is better than the alternative.
She is desperate to have a break and go away away, and I have suggested respite care for him to help her.
Whilst he can no longer manage to come to bridge, she comes most times.
Now compare and contrast my situation as full time carer for the last 7 years for my OH, firstly with multiple myeloma bone cancer (now fortunately in remission) and now Alz's (and probably mixed). With gradual deterioration, my wife can no longer speak properly, she cannot cope with cutlery and I have to feed her food and drink, she can no longer weight bear and cannot get up to go to the toilet or bathroom/shower (and thus is as good as (if that's the right phrase) incontinent). I have a sitter for one three hour session per week, and son no.2 comes one evening a week so that I can go and play bridge. I keep up my 1 hour per week zoom meeting with friends for a chat (they all do it just for me); and I have a list of family and other friends I try to keep up with by occasional phone calls. Yes, it's very restrictive, yes it's difficult not going out when you want to, yes it's difficult not being able to join in friends' trips into town, or to the theatre, or to anywhere ever!
Friend, with husband whose had stroke, says to me "How do you manage? How do you cope mentally in being trapped in the house, no holidays, etc., etc.," I often wonder this myself, but it's in the mind and I have no real choice other than to get on with it for my OH in her darkest hours when she needs me most. Sure there are times when I'm down, when I wonder what's the point of going on, would it be kinder to put her into a care home, or to put a pillow over her head. How long is this torture going to go on for? etc., etc.. But generally, my natural optimism prevails, and I feel I'm privileged to be trusted with her care, because I care.
As the thread is headed "don't forget to find time for yourself"
Thanks for reading my rant, if you still are!
I'm not always sure if I'm the sane one here.
I'll go and read in bed for a few mins/pages, before going to sleep, so that I can get up and do it all over again! What a life - that's both of us!
Cheers. Smiling and laughing about it is better than the alternative.
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'Don't forget to find time for me'? - haha!
The way I look at it is, this is the time for me, caring for my good old mum. I do get time to myself at night - a few hours maybe, but (hopefully) most of those I'll be asleep. I'm awake at the moment as she woke me up before needing reassurance.
Other times I get to myself - 5 mins when I have a pee, 10 when I do a number 2. Twenty minutes when I have a shower in the morning, ditto when I walk up and down stairs 30 or 50 times late afternoon. I had twenty mins to myself mowing the lawn, yesterday (she could see me through the window).
If this ever ends, I'm sure I'll realise just what a strange life it's been as a carer for someone with dementia. I sometimes think of that day - I'll be able to just go out on my own - incredible!
But it's amazing what you get used to - and this forum is a massive help.
The way I look at it is, this is the time for me, caring for my good old mum. I do get time to myself at night - a few hours maybe, but (hopefully) most of those I'll be asleep. I'm awake at the moment as she woke me up before needing reassurance.
Other times I get to myself - 5 mins when I have a pee, 10 when I do a number 2. Twenty minutes when I have a shower in the morning, ditto when I walk up and down stairs 30 or 50 times late afternoon. I had twenty mins to myself mowing the lawn, yesterday (she could see me through the window).
If this ever ends, I'm sure I'll realise just what a strange life it's been as a carer for someone with dementia. I sometimes think of that day - I'll be able to just go out on my own - incredible!
But it's amazing what you get used to - and this forum is a massive help.
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