I have arranged a carer to look after my wife for two full days a week now to give me some respite. Carer is great. My wife with advanced Parkinson’s & dementia amongst other things, always begs me not to leave her. I usually do but always feel bad about it. My heart tells me to stay home but my head says I need the break. Which is right?
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Oh dear - that happens so often and I find I am almost in that situation. However, I keep telling myself - and you must too - that you MUST protect your own health otherwise the other five days will not be possible for you.
You have a good Carer to take over from you and that is wonderful. Graham has told others, but not me, that he doesn’t want me to get a carer so I can get breaks, but then tells me I need to get time off!! When I do, I have very limited time away as he starts to panic if I am more than ten minutes later than I said my return time would be - even if it’s only heavy traffic delaying me.
I’m shattered and have now got a friend coming to stay for a week so I can get away and switch off and not worry.
Please don’t get drawn in with emotional ‘blackmail’ and remember YOU. 
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In a household of two fit people, each does 50% of the housework. If one is disabled, that means 100% of the work falls on the fit person. In addition, the disabled person needs help with a lot of things, so a carer may need to be available 24/7, 100% of their day, ready to act with zero warning. Often the caree has absolutely no idea of the physical and emotional toll this takes. They are ill. Focussed on their own needs for their survival. We all get ill from time to time, but long term disability, month after month, year after year, takes its toll. If we love someone enough to care for them 50 weeks a year, they should love us enough for us to have 2 weeks off! If they can’t manage without a carer for a few hours and refuse to have a carer, then residential care needs to be considered. We are not slaves!
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Please go ahead with the Carers. Totally echo BB’s comments. You do need to take care of your own mental health as caring is so very very draining, and often gets worse as needs increase. You have NO need to feel guilty and one thing that was stressed on this Forum is that we cannot care for anyone else unless we practice self care. Your wife will be safe and cared for when you are away from home and hopefully she will accept the Carers in time. I have to agree that the elderly and the ill are incredibly selfish. I have had to fight tooth and claw to establish some life of my own or I would have sunk into clinical depression.
You need the break. Really.
Thanks for the replies. I know what I should do but it’s great to get some feedback & encouragement. The comments re emotional blackmail do ring true. After over 50 years married I am getting comments like ‘I don’t think you love me any more’, ‘you don’t care’, ‘you have no patience’. etc.
I shall stick to my guns.
Thanks again. This forum is a great resource.
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I cared for my Mother (she had Alzheimer’s) and often felt the same way - I knew I had to get out for some “me” t ime but always felt guilty about doing so.
I found “The Selfish Pig’s Guide to Caring” by Hugh Marriot really helpful at putting things into perspective and have often recommended it to members here. It’s readily available on Amazon and I highly recommend it. It’s written in such a way that you can dip in and out of it whenever you have a few minutes to spare !
I’ve found a compromise helps. Mum dreads the thought of me not being at home. The other siblings will shout at her and make her feel worthless so she wants me around.
I feel the pangs of guilt whenever I go anywhere, even to work.
I have the week off from work but lied to Mum and said I had a training course to go to yesterday. I met up with a friend from work who cares for her disabled husband now. We both spoke about how guilty we feel for not being there 24/7 but it’s also very hard work being on call non stop.
Best wishes,
Noddir, totally agree you need a break.
@susieq recommends a book re caring for someone with dementia (it’s called Contented dementia or something similiar.
The author recommends telling a kind lie (as @Pet66 calls them) to the caree that you are going somewhere you’ve always gone to, where your caree would never have wanted to go to. Eg I’m going go out to work/ to B&Q/ to play golf/ watch the footie or whatever. This makes them feel less anxious and more accepting. The paid carer can reinforces this story too.
For some it’s better to slip out whilst they are doing something they enjoy. The paid carer then wanders in and joins them in the activity/ brings them a drink etc and when they ask where you are -they tell the kind lie.
Worth a try especially if she is lesa anxious and doesn’t give you such a hard time.
Thanks again. Just looked up Contented Dementia book and it’s available on Amazon for Kindle/ IPad for just 99p. at present. Downloaded a copy & look forward to reading.
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Is it the one by Oliver James?
Yes, that’s the one.
Yes, that’s the one @selinakylie - the premise is that we (the carers) need to change our way of thinking and “live” in their world. I found the concept difficult at first but gave it a trial anyway and found that it did lead to less stress (on my part anyway !).
It’s far easier to agree with their misconceptions - and using “kind lies” change the conversation. When my Mum would continually ask where her Mum was (Nan died in 1954) I wouldn’t tell her that Nan had died but would say she was “at work” and then ask “would you like a cup of tea now and then we have a game of scrabble” or something along those lines. If I tried to correct her misconception and say “Nan died back in 1954” she would get very upset and say something like “No-one told me !”.
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I read it and struggled…but it is certainly a different way of looking at caring for someone with dementia and well worth a read.
‘Kind lies’, I remember it well.
When Mum developed mixed dementia, she would often regress to a time when she was at home with her parents, or sometimes with Dad (who had died some years previously). I very quickly learned not to challenge her beliefs but to go along with them. It seemed cruel to remind her that they were all long since dead because it would only result in her becoming upset and distressed, as though she were hearing the news for the first time. Far better to just to go along with it and then distract onto another topic.
Yes I went along with things my husband used to say. Where’s mom today, reply oh she’s fine has gone to the deaf club( his parents were both deaf) or oh she can’t come out in this weather. He once said his grandad was sleeping on the bed in the nursing home. He never met his grandparents. I just said ok we will be quiet and watch the TV. He was always happy enough with my responses. If he said something horrible had happened I always blamed his medication that he took it too late and caused a bad dream. Thankfully he took my word for it. Like to think he still trusted me. I always comforted myself by calling them kind lies. Hard to lie to the person I loved for over 50years xx