When a family member visited hubby in the nursing home ( the one and only time) the comment “he doesn’t look as bad as I thought he would so you are ok now aren’t you”
No I was not ok! Watching my lovely husband deteriorating and feeling a failure because his needs were complex and he couldn’t be at home. At the time I was scared, wondering how I was going to get everything into order, going through ambiguous grief and so on.
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Oh boy some people just don’t get it do they? Complete lack of understanding yet if they were the one Caring they would probably be demanding empathy, consideration, constant help…
I always TRIED to understand and be considerate but til the shoe drops and you are in this situation NO-ONE can properly grasp what it is like
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“OK” - as in having your heart run through a meat grinder constantly.
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Precisely that ! I have lost count of the number of times a certain best friend has said that Graham is fine and I need to chill out about things…
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We had a few interesting ones when we were trying to get Mike diagnosed with autism, at a time when that was an immense challenge. One was “It’s just a phase he’s going through.” Another was “He’s just going through the terrible twos.” Before he’d even reached two.
Best of all was the reaction from Gill’s Mum when we told them Mike had been diagnosed. She did a sort of Ena Sharples thinning of the lips, clasped her hands (Ena Sharples again), looked me in the eye and said: “Well, it’s not on OUR side of the family!” And that was pretty much all she ever had to say about it.
To be fair, though, she was half right. It’s on both sides.
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Oh an “Ena Sharles” look - THAT devastating !!!
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Fortunately I’d gained full immunity by then.
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Just once, M went on a residential playscheme, said to be 5 days but it started after mid day on the Monday and ended about 10.30 on the Friday, so only 3 whole days without him. I spent it frantically trying to catch up on the backlog of work, or should that be mountain of work, outstanding.
At the post event “wash up” meeting, looking at how to improve it, I said it would be great if it was Saturday to Saturday so we could go away with our normal son, who never had a proper holiday with us.
I was told that wasn’t possible, as it would make the volunteer staff (university students doing social work related courses mainly) “too tired”!!!
So it was OK for us parents to have to care for our children for 362 days a week without a break, but not for young fit students?
Another time the same stupid woman told me that M couldn’t go on the same holiday the following year as he had to “take turns”. She had just come back from a long holiday in the Caribbean, brown as a berry.
Later, she took M off all the respite options list to punish me for daring to go to the LGO. As a result, I ended up so tired and ill, 14 lots of antibiotics in 12 months, that she was told by my GP that M must go into residential care, boarding at school, as I was so ill.
I only worked at recently that I only had 3 full days off from childcare in 16 years, when I was having a hysterectomy.
I asked once for a playscheme to take my eldest son as well, when a trip was being organised for M and his friends to go to Marwell, which my eldest loved, but was an hour away and expensive. I was asked “Can’t you even look after your normal son now?!” M went to various events like this. It was so hard on his brother.
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Complete lack of understanding or Carer Fatigue and no empathy or even awareness of you being in an exhausted state. What a wonderful woman to be in charge of such a scheme!
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and no thought for M’s brother.
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Precisely - what a ‘silly’ person !
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Head of Childrens Services for the area though. The silliest part of all this is that whilst she was being so horrible to me, I was the parent rep for the same area on the Disabled Children’s Strategic Planning Group for the whole of south west Hampshire, alongisde the Heads of Health Education and Social Services! I had my mileage paid, but my request for a form of Attendance Fee was not allowed. I was told if they paid me that it would take vital money away from disabled children! For several years parents were told that Hampshire had closed and was going to sell a children’s home to free up money for local respite services in the New Forest. Then they discovered that the home wasn’t actually theirs to sell, it belonged to Southampton City Council!!
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Charles, that is such an accurate description which I’m sure many have felt
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Something similar happened over some land the Leicestershire County Council hadn’t realised was not theirs. It was a strange situation: they’d built a children’s care home in the late 60s/early 70s just inside the Blaby District border. The allotment land next door was owned by the City Council. But the County Council didn’t know this, and had “borrowed” some of the land to make a decent garden. At a meeting to discuss our interest in the now abandoned building as a care home for people with autism, the Blaby District Council rep dropped this bombshell and I had the job of dealing with the City Council because Blaby hadn’t noticed, nor had the County, and they were too embarrassed to mention it to the City!
It took 6 months to sort it out, but we got it.
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The one I dislike most is when you get “You’re doing a great job”
And inside you want to scream as you just smile when all you want to say is yes I am, but I need some of you to muck in and do the great job with me,
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Hi @EssEmmDee
Totally!!! Hear you!!!
Thanks for posting. lots of people love to review, criticize, or add their ‘2 cents’ brilliant ideas but very few actually muck in…worst is when they finally do Those kinds of people want huge recognition and praise and/or they create MORE stress e.g. do it their way versus fitting into the care-routine/set up you’ve got going…
(nerve struck!)
These days my poker face is less poker…my eye rolls are legendary!
Also…from many many ‘tries’ I’ve set some big boundaries, regardless of who it is - ending in some ‘natural attrition’ of ‘well intentioned’ (I want to look good-ers) to now having some VERY reliable, very accomodating naturally kind -hearted souls who…and this is the term I like
‘meet us where we are’ not where they’d LIKE us to be
Our Tribe is small but strong
Hop on over to Roll Call or start a fresh topic to share more about yourself and your caring situation, if you’re comfortable doing that…Welcome!
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EssEmmDee
Welcome to the forum
Oh I understand that one! I was told"you are doing marvellously " . Inside I thought if I am it’s no thanks to you.
Also a comment was made that I must be ok because still putting a little make up on and keeping myself tidy. What’s wrong with still having some pride. Probably if I hadn’t bothered would have been said I was letting myself to pot Carers including ex carers can’t win.
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Totally agree charles, when my son was diagnosed with autism i had the comment from the family " well its not from are side of the family" who cares about what side it has come from, at time all i could think about was my son and how we were going to do this on are own.
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My son was brain damaged at birth, not initially diagnosed. We also had “it’s not from our side of the family” from both sets of grandparents, so hurtful. Neither set ever had my son to stay, in fact for the first 16 years of his life I had just 3 child free days, in hospital having a hysterectomy. Then I was so ill residential care was the only option left.
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