Normally I am very happy with the sheltered housing where my Mum lives. The flat is lovely, she can have some pots on the walkway outside her front door and sit out there in the nice weather (as we have this weekend), people are reasonably friendly, though as always there are those that don't like seeing someone not so well and avoid us, but generally it's all quite friendly and works. She has excellent carers and the 1:1 time they give her could never be replicated in a care home.
However over the weekend there have been a few of those well meaning but thoughtless comments from members of staff "I am not one of those who thinks your Mum should be in a care home"(so by inference some staff think she should be) "I don't like that carer, why don't you change agency, there's a new one just started up" (that carer happens to be one of the best carers there is, just doesn't like to do small talk with the housing staff and has this woman ever tried to find good reliable carers, they're not quite as rare as hen's teeth, but when you get good ones you keep tight hold) to a fellow resident "don't you think your Mum would be better in a care home". And of course the perennial favourite of everyone "I know what it's like, I looked after my Mum" (I don't want to underestimate what anyone goes through looking after a loved one, but I very much doubt they know anything about what "it's like" looking after someone with PSP) Why do these people who don't even know what's Mum's condition is, let alone know what it's like for Mum feel they have the right to judge how Mum choses to live? Arrgghhhhh!
Part of me wants to challenge these people and put them right, part of me just wants to hide in a hole. I know I am very tired and prone to being a bit overwrought at the moment but PSP throws enough at us all without "good intentioned" interferers.
I will try to smile sweetly (through gritted teeth) but sometimes I just want to throw a wobbly! How do other people deal with these folk? What are your coping strategies?
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AJK2001
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PSP demands that we either put on boxing gloves or develop a Rhino hide! There is no easy answer to this.
I take it your Mum is living on her own, with carers coming in. That's brilliant, long may it last. Unfortunately, we know it won't. Perhaps others have see a deterioration that you haven't seen through the fog of tiredness, or because you see her all the time. I know this happened a lot with Steve and me. Take a step back and really look hard. If you can't see anything different, then tell them to take a hike!
I definitely need the rhino hide ! Mum is doing very well considering, she has carers in 6 hours a day over 4 visits and I spend the afternoons with her. The carers are very good and bring things to my attention as needed and have arranged OT reviews to get more equipment in, plus excellent support from our Community Matron, so if I was to miss something I think one or other of these groups would let me know in the right sort of way. This was me taking Mum down to the lounge for a hot cross bun and a cup of coffee and people who don't know Mum's care arrangements seeing her sitting in a wheelchair & needing help with a drink.
I get “I don’t know how you do it.” My reply is neither do I. I do it.
You're doing a brilliant job. No one really knows what it is to care for someone with PSP. Family, friends flit in and out, make suggestions but they don't really know....
We have a wonderful team of carers who are all local, reliable and absolutely brilliant, so we feel very blessed, long may they last.
Hiya. Hope it helped to rant. I love your other 2 replies. I agree with Jeff. I don't know how I do it but somehow I do and it really is no one else's business apart from your wonderful carers. Have to discussed whether your Mum's needs have changed with your very reliable carer. She is the one who will give you the best observation. We have just lost one of our evening ones and trying to get another is almost impossible. Good luck and big hugs AliBee xx
The rant has helped :), I try to be positive but these comments from people who don't know Mum at all well, just really got to me. I get on well with Mum's carers and see at least one each day and in addition to their notes we have a note book where I might tell them what Mum would like for her lunch and they leave me suggestions about all sorts of bits & pieces. They have far more experience than I and if they can suggest something that may help, I'm only too happy to try it.
I feel for you losing a carer, it is so hard to find replacements, Mum lost one earlier in the year and she was really down for a couple of weeks because Jolly Dolly (she was actually called Jackie but Mum comes up with all sorts of names these days, anything other than the right one) had left. Luckily now she has got used to things again but change does upset her. xxx
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