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Discussion in 'I care for a person with dementia' started by Toddleo, Apr 28, 2016.
All the above , plus if you have a 'spare' half an hour - trying different ways of engaging/ entertaining/ stimulating the PWD e.g. Finding repeats of Antiques Road Show on TVs, singing along to old songs on You Tube, colouring , painting, looking at picture books. NONE of which are how you want to spend your day !!!
Lowering the tone slightly:-
As soon as PWD is having a nap instead of taking one yourself you spend your 'free' 40 minutes trying to work out what the hell they did to the loo to make it behave like it is.
(As mum intermittently cat naps) creeping and rushing through housework and chores as quietly as possible lest you wake the sleeping lion, which inevitably leads to extreme neck/back tension, a constant state of high alert and clumsiness (noisily dropping something just at a crucial point in the job and/or cutting/bruising oneself in haste).
This really resonated with me...
I'm in a similar position and am at the stage where I am going to have to say to siblings that we should consider a home or at least some carer help for Mum. I anticipate stiff opposition from all quarters. I get the "Mum's fine", comment from siblings and I never know whether to laugh or cry!
Perhaps one or two more for the list
Ensuring that the PWD gets some physical exercise (i.e. walking around the block at a snail's pace) and mental stimulation - providing a continuous supply of books (not sure how much she really reads) and outings)...
I am of the opinion that those who are not actually doing the caring should not really have any say whether their relative goes into care or has respite. I am clearly not as fair minded or considerate as you guys. But when MIL needed a home, we TOLD BIL in the US that this was happening rather than ask his opinion. Sure, he was not very happy at the time but as he was never going to come over and look after MIL he had to accept it.
I spend every day being a companion/entertainment manager etc as other wise depression sets in and my mother in law will sleep and talk about being a burden. sometimes a great deal of time is spent in explaining things and persuading her to do basic things such as washing as she doesn't see the point. Such a lot of time goes and nothing much is achieved, but the whole point of caring for mil at our home is so that she is cared for, and feels valued. Yes there is loads of washing and cooking and everything else but that's what being a carer is all about. I think....
I found myself going “me too”, as I read a lot of the wonderful replies. The other day when I responded, I wrote a checklist of what I do and there was a reason for my response.
I am certain you have all had your experiences with the relative who announces (usually when there are others around) that they would always help. In my case, my sister announced at Christmas dinner that she would of course help me look after Mum. As there was a public holiday coming up, I hoped my sister might spend a couple of hours with us allowing me to catch up on some much needed sleep. She refused to come, telling me that she hoped I wasn’t going to make a habit of it as she was busy with a job and family to look after. While I feel silly for having asked, I feel guilty for asking as my sister hasn’t been to visit or even rung Mum since.
The second part, the detailed list, was due to another family member. My mother’s step sister is one of those people who seem to know someone who can bring influence to bear on matters – which is not always a good thing. The short story is that she felt I wasn’t doing too well at my job of caring for my mother. She had arrived unannounced one day to find Mum having a sleep and me beside her also asleep. Mum is active – all night. Her sleeps through the day are short but seem to work for her. If I am not with her, the house looks as if it is totally wrecked instead of only a little bit. She looks for things and people constantly. And of course has to go through everything to find what she is looking for.
Anyway, Mum’s stepsister caused a huge amount of trouble because she had flagged that Mum was at risk and she could see that I obviously did little for Mum because the house was untidy and there were other little gems she had stored away to relate to someone in authority. In the first few hours after two police officers, a social worker and some other health dept rep had descended and then departed, I sat down to write up a list of all the tasks I did.
Fortunately it fizzled out quickly because 4 months previously, Mum had been admitted to hospital twice within a few weeks. The hospital social worker along with other various staff including a nurse, an OT and a physio had, through a “hospital in the home” program, thoroughly gone through Mum’s home situation. While the social worker was on holidays at the time of the intervention, it was able to be easily established that I was taking care of my mother, and the best part was that the same social worker had advised me to catnap through the day when Mum slept. All of them had observed Mum’s capacity to take our home from neat to disorderly.
Had I not had the support of these local professionals, plus our neighbours, it would have been a time of great trial. I have not got rid of that list, because it serves as a reminder of just some of the tasks that are involved in our job description as carers for our loved ones. And, whenever anyone asks me what I do all day, “I’ve got a little list …” Obviously, there are some things I have left out that need to be added
Sorry, I have rabbited on long enough.
Far from it boronia, I read that last para with my jaw on the floor, some things just beggar belief don't they. Keep on listing I say!