Please don’t shut us away in the activities room

A lazy Sunday reblog from 2012… partly about my diagnosis, and also on how distasteful the notion of being shut away in an activities room doing something truly mindless (to me) like Bingo is. Some of the comments on this blog are interesting too.

It ends by saying:

“Please don’t simply shut us away in the activities rooms, doing things others perceive we might enjoy or get meaning from. Ask us what we want, who we used to be, and then work with us rather than for us, in an effort to allow us to continue with our lives in productive and meaningful ways.”

 

23 thoughts on “Please don’t shut us away in the activities room

  1. i so agree with what you are saying Kate-i think ALL Dementia patients should be able to do anything they want to do in the room. My Grandads been in respite care this week and his respite care place is wonderful-all the staff are so nice, kind, caring, loving, affectionate, and gentle. They give him choices and they ask him “do you want to go on the trip to…today…?and if he says “no” they accept it and go “all good”…I hate how Dementia patients get forced to do stuff-when we take Grandad for a drive we ask him if he wants to go for a walk and if he says “no” we are fine with that-completely fine. All Dementia patients can still make choices and decide things. Merry christmas Kate-i hope you have a wonderful day surrounded by family and friends and if you are ever in NZ in 2018 i would love to meet up!Best wishes for the festive season and a wonderful 2018:)

  2. Hello Kate! Well said! From my experience with the nursing home my mother lived at for 18 months before she died, the problem is NOT ENOUGH PERSONNEL. The easiest, cost effective ( profit making ) thing to do is stick a group of people in front of the tv or at a bingo table. My mum did not like tv, noise, or looking for numbers on a bingo card. Every case of dementia is unique to the person. The activities at the nursing home……oh, sorry, aged care facility, were geared for people who were cognisant. There were no activities, no activity officer assigned to my mum. I went in every day and did things with her that she loved to do- fold napkins, tea towels and towels and ‘iron’ them with her hands. The tv was on all day in the living room and I used to get the carers to switch it off at dinner-time so that we could have some quiet time while we ate.
    I do not blame the carers on the floor- the jobs they had to do were innumerable; not much time left for caring, one-on-one care. It is the authorities, the government, the community that must realise that lots of money is needed in dementia care so that each individual can be cared for in a PERSONAL, INDIVIDUAL and RESPECTFUL way. I could talk about this for ages , Kate. Thank you for your blog.

    Best wishes of the season!

  3. I agree totally Kate – in fact I use the bingo analogy often as I despise the game and if anyone asks me to play it I flatly refuse.
    I would rather watch the grass grow so beware any person who thinks they know me better than me when they put me in front of a bingo table.
    I’m going to be the one chucking the boards across the table and asking for a vino!!!!

    It should be considered the basic, essential philosophy of care for people living with dementia is provision of a familiar routine including choices & preference of the person.
    This upholds a more dignified and respectful environment for the person living with dementia.
    It is the responsibility of us all to acknowledge people living with dementia as individuals, and not attempt to enforce our own sometimes rigid judgement calls, and practices, onto someone who is not interested in what we assume they will be.

    Our attitudes and methods can inextricably become duty motivated, detached, distressing, and invasive to a person with dementia, thus invade their personal space.

    I express therefore, for us to remind ourselves continually that our objectives, procedures, priorities, and routines are not essentially nor automatically those of the people we care for.

    Elimination of rights can be extremely disturbing, create distress and agitation, leading to a person feeling misplaced within their reality, with no sense of comfort or security.

    At a time when a person is experiencing the most dramatic changes in their life, they cannot be placed in a situation where who they are, and have been, becomes secondary to the priorities and demands of where they are, or who is caring for them.

    Living with dementia does not mean losing oneself or one’s humanity.

    Bingo – bah humbug!!!!!!

    L.xx

  4. I hope I never become as ‘lazy’ as you Kate I just don’t have enough energy for it! Your blogs and spirit help to keep me on the straight and narrow. Hope you and your BUB have a good Christmas.

  5. I totally agree Kate, I can think of nothing worse than being forced to do something I don’t want to do like bingo.
    The problem is that many care homes do this because they don’t think about the fact that we all like different things from life.

  6. I believe it is very important to share with your family how you wish to be treated and what activities you wish to participate in very shortly after diagnosis. Some people document this in writing. I know others who have documented this in a video. But the important thing is to let your family know what activities you wish to participate in and how you want to engage with others while you still can. This should prevent being tossed into activities or conversations that you would not want to engage in if you had the choice.

  7. I think that it is very important for a person living with dementia to clarify early in their diagnosis how they wish to be treated in the later stages. This can be done in a variety of ways. Some people wish to fill out a “my wishes” document. Some people I know have chosen to make videos to this effect. I believe this behavior should be encouraged so that people living with dementia can continue to be treated as they so choose even when they can no longer vocalize it.

The only thing missing in this global conversation is YOUR voice... Thank you.

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