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I have to agree. People seem to think living to 90 - 100 is always something to be celebrated, but for me it is almost the opposite when the person is in that sort of state. With other illnesses, there may be more physical impairment, such as being bedbound, but the person can still do things such as read, watch TV, listen to the radio, write and receive letters, phone people, look at photos, have conversations with visitors etc etc. However, at late stage AD, when this is not possible and you don't even know who you are, can't communicate, are doubly incontinent and need 3 carers to change you, what is there to celebrate about reaching your next birthday? My father, 85 next month, has been like this for about 3-4 years,(having had AD for 6-7 years before this stage) is otherwise pretty healthy, still mobile and (just about) able to feed himself, but the decline is so slow I dread it going on for another 5 or more years.TBH I sometimes think a swifter decline is more merciful, both for the sufferer and for the relatives. Since she has been in the CH - nearly 8 years now and she was very bad when she went in - I have seen so many other residents decline and go. The staff have said so often that a fall or some infection that would have been the beginning of the end for so many, just roll off her.
I know she is not aware of her condition any more and has not been for ages, no more than my little granddaughter of 12 weeks is of hers, but that doesn't stop me wishing she would not have to go on like this, when I know how appalled her former self would be. But I do find it hard not to glue a smile on and not make some 'negative' response when anyone - even the CH staff sometimes - say brightly how amazing she is and the way she's going she'll be getting one of those lovely cards from the Queen! They say it as if it's something we should all want and be hoping for. And I wonder whether I am somehow weird or unnatural because I don't, not at all. Maybe it's just that 'manners' and rules of behaviour make them say such things when they are thinking the opposite - I don't know - or whether they really do think it's wonderful to go on for ever in such a pitiful state.
Sometimes I am even bad enough to wonder whether the CH actively want to keep her going as long as possible, because she is self funded and therefore pays more than many of the residents, and I wonder whether if I let them know how I feel they will think it's because of the money. But it makes no difference to us at all, since my sister who has P of A was prudent enough to take out an annuity, which with her income will take care of the fees for as long as necessary.
Sorry, rhis has turned into a rant/ramble - I will shut up now. Gone 9.30 and I'm not dressed yet.
We have the old style P of A, set up and activated some years before she went into the CH and I'm pretty sure it's just for finances. I don't have it anyway - it's my brother and elder sister.I think this is where your LPA h&w comes in handy. Tell them that if she refuses, do not force. Mark you, it's difficult. OH is occasionally given drinks in one of those spouty cups, but doesn't realise that you have to use the spout, tip the mug up, then suck. Three things to get wrong. On the other hand, if you give him apple juice in a glass, he will drink all of it. He did try and drink from the covered water jug yesterday!
It's a fine line we tread!