Hi
78 year old mother, widowed 13 years ago, lives alone about an hour's drive from us. Has had various acute illnesses over the past 7 years (two separate lots of cancer, both in remission) and many many chronic illnesses (IBS, COPD, Fibromyalgia, bladder problems and - since Christmas - Wet Mavular Degeneration) that have all been ongoing, over many years. So she has had a tough ride.
I am an only child (well half siblings, but none with any responsibility to her). So the buck stops here and has done for the past 13 years. She has now given me Power of Attorney (because of her uncertain health).
The last 6+ months have been particularly hard because of the Wet Macular Degeneration. Despite treatment as quick as possible - in a not so perfect world - her eyesight is very bad. She hasn't been able to drive and won't again. This has massively effected her independence. The last few weeks have finally managed to encourage her to take a taxi to the supermarket: to get her out of the house - otherwise she doesn't tend to leave the house (despite living on a lovely marina with a corner shop, postbox and little cafe within strolling distance). Cannot encourage her to be sociable beyond a couple of neighbour's (but she is rarely sociable with them).
Anyway, my problem is her eyesight. I ask her "what can we do to make things better" - she says "make my eyesight better". The Consultant says that it is as good as it will get (the fluid is gone, but her retinas are scarred). So she can't drive, she really struggles to read, she really really struggles to use the computer, she struggles to read applicances, she struggled to write (and read it back to herself). Her short term memory is going, so her answer is to write everything down (which she struggles with and then can't read back and I can't read it either). She keeps papers in piles - lots of piles where she can't find anything. She - I found out yesterday - has 3 notebooks on the go (identical): she can never find the right notebook or what she wants in a given notebook. She sends me emails she can't read and asks me what she needs to do: I read, them, tell her she needs to phone a number (she writes down the number in a notebook or in a random piece of Peter in a pile) and tell them "X" (which she also writes down). 3 days later she has asks me about the same problem: she can't remember asking, can't find the notes etc.
When I speak to her (every couple of nights) she is always complaining of eye strain, being really tired and falling asleep in odd places (like on the stool at her dressing table).
It turns out that one of her notebooks is her "business notebook": she is a director in her apartment block's residents committee. I looked through it and it has random things scribbled ("such and such in number 58 complained about this" etc). This is virtually all done with emails (which she can't read at all easily or reply to easily) and her making notes in one of her three notebooks (which she can't find stuff in or write in or read easily). There are also piles of letters regarding the management of the block (they have a management company). I have asked her repeatedly to cut down on this responsibility. There are two other directors (both able): I have suggested that she pass the admin on to them and just sits in an advisory capacity (so helping the other directors by just talking with them - on the phone and in person - and not dealing with ridiculous amounts of letters, emails etc).
Other things that I have suggested are:
- really cutting down on emails and online things: doing as much as she can by phone (she is perfectly fine on the phone).
- getting down to ONE notebook and always keeping it in the same place.
- having something like a whiteboard (larger than paper, more prominent, one "go to place" for urgent "to do" notes) - so she is not always looking for notes on odd bits of paper that she looses.
And various other ways to "simplify things": so she can concentrate on the important things and see the wood from the trees and have less to remember and focus on.
Mum is a complete technophobe. She has done well (although this was many years ago she learnt) to do email and online banking (although that has recently gone bad because NatWest have apparently changed their online banking interface). But she really really struggles with learning new things or applying knowledge.
But she won't have any of it. She is adamant that she will "struggle on" (with her tiny magnifying glass and torch) and do things she has always done it. I am being nasty and aggressive for suggesting otherwise (I checked with my son later, who was with me yesterday, and he said that I wasn't - I really wasn't, I was very diplomatic and calm).
The upshot is that she is cross with everyone (The Consultant for big returning her eyesight, the optician for making the wrong glasses that didn't help, the neighbours for various reasons, me for suggesting she does things differently). But then she always has been: even when I was a child, she could never be wrong and I have never ever heard her say "sorry" in a sincere way. She has a brother, but hasn't spoken to him in 20 years (because, she says, he was cruel and nasty to her - I actually now think she means that he didn't agree with her
).I just hate it at the moment: my mum is complaining a lot and is obviously down and depressed, but every attempt to help her or help her help herself is shot down. I just see her hitting her head against a brick wall, many times on a daily basis. It was the same when Dad died (any attempt to get her socialising again was shot down), then both times she had cancer (couldn't get her to accept help - apart from by me - either physically or emotionally). Even her Respiratory Consultant said to me - last time we saw him - "can you encourage her to use some self-preservation". Bloody hell I have tried, so much
. She insists on "struggling on" literally and then "voicing it" ("mum, try x to make things easier", "no, I will STRUGGLE ON!!!").Sorry to ramble so much.
