Nobody listens!

Dramatist

Registered User
Sep 1, 2006
8
0
Rye, East Sussex
I am 50 years old and in a wheelchair. I can neither stand or walk. I live with my 83 year old Mother. She is a widow who hates all doctors, refuses to take any medicine and, due to her dementia, she has become an alcoholic. She has a drink, forgets about it, has another one and so on and so on. This is now starting in the mornings.

Because of my own condition, I am in close touch with the medical services but, because we live in a small country village and because we have no access to transport, whenever I try to get help, they just don't want to know.

"Go here, go there, go to this group, join that group" they tell me but since I cannot get out of the house, these things are impossible.

Mother's dementia is in its fairly early stages at the moment. she can still do the Telegraph crossword (the cryptic one) in less than half an hour but she does not know what day or month it is neither can she remember the name of our new dog - new since two Januarys ago. He gets called all the names of dogs she has had since 1940!

She has become fiercely protective of her house and her land and, as a result, has managed to alienate both of us from all our neighbours.

My only close friend lives 50 miles away and my two half-sisters (not my mother's children) live 300 miles away in the North. Mother resents them like hell and thinks that they are just waiting to snaffle her money when she dies. (rubbish!)

The worst thing to live with, though, is the drinking. When she is sober, she is still almost rational but when he is drunk......God help me! If I try to say anything, I am told that we have no fun, no life and how dare I suggest that she stops her 'only little pleasure'. - And if I have to live through the story of her father's death in 1927 or her WW2 or her horrid racist views for much longer without help, it might just be me who goes totally mad first!!!!

Sorry to winge!
Jonathan.
 

Áine

Registered User
Feb 22, 2006
994
0
sort of north east ish
hello

hi jonathan

the first rule around here seems to be "don't feel sorry about whinging!" ... coping with dementia is hard ..... and it inevitably happens within a context of already difficult stuff. there were stories my dad told ... endlessly ...... so that I felt like if he told them again I'd just end up screaming ............... it happens

..... and perhaps if I realised I was in the early stages of dementia i'd end up drinking too much too . not that that makes it any easier for you.

it's so confusing isn't it when someone can do something so apparently mind-taxing, like the crossword, but can't do the apparently most normal/easy thing of remembering the dogs name. my dad could put up a good show to social services and convince them he was OK and didn't need anymore help ...... but at the same time struggled with what I thought were the most simple tasks ... like locking the front door, answering the phone etc.

we were in a big city .... but they still didn't really want to know. maybe you just have to keep on keeping on and phoning them and saying it's not OK and you need help and you can't manage, and things really aren't Ok .... etc etc etc until they take notice. I take the chaos rather than the conspiracy view ..... and think that social services are basically willing to help but are so snowed under that you have to persist.

It might be worth trying (perhaps you've tried plenty already) to explain a little to the neighbours so that you're not completely isolated.

you've come to a good place for people who're not able to "go here, go there"......... one of the great things about TP is that you can access us from just where you are.

best wishes
Áine
 

Amy

Registered User
Jan 4, 2006
3,454
0
Hiya Jonathan,
Welcome to TP - and don't apologise about a 'whinge' -for a start it wasn't one, and it helps us get to know you a little. Sorry, can't really say anything constructive, other than you have found a place where someone will always listen-so once again, welcome.
Love Helen
 

Dramatist

Registered User
Sep 1, 2006
8
0
Rye, East Sussex
Thanks

Thanks both! At last, people who listen. Perhaps I am going mad already - I missed the h out of wHinge, I didn't notice it when I proof-read it - and I am a professional writer!
Cheers,
Jonathan.
 

Kayla

Registered User
May 14, 2006
621
0
Kent
Hi Jonathan!
I have a friend who is also in a wheelchair. She sometimes writes for a magazine called "Wheelchair User's Journal". If you don't know about it already, I could try and find the internet link. Have you considered moving to sheltered accommodation in a town? It must be virtually impossible for you both to cope in the country without transport, or do you have a good network of helpers?
Kayla
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
The first question I would ask is - how is she getting the booze? The second would be - what does her doctor say? Alcoholism combined with dementia must be terrifying. While I feel for your mother, your safety is important too. Have you considered moving out? As someone who is wheelchair bound you are rather more vulnerable than someone who can easily get out of the way. I don't want to sound uncaring, but you have the right to a life as well.

Jennifer

P.S. Why don't you have access to transport? What part of the country are you in?
 
Last edited:

Dramatist

Registered User
Sep 1, 2006
8
0
Rye, East Sussex
Answers

Ok, here are a few answers to your questions. No, I do not have a network of helpers, good or bad. I am totally alone.

How does mother get the booze? She makes me order it onlline from Tesco. If I failed, I would be disinherited and would have nowhere to live in the future.

Because of my situation, this is my only home and I will inherit - minus death duties. Without it, I would be on the streets.

If I moved, nobody would care for mother. She has alienated herself so far that even the rest of the family don't want to know. there is only me - and I want to escape but can't!

The rest of my family keep terlling me what a 'bitter old ****' she is..... but I love her, she is my mum - and my dad, a senior executive with ICI was a fine man. He didn't make a mistake. While he was alive, she was fine. She crumbled after he died in 1985. (He was 20 years older than she was).

In 1997, I picked up a rare virus which put me in a wheelchair and which lost me my relationship - I was on the verge of marrying but the girl's family decided that there must be a weakness in my bloodline and forbade her to marry. I was devestated!

Meanwhile it is 9.49pm on Saturday. mother is ****ed and I am ever so lonely again and writing this as therepy!

Oh hell!

Jonathan.
 

Amy

Registered User
Jan 4, 2006
3,454
0
Hiya Jonathan,
Good to hear from you again, sorry that you are feeing so bad - but as I said last night, there is almost always someone here.
What is it that your mother drinks? Could Tesco's accidentally forget to deliver it? What would be the repercussions? Could you water it down, so that it acts more slowly? Have you spoken to mum's GP about the combined problem of alcoholism and dementia?
Though the rest of the family has been alienated by mum's behaviour, could you not persuade them to give you more support, for your benefit?
I think that you need to talk to your GP and make them see that you need support - even if mum is not going to accept help for herself.
On a lighter note, what is it that you write?
Love Helen
 

Kayla

Registered User
May 14, 2006
621
0
Kent
Hi Jonathan!
It doesn't seem right to me that you have to put up with this situation as you are very vulnerable and so is your Mum. Alcholism is very difficult to live with-I know because we have a friend whose husband was an alcholic and he came to a very nasty end.
There are on-line groups for wheelchair users and disabled people. You must try and get out of this situation. You are not necessarily the best person to care for your mother, as you are in need of assistance yourself. Sheltered housing for both of you would be best, so you each had your own space. I'm afraid alcholics can only be helped if they really make a determined effort.The combination with dementia sounds absolutely lethal to me.
My wheelchair user friend has a very positive attitude to life and lives independently with the aid of a team of personal assistants. She is also still able to drive and writes fairly seriously too.
Kayla
 

Norman

Registered User
Oct 9, 2003
4,348
0
Birmingham Hades
Hi Jonathan
don't ever be lonely,there is always someone of this big TP family around,day and night,they are happy to talk.
You must talk to your GP,he/she is the gateway to all help.
Have you thought what will happen to Mum if you get ill,no carer!!
Sorry if I sound like your Dad,I do have a Son older than you .
Please talk to your GP.
Best Wishes
Norman
 

mel

Registered User
Apr 30, 2006
1,656
0
66
Sheffield
Hi Jonathan
just caught up with your thread......reckon Helen's got the answer in watering down the booze....and yes as far as Tesco goes you could always try saying they're temporarily out of stock and they didn't send a substitute(I do my shopping online too!!)....however you'd probably still get into trouble!
Don't feel alone...you've found us now....:)
Can the rest of the family try to get involved for your sake....its so hard coping with a dementia sufferer alone.....I only did it in short bursts but I know how lonely it feels
love x
 

Dramatist

Registered User
Sep 1, 2006
8
0
Rye, East Sussex
Amy,

It's gin and I water it half and half! I have tried a 'failed delivery'. It was a nightmare. My life was hell until the situation was remedied - more watered gin!

Recently she has added brandy to the act. At last count she was drinking 70 units a week - even with the watered gin!

Jonathan.
 

nice

Registered User
Aug 24, 2006
17
0
Dramatist said:
She is a widow who hates all doctors, refuses to take any medicine and, due to her dementia, she has become an alcoholic. She has a drink, forgets about it, has another one and so on and so on. This is now starting in the mornings...

She has become fiercely protective of her house and her land and, as a result, has managed to alienate both of us from all our neighbours....

The worst thing to live with, though, is the drinking. When she is sober, she is still almost rational but when he is drunk......God help me! If I try to say anything, I am told that we have no fun, no life and how dare I suggest that she stops her 'only little pleasure'. - And if I have to live through the story of her father's death in 1927 or her WW2 or her horrid racist views for much longer without help, it might just be me who goes totally mad first!!!!

"Whinge" all you want matey, and I'll gladly join you :D My mother has VD and started to drink about two years ago. It's now not uncommon for her to have brandy for breakfast (dear God) and she'll do as yours will and forget she's just had some and pour herself another. It intensifies her condition and she goes into FULL rant mode...it ain't pleasant.

So don't you dare label yourself a 'whinger', you have to express all the stuff that you go through in this situation and get feedback from others, it helps. And at ALL costs, try and preserve your own sanity because it IS on the line! lol

Treat yourself as well as you can, it helps to sustain you.

GL.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Dear Jonathan

I do wish there was some way in which we could help in a practical sense, because the situation you find yourself in is awful. However, there isn't but perhaps the following ideas might help, although some of them may sound rather callous, so apologies in advance and no offence meant (to you or anybody else).

Has your Mother actually been diagnosed with dementia? Because eventually she'll get to a point where she won't be ABLE to disinherit you. AS has a fact sheet http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_financiallegal.htm

Do you think she has dementia and alcoholism, or is it alcohol dementia (aka Wernicke-Korsakoff Syndrome)? You mention that she can still do cryptic crosswords - thats not uncommon with alcohol dementia.

Have you investigated your local dial-a-ride service for transport? I recognise that these sound better in theory than in practice sometimes. What about the motability scheme http://www.motability.co.uk/? If you get the higher rate mobility component of disability living allowance you can transfer that to them and get a "contract hire" in return.

Have you talked about your own situation with your own doctor? Sometimes we protect the one we love by putting on a good face, but it's not helpful for anyone.

I am so sorry about former girlfriend. People can be pigs. If there's problem in any blood line it would be in one where they are so narrow minded. Having said that, though, - Forbade? Perhaps there is a cultural issue I'm not aware of here, but barring that, no woman worth the tears would put up with kind of dictum in this day and age.

Speaking as one 50 year old to another (except when my Mother tells people I'm 60 :eek: ) I have to say we have much more life to lead. I don't have your health issues it's true (although I've had both breast cancer and ovarian cancer) but 50 is nothing nowadays. I can't even imagine how difficult your situation must be, but sacrificing yourself for the sake of your mother is not a good idea.

Again, I hope I haven't offended you.

Regards

Jennifer
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
Useful link

Really sorry to hear about your situation. I have found a link below that may be of use to you - I think it is specific to the area you live:

http://www.eastsussexrtp.org.uk/CTD_ESDA.htm

Also in this website it confirms that dial a ride is available for Rye - for ease I have added below the link to the relevant page for you - if you scroll down the page it will take you to Rye and District Community Transport - the contact details are contained there, 24 hours notice is required for the dial a ride.

http://www.eastsussexrtp.org.uk/CTD_Rother.htm

I hope this helps.

The only other suggestion I could make is rather than gin or brandy would you be able to order non-alcoholic beer or wine - it tastes practically the same as alcohol these days. Perhaps order it and state it is a substitute (for the gin/brandy) ?? Perhaps you may have already tried this?

Stay in touch - if I see anything else on the web I will post it for you.

Take care
Gromit
x
 

magpie

Registered User
Jul 21, 2006
25
0
Bradford
Drinking

The problem with drink is one that has been troubling my sister and myself for a while. Mum has always had 'a couple of whiskies' at night. Trouble is, now that her memory is gone, once her glass has been used, it's always the second glass, over and over until the bottle is empty. You can think, well, why shouldn't she enjoy herself, but can't help but worry what might happen to her whan she's blind drunk, at home, alone, or worse still wandering out looking for another bottle.

We've tried everything so far suggested to cut it back, without success. Watering down helps - but only if you can manage it for every drink, and unnoticed. Non- alcoholic drinks - she's confused but not that daft! and anyway, she buys the whisky herself - she still goes shopping - but she also has it delivered by the lemonade man! So there's little chance of controlling her supply, while she's still independent.

The best way of being seriously attacked by an alcoholic without AD is to suggest they might moderate their drinking ever so slightly; mum's reaction to advice on intake is the same only more so. She was always a nasty drunk, though it didn't happen often in the past; now it's nastier and oftener! She swears she's only had two drinks and how DARE we accuse her of being tipsy!

Last time she went to the memory clinic we asked, in front of her, and rather pointedly, whether alchohol and Aricept might not mix, but unfortunately the doctor did not take the hint and blithely told her there was no problem at all with the small amount she claimed (to him) that she drank. We'll have to have a word with him privately - but then she'll forget what he's said the minute she leaves his office......

This isn't much help to anyone, is it? I suppose it's just a rant about a problem we can't solve and, quite honestly didn't expect as part of all this.
 

widget

Registered User
Jul 18, 2005
44
0
Lincs
Hi there Jonathan I hope you're well today.

I'm afraid i can't really offer any advice on the alcoholism bit but i'm also disabled and thought you might be interested in joining the BBC's OUCH! disability forum. The link is http://www.bbc.co.uk/dna/mbouch/

On there you will find all walks of life and people with all types of disabilities with discussions from the 'Beyond Boundaries' programme to music to politics to news to the online pub 'The Cane and Able'

In addition to TP you'll find that you're most definitely not alone and there will always be loads of people who can advise on ways to tacle certain situations and even the medical profession and social services.

Hope to see you there sometime, but in the meantime good luck with whatever you try with your Mum. Just an idea - can you block certain websites (eg Tesco, Sainsburys etc) so you can just show your Mum that the website isn't working - but make sure you've got enough food in first!! If you can do this to stop children access certain sites i'm sure it could work in the same way for you just so that your Mum can see you're not just making it up.
 

widget

Registered User
Jul 18, 2005
44
0
Lincs
Lol! Course not Nada but i must admit that there are some who are 'virtually' drunk in there morning til night...!;)