Your opinions to help us decide....

Boredhousewife

Registered User
Dec 18, 2012
83
0
Hi all. My Mum has Alzheimer's. She's not too bad when you talk to her, still with it and intelligent but because of her personality and the disease cannot look after herself at all physically. She has always been what I call "professionally useless". Passive aggressive and needy. She has always used a fake inability to cope with things for herself as her excuse to make people come round and pay her attention. This is now coming back to bite her in the bum in a massive way but true to form it is not her who seems to end up with the responsibility for sorting it out. My brother is an invisible and me and my sister live 80 odd miles away, in opposite directions. Her friends have abandoned her because they can't face her ex. My sister has her own problems, so it is left to me to try to sort this stuff out while Mum's ex, (my Dad) does the day to day things and babysits her all day as he lives nearer. He wont relinquish this duty despite us trying to get him to and Mum telling him she wants him to leave her alone. He just keeps coming back.
Anyway. She cannot pyshically dress, wash, use the phone or the TV, lock or unlock the doors, open windows, make herself a cuppa, or even a glass of squash. She can't even make a bowl of cereal. She hasn't done any housework for years. More years than she has had dementia! If it wasn't for her ex and the carers looking after every single aspect of her life, if she got her way and they all left her to "control her own life" she would starve in her own filth. She wants them all to go away as she feels she isn't allowed any control in her own life, she is sick of people controlling her life for her. Angry with it, sick of it and getting very beligerent and even suicidal over it, specially having to have her ex round all the time. She hates him but is too scared to tell him to go away and mean it enough so that we can get the police involved. She complains about him *constantly* but will not allow us to do anything about it in case he finds out she has gone against his wishes and takes revenge on her. She talks of murdering him.
Social services have recommended that she needs to be in residential care as the one person (other than carers) who looks after her, is her formerly very abusive ex. BUT. She looked round the local, very nice, care home and she really doesn't want to go. She would be the youngest resident by far as she is only 67. And comparing her level of dementia with the others, they were all far more advanced than her too. She would get one room to be private in or have to sit in a room full of (being brutal) drooling, incontinent, snoring, seriously demented and very old people watching nothing much on TV in the residents lounge. She hates the thought of that and so do I, being honest. But she has almost no choice left, thanks to her refusal of all the other choices we offered her. I don't know what to do, short of just bailing on it and looking after my own sanity. Please can you give me your opinions and advice so I can maybe see a way out of this awful cyclic conumdrum I am in. :confused:

PS we tried her living with me. She made it to 4 days before we mutually decided it was a horrible decision. She can't stand all the attention I have to pay to my kids, pets, boyfriend and job. She threw a wobbly on me on Christmas day and my boyfriend has said, categorically, NO. He owns the house, so I would have to choose between my own future and life and kids and family, and becoming a 24/7 slave to my Mum. Sorry Mum but it's no choice. :-(
 
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Boredhousewife

Registered User
Dec 18, 2012
83
0
I need to talk to someone....

I live in Worcestershire, my Mum lives in Bucks. Because of this I am finding it impossible to get someone to just talk to about the problems I am having. It's an awkward situation and I am not coping *at all* in dealing with it. No one however is coming forward to help me with it. I want to just talk to a counsellor or someone who knows what I am talking about. I need real help dealing with the real problems a relative with Alzheimer's causes, yes. But that is separate to the emotional frustration casued by trying to care for someone who is 100 miles away and by far my biggest problem is the sheer bloody frustration caused by having to pussyfoot around and take into account the feelings of all the people invloved in this mess which of course social services and Age Uk etc just don't and can't deal with for me. I am dirt poor so can't pay for a therapist. I am looking for a charity or carers association that isn't region specific so that they tell me to talk to their other branch who then tell me they can't help. This is my last attempt before I just bail. I can't do this to myself anymore.
 

Boredhousewife

Registered User
Dec 18, 2012
83
0
I'm out

29 views and no one has a suggestion. I tried to condense it and make it less whiny but them are the facts. I guess it's just an impossible situation, if not even one person has any ideas... I don't have to feel too guilty for just bailing then! Thanks to anyone who read it but was stumped. I'm stumped too and have had enough. Social services can sort it out, I am out. I thought that logically there must be *something* that could be done.... Logic doesn't always reflect real life though.
 

Moonflower

Registered User
Mar 28, 2012
773
0
Ok, I didn't post at first because I don't have a solution. I did go through something very similar when my dad was alive and I had two parents desperately struggling but refusing all solutions and help.
I remember the teeth clenching frustration of it. The complaints, combined with a refusal to accept help. Which effectively offloads the problem onto you without giving you any means to deal with it. Arranging things only to have them cancelled, followed by yet another phone call asking for help.

I truly wish I had something to offer you besides sympathy. What kept me (just) sane, was my husband pointing out that there was nothing, nothing, nothing I could do about it. And there wouldn't be until a crisis took things out of my parents hands. He was right.

We want to care, we want to help, we want to fix things, and this isn't fixable.

My advise - step back, step right back and take care of yourself and your sanity. Or you will just keep going round in circles which don't help anyone and drain your energy. You have done the only practical thing you can - found a good local care home.

Just editing - I read my post back and it sounds very bossy! sorry, I'm not intending to be insensitive.
 

susy

Registered User
Jul 29, 2013
801
0
North East
Hi boredhousewife. Have you looked at care homes close to you or close to your sister? I know that would mean a further distance for one of you but may be better for your mum. If you both have a look and see if there is a care home with at least one younger person like herself residing then that may well be perfect for her.
Have a chat with her social worker and see what help they can give you with all of this.
That's the only thing I can think of. Maybe the others who have viewed are having a think about the advice they wish to give.
I do hope this helps xx
 

Boredhousewife

Registered User
Dec 18, 2012
83
0
Thankyou, so much. God the tears wont stop, I feel like a total wet blanket and whinger. I do not like whingers or whinging and here I am singing like a disgruntled canary. Maybe I can come back once I feel better. And have learned how to distance a bit. :(
 

Boredhousewife

Registered User
Dec 18, 2012
83
0
Thanks Suzy...

I've tried with the carehomes but as we have no power of attorney and the red tape of moving area is very bad social services want to look at care homes near her, first. Also my family will not travel to see her. My brother, her brother, my sister, Mum's ex. They don't want her put in a home near me so will not support me with the practicalities of getting it done I would have to pay for it all, organise it all and move it all myself. On my own. They can'f find a home near Mum that will take her that suits the funding arrangement we will need and her dementia needs. Well, they have foudn the one that she is freaking out about. Mum owns a property but has no savings so she will go in as a self funder till her money runs out then be in a social services fiunded bed. Same bed, they don't want to physically move her. Anyway they can't find a home that will accept their rates for the 12 weeks property disregard nor one who will convert her from one form of funding to another once her money runs out, she would have to leave and find another home. There might have been more choice but (this is part of my problem) she wont consider moving area because she doesn't think her ex will like it. Which is silly but apparently they have to take it into consideration! And family memebers complain it is too far for them to travel to see her (the once a year they bother) so they wont help me with practical things to get anything done. Socal services wont help me get rid of her ex because they say it is her choice to still have him around. Despite her phoinign me daily saying she will kill him or herself. When she is asked she says he is lovely then tells me she is too scared of him to say otherwise. It's so complicated I can;t even explain it lucidly! And it's too heavy. If I back out, social services will HAVE to deal with her and find her a place, which she will then most likely refuse, and eventually she will be sectioned and carted off kicking and screaming. It's impossible.
 
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Noorza

Registered User
Jun 8, 2012
6,541
0
I don't know how much this will help but it helped me so I will share. It was explained to me as the circle of responsibility, draw a circle, how much of this is your mum's doing, how much is yours, your siblings, how much responsibility should the health care professionals take. It sounds that you, like me were taking 100 percent of the responsibility but we can't control other peoples' decisions so it is a no win.

While your mother has capacity the decisions are hers to make which puts you in an impossible situation. If she doesn't want to be in care that's her choice and the consequences of that are hers too. I don't have the answers as a wise person said to me just the other day - "Here take my advice - I'm not using it". I know how hard this is when you can see loved ones taking decisions that aren't right for them.
 

Boredhousewife

Registered User
Dec 18, 2012
83
0
The other problem I am having, in finding someone to talk to, is this. I phoned AGE uk in Bucks where Mum lives and they said I needed to phone Age UK Worcestershire because I am the "carer" and that's where *I* live. Age UK Worcs say they can't help as I am not technically a carer and Mum lives in Bucks, so I shoudl phone the Bucks branch. Worcs care advice also say the same. I am not technically a carer and Mum doesn't live in their area so I don't qualify for their help. My GP said, and I quote "Don't you have any friends you can talk to? What do you want me to do?!" And gave me an Anger management advice leaflet with details of a course she told me was no longer running but I should ring the number in case. In case of what? I don't know. I gave up on her too she obviously couldn't help.
I was hoping to find a charity or agency that aren't so bound by region. A more national one.... No luck on that so far.
 

Boredhousewife

Registered User
Dec 18, 2012
83
0
Thanks Izzy....

I'm just thinking that if you want to talk to someone personally perhaps you could consider phoning the Alzheimer Society helpline-

0300 222 1122

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365

I see from looking at the site just now that it is closed for the bank holiday on Monday but it is open today and tomorrow. I'm sure you would get a listening ear and some good advice.

Thanks Izzy, I will. Why I forgot about them I don't know!
 

Boredhousewife

Registered User
Dec 18, 2012
83
0
Bit embarrassed now....

But massive thanks to everyone for your kindness and support. Reading my posts back, I think I've reached a crisis point and I need to take care of me for a bit before I go off the deep end. I nearly took a dive, there.
I will phone Mum's Social worker and explain it to them on Tuesday. And phone round the family and tell them I am currently too ill, and they need to dump it in someone else's lap! I'm sure I will get much criticism but once it is done, I can rest for a bit.
Thankyou.
 

Noorza

Registered User
Jun 8, 2012
6,541
0
But massive thanks to everyone for your kindness and support. Reading my posts back, I think I've reached a crisis point and I need to take care of me for a bit before I go off the deep end. I nearly took a dive, there.
I will phone Mum's Social worker and explain it to them on Tuesday. And phone round the family and tell them I am currently too ill, and they need to dump it in someone else's lap! I'm sure I will get much criticism but once it is done, I can rest for a bit.
Thankyou.

Yes you do need to take care of you. It was a realisation that hit me about a month ago. We can't take care of others if no one is taking care of us. Forget other peoples' criticisms, if they want to criticise they can take the responsibility on board too. They can't criticise and do nothing.
 

cragmaid

Registered User
Oct 18, 2010
7,936
0
North East England
You have, as I see it, two choices at the moment. Carry on as you are, hating every minute, putting Ma first and your own family AND YOU, on the back burner.....or saying STOP.

You can say Stop, you know. There is no law in the land to force you to take care of your Mum. The SS can't make you and neither can your Dad or your Siblings.

I know it's your Mum, but it's your life that is being so badly affected. Unless you call a halt now, your despair will turn to real anger and bitterness and then you and your own relationship will suffer.

I suggest that you contact your siblings, your Dad and , yes, your Mum too and say that for the foreseeable future you cannot take an active part in Mum's day to day care...........then stick to it. Until you take action the rest of the family will just carry on expecting you to go on as before.
Good Luck. The peace you require is going to take some tough love.
 

Saffie

Registered User
Mar 26, 2011
22,513
0
Near Southampton
She would get one room to be private in or have to sit in a room full of (being brutal) drooling, incontinent, snoring, seriously demented and very old people watching nothing much on TV in the residents lounge.
All Care homes or nursing homes that accept residents with dementia are not like this and 67 is not really so very young to be suffering from dementia.
There are people on TP with spouses and parents much younger than that!

It sounds as if you have reached the end of your tether.
Try seeing if there is a branch of Carers UK in your area or The Princess Royal Trust for Carers.
Both offer help and facilities for carers and I know the latter will arrange counselling.
It is all free. Good luck.