I Don't Know How to Cope

Jacy

Registered User
Apr 2, 2017
2
My mum moved in with me 6 months ago after things deteriorated at home. She does not think there is anything wrong with her and refuses help. Social Services have told me if she refuses help they can't force it on her, I guess the same would go for private care as she is physically aggressive if I try to get her to shower or do anything she doesn't want to do. So we are coping on our own. Doctors and Social Workers all refuse to do anything unless my mum agrees to it. Well she won't! They seem to have no understanding of Alzheimer's at all. Things are becoming more difficult at home. She thinks the house is hers (it is nothing like her house) when I explain it isn't, she shouts and argues that it is her house. I have tried going along with it but then I get shouted at for taking over her house and not paying her! I can't win. She needs 24 hour care now so family life is non existent. She is just angry and bitter and difficult all the time. If there were moments of happiness I think I could cope, but everything is stressful. I need respite but how do care homes cope with aggressive patients. She went in a few months back and did the same thing in the home, she tried to get the other patients out of their beds as she thought they were in her house. She came home very bruised because they had to man handle her to stop other patients and staff being harmed. She is a lot worse now so I don't know what would happen. My mum was generous and loving and would never have spoken to me or my family the way she does now. It hurts me to think how horrified she would be if she could see how she is behaving. I know there is not an answer, it is just such an awful disease. Got to finish now as I am being told what a horrible person I am for giving my attention to something else other than my mum!!
 

nae sporran

Volunteer Host
Oct 29, 2014
6,338
Bristol
Welcome to posting on the forums, Jacy. I can't imagine how hard that situation is for you. Have you tried ringing the dementia helpline for advice. Sorry, that's the best I can offer. 0300 222 11 22 and
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,356
Kent
Hello @Jacy. Welcome to the forum.

You cannot be forced to live with such challenging behaviour. The doctors and social workers are opting out of their duty of care because they are relying on you to care for your mother.

It sounds really cruel I know but the only option I can see is to tell these people you will be forced to return your mother to her own home and refuse to take further responsibility because they have a duty of care and you are getting no support.

Now this seems a terrible action to take against a once loving mother. She can`t help how she is, we all know this but you deserve some life too and this is unsustainable.

As long as you are available to care for your mother the support services already well oversubscribed will allow you to continue.
 

canary

Registered User
Feb 25, 2014
11,301
South coast
I agree with Sylvia - all the while you are there looking after your mum Social Services will let you get on with it. Its not sustainable, though, and eventually there will be a crisis. It may be that you need to let that crisis come by stepping back, hard though that is.
 

trinity123

Registered User
Oct 7, 2019
15
I feel for you I really do - I am in the same situation - my MIL moved in with us in August and is so unaware of the care that we give her just to keep her going - but when she speaks to any professional she can do everything herself and doesn't need to rely on us. And you're right, even if we wanted carers to come in for 1 hour a day and she doesn't agree to it they wont do it - even though she lacks capacity!
We've also had the "you're living in the house I paid for" which is untrue. We have learnt to go along with things now to try to keep (some) peace and end up not talking at all and afraid to discuss anything in front of her.
walking on eggshells all the time in your own home and having no respite is hard.
sorry cant offer advice but this site is useful for offloading ☺
 

Jacy

Registered User
Apr 2, 2017
2
Thank you everyone for your replies. I think you are right Sylvia and Canary. The last time we visited the doctor I wondered what they would do if I just got up and left her there. They couldn't send her out on the street as she wouldn't have a clue where she was or how to get home. Mum has fallen a few times lately (won't use a stick or frame however much we try) and I know it sounds awful but part of me hoped she had broken a hip or something so she goes into hospital and they have to put a care package in place and see what we are dealing with. I obviously don't really want her to hurt herself but like you say, sometimes it takes a crisis for things to get done. My daughter very astutely said we need a break so we can be nice again, I moved mum in because we all love her and want the best for her, but I am not myself anymore. I am frustrated, angry and impatient.
Trinity 123, I know exactly where you are coming from. As you say we are walking on egg shells the whole time and can no longer just talk in our own home. Mum can't wash and dress without help anymore and yet can argue and dominate the whole household! It does help to let off steam to people who understand. The well meant advice of friends often doesn't help as they have no idea what we are dealing with.
I like your quote Sylvia, this might be frustrating but there are a lot worse things happening.
 

kindred

Registered User
Apr 8, 2018
2,338
Thank you everyone for your replies. I think you are right Sylvia and Canary. The last time we visited the doctor I wondered what they would do if I just got up and left her there. They couldn't send her out on the street as she wouldn't have a clue where she was or how to get home. Mum has fallen a few times lately (won't use a stick or frame however much we try) and I know it sounds awful but part of me hoped she had broken a hip or something so she goes into hospital and they have to put a care package in place and see what we are dealing with. I obviously don't really want her to hurt herself but like you say, sometimes it takes a crisis for things to get done. My daughter very astutely said we need a break so we can be nice again, I moved mum in because we all love her and want the best for her, but I am not myself anymore. I am frustrated, angry and impatient.
Trinity 123, I know exactly where you are coming from. As you say we are walking on egg shells the whole time and can no longer just talk in our own home. Mum can't wash and dress without help anymore and yet can argue and dominate the whole household! It does help to let off steam to people who understand. The well meant advice of friends often doesn't help as they have no idea what we are dealing with.
I like your quote Sylvia, this might be frustrating but there are a lot worse things happening.
Consider employing an independent social worker. Google them for one in your area. They do not cost that much. warmest, Kindred
 
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Shedrech

Volunteer Moderator
Dec 15, 2012
8,464
Yorkshire
hi @Jacy and @trinity123
why not contact your mum's Local Authority Adult Services (it sounds as though you already have some contact with Social Services) and her GP and advise them that your mum will be returning to her own home so will need a re-assessment of her care needs and an up to date care plan put in place, or she will be on her own and therefore a vulnerable adult at risk of self neglect as she is not capable of looking after herself ... remknd them that they have the duty of care to ensure her care plan is appropriate and she recieves the care in the plan
you don't have to mention exactly when this will happen, but make it sound imminent
 

anxious annie

Registered User
Jan 2, 2019
248
Hi Jacy and trinity 123
You've had some good advice here, and I'm sorry that I don't have anything more to help, but I just wanted to say that you shouldn't have to go through what you are. You must go back to GP and SS to let them know that you are at breakdown as things are so difficult and that you need help, whether your PWD agrees with this or not.
Sending you strength and hugs X
 

Donkeyshere

Registered User
May 25, 2016
460
channel islands
Thank you everyone for your replies. I think you are right Sylvia and Canary. The last time we visited the doctor I wondered what they would do if I just got up and left her there. They couldn't send her out on the street as she wouldn't have a clue where she was or how to get home. Mum has fallen a few times lately (won't use a stick or frame however much we try) and I know it sounds awful but part of me hoped she had broken a hip or something so she goes into hospital and they have to put a care package in place and see what we are dealing with. I obviously don't really want her to hurt herself but like you say, sometimes it takes a crisis for things to get done. My daughter very astutely said we need a break so we can be nice again, I moved mum in because we all love her and want the best for her, but I am not myself anymore. I am frustrated, angry and impatient.
Trinity 123, I know exactly where you are coming from. As you say we are walking on egg shells the whole time and can no longer just talk in our own home. Mum can't wash and dress without help anymore and yet can argue and dominate the whole household! It does help to let off steam to people who understand. The well meant advice of friends often doesn't help as they have no idea what we are dealing with.
I like your quote Sylvia, this might be frustrating but there are a lot worse things happening.
Hi I completely understand how you feel we have our MIL living in an annex next to our house. When you reach the point that where previously you were happy to to the point you feel resentful, you need to evaluate how much longer you want to carry on. When your life revolves around dementia is very hard. As hard as it is this week we are looking at care homes, even though MIL told the social worker we do nothing for her! Hope things improve one way or another.
 

Dawno

New member
Jan 15, 2020
3
Thank you everyone for your replies. I think you are right Sylvia and Canary. The last time we visited the doctor I wondered what they would do if I just got up and left her there. They couldn't send her out on the street as she wouldn't have a clue where she was or how to get home. Mum has fallen a few times lately (won't use a stick or frame however much we try) and I know it sounds awful but part of me hoped she had broken a hip or something so she goes into hospital and they have to put a care package in place and see what we are dealing with. I obviously don't really want her to hurt herself but like you say, sometimes it takes a crisis for things to get done. My daughter very astutely said we need a break so we can be nice again, I moved mum in because we all love her and want the best for her, but I am not myself anymore. I am frustrated, angry and impatient.
Trinity 123, I know exactly where you are coming from. As you say we are walking on egg shells the whole time and can no longer just talk in our own home. Mum can't wash and dress without help anymore and yet can argue and dominate the whole household! It does help to let off steam to people who understand. The well meant advice of friends often doesn't help as they have no idea what we are dealing with.
I like your quote Sylvia, this might be frustrating but there are a lot worse things happening.
Hi
I hear your plight I so feel the same my mom is such hard work and I feel ill now looking after her.
 

trinity123

Registered User
Oct 7, 2019
15
thank you all - it is so hard to know what to do. my MIL was living in an annexe attached to my sister in laws house but she couldn't cope with her and has basically dumped her on us (well me mostly as my husband wants nothing to do with her), it did get too much a couple of months ago and I am now on anti depressants which I have never needed before!
it has completely taken over our lives we both work every day and we have no time for anything else
 
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father ted

Registered User
Aug 16, 2010
694
London
Hello Jacy,
Just to echo what everyone else has said to you.
Your second post stating that your daughter said ‘we need a break to be nice again’ resonated so much with me and my circumstances but of course my Mum always refused to go anywhere so we would arrange sitters for the very short breaks that we took.
As you say under such pressure you become impatient, frustrated and resentful. Do as others have suggested neither you or your Mum deserve to be living in such stressful circumstances. It’s amazing how the recognition of all that you do and regular quality help can change everything.
Good Luck. X
 

anxious annie

Registered User
Jan 2, 2019
248
Hi Jacy and Trinity 123
I hope that you have survived the weekend and manage to get some help from SS or GP to put support in place x
 

Purnima

New member
Dec 19, 2019
4
Hi, feel very sorry for what you are going through and the non involvement from medical staff and social services. If your mother was a harm to herself or others as a last resort she could be sectioned into hospital but that is only if you want that to happen. Otherwise continue to contact social service. They have a duty of care. My thoughts are with you
 

trinity123

Registered User
Oct 7, 2019
15
Good morning
survived the weekend thank you and hope everyone else did.

have now been able to agree with my sister in law that we should take it in turns to have MIL staying with us so going to try alternate months - probably not ideal for her and may cause more confusion but she is capable of washing/dressing etc and is ok to be left whilst we are working so doesn't need 24/7 care yet - will just have to cross that bridge when we come to it.

But for now is a relief to know that we will get a break!