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Old 04-08-2012, 07:17 AM   #1
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My mum hates me - I'm her carer - help

My 85 year old mum has been in rapid decline since being diagnosed with Alzheimer's last year. Around the same time she experienced the death of two of her siblings, sale of her home of 50 years and a traumatic and largely unsuccessful move into a retirement village with my father, severe depression, chronic back pain and illness have all contributed.

Over the last couple of weeks she has admitted that she has no memory of me prior to moving to the retirement village and that she did not know how I fitted into the family. She would not believe that I was her daughter. She would not believe that she indeed had four children but she eventually remembered that she indeed had a daughter but I was not she.

Her delusion since is that I am a hated impostor out to dupe the family. I am as you can imagine, gutted, angry, bewildered, depressed by turns but after reading posts here about the experience of others and doing some research into delusions attributed to Alzheimer's I am fairly certain I can deal with it.

Just prior to Easter my Dad was admitted into hospital with chest pain and suffered a heart attack while in triage. He is too frail to continue to look after mum when he is finally released.

I am the primary carer for both of my parents but since my mother now needs to be supervised at all times I had no option but to ask my brother and his family for assistance. He took my mum home with him but they are all due back at work on Tuesday once the Easter break is over.

I am not in a position to care for mum 24/7 so I'm trying to find a respite bed for her after Easter but it is proving an impossible task. My mum's decline has been so rapid that it has taken us all unaware. We, as a family had begun to discuss the next step in mum's care but the last 2 weeks have seen a greater level of confusion and helplessness that our hearts are breaking watching it progress.

She shuns me, turns her back on me, ignores my questions, shakes off my touch. For 2 days I have avoided meeting her while visiting dad at the hospital because she told dad in my hearing that she just can't stand me and doesn't trust me.

It has been suggested that mum associates me with the unpleasant things that she has been through recently but I still can't help thinking that I have done something to trigger this response in my mum. Intellectually I understand that it is her disease but what can I do?

My brothers are not prepared to help with ongoing care of my parents so it is up to me to carry on. If she doesn't want me around how do I do it? I'm hoping she won't be so hostile when I see her next but the prospect fills me with dread.

Any suggestions would be appreciated.

 
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Old 04-09-2012, 05:37 AM   #2
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Re: My mum hates me - I'm her carer - help

Dear Pretenette,

You have my total sympathy and understanding. My Mom also forgot who I was and said she could not have a daughter this old. In her mind she was a young woman but in reality, in her 90's.

If your Mom knew what she was saying and doing she would be appalled and so sorry ..you have to tell yourself that it is not her speaking, but the disease. She cannot help it. That makes it a bit easier to bear. I hope you get the respite care you need, and that a more permanent solution can be found. No one, not even the best daughter in the world, can be a 24/7 caregiver for an Alzheimer patient and not have long lasting damage to herself. I did it for 5 years and I know.

Good luck to you!

Love,

Martha

 
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Old 04-09-2012, 07:37 AM   #3
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Re: My mum hates me - I'm her carer - help

Pre, first and foremost welcome to the forum. Know you are among friends and those that walk the same path as you are on now. We do understand, are here to listen, and maybe even give you some good advice and tips.

First you need to remember all the changes your Mom has been through in such a short time. Life as she knew it has been completely ripped away from her. In addition to of this, she has a disease that has taken away her ability to cope with changes and her ability to remember what has happened and why. If you repeatedly found yourself in a situation that you didn't understand you would be anxious and paranoid. The stress of all these changes is enough to set back Mom's cognition. Mom is in the moment. Her memory of the past is distorted at best or gone. She is unable to predict the future. All she has is the moment she is in... and there is nothing in that moment that she remembers. Know that what is in Mom's mind is reality to her. It may not be reality as we see it but it is her reality. You can no more convince her that she is wrong then she can convince you that you are wrong. That is why the first rule of Alzheimer's is.... Do not argue. Do not try to bring her into your reality but go into her reality and find a way to make it work.

My Mom, most days, has no idea who I am. I am just some nice lady that come around often. There was a time when she remembered me as a small child but not by the face I carry now. Other times she would recognize my voice but not my face. Once in a while she would call my name but it was gone as fast as it came. This is just what the disease does. No amount of coaxing or reminding is going to change what her brain has forgotten. They do not forget like we do. When reminded we find a little snippit of the moment that we can build on and drag out the old memory. With them the memory is GONE! It no longer exist and they can not drag it out. Therefore questioning them and prompting them is useless. It just agitates them. Rather than quizzing her just go with what she says.

As for her current emotional turmoil... if you look at all she has been through and put yourself in her shoes... you would be in emotional distress as well. You would not trust anybody. It's not just you she doesn't trust, she doesn't trust anybody or herself. She is not striking out at you but at a world of realities that she doesn't understand. She is scared, anxious, distressed, probably depressed, and angry. Wouldn't you be? Her cognitive ability doesn't really allow for her to make the kind of connections you and I do so my best guess is that she is reacting to the situation... and not you.

Knowing that you can not care for your Mom on a continuing basis is important. As Martha said nobody can do it 24/7/375. It is physically and emotionally exhausting and you have to have help. Looking for respite care is ok but please know that Mom is not going to get better so you might want to look for permanent placement. It is good that your brother could take Mom for a while to give you an opportunity to regroup but plans for the future do need to made.

As for the future, there is no way to predict how it will unfold. Her decreased cognition and memory can work in your favor. If she is provided with a place that she feels safe and secure the emotional distress will lessen. Medication can help as well. She has been through so much you may want to discuss with her doctor antidepressants or other anti psychotic medications that will help.

Your emotional responses will make a difference as well. If you are anxious and stressed she is going to pick up on your emotions. Those with Alzheimer's, though they do not understand the spoken words will pick up on your non verbal cues. This ability is located in the brain stem which has probably not been effected by this disease. She will know you are in distress before you know it So try to calm yourself, stay in the moment with Mom, and find ways to make her life more secure. Do not quiz her about what she knows and do not argue with what she tells you. If the moon is green... so be it!

Learn all you can about this disease. It is like nothing you have ever experienced before. Understanding of the disease will go a long way in helping you learn to understand and accept your Mom as she is now.

You should find yourself all the support you can find. If there is a local support group please try it out. You can find these through your local Alzheimer's Association. You can call them for information on the disease as well. They have lots of information they can send you. They also have a hot line with wonderful experience volunteers that will help you. And please keep typing here. Many of us have been through the same emotions and situations you are in how. Know our hearts go out to you and we are here when you need us

Love, deb

 
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Old 04-09-2012, 08:29 AM   #4
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Re: My mum hates me - I'm her carer - help

Hi Pretenette,

Are you in Canada? We have Easter Monday holiday here too.

I am sorry that your Mom does not know you.
My FIL has severe Alzheimer's but somehow he never does this to my husband, not yet. But he does not talk actively anymore so he would not talk like that. Well he did say something to his elder son on the phone. He has not seen his other son for 45 years. So he told that son that he could not imagine he had 2 sons and he was very honored....
My FIL is different - he only cares to work with my husband (which is not real.) So he does not mind anything regarding family. Sometimes I think he feels work is more important than family. he did forget my husband once in a while. Once he was talking to my husband about work and told him he was his best friend (per work.) When my husband said he was the son, my FIL said oh, you are my son? The other time my FIL asked me how to treat his son back home in 2009. Now he forgot his son's childhood. Not sure if he knows that my late MIL gave birth to my husband...

Is it possible that you validate her feelings by saying you are the caregiver? Don't bother to insist that you are the daughter. Maybe if you are not "pretending" as she says, then she would accept you. Not that I know this is not true... It usually helps if we validate the elder's thoughts (not to agree.) Certainly your dad knows you but you guys can play a game saying you are the old friend of the daughter and etc. Make up something interesting. As times goes on, she will forget more and may not care if you are the daughter anymore. For now, in order to calm her down, you guys just have to play the game.

It seems your parents should go to an AL place, or even the memory unit for your Mom. It is possible for her to go downhill quickly if there is unfriendly stuff going on and nothing is dementia-friendly in the village. The activities and meal time may be confusing as well. This could add to her trauma and make her worse.
My FIL gets worse every 6 months now. It is part of the disease. But how the caregivers treat him makes a lot of difference. They need the peace in their mind and they are in their world.
No way you will do it 24/7 and even if you do it 24/7, it will not help given that your Mom does not like you. Usually we stay away if my FIL gets mad.
One time he did get mad at us in the hospital. he thought people were to kill him and we happened to be there (we were not there in the hospital all the time) so he thought we signed up to kill him like the pets and he said he forgave us and blah blah blah. No one can convince him it is not true. He called everyone liar liar liar. He forgot about hating us but instead he decided that he should die and wanted to die - this had gone on for 2 years until the doctor reinstated the antidepressant in the NH for memory impaired.

You may need to check around for an AL. I know you just moved them but the village is not for memory problem. Your Mom may have to be in another unit for memory issue. I understand your Dad wants to be with her but it is not realistic if he cannot help her.

Perhaps you can hire a caregiver in private to help you out.

Take care,
Nina

Last edited by ninamarc; 04-09-2012 at 09:16 AM.

 
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Old 04-09-2012, 09:39 AM   #5
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Re: My mum hates me - I'm her carer - help

I just thought of some possibility. I don't know how bad your Mom's memory is but she may worry that you are caring for Dad and you are the "woman" whom she does not know. Maybe she questions why you are with dad - "why are you there? A girl friend?" You know sometimes she may misread the whole thing and make it worse.
Gees, I guess you do have to avoid her a little bit for a while and get a caregiver to replace you for now. You can still see Dad but avoid Mom's sharp eyes. Sometimes she may misunderstand the relationship between you and Dad and etc.

Probably she is upset about being moved and maybe she thinks you were the trigger for the move or something.
My FIL used to think I was the destroyer of "his career" because I don't want my husband to pretend he is in the same field. My husband is being so nice and co-dependent that he used to cope with his Dad and so his Dad thinks they work together! My husband never said no. So I became the enemy and he knew to avoid me when he asked my husband to provide a work position for him in my husband's lab. This was ridiculous - his own colleagues didn't want him anymore! He cannot come to mess up my husband's work!!

Anyway, if you can find the trigger, that will be helpful, but if not, you just have to be patient and maybe one day she will forget about this "impostor".

Hugs,
Nina

Last edited by ninamarc; 04-09-2012 at 09:42 AM.

 
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Pretenette (04-09-2012)
Old 04-09-2012, 03:46 PM   #6
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Re: My mum hates me - I'm her carer - help

Quote:
Your emotional responses will make a difference as well. If you are anxious and stressed she is going to pick up on your emotions. Those with Alzheimer's, though they do not understand the spoken words will pick up on your non verbal cues. This ability is located in the brain stem which has probably not been effected by this disease. She will know you are in distress before you know it So try to calm yourself, stay in the moment with Mom, and find ways to make her life more secure. Do not quiz her about what she knows and do not argue with what she tells you. If the moon is green... so be it!
Many thanks for the wonderful response, it's given me food for thought.
I realise that while I try to act calmly in my mother's presence - the day everything went pear shaped I did panic when trying to to work out how to juggle transporting my parents, making sure mum had supervision while I took dad to the hospital, etc - this must be what triggered it. Oh gosh - I shall have to be a great deal calmer and not let her see my panic in future. Thanks

 
Old 04-09-2012, 04:22 PM   #7
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Re: My mum hates me - I'm her carer - help

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Are you in Canada? We have Easter Monday holiday here too.
No, I am in Australia - we have Alzheimer's Associations here but no forums that I could locate with the depth of knowledge and support that is available here. I am grateful.

I grieve for the loss that we are all going through.

Quote:
Is it possible that you validate her feelings by saying you are the caregiver?Don't bother to insist that you are the daughter. Maybe if you are not "pretending" as she says, then she would accept you. Not that I know this is not true... It usually helps if we validate the elder's thoughts (not to agree.) Certainly your dad knows you but you guys can play a game saying you are the old friend of the daughter and etc. Make up something interesting. As times goes on, she will forget more and may not care if you are the daughter anymore. For now, in order to calm her down, you guys just have to play the game.
I will try this, and most importantly get my dad to play along - he has been so upset since my mother rejected me. I have never called myself their caregiver but my parents have been very concerned that this function should be acknowledged. I've never been comfortable with label - I'm just their daughter helping out.

My mum has been on anti depressants for a few weeks now and they seem to be helping her cope a little better - she no longer wants to just stay in bed and actually get dressed again - this was a real problem for a while.

She has been also been on Oxycontin for her back pain. Her doctor recommended taking her off the pain meds to see if they were causing the increased confusion. I think the removal of pain meds since Good Friday and having my brother's family around her are helping. Sadly this situation can't continue.

Quote:
It seems your parents should go to an AL place, or even the memory unit for your Mom.
Yes, I've spoken to my dad and he is in agreement - now it's just a matter of finding somewhere suitable.

Thanks for the suggestions and I wish you, your family and your FIL the best.

 
Old 04-09-2012, 04:33 PM   #8
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Re: My mum hates me - I'm her carer - help

I just thought of some possibility. I don't know how bad your Mom's memory is but she may worry that you are caring for Dad and you are the "woman" whom she does not know. Maybe she questions why you are with dad - "why are you there? A girl friend?" You know sometimes she may misread the whole thing and make it worse.
That hit like a bolt from the blue but you know - I suspect you may well have something there. Not the bit about the girlfriend - I don't think mum thinks that, but certainly an interloper trying to gain my dad's affections. My dad makes it worse by crying and holding on to me and insisting that she has to recognise me.

I have a day or two of reprieve to find a place for mum and I will talk to her aged care case manager about finding a temp carer while we sort this out.

 
Old 04-09-2012, 04:39 PM   #9
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Re: My mum hates me - I'm her carer - help

My brother says she is better, it seems the meds are wearing off and she has not exhibited any pain symptoms yet - we have a referral to the hospital if the pain returns.

I have been avoiding her but I must take her to see her GP on Friday. Wish me luck.

 
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Old 04-09-2012, 10:01 PM   #10
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Re: My mum hates me - I'm her carer - help

Yep, the Oxycontin can be a problem. It can definitely affect the cognition in a negative way. If she is able to come off the medication it would be helpful. There are other medications that are better and other ways to control the pain. Beyond that, as the dementia progresses the pain may not be as much as issue. Mom no longer complains of her sinus issues or her arthritis. She never exhibited pain when she broke her hand. I do believe her pain receptions have been affected along with her other brain functions.

I do hope you can find a place for Mom now that you have Dad's agreement. He is going to need time to recover from his illness. You are going to have him to care for as well as Mom. Knowing your limitations is so very important.

Relationships are hard to sort out when it comes to dementia. Their brains do not function as ours do. They do pick up on reactions and underlying emotions more so than spoken words. What they see is misinterpreted. Anxiety, tears, and distress will cause them to reflect those same motions. And yes they do misinterpret intentions. While at home Mom thought the care giver was spying on her and also decided she was too close to Dad.

There is no way you can make her remember what she has lost. If she doesn't know who you are then you have to accept that. Once in a while she might surprise you and call you by name but those moments are fleeting and will go as quickly as they appear. Trying to coax her into saying what she can't remember will just frustrate you both

The Alzheimer's Association here has support groups that meet monthly in different locations. You can find these groups listed on the web site. Each group has a trained facilitator that leads the meeting. It is for the participants to share. It can also give you local contacts that are helpful. I agree that this is a great place and there is somebody here to talk to every day. I wouldn't give up this place... but I also attend a local meeting as well. Actually I have just completed my facilitator training and my first meeting will be Thursday night

I am glad the antidepressants and being with your brother have helped your Mom to settle a bit. I do hope you can find good placement and your Dad does well after his hospitalization

Love, deb

 
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Old 04-10-2012, 05:07 PM   #11
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Re: My mum hates me - I'm her carer - help

Thanks all for the advice my friends. Yesterday mum and I reconnected and she was so upset that she had forgotten me, we hugged a lot and cried. I have managed to find a place for her while we sort out this mess. Juggling her care until then. I have no illusions that this is just a reprieve.

The pain thing is really weird - but if the pain receptors are broken this could be bad in other ways. Oh well. The learning curve is so steep but I am learning, learning, learning. Thank you again.

 
Old 04-10-2012, 07:05 PM   #12
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Re: My mum hates me - I'm her carer - help

I am so glad you had a moment of clarity with you Mom and were able to reconnect. You are right, it is just a reprieve but you take what you can get when you can get it I am also glad you found a place for her and hope it works out well for all of you!

You are right about the pain thing. In ways it is a blessing and in ways it is a curse. Mom's arthritis doesn't seem to bother her any more but it took a while to realize that her hand was broken because she never complained. If they are not feeling pain or can not express pain you have to be even more vigilant.

I do hope this is the beginning of better days ahead for you

Love, deb

 
Old 04-11-2012, 08:03 AM   #13
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Re: My mum hates me - I'm her carer - help

Pre, welcome to our little place in space. So glad to read that you are sorting things out, it can get crazy. You will come across lots of challenges in the coming future, stick around and post often. We can lend you an ear or a shoulder to cry on or an arm for support. We are are all travelling the same road, some of us have reached the end and can share what has worked and what has not worked for us. Keep posting, you are not alone anymore..
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Old 04-11-2012, 12:16 PM   #14
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Re: My mum hates me - I'm her carer - help

It is good that your Mom connected with you again. It is the good day. When the day gets bad, she could get worse too. Maybe she is now used to the new place once she is settled.

My FIL can still feel pain so I cannot help you on this one, but it is possible that she has no pain while there is pain issue! Hope you will get this sorted out.

Hugs,
Nina

Last edited by ninamarc; 04-11-2012 at 12:17 PM.

 
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