Mum has Alzheimer's and I resent caring for her

[millymalaga]

Hi
I read a lot of threads where people really care for their parents and want to do a lot for them and I just don't feel that way. I waver between feeling like a complete selfish cow and feeling bitter and hating what she has become.
I am an only child and my mum never really wanted kids. She had an affair with a married man and I was the result. He left his wife and he married my mum. She regularly told me that she tried numerous remedies to trigger a miscarriage but obviously none of them worked. She was not a hands on mum and I have very little memories of spending time with her unless it was a rare family outing my dad had organised. The few holidays we had I was left to my own devices as she laid all day around the pool.
My dad died when I was 18 and I left home at 20 and got married.
I would go visit my mum with the kids when it was convenient to her and I would ring her regularly but it was very one way. One time I decided not to ring her again until she rang me. It took her four months to ring me.
She moved away to a seaside town which was a three hour drive for us. We would visit a few times a year. As her Alzheimer's started it became difficult to help her with things she couldn't deal with. Then when lockdown happened she became a nightmare with confusion, not eating, ringing us all hours of the night. I had power of attorney so we sold her house and bought one around the corner from us. Got her meals in wheels to make sure she ate, sorted her bills out, had her around for meals etc. She is physically fine but has no short term memory. Resents me for moving her. Hates her house. Tells everyone I've stolen her money and taken her away from her friends. Her friends couldn't cope with her any more and begged us to move her near us so we could deal with her. She was also ringing them 10+ times a day with her imagined latest crisis. She was paranoid about her money and bank card and would constantly cancel her card.

I hate dealing with the phone calls, the constant messing with her phone, TV , boiler etc which means I am forever having to go around to her house to fix them. Or she has lost something and I have to go around and find it. She cancelled the meals on wheels because she decided she was capable of cooking.

I work 38 hours a week over four days. I have my 1yr old granddaughter from Saturday night to Tuesday morning so my daughter can work two shifts a week as a nurse.

Saturday day time is mine and hubby's time to spend time together

I am not a nurse and I possess zero patience to look after someone in this condition. There is no way that I am ever going to take her into my house. I would not cope mentally.

I resent every thing I have to do for her. I feel like I am not normal to feel this way and I just needed to have a bit of a rant and hopefully find out if these feelings are normal.

 

[canary]

Hello @millymalaga

Everybodys reaction will vary depending on what the relationship was like before dementia and how the dementia manifests itself in that person

The things you are describing are classic mid-stage dementia symptoms. I loved my mum very much, but I found this mid-stage to be the hardest to deal with. She was certain that she was still doing all the things she used to do and refused everything I tried to do to help her and Social Services took her at her word that she didnt need any help. Her washing machine, TV and boiler were regularly "going wrong", although in reality she no longer understood how to work them. Yes, Ive had the multiple phone calls and the horrible accusations. She became paranoid, accusing me of stealing from her, shouting at her and hitting her (although I would say that it was the other way around!). I was not able to look after her in my home - I had tried and lasted only a weekend before I realised that it would be impossible for me.

It became a nightmare - every week there was a new problem. Eventually there was a crisis. She had a TIA and ended up in hospital where she was found to be severely dehydrated and malnourished. She moved from there to a care home and I can honestly say that it was the best thing that happened to her.

Please do not feel guilty that you are having so many problems with your mum
((((((((((((((((((((hugs))))))))))))))))))

 

[northumbrian_k]

Hi @millymalaga and welcome to our supportive and friendly community. I am sorry to hear about your mum and the way this makes you feel. I hope that being able to express some of that here has helped. But that is only the start. There is absolutely nothing that says we are responsible for our parents or have any obligation to look after them. That's not harsh, just a statement of fact. If you don't want to get drawn in as her Alzheimer's progresses - to the extent that it takes over your life - you don't have to. It sounds like she is in need of professional support and care. It is the responsibility of her local social services to assess her needs and to provide for them. Perhaps you could contact them and let them know that she is a 'vulnerable person' at risk of harm through self-neglect. Then keep your distance as otherwise you will be seen as a viable (and cheaper) alternative to professional carers.

This link might give you some relevant information:

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

 

[millymalaga]

Hi @millymalaga and welcome to our supportive and friendly community. I am sorry to hear about your mum and the way this makes you feel. I hope that being able to express some of that here has helped. But that is only the start. There is absolutely nothing that says we are responsible for our parents or have any obligation to look after them. That's not harsh, just a statement of fact. If you don't want to get drawn in as her Alzheimer's progresses - to the extent that it takes over your life - you don't have to. It sounds like she is in need of professional support and care. It is the responsibility of her local social services to assess her needs and to provide for them. Perhaps you could contact them and let them know that she is a 'vulnerable person' at risk of harm through self-neglect. Then keep your distance as otherwise you will be seen as a viable (and cheaper) alternative to professional carers.

She did have carers going in every day but she wouldn't let them do anything as she is physically capable of doing everything she just forgets. Often she is awake at night and sleeps in a bit so they were waking her up and asking if she needed physical help showering which she didn't. However she isn't washing her clothes or having showers because she doesn't remember to. Social services said they can't make her do anything and can just suggest things and they can't take her for a little walk or anything like that. So we stopped them from going and paid a family friend instead to go in a few days a week to take her out and about instead. This made her a bit more aware of her appearance.
Her dementia has got worse but I don't really know where to go next with it.

 

[millymalaga]

Hello @millymalaga

Everybodys reaction will vary depending on what the relationship was like before dementia and how the dementia manifests itself in that person

The things you are describing are classic mid-stage dementia symptoms. I loved my mum very much, but I found this mid-stage to be the hardest to deal with. She was certain that she was still doing all the things she used to do and refused everything I tried to do to help her and Social Services took her at her word that she didnt need any help. Her washing machine, TV and boiler were regularly "going wrong", although in reality she no longer understood how to work them. Yes, Ive had the multiple phone calls and the horrible accusations. She became paranoid, accusing me of stealing from her, shouting at her and hitting her (although I would say that it was the other way around!). I was not able to look after her in my home - I had tried and lasted only a weekend before I realised that it would be impossible for me.

It became a nightmare - every week there was a new problem. Eventually there was a crisis. She had a TIA and ended up in hospital where she was found to be severely dehydrated and malnourished. She moved from there to a care home and I can honestly say that it was the best thing that happened to her.

Please do not feel guilty that you are having so many problems with your mum
((((((((((((((((((((hugs))))))))))))))))))

My husband says she needs to have more professional care but because she is physically capable of cooking, washing etc even though she doesn't always do it, I can't see where to turn for additional support. Mum doesn't think she needs it but has no idea what toll it is taking on me. She did have carers but they are more suited to physically help people. She won't let people she doesn't know into the house. She has what she thinks is a family friend calling in to see her but we have arranged for them to do this instead of someone she doesn't know

 

[canary]

She did have carers going in every day but she wouldn't let them do anything as she is physically capable of doing everything she just forgets

I tried getting in carers for mum and she wouldnt let them do anything either - in fact she wouldnt let them in over the doorstep!
Mum was convinced that she was washing, changing her clothes and doing laundry, going shopping, cooking and doing housework etc, when one look at her and her home was enough to tell you that she wasnt.
Its such a difficult time
xx

 

[canary]

Crossed posts!

Eventually there will be a crisis, like with my mum.
I think you may have to stand back a bit and just let the crisis unfold.

 

[millymalaga]

My husband says she needs to have more professional care but because she is physically capable of cooking, washing etc even though she doesn't always do it, I can't see where to turn for additional support. Mum doesn't think she needs it but has no idea what toll it is taking on me. She did have carers but they are more suited to physically help people. She won't let people she doesn't know into the house. She has what she thinks is a family friend calling in to see her but we have arranged for them to do this instead of someone she doesn't know

Crossed posts!

Eventually there will be a crisis, like with my mum.
I think you may have to stand back a bit and just let the crisis unfold.

 

[millymalaga]

It is difficult. Her disease has progressed very slowly just like her dad's did but she started at a much younger age. She was having memory issues from the age of 61 and she is now 76. He was about 75 when his started. Her mum deteriorated in six months and was in a home a couple of months after that but she was 80.
She can't remember much of things that have happened in the last 9 years as she hasn't been able to retain new memories. It's only if something happens regularly she starts to remember it. It took 1.5 years of us walking her from her house to mine for her to be able to do it on her own and we live in the next street. over the last couple of years her longer term memory has become worse too. I think it will be a case of a crisis will have to happen.

 

[Overwhelmed!]

Hi
I read a lot of threads where people really care for their parents and want to do a lot for them and I just don't feel that way. I waver between feeling like a complete selfish cow and feeling bitter and hating what she has become.
I am an only child and my mum never really wanted kids. She had an affair with a married man and I was the result. He left his wife and he married my mum. She regularly told me that she tried numerous remedies to trigger a miscarriage but obviously none of them worked. She was not a hands on mum and I have very little memories of spending time with her unless it was a rare family outing my dad had organised. The few holidays we had I was left to my own devices as she laid all day around the pool.
My dad died when I was 18 and I left home at 20 and got married.
I would go visit my mum with the kids when it was convenient to her and I would ring her regularly but it was very one way. One time I decided not to ring her again until she rang me. It took her four months to ring me.
She moved away to a seaside town which was a three hour drive for us. We would visit a few times a year. As her Alzheimer's started it became difficult to help her with things she couldn't deal with. Then when lockdown happened she became a nightmare with confusion, not eating, ringing us all hours of the night. I had power of attorney so we sold her house and bought one around the corner from us. Got her meals in wheels to make sure she ate, sorted her bills out, had her around for meals etc. She is physically fine but has no short term memory. Resents me for moving her. Hates her house. Tells everyone I've stolen her money and taken her away from her friends. Her friends couldn't cope with her any more and begged us to move her near us so we could deal with her. She was also ringing them 10+ times a day with her imagined latest crisis. She was paranoid about her money and bank card and would constantly cancel her card.

I hate dealing with the phone calls, the constant messing with her phone, TV , boiler etc which means I am forever having to go around to her house to fix them. Or she has lost something and I have to go around and find it. She cancelled the meals on wheels because she decided she was capable of cooking.

I work 38 hours a week over four days. I have my 1yr old granddaughter from Saturday night to Tuesday morning so my daughter can work two shifts a week as a nurse.

Saturday day time is mine and hubby's time to spend time together

I am not a nurse and I possess zero patience to look after someone in this condition. There is no way that I am ever going to take her into my house. I would not cope mentally.

I resent every thing I have to do for her. I feel like I am not normal to feel this way and I just needed to have a bit of a rant and hopefully find out if these feelings are normal.

 

[Overwhelmed!]

Hi, I totally understand how you feel & I had a very close, loving relationship with my mum but, I now feel that her Alzheimer’s is killing it. She moved into our house over 18 months ago when it became apparent that she could no longer manage on her own. I feel that this is no longer a viable option as I can’t bear all the anger I feel over the stupid things she keeps doing & I don’t like the person I’ve become! Does Alzheimer’s rob her of her ability to speak to me? Because I don’t understand why she can’t ask me questions if she doesn’t know how to do something instead of making unsuitable choices! I don’t know where to turn to for help as I feel with supervision she’s not too bad. I feel like she can be nice with other people & ‘puts on a show’ of being capable when in reality she’s very confused. I hate myself for losing my temper with her but, I frequently do!😢
You can only do so much & your own family must come first. I hope you find the help you need.

 

[northumbrian_k]

Hi @Overwhelmed! and welcome to our community. Your username is a good clue to how you are feeling. I hope that joining us will help you.

 

[millymalaga]

Hi, I totally understand how you feel & I had a very close, loving relationship with my mum but, I now feel that her Alzheimer’s is killing it. She moved into our house over 18 months ago when it became apparent that she could no longer manage on her own. I feel that this is no longer a viable option as I can’t bear all the anger I feel over the stupid things she keeps doing & I don’t like the person I’ve become! Does Alzheimer’s rob her of her ability to speak to me? Because I don’t understand why she can’t ask me questions if she doesn’t know how to do something instead of making unsuitable choices! I don’t know where to turn to for help as I feel with supervision she’s not too bad. I feel like she can be nice with other people & ‘puts on a show’ of being capable when in reality she’s very confused. I hate myself for losing my temper with her but, I frequently do!😢
You can only do so much & your own family must come first. I hope you find the help you need.

I know exactly how you feel. I totally lost it with my mum on the phone the other day. She had been messing with her heating controls again so her heating wasn't coming on. I had to stop work and go round to reset it all. The saving grace was that by the time I had got there ten mins later she had no idea she had even rung me and no recollection of me shouting at her. Work is so busy and I am trying to get a promotion and I have enough stress of my own without having to deal with her "unsuitable choices". If anything has a button or a dial she messes with it.

 

[canary]

I don’t understand why she can’t ask me questions if she doesn’t know how to do something instead of making unsuitable choices!

Its because she doesnt realise that she doesnt know how to do something - she thinks that she knows perfectly well how to do it. Its only after its all gone wrong that she asks for help - and thats probably because she thinks the problem is with whatever item she was fiddling with, not her!

I feel like she can be nice with other people & ‘puts on a show’ of being capable

Its called being in "Hostess mode" here. Other places call it "Showtiming"
Everyone who has cared for someone with dementia has seen it, but often medical people dont recognise it.

 

[Overwhelmed!]

I know exactly how you feel. I totally lost it with my mum on the phone the other day. She had been messing with her heating controls again so her heating wasn't coming on. I had to stop work and go round to reset it all. The saving grace was that by the time I had got there ten mins later she had no idea she had even rung me and no recollection of me shouting at her. Work is so busy and I am trying to get a promotion and I have enough stress of my own without having to deal with her "unsuitable choices". If anything has a button or a dial she messes with it.

Snap! & if she can’t find the right switch/button she turns it off @ the socket! I woke @ 4am to hear a beeping noise-it was the landline; I couldn’t work out how to stop it so ended up hiding it under a pile of cushions! When my husband got up he started ranting about the broadband being switched off! That’s why the phone was beeping- mum couldn’t turn off the TV so she flipped a switch on the socket😱Unfortunately, she seems to hold on to any negative interaction whilst never remembering anything nice that happens!🤦‍♀️

Hi @Overwhelmed! and welcome to our community. Your username is a good clue to how you are feeling. I hope that joining us will help you.

Thank you, just reading other people’s comments & posts has helped a little, plus I’ve just had a little cry! I feel like all my good intentions fly away & I am left losing my temper & shouting @ a vulnerable person. Many people have told me to just agree with what she says & walk away but, I can’t! I think I need some coping strategies😉

Its because she doesnt realise that she doesnt know how to do something - she thinks that she knows perfectly well how to do it. Its only after its all gone wrong that she asks for help - and thats probably because she thinks the problem is with whatever item she was fiddling with, not her!

Its called being in "Hostess mode" here. Other places call it "Showtiming"
Everyone who has cared for someone with dementia has seen it, but often medical people dont recognise it.

Thanks for taking the time to reply with an explanation😍Nothing is wrong with anything apart from me, as she now thinks that all the upset is because I’m menopausal!😂
Why is ‘showtiming/hostess mode’ not recognised by the medical profession if so many of us are coming across this behaviour?

 

[Palerider]

Hi
I read a lot of threads where people really care for their parents and want to do a lot for them and I just don't feel that way. I waver between feeling like a complete selfish cow and feeling bitter and hating what she has become.
I am an only child and my mum never really wanted kids. She had an affair with a married man and I was the result. He left his wife and he married my mum. She regularly told me that she tried numerous remedies to trigger a miscarriage but obviously none of them worked. She was not a hands on mum and I have very little memories of spending time with her unless it was a rare family outing my dad had organised. The few holidays we had I was left to my own devices as she laid all day around the pool.
My dad died when I was 18 and I left home at 20 and got married.
I would go visit my mum with the kids when it was convenient to her and I would ring her regularly but it was very one way. One time I decided not to ring her again until she rang me. It took her four months to ring me.
She moved away to a seaside town which was a three hour drive for us. We would visit a few times a year. As her Alzheimer's started it became difficult to help her with things she couldn't deal with. Then when lockdown happened she became a nightmare with confusion, not eating, ringing us all hours of the night. I had power of attorney so we sold her house and bought one around the corner from us. Got her meals in wheels to make sure she ate, sorted her bills out, had her around for meals etc. She is physically fine but has no short term memory. Resents me for moving her. Hates her house. Tells everyone I've stolen her money and taken her away from her friends. Her friends couldn't cope with her any more and begged us to move her near us so we could deal with her. She was also ringing them 10+ times a day with her imagined latest crisis. She was paranoid about her money and bank card and would constantly cancel her card.

I hate dealing with the phone calls, the constant messing with her phone, TV , boiler etc which means I am forever having to go around to her house to fix them. Or she has lost something and I have to go around and find it. She cancelled the meals on wheels because she decided she was capable of cooking.

I work 38 hours a week over four days. I have my 1yr old granddaughter from Saturday night to Tuesday morning so my daughter can work two shifts a week as a nurse.

Saturday day time is mine and hubby's time to spend time together

I am not a nurse and I possess zero patience to look after someone in this condition. There is no way that I am ever going to take her into my house. I would not cope mentally.

I resent every thing I have to do for her. I feel like I am not normal to feel this way and I just needed to have a bit of a rant and hopefully find out if these feelings are normal.

I think honesty is always the best thing in these situations where there is no attachment between parent and child. However, that said what you are saying is that you can't do this and that is a perfectly fine thing to acknowledge as there is no right or wrong in dealing with our emotions. What I would say if that is the case is to think about long term care and placing her into 24/7 care as clearly you are not able to hold back on your own emotions. I think there is a difference between coping and just going through the motions because you feel compelled to even though you know in your own mind it isn't workable. I really think in your situation a care home would be better than you both suffering and the potential for ongoing abuse which resolves nothing other than being replaced by guilt and some despair at the situation. You can't care for someone you resent because in dementia there is no way of ever being able to resolve any issues or closure between you.

 

[Muttimuggle]

You are NOT that selfish cow.Not everyone has had a childhood which was a bed of roses and you certainly haven't. I do know how you feel though.I have been there with the resentment and the anger alongside the guilt that one feels despite everything that one is doing. I always maintained I did it all out of duty. That was a kind decision to move your mother to around the corner from you even though you may not realise it. I know it made it easier for you in many ways - but then probably harder in others.
I do not forget the years I spent sorting more and more out for a mother who was still feisty and recognised none of her shortcomings.To top all that I had an invisible sibling who was in denial, preferred to opt out and was telling me to leave Mum alone and that she was fine.He was also backing my mother up who thought I was interfering - getting in carers- which she said she never needed because she did everything herself. Many other people who knew her too could not see what i was seeing.I learned the term "hostess mode" on here. It was a time when I felt like I was going mad.It was the members on this forum who helped me see things in their reality.Looking back, I was doing so much for my mother, something which she could not recognise.
It was, as someone else said on here, a crisis which changed things.Mum fell down the stairs and broke her hip.Unable to return to using her rollator for walking, for about 5 months she actually made the decision that she would "have to go somewhere".
In the residential care home, where she has been for a year, all that feistiness has gone. She enjoys being looked after and has mellowed, is grateful for my visits.Things don't stay the same, for anyone. I still maintain that I am operating out of duty.Onlookers might say differently. She is certainly easier and the day to day responsibilities are no longer mine.You need to look after yourself and your family.Try not to allow yourself to get to the burnout stage. Being honest with yourself, as you have been on here is important.

 

[BeagleBum]

Hi
I read a lot of threads where people really care for their parents and want to do a lot for them and I just don't feel that way. I waver between feeling like a complete selfish cow and feeling bitter and hating what she has become.
I am an only child and my mum never really wanted kids. She had an affair with a married man and I was the result. He left his wife and he married my mum. She regularly told me that she tried numerous remedies to trigger a miscarriage but obviously none of them worked. She was not a hands on mum and I have very little memories of spending time with her unless it was a rare family outing my dad had organised. The few holidays we had I was left to my own devices as she laid all day around the pool.
My dad died when I was 18 and I left home at 20 and got married.
I would go visit my mum with the kids when it was convenient to her and I would ring her regularly but it was very one way. One time I decided not to ring her again until she rang me. It took her four months to ring me.
She moved away to a seaside town which was a three hour drive for us. We would visit a few times a year. As her Alzheimer's started it became difficult to help her with things she couldn't deal with. Then when lockdown happened she became a nightmare with confusion, not eating, ringing us all hours of the night. I had power of attorney so we sold her house and bought one around the corner from us. Got her meals in wheels to make sure she ate, sorted her bills out, had her around for meals etc. She is physically fine but has no short term memory. Resents me for moving her. Hates her house. Tells everyone I've stolen her money and taken her away from her friends. Her friends couldn't cope with her any more and begged us to move her near us so we could deal with her. She was also ringing them 10+ times a day with her imagined latest crisis. She was paranoid about her money and bank card and would constantly cancel her card.

I hate dealing with the phone calls, the constant messing with her phone, TV , boiler etc which means I am forever having to go around to her house to fix them. Or she has lost something and I have to go around and find it. She cancelled the meals on wheels because she decided she was capable of cooking.

I work 38 hours a week over four days. I have my 1yr old granddaughter from Saturday night to Tuesday morning so my daughter can work two shifts a week as a nurse.

Saturday day time is mine and hubby's time to spend time together

I am not a nurse and I possess zero patience to look after someone in this condition. There is no way that I am ever going to take her into my house. I would not cope mentally.

I resent every thing I have to do for her. I feel like I am not normal to feel this way and I just needed to have a bit of a rant and hopefully find out if these feelings are normal.

This is exactly how I have been feeling. My husband and I have been looking after my mum for over 7 years now, trying to keep her in her house. She is physically fit. She was getting carers in twice a day to give her medication and meals on wheels. She calls me all of the time, sometimes 15 times a day with her demands to fix things, go shopping etc or for someone to speak to. Her friends have started saying shes too hard work. Shes stubborn and she thinks there is nothing wrong with her. Its hard not to lose the plot with her demands that i just stop everything at a drop of a hat for her. She can be loving but also quite nasty if she doesnt get her way. Everyone else just sees the loving part. I am resentful. I hate playing the 'mum' ti my mum. Im mid 40s and have already lost my dad when I was early 30s to vascular dementia. I feel i need a life. I have no life and i resent it. More so that I have two siblings are in denial and say there is nothing wrong so dont help of or back me up. They dont get the calls and demands 15 times a day. They hardly see her so have no idea what she is really like. I work 38 hours a week and have 3 children. Its hard.

Anyway, i have recently developed epilepsy. I believe it was due to stress managing, mum, work and family. I had a bad seizure 2 weeks ago and demanded emergency respite. I felt it was killing me. I could no longer take it. It was a fight and now she is in a care home.

She would tell social work that she can shower, cook, manage her finances, the lot. Her care plan reflected that. None was true. She was convincing however.

She has been in the care home for 2 days and they have started to see what she is really like and how bad she really is. They have seen the real her and have said this is the best place for her. I had my crisis point and now i feel i have a chance of getting some life back, knowing she is safe and looked after.

Its tough going. You are not alone and you are not bad for feeling how you are feeling. You are just human. Look after yourself, big hugs xx

 

[Grannie G]

I`m sorry you have had to wait for so long to be listened to and get respite @BeagleBum.

I hope the epilepsy eases now your stress is reduced and your post will encourage others to ask for help when it`s needed.

 

[Gosling]

Gosh @BeagleBum , you have been through a lot.... It's great that your Mum is now in care home accommodation, and I very much hope your own health situation can now improve too.