Suspect i know the answer but need reassurance

[Peony21]

Hi all,

I've not posted for a while but need some emotional support.

I'm an only child and moved mum into care home last year. She's always been anxious and clingy with narcissistic traits but also a very loving side. A lot of historical trauma, so I would say complex ptsd + alzheimer's. There are a few family members who've not helped but do the "how are you/how's your mum?" routine. (Complicated history there too).

Pre going into the home, I had volumes of calls and when she went in, they continued from her mobile. In April, I decided I couldn't cope and took the mobile away. The right thing to do and she's no worse but still mostly unhappy and always asking why they're keeping a mother and daughter apart/ where I am/why is she there etc and getting agitated and angry.

She's only ever been happy when she's with me and our relationship has always felt claustrophobic, although the fun side of her is great. I live about 2hrs away and am now only visiting fortnightly. I'll phone once a week and usually once a week they'll call me to speak to her if all else fails to pacify her.

So, taking phone away has provided some relief but I'm still struggling not to feel jumpy a lot of the time. I'm so angry that I've had to do it all on my own. Bad luck having a rubbish family. I'm now on leave and having hoped to clear the shocking clutter I created over last to years, I feel wretched.

As the title says, I suspect the answer will be, "of course you feel awful " but just need some reassurance. I'm alternating between: tiredness; tearful; angry (very) and jumpy. Within all that, I can see that now she's in the home and I've removed the phone, (guilty but essential decision), there is more freedom than I've had for years, if ever. Mum's mostly lovely and appreciative when I see her, apart from the start or end, when she's angry about "these people who won't let her go home to her mother/ who move her things etc".

There's always been too much mum in my life, and I feel sorry for her history. But I'm feeling very sorry for myself too. I want to feel ok about pulling back and letting others do the donkey work but it's hard knowing that even before alzheimer's, now worse, she misses me and is anxious about me so much.

This might sound weird but one of the things I also worry about is whether the staff will think I'm a bad daughter for only going fortnightly when she benefits so much from my visits. They're actually very good about stressing I need to look after myself and have been great. For some very annoying reason, it's not yet hitting the right spot in me.

So here I am asking for your help.

Thank you.

 

[Grannie G]

Hello @Peony21

I had a friend who lived a two hour drive from her mothers care home. She had a wonderful relationship with her mother but worked full time and had teenage daughters so still only managed to visit fortnightly and even that exhausted her.

You can only do what you can even if it`s a compromise between your physical and emotional health and reassurance for your mother. It is not for the care staff to judge you They are not living your life. You probably visit more times than many

I had a difficult relationship with my mother who was also a narcissist. Her favourite saying was she was number one in her life and when her own mother was in need of care she was happy to allow me to take responsibility.

When my mother developed dementia it was down to me because my sister didn’t want to know I made sure everything was in order to keep her safe and well looked after and I visited weekly because I lived locally, but only stayed a short time.

It didn’t matter if the staff were judgmental towards me. They had no idea of my family history.

All I can say to you is stop feeling awful. Do what you can and what you choose to do. Look after your own self as a priority.

There is nothing to be gained by living with guilt

 

[Marler19]

Hi @Peony21 - you ARE a good daughter and have done your best, and the things you have done to protect yourself and your mental health (visiting fortnightly and letting the phone go) are absolutely right. I have been in a similar situation, it is heartbreaking but you must look after yourself, you cannot follow your mother to where she is now, she’s on her own journey and the care home staff will absolutely not criticise you. You are probably one of the more frequent visitors! As someone wrote on here once - you can’t keep someone else warm by lighting a fire under yourself! My advice would be to talk to your GP: when I was in a terrible state after my mother was admitted to her care home, I was prescribed some meds and they did help. You really must look after yourself, and I would love you to feel reassured though I know it’s more complicated than that! All the best to you xxx

 

[SweetPepper]

I feel for you, possibly GP is your first port of call. Give yourself some time and if you can, do something different. Doesn’t have to be anything big, but break the old habits - ring or text a friend, join a social walk with the ramblers, volunteer to steward at a summer show.

Does your mum know how many days it is until you next visit? If not, string it out to three weeks.

 

[Peony21]

Hello @Peony21

I had a friend who lived a two hour drive from her mothers care home. She had a wonderful relationship with her mother but worked full time and had teenage daughters so still only managed to visit fortnightly and even that exhausted her.

You can only do what you can even if it`s a compromise between your physical and emotional health and reassurance for your mother. It is not for the care staff to judge you However I’m sure you visit more frequently than many.

I had a difficult relationship with my mother who was also a narcissist. Her favourite saying was she was number one in her life and when her own mother was in need of care she was happy to allow me to take responsibility.

When my mother developed dementia it was down to me because my sister didn’t want to know I made sure everything was in order to keep her safe and well looked after and I visited weekly because I lived locally, but only stayed a short time.

It didn’t matter if the staff were judgmental towards me. They had no idea of my family history.

All I can say to you is stop feeling awful. Do what you can and what you choose to do. Look after your own self as a priority.

There is nothing to be gained by living

 

[Peony21]

Thank you so much @Grannie G , @Marler19 & @SweetPepper . I appreciate your sharing.

It really helped you saying I probably visit more than many. I've read so many posts on here where people are visiting many times a week, so good to know!

I think it's now that I can have a proper break that it's all hit me. I've been super strong and actually feel very proud of myself for having done everything I've done, especially recently, without having a nervous breakdown...or murdering someone ?! Think I need rest and to regroup and have 2 clear weeks.

I like the suggestion of leaving it longer, will do that!

I've started seeing a counsellor which is helpful. In a way, it's allowing me to acknowledge the resentment, both for having to do it all on my own, but also re family.

All 3 of you, as people "who know" make me feel stronger about pulling back. I think that's going to filter through over the next few days. Seems like I needed more voices giving me permission and reminder.

A heartfelt thank you x

 

[Peony21]

Love this, @Marler19 ! " you can’t keep someone else warm by lighting a fire under yourself!" X

 

[Knitandpurl]

Love this, @Marler19 ! " you can’t keep someone else warm by lighting a fire under yourself!" X

Hi Peony2I visit my Mum once a week (only 30 mins away), she tells my sister on the phone (sees her 4 times a year, we in Lincs her is Isle of Wight) she hasn’t seen me , or my daughter who also visits most weeks, for ages, and that she also hasn’t been out the Homebsince she saw my sister!!!! It’s very frustrating and like you I feel constantly guilty, both about her, and my OH, (visiting her means leaving him as he won’t come). Stuck with it, you are doing the right thing, it doesn’t matter how much you do it will never be enough, the only person whose happiness you are responsible for is yourself.

 

[Peony21]

Hi Peony2I visit my Mum once a week (only 30 mins away), she tells my sister on the phone (sees her 4 times a year, we in Lincs her is Isle of Wight) she hasn’t seen me , or my daughter who also visits most weeks, for ages, and that she also hasn’t been out the Homebsince she saw my sister!!!! It’s very frustrating and like you I feel constantly guilty, both about her, and my OH, (visiting her means leaving him as he won’t come). Stuck with it, you are doing the right thing, it doesn’t matter how much you do it will never be enough, the only person whose happiness you are responsible for is yourself.

Thank you @Knitandpurl . You're right, she often doesn't remember that we've spoken, or, when I was visiting weekly, how frequently. I've always been told, even before alzheimers, that she wished she could see me more...sometimes she'd say "I'd like to see you every day " , which was/is both sad and claustrophobic.

So I'm going to stick a note on the fridge saying "no matter how much you do, it won't be enough, the damage started before you were even born, time to let someone else take over and spread your wings".

And @Grannie G , you're so right about the guilt. Narcissistic mothers are brilliant at instilling that! So think I'll rest this week then get a literal hammer out to bash the guilt while doing some DIY.

Thank you xx

 

[Jale]

Before covid (isn't everything?), myself and hubby used to visit mum 7 days a week, her nursing home was about a 15 minute car journey away. Then I got something positive from the visits, she was always pleased to see us even though she couldn't remember that we had been.
After covid started to ease visiting was opened but still restricted and it was then that we decided that we would go 3 times a week, (had my own health problems) brother would go twice and I would drop in at weekends when I was able. I felt guilty because I too felt that carers/staff may think that we had dumped mum in a home and wanted to forget about her, but I did speak to one of the carers who we and mum had a very good relationship with and she said some people don't get any visitors at all, even though the family may live close. Does it make the guilt monster easier? Sometimes yes, sometimes no.
I think for what it's worth you are doing the right thing it just takes us a long time to get it into our heads.
Take care and try and concentrate on your own future/health and happiness. x

 

[Peony21]

Thank you @Jale . I appreciate that. And hope your health has improved.

And yes, I'm sure I'll get there but yes, taking time. Getting these replies has made such a difference xx

 

[thistlejak]

You need time to recover from the months and years of caring - caring creeps up on you without you noticing what effect it is having on you - you are focussed on your PWD's needs and not your own.
MIL went into permanent care 2 weeks before the first lockdown - we had been caring for MIL & FIL for about 7 years at that point ( FIL had already gone into care 8 months previously ). The enforced lockdown did us the power of good - we couldn't 'do' anything or go anywhere - it gave us the time to reflect on the effect it had had on us but stopped us having to 'resume normal life'
Take all the time you need for you - your mother is safe and well looked after.

 

[Peony21]

You need time to recover from the months and years of caring - caring creeps up on you without you noticing what effect it is having on you - you are focussed on your PWD's needs and not your own.
MIL went into permanent care 2 weeks before the first lockdown - we had been caring for MIL & FIL for about 7 years at that point ( FIL had already gone into care 8 months previously ). The enforced lockdown did us the power of good - we couldn't 'do' anything or go anywhere - it gave us the time to reflect on the effect it had had on us but stopped us having to 'resume normal life'
Take all the time you need for you - your mother is safe and well looked after.

Thank you , @thistlejak . I really relate to what you say. I actually found myself thinking that in my case, whilst I know how awful it was for most people, it would have probably helped us both had she gone in during lockdown.

You've inspired me...I'm going to treat the next 2 weeks of annual leave like a lockdown! Me time all the way. Time to de-stress, grieve and make plans for more quality me-time on the other side, not just me-recovering-time.

Thank you so much xx

 

[Knitandpurl]

Thank you @Knitandpurl . You're right, she often doesn't remember that we've spoken, or, when I was visiting weekly, how frequently. I've always been told, even before alzheimers, that she wished she could see me more...sometimes she'd say "I'd like to see you every day " , which was/is both sad and claustrophobic.

So I'm going to stick a note on the fridge saying "no matter how much you do, it won't be enough, the damage started before you were even born, time to let someone else take over and spread your wings".

And @Grannie G , you're so right about the guilt. Narcissistic mothers are brilliant at instilling that! So think I'll rest this week then get a literal hammer out to bash the guilt while doing some DIY.

Thank you xx

DIY, spring cleaning, decorating and furniture moving, along with a good ‘clear out’, all very good for the soul, and mental health in my experience. Hugs

 

[Peony21]

Thanks @Knitandpurl ! I have a flat pack chest of drawers and some paint! Think this hot weather week will be crash out week then start my new life stage with a brush and hammer. Now there's a suitable metaphor! Hugs back

 

[Peony21]

To everyone who replied to my call for help, thank you so, so much.

As a result, I spoke to the loveliest of GPs, explaining that whilst I know rationally, that it's ok to relax now and I don't have to be on edge and alert all the time, my body is still on red alert and I'm jumpy and can't relax. She confirmed that I'm burned out and my system needs help to slow down. So gave me some diazepam to help re-set my nervous system and enable me to get the rest I need while on leave. What a difference it's made! I actually feel like me again and that I can cope.

The GP and your support has turned things around and I am so grateful xx

 

[JHA]

I can totally relate to your initial post and part of it is almost as if I had written it.

Like you I am an only child so zero support from 'relatives/moms brothers and sister' unless you count the odd phone call or five minute conversation if I call them.

My mom has lewy body dementia and up until Christmas 2021 lived alone with me going over every morning which was starting to become unsustainable. On 23rd December she was more confused than normal and the GP prescribed antibiotics for a suspected infection - I left her after tea as she seemed more with it and in good spirits. Just before 1am I had a call off the police saying she had been found on the corner of her road.

I then tried to keep her safe by sleeping on her sofa at night then taking her back to my house during the day - I lasted just over a week whilst her GP, Social Services and Mental Health kept saying they would come up with a plan. No plan was made so I made my own and admitted her into a local care home on respite as if I had waited for the powers that be to do something they would have needed two plans not one.

Mom went willingly into the care home but once she realised what was happening to say I was called all the names under the sun was an understatement plus she had her mobile so was calling me and my uncle to pick her up (it caused my uncle a few sleepless nights - welcome to my world). In the first few weeks at the care home she tried everything to leave, was aggressive to residents and staff, pressed the fire alarm and even attempted to put a fire extinguisher through the door. Luckily for me they were on lockdown for Covid so I was unable to visit I would just drop things she needed off. Medication was reviewed and she calmed and is now relatively settled.

Brain tells me that there is no way she can return home but my heart still breaks and thinks is there another solution. I only live 15 minutes from the care home but only visit once or twice a week as it destroys me every time I go - its almost as if I have a brick wall around me - sometimes a crack appears but then I build it back up. Thankfully she no longer asks to go home but at times I feel like the worst daughter in the world for doing this to her.

 

[Peony21]

I can totally relate to your initial post and part of it is almost as if I had written it.

Like you I am an only child so zero support from 'relatives/moms brothers and sister' unless you count the odd phone call or five minute conversation if I call them.

My mom has lewy body dementia and up until Christmas 2021 lived alone with me going over every morning which was starting to become unsustainable. On 23rd December she was more confused than normal and the GP prescribed antibiotics for a suspected infection - I left her after tea as she seemed more with it and in good spirits. Just before 1am I had a call off the police saying she had been found on the corner of her road.

I then tried to keep her safe by sleeping on her sofa at night then taking her back to my house during the day - I lasted just over a week whilst her GP, Social Services and Mental Health kept saying they would come up with a plan. No plan was made so I made my own and admitted her into a local care home on respite as if I had waited for the powers that be to do something they would have needed two plans not one.

Mom went willingly into the care home but once she realised what was happening to say I was called all the names under the sun was an understatement plus she had her mobile so was calling me and my uncle to pick her up (it caused my uncle a few sleepless nights - welcome to my world). In the first few weeks at the care home she tried everything to leave, was aggressive to residents and staff, pressed the fire alarm and even attempted to put a fire extinguisher through the door. Luckily for me they were on lockdown for Covid so I was unable to visit I would just drop things she needed off. Medication was reviewed and she calmed and is now relatively settled.

Brain tells me that there is no way she can return home but my heart still breaks and thinks is there another solution. I only live 15 minutes from the care home but only visit once or twice a week as it destroys me every time I go - its almost as if I have a brick wall around me - sometimes a crack appears but then I build it back up. Thankfully she no longer asks to go home but at times I feel like the worst daughter in the world for doing this to her.

Oh, @JHA , I feel for you. I wish they'd give mum some meds. That's a whole other battle I've temporarily given up on chasing.

Like your mum, mine tried everything to leave....managed to find a couple of chinks in the security and escaped twice! I'm glad you mum has at least stopped asking to go home. It's so hard to deal with that one, isn't it.

My goodness, you are so far from being the worst daughter in the world. You've been and are doing a brilliant job but do take care not to burn out like me. If you need a break from such frequent visits, give yourself permission.

Big hug from a fellow only xx

 

[JHA]

Oh, @JHA , I feel for you. I wish they'd give mum some meds. That's a whole other battle I've temporarily given up on chasing.

Like your mum, mine tried everything to leave....managed to find a couple of chinks in the security and escaped twice! I'm glad you mum has at least stopped asking to go home. It's so hard to deal with that one, isn't it.

My goodness, you are so far from being the worst daughter in the world. You've been and are doing a brilliant job but do take care not to burn out like me. If you need a break from such frequent visits, give yourself permission.

Big hug from a fellow only xx

Thanks for taking the time to reply fellow only.

I think we struck lucky if you can call it that meds wise. After mom went wandering Mental Health got involved and a Consultant who came out to her at home made the mistake of giving me his email address and when things were going pearshaped at the care home and she was so unsettled I got in touch with him. He had not been much use two days before Christmas but I flattered his ego so he came out again to see her in the care home. At one point he asked which area of medicine I worked in so I must have said the right things - my claim to fame was a Biology O'level, a few years working at a Healthcare company and a short spell as a medical secretary!

I want to go to see my mom but admit I do not enjoy the visits. My dad died over 30 years ago when I was 19 so its a stomach punch every time she asks if I have seen him. Yesterday the topic of conversation was about her death certificate and that I needed to take two photocopies and that her brother was going to fetch it for me! Apparently she had given him money to pay for it and he could keep the change if there was any. Then she went onto say if anyone said she owed them money they were telling fibs she had never borrowed any money.

Its my birthday next week and she asked me to get myself a card (that hurt) so I took two for her to pick from. She gave it me yesterday but can no longer remember how to write my name. Its heartbreaking to watch little bits slip away.

 

[Peony21]

Hi @JHA ,

Yes, birthdays are so heartbreaking now. I feel for you. And I wish you as good a birthday as possible next week.
My mum sometimes asks me when my birthday is. First time was a shock as she'd usually be on my case about what I wanted at least 2 months ahead. Needless to say she missed it altogether the last 2 years. Very big ouch. It leaves a bigger mark in absence of siblings etc, doesn't it. So big hug.

With temperature going to be in 30s next week, I just realised I'll need to go tomorrow to take her some of her cooler clothes I kept when I cleared her flat. ? That'll trigger "why are you bringing them here?" Then next visit she'll be complaining that people have put name labels on clothes that aren't hers, or that most of them aren't hers, and "how would you like it if someone kept putting their things in your room and moving your things?" (She packs all her stuff every day!) Yep, to paraphrase earlier replies, there'll always be something or someone wrong to complain about! Xx