Nowhere left to turn

[JHA]

You need to concentrate on you - you have given everything you have to your mom and unfortunately you now need to put yourself first. Empathy was one of the first things I noticed vanished with my mom and looking back it went way before she got a diagnosis - once she had a diagnosis it was as if Pandora's box had been opened.

My situation is a little different but when crisis point came for my mom I tried my best to muddle through but realised after just seven days of sleeping on her sofa at night then returning to my own home and family with her during the day that it was her or me and I chose me. It was one of the hardest decisions I have ever made and two years later I wish I could have done something different and still do but I know that at the time I made the right one.

Contact SS or even Mental Health tell them she is a vulnerable adult and that you can no longer take responsibility for her safety. I was 'lucky' (if you can call it that) as I was able to organise respite care when Mental Health kept promising to help and did basically nothing they just left me to it for over a week. In fact they called up two hours after I had left her in respite to tell me they were finally coming out to see her with a plan - that plan had been promised two days before Christmas when she was found on the corner of her road at 2am by police.

 

[Melancholy]

Hey Mel
talk to us ………
u r not on ur own!

Thank you for your support.

 

[Melancholy]

I don't know where to begin @Melancholy except to say that I've just read your post and feel quite sad that you're going through this. On here, you are not alone. From a personal perspective, 13 years ago I left a 20-odd year old relationship with nothing other than the clothes on my back. I understand the dreadful feeling of loneliness.

I did meet someone else and we ended up getting married. Together we've gone through losing parents, the most recent one being my mum who had Dementia. I feel that I've had so much support from people on this forum - so please keep posting. As said, on here you are not alone.
S x

Thank you for taking the time to reach out.
I’m sorry you went through so much.
It’s good to know you met someone and were able to support him as much as he supported you.
Times can be so challenging for us all.
This forum is proof that there’s light at the end of the tunnel. x

 

[Melancholy]

Blimey! I'm going to shout this because I feel that you might not listen otherwise. YOU NEED HELP!!!!!!
Seriously, looking at the time you posted this and hearing your very obvious distress, today needs to be the day when you think about yourself, start the wheels turning and change how things are. Easy to say, I know, but you can't go on like this. I'm sure others will appear on here to make recommendations about your mum and her care- my concern is very much for your health and well being. Please contact your GP, show her this post if you find it difficult to talk. Contact adult social services and TELL them that they will need to take over care of your mum. Your life, health and well being are what's important right now.
Keep posting on here, people with much better advice than me will be along soon X I just wanted to reach out and send you a virtual hug and let you know that I am listening and I care X

Thanks for offering me some words of advice and encouragement.
You’re absolutely right….I do need help.
The depths of my despair have manifested after so many failed attempts at trying to get the help and support needed.
It’s draining to keep being fobbed off or made to feel like you’re being overly dramatic/neurotic.
Opening up and asking for help is hard.
To be met with such a lack of compassion, over and over again, chips away at your self worth and sense of dignity.
Thankfully, I no longer care how i’m perceived.
I’m funny, inappropriate and the filter I once had has completely disappeared!
It’s quite liberating!
My health issues have become farcical. In fact, if I were a horse, would’ve been turned into glue a long time ago (no offence to horse lovers).
I’ve finally had my health taken seriously and am getting the referrals needed.
Shame things had to pop internally before they took notice, but i got there eventually.
So…. I think I might be on the right track.
I’m not stressing about Mum, work, mortgage and all the other stuff.
One thing at a time.
I’ll speak with social services. Certainly not getting anywhere with the other service providers.
I really appreciate your advice and caring words.
The hug was very helpful too.
Thanks again. x

 

[Melancholy]

@Melancholy I am so sorry to hear what you are going through. There is some really good advice on here.

I also suffer from insomnia (bouts of it) and everything seems worse if you can’t sleep. Can you talk to your GP about it? Mine was reluctant to prescribe anything but I have found exercise helps a bit as well as cutting down on caffeine.

I hope you can get something sorted out with care.

Thank you for your comments.
Yes. Insomnia has driven me bat s**t crazy!
My door camera caught a chap in a balaclava making his way round the back of my house recently.
It was approximately 3am and the sleep deprivation turned me into a wild beast.
I ran outside in bare feet, feeling full of rage. The rain was hammering down and I couldn’t find him.
I ran to the back of my house, returned to the front and then out into the street, shouting at him to show himself!
Mental behaviour.
It wasn’t until I’d calmed down and reviewed the footage that I realised there was no-one there! The lights of a passing car had reflected off walls and bushes, tricking me.
That’s one of many bizarre occurrences as a result of my insomnia.
The GP has listened to me banging on about my chronic sleep issues for years but apart from some tablets and telling me to eat more/relax more, thats been it!
Since I’ve been signed off, my sleep has improved a lot.
It's still bad when I have a difficult day with Mum though.
I was due to meet with an exercise coach (via social prescribing) last week, but he cancelled.
I emailed him yesterday and to rearrange.
You’re absolutely right. Exercise will help.
Just need a helping hand to get started again. Wish me luck.
I’m grateful for your help. x

 

[Melancholy]

Dear @Melancholy ,
I first read this last night, and was so shocked I didn't know how to respond.
As others have said you need to put yourself first at this stage.
Your Mum has obviously selected your brother by giving him her money. (I thought that my brother was unpleasant!) I would suggest letting him know that his Mum is now his problem, as you need to take care of your own health.
Walk away. Don't be guilt tripped. Your health comes first at this stage.
You are in my thoughts.

I’m so glad you took the time to read my post and respond.
Sounds bizarre but it’s taken until now to realise I’ve never put myself first!
Think I’ve used helping others as a way to avoid my own problems. Classic ostrich!
Posting on here shows promise though I suppose!
As for my Brother….not a chance!
He really doesn’t care at all, especially where I’m concerned.
Mum wouldn’t dream of inconveniencing him either (and has told me so).
Hitting my lowest point has been sad but necessary.
I genuinely didn’t think I’d be here now, typing this message, but I am.

Writing replies to all of the wonderful people on here has boosted my mood massively!
It’s been almost 10 years since I had a holiday and I deserve a break!
Sod everything and everyone else. I need sunshine and swimming.

Any suggestions would be greatly received!

Thank you for nudging me in the right direction. x

 

[Melancholy]

You need to concentrate on you - you have given everything you have to your mom and unfortunately you now need to put yourself first. Empathy was one of the first things I noticed vanished with my mom and looking back it went way before she got a diagnosis - once she had a diagnosis it was as if Pandora's box had been opened.

My situation is a little different but when crisis point came for my mom I tried my best to muddle through but realised after just seven days of sleeping on her sofa at night then returning to my own home and family with her during the day that it was her or me and I chose me. It was one of the hardest decisions I have ever made and two years later I wish I could have done something different and still do but I know that at the time I made the right one.

Contact SS or even Mental Health tell them she is a vulnerable adult and that you can no longer take responsibility for her safety. I was 'lucky' (if you can call it that) as I was able to organise respite care when Mental Health kept promising to help and did basically nothing they just left me to it for over a week. In fact they called up two hours after I had left her in respite to tell me they were finally coming out to see her with a plan - that plan had been promised two days before Christmas when she was found on the corner of her road at 2am by police.

I’ve made it my mission to reply to all the wonderful messages of support I’ve received on this forum.
It’s taken most of the night, but an absolute pleasure to feel a sense of achievement.
I’m humbled by all the encouragement, support, understanding and lack of judgement!

Yes, I really have given my all to everyone/everything else.
My father, mother, jobs, past relationships and friends.
All my efforts, kindness and sacrifices have gotten me absolutely nowhere 😆.
I’ve spent the last couple of years feeling bitter, angry and isolated but right now, I’m feeling motivated to bounce back!
(Give it a few hours)!

I’m sorry you went through such a rough time with your own mother.
Her lack of empathy sounds exactly like my mother.
Mum’s never been loving or compassionate, but now she’s being cruel, spiteful and manipulative.
Pandoras box, absolutely!
Your situation was different but much more challenging, with other family members to look after too!
Well done for having the strength to do the right thing for you and your Mother.

I’ve been in contact with various mental health services and, like you’ve experienced, they’ve been useless.
Lost count of how many conversations with the Dementia Wellbeing service I’ve had.
Even had the mental health crisis team come to my house with the police after I’d told them I was suicidal…..no help came from it. It’s a joke.

I’m sorry that your mother was let down by these services too.
Must’ve been horrific when you had that call at 2am!

Whatever the future has in store, i’m sure it’ll all work out in the end.
I can’t deal with anything much at the moment. My health has taken priority though and I really want a holiday.
Thank you again for being so lovely. x

 

[JHA]

I’ve made it my mission to reply to all the wonderful messages of support I’ve received on this forum.
It’s taken most of the night, but an absolute pleasure to feel a sense of achievement.
I’m humbled by all the encouragement, support, understanding and lack of judgement!

Yes, I really have given my all to everyone/everything else.
My father, mother, jobs, past relationships and friends.
All my efforts, kindness and sacrifices have gotten me absolutely nowhere 😆.
I’ve spent the last couple of years feeling bitter, angry and isolated but right now, I’m feeling motivated to bounce back!
(Give it a few hours)!

I’m sorry you went through such a rough time with your own mother.
Her lack of empathy sounds exactly like my mother.
Mum’s never been loving or compassionate, but now she’s being cruel, spiteful and manipulative.
Pandoras box, absolutely!
Your situation was different but much more challenging, with other family members to look after too!
Well done for having the strength to do the right thing for you and your Mother.

I’ve been in contact with various mental health services and, like you’ve experienced, they’ve been useless.
Lost count of how many conversations with the Dementia Wellbeing service I’ve had.
Even had the mental health crisis team come to my house with the police after I’d told them I was suicidal…..no help came from it. It’s a joke.

I’m sorry that your mother was let down by these services too.
Must’ve been horrific when you had that call at 2am!

Whatever the future has in store, i’m sure it’ll all work out in the end.
I can’t deal with anything much at the moment. My health has taken priority though and I really want a holiday.
Thank you again for being so lovely. x

Thank you for taking the time to reply. I always find talking helps but then again I am a 'talker'.

The first job on your to do list today is to put the kettle on then start looking for a holiday!!!!!

Take care - we are all in the same boat bailing out water as fast as we can. I know its easy to say but take each day as it comes but make sure you get that sun on your back asap.

 

[Melancholy]

Hello @Melancholy and welcome to the forum

Yours is one of the saddest stories I have read on here. You have cared for both parents for years, sacrificing yourself to do it and have now reached carer burnout.

Your mum has lost insight due to the dementia, is unable to see her own symptoms and thinks there is nothing wrong with her. She is unable to comprehend how much you have to do for her and what a terrible toll it is taking on you - and she probably wouldnt care either, because people with dementia lose empathy and are unable to see things from anyone elses viewpoint, or even realise that others have needs too. All she can see are her own wants, needs and desires - and all she wants is you to do things. Probably, every time you do something for her, in her own mind she is thinking "its just this one little thing", forgetting about all the rest of the "one little things". All the while you are doing things for her she will see no reason to accept carers.

Equally, all the while you are there, plugging the gaps and keeping your mum safe, Social Services will just let you get on with it. Your mum is their client, not you, and they are only interested in whether your mums needs are being met and whether she is being kept safe. Your health and welfare is beyond their remit.

Your only course of action is, unfortunately, to step back - and even then SS may try and call your bluff to get you back to caring for your mum.
Ive been in your position - my home help found me shuffling 6 packets of paracetamol. The outcome of this was that I spent a night in hospital and couldnt face going back home, so I spent several nights in a travel lodge. OH went into emergency respite for a few weeks until I was a bit better and had to accept carers coming in on condition of him coming home. BTW, antidepressants take a month to "kick in" and before that happens you do feel worse.

Please, please contact your GP and let them know how bad you feel. Also contact SS and tell them that you cannot do this anymore and will be leaving - then go somewhere else for a week, even if its only a travel lodge.
(((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

Thank you for taking the time to reply. I always find talking helps but then again I am a 'talker'.

The first job on your to do list today is to put the kettle on then start looking for a holiday!!!!!

Take care - we are all in the same boat bailing out water as fast as we can. I know its easy to say but take each day as it comes but make sure you get that sun on your back asap.

Ha!
I’m not a talker, but as it turns out, I’m a typer (with less vitamin D than Dracula).

Thanks for helping me stay afloat!

 

[canary]

Ha!
I’m not a talker, but as it turns out, I’m a typer (with less vitamin D than Dracula).

Thanks for helping me stay afloat!

Do carry on posting here

And book that holiday! ☀️🍸

 

[Melancholy]

Hello @Melancholy and welcome to the forum

Yours is one of the saddest stories I have read on here. You have cared for both parents for years, sacrificing yourself to do it and have now reached carer burnout.

Your mum has lost insight due to the dementia, is unable to see her own symptoms and thinks there is nothing wrong with her. She is unable to comprehend how much you have to do for her and what a terrible toll it is taking on you - and she probably wouldnt care either, because people with dementia lose empathy and are unable to see things from anyone elses viewpoint, or even realise that others have needs too. All she can see are her own wants, needs and desires - and all she wants is you to do things. Probably, every time you do something for her, in her own mind she is thinking "its just this one little thing", forgetting about all the rest of the "one little things". All the while you are doing things for her she will see no reason to accept carers.

Equally, all the while you are there, plugging the gaps and keeping your mum safe, Social Services will just let you get on with it. Your mum is their client, not you, and they are only interested in whether your mums needs are being met and whether she is being kept safe. Your health and welfare is beyond their remit.

Your only course of action is, unfortunately, to step back - and even then SS may try and call your bluff to get you back to caring for your mum.
Ive been in your position - my home help found me shuffling 6 packets of paracetamol. The outcome of this was that I spent a night in hospital and couldnt face going back home, so I spent several nights in a travel lodge. OH went into emergency respite for a few weeks until I was a bit better and had to accept carers coming in on condition of him coming home. BTW, antidepressants take a month to "kick in" and before that happens you do feel worse.

Please, please contact your GP and let them know how bad you feel. Also contact SS and tell them that you cannot do this anymore and will be leaving - then go somewhere else for a week, even if its only a travel lodge.
(((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

I’ve been overwhelmed by all the responses to my self pitying outpours.
When I originally expelled my depressing ramblings onto this forum, I genuinely didn’t expect anyone to comment.
If i’m honest, I was surprised anyone actually read it all the way through!
Not entirely sure what I’d written but it was absolutely pouring out of me. Makes me cringe to think about it, so i’ll avoid reading it back.

Everything you’ve said is spot on.
Mum has no concept of how much I’ve done and continue to do for her. And yes, she literally doesn’t give an **** either.
If I’d not made life easier for her when she was failing to look after Dad, I wouldn’t be in this position now.
You phrased it perfectly. ‘Plugging the gaps’.

I’m sorry you reached such a low point and had to take such drastic measures but I completely understand.

I mentioned to another lovely member on this thread that i’d not had a holiday for nearly 10 years.
My health is bad and I’ve got so many other big problems to face that it’s time for me to have a break.

I’ve been telling GP and the Dementia Wellbeing services just how bad things are since before my father passed. That was two years ago!
Even told them I was suicidal!
Argh! I’m winding myself up again now.
Lack of sleep has contributed this morning.

I’m seeing my GP this week about my recent health issues. My heart and other organs have suffered, so you’re right…. i need to get away.
When I sign off from this message, I’ll call the dementia navigator again and tell her in mo uncertain terms that they need to step in.

Thanks again for your motivation, advice and support.
You’re an absolute star!

 

[Roo91]

I’m a female in my mid forties and desperate for someone to come and take me away.
My 20 year relationship broke down 5 years ago. He was abusive and I finally had enough (thanks to peri menopause making me speak up)
Left my beautiful home with nothing and had to start over.
My father was well into his Alzheimers journey and my old dear was showing signs of dementia too.
Mum rang me constantly and I gradually started doing more and more for them.
Then COVID hit. I was working full time from home and that’s when it all went to ****.
Mum was adamant she could look after Dad but failing miserably.
Kitchen fires, falls, medication not being administered properly to Dad and a plethora of other things.
I applied 7 times to Occupational Health and she would convince them all was well. Literally wouldn’t entertain any form of outside help.
I was then attacked in my home by someone I’d hired to do some gardening and I’d also managed to bag myself a stalker too! You couldn’t make it up!
Before I knew it, I was pretty much doing everything to ensure my parents were ok.
Hours making calls, filling forms , arranging appointments, medications, sourcing equipment…..blah, blah, blah.
I became a chronic insomniac and wasn’t able to cope with my workload.
Went off sick after years of being the hardest worker they had and it kept getting worse.
Every day Mum presented another catastrophe for me to sort.
I’m waffling….sorry.
Dad was on his last legs and I was somehow managing to keep them safe and make life easier for Mum (all behind the scenes).
Dealt with the police regarding the stalker and the attacker, but totally exhausted.
My breakdown was imminent.
Dad passed last year and I thought things would get better.
How wrong I was.
Mum turned into a zombie and I had to arrange the funeral, design the orders of service, write the celebrants speech etc….oh, and pay for it whilst having to keep her from falling apart.
I was back at work by this time but it wasn’t long before I went off sick again.
My own health spiralled and alongside the insomnia, I’ve been fighting constant infections and had operations as a result.
I’m not eating, rarely sleeping, and I think it’s almost become a sort of self harm for me.
Finally got Mum diagnosed with Alzheimers after battling for years with the GP, who constantly kept telling me she was fine. The woman is a master at presenting well to others which has and continues to be a huge difficulty.
Now I’m on a phased return at work and clinging on to my job for dear life.
Once the popular girl who was diligent and portrayed myself as being on top of things, never asking for help but always helping others. Now all my colleagues have witnessed by manic behaviour, panick attacks and erratic displays.
I’m humiliated and alone.
I’ve lost every single one of my friends and it’s floored me. No one showed any compassion or bothered to send me so much as a text.
I volunteered on a radio show and was a social butterfly.
Now I’m alone, slovenly, hate leaving the house, look terrible and on my knees.
Mum is a complete nightmare and there’s no chance for me to get myself back on the starting block.
I’ve called helplines, breaking down. I’ve paid for counselling, which was useless, been back and forth to my own doctor begging for help and given antidepressants that made me worse.
Now I’m not able to keep food down and having tests for gastrointestinal cancer.
Sounds awful but I genuinely don’t care if I have a serious illness. There’s nothing left of the person I was and any fight I had left in me has gone.
My childhood was terrible and my parents were cold, uncaring and unkind.
I’ve done everything in my power to care for them both and my own life has been wrecked.
My older brother has a beautiful home, kids, partner and doing well. He’s not done a single thing to help.
Calls my mother maybe three times a year and only visited her after Dad passed, to grab some antiques and most of her life savings, which she was only too happy to give him.
Blimey….I’m writing a novel.
I’ve just called a mental health helpline once again and came away feeling foolish.
Four days without sleep and dreading the thought of going to work in a few hours, as has been the case every week for so long now.
I don’t want to sound so depressing. Just being honest.
I’m on my own with a mortgage to pay. No children, partner or other person to share the load and I’m trying to find a reason to keep going.
My house is a mess and I want it all to end, but my mother needs me, so that’s not even an option.
All my life I’ve worked hard and done everything for other people and it’s been a waste of time.
I’m stuck on a train that I can’t get off.
Thank you for enduring my feature length rant (if any of you have managed to keep reading until the end).
I feel lighter for offloading, and quite embarrassed if I’m honest.
No responses are necessary. It’s been good to moan to others that have an understanding.
Thank you.

What a society we live in where we are all left to just “cope”. All these different services sound great but take months to arrange if at all. But nights and weekends are too expensive so we all hide behind doors with a nightmare version of a once loved one. Watching telly. Taking butter and cheese out of the cupboard into the fridge. My husband constantly reorganises. Puts all my books and bits and pieces from the kids into the bin. So I’ve locked everything up but now it’s not a home. I can’t cry except occasionally in the garage. Not sure why there.

 

[Kevinl]

So Melancholy , have you decided where you're going for the holiday yet, get it booked, out yourself first for once. K

 

[Suetsue]

sending hugs, don’t know what to advise as it had already been said but want to say thank you for sharing, I’ve had a bad morning, went for a quick walk to clear my head before he noticed I’d gone and before I said anything nasty, I hate my self sometimes, I’m not the person I was, feel his dementia has sometimes turned me into a nasty person. Anyway thank you for sharing your journey, it distracted me from my own problems ! get that holiday booked, then you’ll have something to look forward to x

 

[SeaSwallow]

sending hugs, don’t know what to advise as it had already been said but want to say thank you for sharing, I’ve had a bad morning, went for a quick walk to clear my head before he noticed I’d gone and before I said anything nasty, I hate my self sometimes, I’m not the person I was, feel his dementia has sometimes turned me into a nasty person. Anyway thank you for sharing your journey, it distracted me from my own problems ! get that holiday booked, then you’ll have something to look forward to x

@Suetsue, I am sure that you are not a nasty person. We all have bad days and maybe do not react in the way that we think we should but we are only human. Dealing with dementia is the hardest thing in the world. It was good that you went for a walk, I also find that helps me when I get upset or annoyed. Take care and once again, you are NOT a nasty person.

 

[Suetsue]

@Suetsue, I am sure that you are not a nasty person. We all have bad days and maybe do not react in the way that we think we should but we are only human. Dealing with dementia is the hardest thing in the world. It was good that you went for a walk, I also find that helps me when I get upset or annoyed. Take care and once again, you are NOT a nasty person.

🥰 just made me cry, in a good way, thank you

 

[SeaSwallow]

🥰 just made me cry, in a good way, thank you

You are welcome. 🤗

 

[Seloptape]

Hi M . So sorry to hear your woes ...cant imagine what it must be like for you but agree with everyone else that YOU are the priority . You are no good to anyone in this state. If your mum did not speak to you for two weeks it shows she is able to cope on her own . I would do what your brother did and walk away particularly when that life savings could have been used to care for her . I think you will find she will then find her own voice and do something about it ...then and only then will social services act.

 

[Lawson58]

You have absolutely hit rock bottom so now you need to start finding your way up.

I know your mum doesn’t want to inconvenience your brother but this not about what she or he want, it’s about what you need.

They have trampled all over you, used you, bullied you and have no respect for you. So it’s time to get your self respect back and I think you might try biting the proverbial bullet.

So what would happen to your mum if you need to be hospitalised and couldn’t care for her? And not withstanding your mother’s views, what not just tell him you cannot care for her anymore and he is now responsible for her?

I know that sort of thing is tough when you are feeling miserable but this is about rescuing yourself and that is something you have to initiate yourself. Remember the first step is the hardest, but gosh, doing something like that can be so rewarding.