Friends, Family & Carers Forum

[JustMe48]

The past few months, I have been on the other end of a mental health journey with my mother.  For years she has struggled with it and for years she refused to accept it and do anything about it whilst in the process sacrificing relationships, both family and outside the family.  I have struggled so much throughout my life trying to understand my mum, trying to help her and, as I got older, advise her down some pathways.  Now, unfortunately for me, my mum was the "You don't know what you're talking about, you've never been there ..." kind of person and so any advice hit deaf ears, BUT what she didn't realise was, my upbringing and being around that depression, anxiety and somewhat rejection had left me with my own demons.  I never told her this because I wanted to fix her and fixing her meant fixing me. 

It meant (in my fantasy world) getting my mum back or what I thought a mum should be, not just when she had good days, but every day.  I needed guidance and a mum to solve some of my issues, but I ended up a mum to her.  It fit because I loved her more than she ever realised, but she just never seemed to want to listen and that was exhausting.  She often said "You're my rock" and that was enough for me, that made me feel loved, she needed me and valued me, but eventually, I couldn't cope and hence, for anyone that has read my previous posts, I escaped 10,000 miles away to Australia from the UK.  From the moment I landed, it was like taking my first breath and my life made sense.  It was a fresh start and time to work on me.  Some 13 years later, I am a different person.  I have no mental health issues, no anxiety, no nothing, just a very wonderful family of my own and I'm a fantastic mother.  This could have only happened because of the separation I put between me and my old life and I am forever grateful to myself and proud for doing so.

Now, where was this story going?  The last I posted, circa. 2 weeks ago, was when my mum was kind of between hospitalisation and transitioning back home with community care.  My mum has now refused point blank to take any help, not engaging with hospital professionals, doesn't want to put effort into anything, lashing out, aggressive, constantly trying to escape the unit and "You're all just hurting me!  There's nothing wrong with me!".  She's gone from BPD, which she has always had in my opinion, to full on psychosis because she just won't accept any of it and her now brain, has shutdown to anything that resembles help.  We've been told just in the last 24 hours that she will be moved to a psychiatric unit and then onto a mental health institution and there is NO going back.  She will NEVER be home again. My dad is devastated.  My poor dad who's been through years of ups and downs and denial has now been floored by the reality of it all.  And me, I have had all these mixed feelings towards her of hate, resentment and just wanting it to go away and now, this closure, has made it so real and I grieve so much for a mother I could have had and always wanted, IF SHE HAD JUST LISTENED AND TAKEN THE HELP 20 YEARS AGO!

I am sad for her, I am angry for her, I am overwhelmed with sitting here thinking "I could have picked this 25 years ago and no-one listened, not one of you! Not her, not family, no-one! She played you all at times, she made herself a victim, she almost wanted to be ill so people would surround her ... she ... she ..." and now, LOOK NOW!  The rest of her life institutionalised!  Is this what she wanted?

So, moral of the story and I know mental health is a huge thing, but anyone that is going through similar things and needing the motivation to push on, please ... PLEASE ... follow this story and when someone says "Get help, help yourself and make changes" ... LISTEN!  It's not just about you, it's about everyone that surrounds you.  We all lose, not just you.  PLEASE, just keep fighting!  There's a future out there, bright, fun and needing you in it.  Don't leave a daughter (or anyone for that matter) heartbroken because you knew best.  If I can get through to one person to help themselves and know that they are valued, worth it and deserve a good life, that would be the ultimate gift for me.

@tyme 

[Blackbird11]

Hi @JustMe48 

You've been through a lot and found yourself on the way. Well done on filling your cup first and giving from the overflow. 

" Words inspire but only action creates change." - Simon Sinek

You are proof that recovery is your own process and your process has worked for you. I'm inspired!

[cherryblossom8]

Hi @JustMe48,

Thank you for sharing your story, it must be so challenging and worrying, especially as you are so far away. How is your Dad coping? Is he in good health himself? I do hope that your Mum is being well looked after. I just wanted to offer some hope and comfort. I am not sure how things work in the UK, but psychotic episodes don’t necessarily mean you need to remain in psychiatric units for ever. She might require an extended stay to help her recover, but she may improve with the support of mental health staff. I’m surprised you have been given this news. My experience with my husband and his 2 severe psychotic episodes is that it’s possible to recover with the right care. At this point, we are not quite sure if my husband has underlying schizophrenic disorders, but he had responded well to anti-psychotic medication and regular psychotherapy. Obviously, each person has a different journey, but even it seems like your Mum is in a very serious situation right now, please do try and remain positive. The future might not be as bleak as what has been communicated to you. Mental health is not static, it’s something that continuously change. I hope that you can seek different opinions and find the right care for your Mum. Take good care of yourself.

[JustMe48]

Thanks @cherryblossom8. Your words are very encouraging and I only wish that this could be the case. They are saying she has multiple dementia, one being vascular, which is the one that seems to be controlling her right now. They said she had a personality disorder prior to this final diagnosis and to be honest, her whole life has been chaotic and there has been a lot of denial by family which possibly hasn't helped. It's that era of 'keeping it behind closed doors and don't talk about it. We're British and we pull our god damn socks up", whereas me? I'm talk about it, get it out, help yourself and it's been very challenging because I ultimately became her only confidant and no-one listened. This outcome has manifested over the last 5 years and every seizure she has had (non-epileptic, purely psychologically induced) has taken her one step further away from us. She now has no memory of anyone and is just a chaotic mess. The hospital have said that the possibility of her being released is very slim to no way and, from the psychiatric unit, where they are going to assess her for the next 28 days, the likelihood is she will be placed into adult care permanently. They really have exhausted every test, scan and scenario they can. I can't point a finger at any of the care she has received.

My dad is heartbroken and devastated, but is insistent I stay here and not return home because he doesn't want me to have those memories, the 'if you don't see it, it doesn't hurt you' scenario. For my dad's sake, I hope your outcome is a possibility because, deep down, I ran away from it, but he needs her. He's well enough in himself, but he's a proud man and the idea of not seeing it through to the end, his marriage vows etc. will crush him. No matter what she has done, said or otherwise, she's his world.

Thanks so much for the reply. I appreciate it and let's hope

[JustMe48]

Thank you @Blackbird11 🙂

[Annemarie22]

Thank you for sharing your story. Yes I agree with you. Mental Health is a huge thing and people who suffer the condition need to also help themselves as we can only do so much to help our family. The fact that you started a new life of your own in Australia shows you had the courage to move on with your life and are living a much happier life. Sadly when people have mental health issues, they just shut their spouse, in my case out, they are way to absorbed in their own world of thought to consider anyone or anything else as they do not see a solution/or in better terms want to see a solution that will give them an opportunity to improve their well being if they seek help earlier. However, it seems a lot of people who suffer mental health conditions are in denial, and think the other person has the problem and not them. They are sometimes happier in their own miserable world as to them its a safe haven and to know anything different make them vulnerable.

[cherryblossom8]

Hi @JustMe48,

I'm sorry for the late reply, I am selling my appartment in Melbourne, so it has been a bit hectic! I am so sorry to hear about your Mum's dementia. I can imagine it would be very worrying for you and your Dad. I understand what you said about your family being in denial. It's one of the stages before reaching acceptance. Sometimes, it's easier to brush things under the carpet and not face realities. I know my family went throught this stage too after my husband's first episode. Unfortunately, as you said, it does not help all parties concerned and often makes things trickier to navigate long term.

I don't know much about dementia and if it's possible to be treated at home or with a hybrid model. It would be great to hear from other contributors who have experience with older persons in recovery and especially dementia. I came across a great website with resources on mental health the other day; and I actually found one article that discusses the challenges faced by older people and mental health. Here is the link: https://cmhl.org.au/resource-hub?f%5B0%5D=resources_search_category%3A45

The article is right at the bottom of the page and is called 'Working with Older People to Make Recovery Real in Later Life'.

Also, it might be helpful for you to read some information I found on the Dementia Australia website:

https://www.dementia.org.au/resources/help-sheets#looking-after-families-and-carers

Your Dad might also like to read this too: 

https://www.dementiauk.org/information-and-support/

I haven't read it all, as it's quite a library, but it might help you two make sense of it all. It could be reassuring for your Dad and start conversations with your Mum's caring staff.

I am so sorry the staff seem to think she needs permanent care. If that's what's required now, it's probably best for your Dad that she is supported in this way. But, it does not mean that he can't be involved, I am sure they will ensure there's a real partnership. It will take time for your Dad to process this change, but ultimately it sounds like he deeply cares for her, so he will adapt in this new role. The main thing is that you are supporting him and guiding him during this challenging time. 

I really hope things settled down for you in the next few months. Let us know how you are going with it all. Take good care of yourself.