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Hi,

Sorry to hear what you are dealing with. I am actually being informed about almost everything which is good and I know what medications she is on as she needs me to help her stay on top of it. She's currently undergoing ADHD testing too. I guess I'm lucky that my daughter is not aggressive or abusive towards me.

Hello!

I am new to this space and am a loved one for a DID system who has become increasingly detached from their family. I am feeling really alone in caring for them, although they DO have wonderful psychiatric care and carers. I don't live nearby and find their experiences going into hospitals so often disturbing around the way they are treated. It is so hard to know how to support and help them!

I am hoping to find support and help here and of course others who understand some of these experiences!

Cheers

Hi @DogsCatsBirds4E ,

Welcome to the forums. Thank you for sharing. I can totally hear the challenges that come with hospitals. It can be traumatic for both the person and the carer. It's most important during these times that you monitor your own health and wellbeing.

What are some things you do to stay well yourself?

Also, in the hospital, is there a carer peer worker you can reach out to?

@MatchaToad @Dimity @Shaz51 @Oaktree @Chasingsunsets , do you have any insights you can share?

Thanks for your reply!

I find that if I am there, they are not using a carer, it is often them or me - but I have no training.

I have often wondered if it's appropriate to ask for the contact details of carers and doctors who might be able to help me when they maybe can't be in contact for some reason.

I am super careful with their trust and confidence too, though - they are quite independeant.

Everyone's situation is different @DogsCatsBirds4E .

I think it's important to get the perspective of the person themselves. Do they WANT you to have the contact numbers of the carers and doctors? Also, do you think the family will have issues with you having their details?

Also, something to consider: Are you able and willing to 'take over' carer responsibilities for them if they start gravitating towards you more than their family?

It may be worth considering what boundaries you will put in place to protect yourself. Say, you may let your loved one have time to talk to you, but when it comes to other aspects, you stay clear of them because it is set out that that is the family's responsibility (e.g. finances, housing, medical decisions etc)?

Sorry, I dont know if I'm explaining myself properly.

Hey @DogsCatsBirds4E 💚

Thanks for the tag @tyme 💚

I want to start off by saying I hear you, and I truly understand how heavy that feeling of isolation can be. I used to be a carer for my sibling who has DID, so I know first-hand that 'helpless' knot in your stomach, especially when the medical system doesn't seem to provide the level of understanding or dignity our loved ones deserve.

It is incredibly draining to navigate the distance, both physically and emotionally, as they become more detached. Please don't underestimate the weight of what you are carrying. Even when there is 'wonderful' psychiatric care in place, the role of a loved one is a completely different kind of labour. A labour of love, I suppose you could say.

Being the person who sees the human (and the whole system) behind the diagnosis is a powerful form of support, even if it doesn't feel like 'enough' right now. You have found a community here that truly understands the nuances of dissociative identities and the unique challenges of supporting them.

It is awfully easy to let your own well-being slip to the bottom of the list when you are worried about a loved one's safety and their treatment in the hospital. Self-care in this context isn't just about relaxing; it's about reserving enough energy so you don't burn out from the secondary stress of their diagnosis.

Since you are supporting them from a distance, your self-care should focus on grounding yourself and creating emotional compartments. I wanted to share with you a few things that may be of use to you. It's totally okay if these don't feel right for you; there's no pressure to try these.

• Set specific check-ins in windows (e.g. 10 am to 6 pm). Outside of those times, put the phone down in another room. If there is a true emergency, the hospital or the carers will find a way to reach you.
• If you're near the coast or a park, go there to specifically listen to the waves or the wind in the trees. High-fidelity nature sounds or classical music can help reset a frazzled nervous system when you can't get outside.
• Try "brain-dumping" into a private journal or a creative project. Don't worry about making it make sense or being fair. Just get the frustration with the doctors, the distance, and the DID system's detachment out of your head and onto paper.
• Try radical acceptance by saying to yourself, "I cannot control the hospital staff, and I cannot force the system to attach to the family right now. I can only control how I show up for myself in this moment."

Your stability is a gift to their system 💚

Take a deep breath, you don't have to carry the worry for their safety and the frustration with the hospital system all by yourself now. I am so glad that you are here 💚

You are explaining yourself really well and thank you.

You are right and I have recently been asking directly if I can have access to carers numbers - but i think they prefer to keep things separate for now.

They are actually fully estranged from their mother - as their preference, which I do support because their mother doesn't seem to be dedicated to keeping them safe, sadly.

So they are in contact with siblings but they live a long way away and don't seem able to be of support in this realm. All other family are not in contact.

So it already IS me that's listed as next of kin.

I have been and am willing to be in this role, but it concerns me how to live so far away and not feel more resourced to help.

They handle so much themselves, so I am really just friend and emotional support, which although is vaulable, sometimes feels very helpless.

As you mentioned, I do have to consider my boundaries because I found myself suddenly the only 'family" still there. And looking after myself has become a concern.

Wow thank you, that just brought me to tears, you've articulated so much of what I am struggling with!

Right now I have been feeling something of a rock bottom due to other great losses of my life in a short time, so having them in a very unstable place for multiple reasons is tricky. Sometimes it really is hard to look after yourself, no matter how much you need to.

I appreciate your suggestions, they align with things that I do, but it is great to be reminded to do them with purpose and timing, to implement them as a strategy.

Your support and affirmation means a lot, thank you!

We are here for you @DogsCatsBirds4E .

Also, @DogsCatsBirds4E , you can tag members into your post so they get a notification and don't miss your message e.g. @MatchaToad