Friends, Family & Carers Forum

[Former-Member]

Hey @Littletink_

Feeling your pain, hearing you loud and clear. I too felt as though I was drowning in his mental illness.

Three things changed things for me, getting psycho education (self study and a Wellways course), understanding mental illness and its treatment as well as a recovery model that jelled with me was one thing. This is the CHIME model that is also relevant to caregivers.
The 2nd thing was accepting the diagnosis and making a choice to willingly and lovingly support my husband in his recovery from his acute episode and hopefully into ongoing remission and into our old age. (This after years of misdiagnosis and inappropriate treatment which ended with a 2 year crisis and suicide attempt). This meant evaluating what was important to me and placing on hold or letting go what was not.
The 3rd thing was finding the fresh hope website, to realise that we can live well in spite of a mental illness, their loved one tenets really helped me (please don't be put off by the religious side of things, these are very, very good). Mr Darcy still cannot see this but I hold into hope that he will.

It took months following discharge from hospital for Mr Darcy to regain any motivation and it was primarily a med change that contributed to this (BTW things also improved in the intimacy dept following that too).

Finding a good balance with patient autonomy and appropriate carer support, which is different for each of us, has been difficult as capacity was impaired for quite a while. Mr Darcy is not good on medical matters and assures me that he values my input and that I have not overstepped the mark. Providing your partner has consented there is no reason why you cannot ask about each of the meds your partner is on, what are the expected benefits and risks and when a review is to happen.

19 months on, things are still slow, Mr Darcy is gradually doing a bit more but all very much at snails pace. I have lots of thoughts around things including Mr Darcy's inability to manage our farmlet. We have a bit if a set back - physical pain at one of the sites he injured in his attempt - this has impacted negatively on his MI. There are challenges in pain management in BP. I found this story that highlights the time acute recovery took for the author.

https://www.google.com.au/amp/www.beliefnet.com/columnists/beyondblue/2012/09/i-said-to-my-soul-be-s...

Chime model:
https://www.scottishrecovery.net/chime-diagram/

Fresh hope
http://freshhope.us/about-fresh-hope/

Darcy

[Mazarita]

Hi @Littletink_. @Former-Member invited me to come and give another perspective on your situation. My take on this is from the side of someone with the mental illness. I have bipolar 1 and my companion is an unofficial part-time carer for me.

From my experience, the kind of depression you describe in your partner is a deep hole indeed. I have experienced a similar state of being a number of times. Perhaps the worst was about eight years ago when I had the final breakdown of many out of my employment. At that point I went to bed for about 20 hours a day for at least nine months (I'm not actually sure of the amount of time it went on because, not surprisingly, I don't remember much about that time). I actually feel I needed to do this long sleep to survive the absolute mental and emotional chaos going on inside me. No amount of pressure to do things would have helped me in this state. I was severely disabled by my condition and simply could not stay awake.

The recovery from such an extreme state of depression has been slow and is ongoing. As @Former-Member has said, bipolar is a very serious mental health condition. In my experience, I have never had anything resembling full remission from it. On the positive side, there is definitely the possibility of great improvement in our condition. From really not caring at that time whether I was alive or not, I now enjoy my life and savour many wonderful things about it, even if I struggle with simple things every day and am not as capable in these ways as most people.

My companion (we have been together 14 years) did look after me more than usual during the time of my deepest depression. However, he never took on the role of 'nanny' to me. He maintained his work, regular routine and hobbies during this time, making sure he was caring for himself first of all, so that he would be able to care for me as best he could. This meant that sometimes things were completely neglected by me and he didn't pick up the slack. I'm guessing he made ongoing judgements about what were completely crucial forms of help (like feeding me), and what could be let drop if need be without loss of life or limb. At the same time, he treated me respectfully and as an equal human being. I have huge gratitude towards my companion for the way he has cared for me so sensibly over many years.

The one thing in your latest post that rang bells to me was that you only see locum GPs who move on all the time. I would strongly suggest you find a GP who can treat your partner in an ongoing way. I have been seeing my doctor for eight years (since the big breakdown) and she has helped me enormously, in terms of mental health, physical health (very important in supporting mental health) and in ways that are more related to social welfare. This has only happened over time and the trust I have in her has only developed over time too. I also think it's crucial with bipolar to have a good ongoing relationship with a single psychiatrist too. These two medical professionals are the bedrock of all treatment in my experience. Related to this, it seems possible to me that your partner's medication regime is not working very well for her. It often takes quite some time to strike the best medication mix for the individual person. Again, this is more likely to be found with a stable doctor and psychiatrist.

I've written a very long reply here. I hope there is something useful in it for you. Kindest wishes to you and your partner.

[Former-Member]

Thanks @Mazarita really appreciate this - helpful for me too.

[Mazarita]

Thanks, @Former-Member. You mentioned the Phams program. This is something that has helped me a great deal over the past couple of years, especially in getting out of the flat, engaging with the world and making friends and acquaintances. This has had a very positive flow on effect on my mental wellbeing.

One other odd thing I thought I'd mention to @Littletink_. It relates to introducing activities to your partner's days. I think this probably would only be effective with your partner if done very slowly and gently. That's because of the extreme state of apathy they seem to be in. In my case, I started making the effort to just make the bed every day. At first I didn't succeed all the time. But for a few years now, there has hardly been a day when I haven't. Just this one small thing gave me a sense of achieving something and helped motivate me to grow more routine activities and start to take better care of myself. This all helps mental wellbeing too.

Happy to talk more about all this if it's helpful.

[Shaz51]

Hello @Littletink_, sending you hugs and how are you today xx

[Littletink_]

Thank you so much for sharing and for all of the helpful information @Mazarita

I am new to the carer role and I am only 26.
I have just started studying - I was going to be studying on campus five days a week but I couldn't due to her Mental health which is ok by me because I can do the course online but I am still finding it hard to get any of it done. There is always so much to do. Housework, appointments, shopping, cooking and she is studying at the moment too but is finding it extremely difficult to do it so I am trying to help her with her course. At the moment I feel like our lives have morphed into one not two. I do try and motivate her the best I can without pushing but some days it's just so hard. She does need to take responsibility for her own life but I don't know how to get her to do that without sounding mean or hurtful. If I don't do the housework or pick up after her or make her appointments and vice versa none of it would get done and it makes me sad because she really doesn't care about herself much. It's hard for the both of us. Like I am definitely not going anywhere because I love her very much but I really just need some pointers on doing this carer thing right without overstepping the mark. She needs to be independent. I don't want her to rely on me for everything but at the same time I don't want her to think I am not 100% there for support. My whole life is her life at the moment. Making sure that she's on track every day and going okay.

[Littletink_]

Hi @Shaz51,
Thank you for your sweet message 🙂
I am going okay had a bit of a bad morning but I got her out of the house which helped I think. She told
me that she's sick of doing all of this. (Life) and living like this. I can't imagine how hard it must be for her and it makes me so sad. She struggles to hold down a course or job and feels as if she is useless 😞
How are you today? I hope you are well xx

[Shaz51]

Hello @Littletink_

 my husband has being diagnosed with SAD, GAD, inherited depression , mayor depression and maybe Bipolar !!

we went self employed as my husband could not hold down a job , he was put on anti deprssion that did not help , but now he is on antianxiety meds as well

[Former-Member]

@Littletink_
When the ones we love find life difficult it is hard for us too. Keep talking.
Darcy

[Mazarita]

@Littletink_, I'm hearing how hard it is for both of you at this time. It's unfortunate you are not finding time to do your study. I'm not sure what to advise you there. It would be ideal if you both to continue studying. However, if your partner is finding it too extremely difficult to do her work, perhaps a reduction of hours or units? It's a long time since I was in one, but I think universities have various support services for students, and these can include mental health. Perhaps some research into these things on your uni website?

I'm not really sure there's a 'right' way to do the carer thing. I think maybe having bipolar and caring for someone with bipolar is an ongoing journey, throughout life. Bipolar is not known to be curable. Some people do seem to make outstanding recoveries. Others have good periods and bad periods, more or less functioning at different times. I think for most of us there are symptoms of the condition throughout life, to differing degrees.

Have you talked about the things you have written here with your partner? If not, it might be a good idea to do that. It's hard feeling like you are living on an edge. Hoping things get easier for you.