Just bumped onto my neighbor down the street. He was very distraught. He got back from a shopping centre with his son (30+yo), who hears voices and sees things that are not there. He usually avoids crowded places, he told me. But today he had nowhere to leave him. His son had an episode in the midst of the shopping centre and started shouting, kicking and fighting invisible beings while people laughed, took photos and videos or run away scared. It was humiliating. My neighbour started crying. In his country, he told me, his son wouldn't be allowed to go out. He'd be locked away somewhere. He often has to deal with strong emotions, like anger, guilt, grief and distress, that can spill into other relationships and cause conflict and frustration. Looking after their son has severely affected their marriage, he told me, and he is not intimate with his wife for years now. He feels isolated, missing the social opportunities associated with work, recreation and leisure activities. They haven't been on a holiday for years and even if they could afford it, there's no way they can leave their son somewhere as they'd be constantly worried for his wellbeing and unable to relax or have a good time. If they took him with them, there would be no break.

This made me think of the enormous burden on the carers, family and relatives or friends of someone living with a mental illness. Caring for someone can take the freedom and spontaneity out of life. The demands of caring can leave little time for other family members or friends. The impact often goes unnoticed or unrecognized. At some point in many people's lives, things change and they may find themselves caring for someone. No one prepares you for something like this. It's something we do as people. In many cultures it is expected. Apart from the many rewards that caring offers to the carer there are also numerous challenges.

Caring can be very demanding and often restricts the lives of individual carers and their families and can impact on one's relationships, health - emotional, mental, physical, - career or job prospects, finances, travel etc. Some health problems, like back problems, anxiety and depression, can be directly linked to caring. Many people who look after someone are chronically tired and desperately need to refresh with just one night of unbroken sleep, a day off or an extended period with no caring responsibilities.

How do you cope as a carer? How do you look after yourself? What supports do you have?

Hi Donte'

What a very sad story indeed, certainly carers can be forgotten in the midst of difficult situations since the attention is always focused on the unwell person and not those around that person.
My mother and I cared for my dad when he was still alive and battling cancer, my mum actually did the most for him such as cooking, cleaning and assisting him. I was involved in his treatment and emotionally supporting him (and my mum too).

My mum suffered much with the fear of the unknown, she has been on anti depressants for a long time now and she still struggles with everything because I don't think she ever lived her life, she had always lived my dad's life even since they first got married because she was dependant on him for most things.

I never thought of myself as a carer and I didn't realise how much help I actually offered until I was told. It was hard for me because I was close to my dad and I couldn't think about losing him.
Over the years of looking after him, I tried to stay very positive and that's where I found a spiritual journey that helped me fathom it. During all the years (20) in looking after my dad I always felt dark and heavy with worry, it felt like I had this backpack on and every now and again I had to stop and pull it down to arrange the contents that got jumble up in there. My backpack never left me, it was a crucial part of my life and I could not never get it off, it stayed with me wherever I went. The day my dad died, I literally felt that backpack slip down my body slowly and I tried to pick it up but it was like it had magnets in it and was forcefully pulling down and I saw it fall under the ground, I couldn't see it anymore, it was gone.
I could feel an instant lightness on my back, I am still getting used to not carrying it and sometimes I miss it so much that I feel guilty for losing it.

It wasn't until I lost it that I saw myself taking better care of myself without even trying to. I think the best care I offered my parents was hope and all carers have to have hope.

Hayfa

Hey Donte' and Hayfa,

It's true - it's really tough to be a carer for someone living with mental illness. And as Hayfa mentioned, sometimes a carer may not recognise this as their role. This might mean they neglect their own mental wellbeing in the process. It's really important for carers to get help too and speak up, in order that they do not get worn out and they do not suffer as well.

But ultimately, as they say, love makes the world go round, and carers sacrifice so much for love. From the perspective of someone who isn't usually the carer but is being cared for, all I can do is show them I'm thankful, and encourage them to take care of themselves too.

Josette

Hi

Being a career when you are suddenly thrown into it is terriying. I was pretty much dependant on my husband for everything before his accident. He paid all the bills and did tbe shopping and cooking. All i did was work and he would tell me if i had to do anything.

Literally overnight he didn't know how to shave, cook, dress himself properly, any of his former staff or shop.

I remember about 2 weeks in our son and i took him grocery shopping and a nice elderly gentleman asked if he was learning to shop..it was the same supermarket that my husband had been a manager in for 4 years. I just burst into tears and our son told the man that his Dad had a accident and had amnesia but had been the boss here.

Even now if i let him go to the shop i worry even though so much has been done to help him.

As a long term suffer of anxiety and depression i was allready listed with MHQ and they have been amazing to me.

When my husbands memory slowly started to return so did his PTSD and all the emergency services staff where my angles.

As a career the fear and what if...never truely goes. Its a case of a family getting a new member in it

Hi Hayfa,

What a great analogy! - Carrying a backpack!

and yes, most carers don't realize that this is what they are. they just look after someone out of love. And yet the relationship changes when one becomes a carer. There is loss in that and needs to be acknowledged and grieved as appropriate so we can move on. When my partner fell ill I had to acknowledge and come to terms with the loss of our intimate relationship. I had to become the carer that I was until he died in my arms at intensive care. I still mourn the loss of myself through this experience.

For me that was a pivotal moment to lose faith and cement my views as an atheist. My experience has led me to believe that only I am responsible for myself and others around me and my environment I am in, and this belief motivates me to carry on and do good. If there is no god to come and save me, to give me strength, to forgive me etc, then all the responsibility falls upon me to do all that for myself. This is quite a humbling and liberating experience that has helped me deal with my loss and grow immensely as a human being.

Hi Bethie,

Yes, no one prepares us for this amazing and most challenging experience to be carers of someone whom we love dearly. Overcoming the initial shock and face the challenge, accepting that our roles have changed and mourn our loss (of our previous role) helps us to adjust to the new situation. Hope this has been a rewarding and enriching experience as much as it has been challenging. It's beautiful that your husband has you there at this time of need and I'm sure you probably would have liked the same if the roles were reversed. Kudos to you for re learning and carrying on under those difficult and trying circumstances. X