Friends, Family & Carers Forum

[beyondlost478]

Hello all, I guess I am looking for advice on how to cope with my mental health whilst caring for someone. I do not know how to word this so I am just going off by what is going on in my head and hopefully, you all who read this will be able to make some sense of it. A bit of my background, About the last year ago, I recently took up the sole caring role of my father who has dialysis and is amputated foot but he is not bedridden and still able to live a full life just with limited mobility. To come to this I had a mental breakdown after the loss of my mother (who was my best friend and I was her backbone since my birth). After my breakdown, my father offered me a place to stay after I had to give up my employment and flat due to suffering with grief and health anxiety of my own. I jumped at this offer in hopes that I could live with him and that we could work on mending our lost relationship for the last 20-plus years. Now, since becoming his carer, I jumped in the deep end with no training in what a carer is supposed to do and I suppressed my grieving and own mental health and done everything for my father, I have done everything as if he was bedridden and only to realize this through a conversation with my cousin through a phone call catch up (who had experienced caring for her mother) that a carer was supposed to be there to support the person to continue to be independent and that I did not have to everything that my father was able to manage on his own around the house like get his dinner (they were pre-packed by Lite N Easy), having a bath (with the watch of me whenever he needed help to get in and out of) and every time he calls my name I would be a yes man, jump up and do whatever he asked. Just over the last two months, with the discussion with my psychologist, I was depressed and isolated myself at home. I felt like I HAD to be at home to be with my dad just in case something was to happen. I stopped going out into the community, stopped visiting my family and friends, and stopped doing the things I like to do as I would have the fear of missing out on something and focused all my time and energy on him. I guess, what I am trying to get at is I feel more like a carer than an actual son. But also, with my father not being bedridden but with limited mobility, is it harsh for me to say no from time to time when he asks me to do things when I know he is capable of doing those little chores? and what is a carer role all about? I know i could google these questions, but I would try this forum to hear from real stories and ideas.

[tyme]

Hey @beyondlost478 ,

Thank you for reaching out and sharing. 

You are right. There is no rule book or guide to caring for someone. I'm so glad you have had the courage to speak out.

It is true. All payments including NDIS is to support the person's independence. The government pays a small carer's allowance, not so that you can do everything for the person, but so that they don't need to go into a home and instead, maintain part or all of their independence.

As a carer, your own mental health and wellbeing is of utmost importance. Boundaries help with this. Jumping to a person's every command makes them more reliant on you and eventually co-dependant. This is not heathy for you or them!

For me, I think the best starting point is to set yourself some boundaries. e.g. you will be out in the morning, but come home later to make lunch... and no, if you don't have to, you do not have to take him with you or feel you need to be waiting on him hand and foot. 

Protect yourself. Have a chat to him and see how it goes. Remember, you have a life too. You need to continue living.

I visit a teenager who is a quadriplegic. Although he has two parents helping him, the support workers come to the house every day, take him out, go to events with him. This is not because the parents don't care, but because the parents know they won't be around for ever. They are doing everything they can to support his independence. They have fitted him with an electric wheelchair is a head control device so that he uses the head control to go forwards and backwards in the chair. He's got no other movement. Yet even this teen knows he needs to be independent.

Good on you for reaching out. Set yourself some goals and boundaries and slowly communicate this to your father. Go slow to go fast 🙂

Take care

You are not alone.

[beyondlost478]

Hello @tyme 

Thank you for your response. Yes, It has taken a lot of time and courage, but lately, I have been feeling very isolated and drowned in my mental health, in this space, I feel heard and there are no right or wrong answers.

Now I know that what I lacked in knowledge, was setting boundaries and doing my research before I said yes to this big role, but at that time I knew he was my last surviving relative and I wanted to make a change and thought by becoming his carer, I would spend more time with him. My father currently gets NDIS support where he gets a carer from a company to attend his unit three times per week for an hour to do general house cleaning or take him to his appointments before him having his form of transport and then the rest I tend to do for him throughout the rest of the week.

I just had the thought that would it be wrong for me to step back a bit and tell him no i can not help him at this time so as you said, i became co-dependent for him and he relied on that without me even knowing it became unhealthy.

Thank you for taking the time to read my concerns. I will post an update on this and am happy to read anymore feed back to be better at my job and at the same time, be mentally well.

[tyme]

It's certainly not wrong for you to take a step back @beyondlost478 . You also have a life. It doesn't mean you don't care or don't love him, but you need to look after yourself. 

Considering he has NDIS, that's what the package is for. 

Initially, telling him you want to step back may be a shock for him, and you may go through a bit of a guilt trip... however, if you are assertive and firm with your boundaries, then you'll be surprised how much he can do!

As I mentioned about the teen quadriplegic. Because he has celebral palsy, his muscles seize up and he needs people to move his arms and legs for him so he not in pain. I used to do it for him all the time. Then, now I tell him to do it himself. You may be asking how do you tell a quadriplegic to move their own arms and legs? Easy... through his breath. By controlling his breathing, he is able to reduce the stiffening muscles so that he's not in pain. 

This is just one example. 

But yes, but being involved with people on the NDIS and working closely with them, you can really harness their independence. It's very rewarding.

Remember, look after yourself FIRST or you wont' be well enough for you or him!

[beyondlost478]

@tyme  - Thank you! Your advice has given me some form of hope that it is okay to say no but do it in a way that will encourage him and give him back the power instead of me having to drop everything for him to be co-dependent on me. I just hope that our personal history of not having a relationship for all those years and my doubts about him abandoning me all those years will overshadow my role in caring for him. That too is a working process.

I think it is the whole guilt trip that has been depressing me this whole time of me wanting to step back, he would whinge to families or whatever. That is just my thinking though!

That is a fantastic outcome for the teen quadriplegic. I will take note of your advice and implement it on ways I can better myself personally to better myself as a carer - if that makes sense. Starting off by setting boundaries. Thank you again @tyme 

[tyme]

Hugs. Please let me know how you go @beyondlost478 .

It'll take time. 

Hugs

[tyme]

How are you today @beyondlost478 ?

Have you been able to have a think about things a little?

[beyondlost478]

Hello @tyme, 

Thank you for taking the time to check in on me, it is much appreciated.

As for things so far, I have spent the weekend stepping back and evaluating some of the things I can ease up myself and give the old fella some independence. Lately, I have found myself becoming easily sick because I have not noticed but I am run down and depressed because I lacked the boundaries and communication. This change has been noticed by family members through a discussion I had with them when they visited. To get that confirmation, from an outsider looking in has opened my eyes and I do not want to fall to my lowest and let depression and anxiety run my life anymore. I am yet to find the courage to speak to the old fella in hopes that it would benefit us both and me not feeling guilty like you said, I just have to find ways to communicate with him without letting my frustrations overpower my thoughts.

With so much happening and being isolated in the four corners of the wall practically all day with agoraphobia, I managed to spend an hour outside in the open air yesterday afternoon to feel the afternoon sun on my skin and to spend the time journalling, it was a hard moment with trying to calm my thoughts and make sense of what I was writing down on the pad but I wrote a history of where I had come from up until now, I have not finished journalling the rest of it yet, but I will get there when I can make time. I just have to get used to the fact of having time with me and my thoughts.

Also, being of indigenous heritage, I guess it was "normal" for me to suppress my feelings and move on with life not knowing that it was resurfaced years later and having so many dark clouds hanging over my head.

I am catching up with my therapist tomorrow afternoon to touch base on my where abouts but I am happy I found a space where I can talk to people going through the same things between sessions.

Thank you again @tyme and hopefully you find this jumble making some sense.

[Wednesday]

Hi beyondlost478,

I absolutely feel where you are coming from - I was carer for my mum, she was also on dialysis (peritoneal instead of haemodialysis), as well as had other health issues, including diabetic induced blindness. I lost dad a number of years prior to this. 

I ended up utilising the free counselling available for carers - and this was the biggest help that I had - it was very good for my soul to have someone to speak to each week that explained that everything that I was feeling was normal, caring for others is emotionally very challenging. This reduced the guilt that I had over my feelings, and allowed me to understood where they came from.

I still have emotional scars from the journey, and I wish I could relive the experience again and do things a bit different for mum, but it is as it is and we do the best we can in the moment with the knowledge and support and resources we have at that time.

If you have any specific questions about how renal failure looks in regards to care please do not hesitate to ask - I am very happy to answer questions about what my and my mums journey was if it will help you on your journey.

[tyme]

Hi @beyondlost478 @Wednesday ,

Good to see you both.

Hope you are okay.

I'm here if you need support.