Friends, Family & Carers Forum

[Former-Member]

@Zoe7 @Former-Member @outlander @Shaz51 @Faith-and-Hope @Former-Member @BlueBay @Owlunar @Maggie @Appleblossom @Ali11 @Peri @Starta 

I saw my psych on Wednesday afternoon. She had been away for a few weeks, so it had been over a month since my last appointment. We covered a lot of ground about all that's been happening over the past month or so, and how I was feeling about it and whether I was coping. It wasn't until almost the end of the session, that I told her about a few new things which have been bothering me.

I explained that I've been getting a lot of feelings of helplessness, loss of control over my life, and being angry at the world and everything in it. I went into a fair amount of detail with her and gave examples of when and why I feel those things. After listening patiently to me, she said it's highly likely I'm experiencing carer burnout. Just what I needed to hear, on top of everything else I've been contending with.

Dealing with my Mum and my Brother from afar has been tough, and I so wish I could do more and be there for them. But with hubby, I am here doing as much as I possibly can to be a good wife and carer. And nothing I do is making any difference. He has been so sick now for 18 months, with successive diagnoses of Stage IV Cancer in October 2017, autoimmune encephalitis in April 2018 and Parkinson's Disease in October 2018. Now it's looking like another bout of encephalitis. So it just hasn't let up, it's been one thing after another. And each diagnosis is serious and life threatening, and needed difficult and long term treatments, much of it experimental.

I constantly feel overwhelmed and unsure about all I need to do, dead tired from inadequate sleep, and starting to believe that the situation is hopeless and that nothing is going to make one iota of a difference. I fear that I am going to lose him, and I'll be all on my own. His Stage IV cancer is essentially terminal ... despite being in remission now, it's always going to be there ready to rear its ugly head again. Parkinson's is a progressive mental illness ... we know it doesn't get any better, it will only ever get worse. Parkinson's Disease is not fatal, but it makes life progressively more miserable and difficult. The acute encephalitis can be fatal, but is very much treatable, if only they would assess him and treat him appropriately. But let's face it, he isn't ever going to be well ... ever again.

His illnesses have caused a very distinct change in roles for us. I now have to make all the decisions, do everything which needs doing, drive everywhere, plan everything ... I essentially do everything, as I'm responsible for everything.

My psych said I'm putting unrealistic expectations and unreasonable demands upon myself to do everything. She says I need to delegate and allow others to do more, and not retain sole responsibility for his care and wellbeing myself. But this is really hard for me to do. I already find it so frustrating with the lack of control I have in getting adequate specialist medical help for hubby. My lack of success in that regard has resulted in strong feelings of inadequacy, and the belief that I have failed him. So therefore that means I am not good enough, and in my own mind I need to try harder and do more. So I take more on and try to control more things. Which only leads me to think that I am even more of a failure, and I then feel guilty about it.

I'm physically and emotionally exhausted after so much illness and tragedy surrounding me over the past couple of years. I cannot remember the last time I actually slept more than a couple of hours in succession. I'm sad and miserable and lapse into tears at the drop of a hat. I've withdrawn from the very limited friends I have, or had. They don't live near me anyway, but I used to keep in touch via phone or email and a visit once or twice a year. Now I don't even return their calls or emails. No wonder I have no friends.

I'm irritable or angry all the time ... about everything ... or nothing. I snap at everything ... I crack up over the slightest little thing. I'm a horrible person, and I hate being like this. I'm an ungrateful, self centred, deplorable and useless person ... and it's awful being me right now.

I feel guilty that I'm angry about so much. Some of big stuff is understandable. I'm angry that hubby is so dreadfully ill; I'm angry that life has been so full of heartache and tragedy for my brother and his wife; I'm angry that I've lost both my nieces so young; I'm angry that I have to wait so long for the care that hubby needs; I'm angry that I cannot visit my ailing parents because hubby is so sick; I'm angry that some bastard assaulted me 23 years ago and destroyed my life; I'm angry that I cannot get over that; I'm angry that I cannot get a decent sleep; I'm angry that I'm powerless to change anything; I'm angry that my life seems to be on permanent hold and I'm angry that I sometimes (fleetingly) think of ending it.

Then there are all the little things, insignificant selfish things which I'm ashamed to admit that I'm angry about. I'm angry that I have no ability to do things I'd like to do; I'm angry that we cannot go away on a holiday once a year; I'm angry I cannot get away for a few days to visit family; I'm angry that I have to tell hubby things 3 or 4 times before it sinks in; I'm angry I'm unable to make an appointment to see my dentist or GP because we're waiting to hear from the hospital; I'm angry that I cannot book our car in for an overdue service because I don't know when I'm going to need to use the car; I'm angry I have to go to every one of hubby's many and varied appointments; I'm angry that I have to drive all the time; I'm angry that he relies on me when I don't feel I'm strong enough.

For goodness sake ... I'm even angry that I have to make the bed 3 or 4 times a day after all his sleeps. How selfish is that? It's not as if he can help it. Besides ... he wouldn't care if I made the bed or not. It's my problem that I feel I have to do it. I think it helps me feel in control of something, knowing that everything is in order. It's something I can actually do, it gives me a sense of control over something. I certainly haven't had any control over anything else in a long time. But I'm angry that I feel I have to make the bed 3 or 4 times a day, and I hate that I'm angry about that.

My psych seems to think it's all a pretty clear indication that I have lapsed into carers burnout. All this anger and resentment is not the normal me. I'm generally calm, kind and reasonable. But I don't feel that now. I'm angry, uptight, highly strung and constantly on edge. Caring for someone with a progressive chronic mental illness is not a sprint, it's going to be a long term challenge for both hubby and I. And I think I am going to need some ongoing assistance in doing that.

My psych said that carers burnout is actually quite a serious thing, and that she wants to see me in 2 weeks to talk about it more and work out what I can do. So I see her again on Wednesday week, all going well and I'm here. So overall it was an interesting session, if a little upsetting. As we only got onto this issue of Carer Burnout at the end of the session, we didnt go into a lot of other details about what may help. My psych asked if there was anything I could think of that I could delegate to others, or get some outside carer support in for. I couldnt think of anything at the time.

Anger, either expressed or held within, is an ugly and defeating emotion. I would love to know how to get through it, so any sugggestions about that and also learning to delegate, would be much appreciated.

Sherry 😠:angry_face_with_horns:😢

[Zoe7]

I do not have any meaningful suggestions for you @Former-Member but I definitely hear the pain you are feeling. So much responsibility on your shoulders from so many different angles - it is no wonder you are feeling that anger. What you are dealing with would be too much for anyone Hon and it is not at all fair that you have to shoulder all the burden yourself. I know that sense of control you need over everything is your way of trying to control what is uncontrollable - so you put in so much into what you can control. It is a very, very difficult situation for you no matter which way you turn. When we have had that control taken away from us with everything youo have been through it is definitely more important to control the things you can - and if that means makiing the bed 3 or 4 times a day then that is what you do - I get that. So many feelings for you tonight reading your post and so much love coming your way. So glad your psych is back and can see you soon - you really need that support Hon ...and of course we are here with you as well 

[Faith-and-Hope]

Hi @Former-Member 

I want to tell you a story that I hope will help you in some way.

After my first ten years or so of being emotionally abused and undermined by a tormenting relative or more ..... I didn’t realise I had grown into anger issues.  They were anger issues because they were unexpressed anger that had built up across time, chip by chip and indignity by indignity, with no real outlet because I had never been treated like this before and didn’t recognise what was happening.  I didn’t relate to being an angry person, but that was what I had become.

The anger and indignity had become “a fire in my belly” and was fermenting into bitterness.  I was becoming cynical and uncaring about things that I used to care about, feeling unappreciated, downtrodden, taken for granted, etc ..... and bitterness left long enough can turn to hate.

I had met bullies before, but not ones who pretended to like me, pretend to be like family to me, then sabotage everything I set out to do, and how I was trying to build my life to be ...... and laugh at the misery they caused.  People who created chaos to get what they wanted when you were overwhelmed by it and defenceless as a result.

It wasn’t until a friend of mine took me to see a counsellor, who happened to be a church pastor.  He asked me to describe people who were close around me in my life, one at a time, and the descriptions I began to give made it very clear to them, and to me, what I was feeling, and why.

He asked me to tell him exactly what I thought of the people who were hurting me .... how I felt about them, and I couldn’t articulate it.  I couldn’t find the vocabulary to voice what I was feeling.  It felt so disconnected and unattainable.  I was speechless.

The counsellor got me

to sit in a chair (I was already sitting in fact) and asked my friend to sit behind me and wrap her arms around me.  Then he asked her to speak for me and tell him what I thought of the people who were hurting me.  She had no qualms and began to speak out about hating them, hating them for what they had done to me ..... called them mean and nasty and every name under the sun ..... and I was shocked into laughing out loud.

 I couldn’t believe what she was saying ..... and then it hit me ..... what she was saying was exactly how I felt.  It was everything I hadn’t been able to say, and my laughter turned rapidly into crying, and lots of it.  I was crying for myself, for the fact that I hadn’t deserved to feel that way, to be treated so badly across such a long space of time, with my coping ability undermined, my self-esteem shattered.

When I stopped crying the anger began to emerge.  I found my voice and began to talk to my family and friends about how angry I was, which is what I am hearing from you tonight ..... the anger was spilling out.  

Something else happened.  I decided I wasn’t going to put up with any more of the rubbish treatment I had been receiving, and told myself that people who cared about me at all would never treat me that way, so I had to face the fact that I was dealing with people who didn’t care about me, and that this would destroy my happiness, my relationships with my children, my marriage, everything that was dear to me.  It was slowly isolating me from my own family and friends.

I plastered on a mask of politeness, and politely said no to all offers.  I withdrew what they wouldn’t respect and began to, very politely close my doors to them and treat them like strangers.  The politeness confuses them.  So did the withdrawal of warmth which was replaced by formality and avoidance of any social event I didn’t have to attend, and when I did attend, I made my excuses and left as quickly as I could.

Meantime I began to search out new friends to replace the family-who-weren’t-like-family with people who did care for and appreciate me.

I used to cook for 2-3 days for special occasions, around caring for my young children, foods that I thought would please them, only to find them bringing food of their own, eating their own, and leaving me with too much to use up, and a ruined family budget.  That changed.  I cooked what I wanted for my children the sort of foods that I could freeze as family meals ..... plain family food instead of celebratory food, and little by little problem-solved everything into ways that served me and us instead of trying to serve them and theirs ..... not vindictively, just pragmatically.

Gradually my “old”

anger began to dissipate ..... and new anger moments I began to express and do something about more immediately so it couldn’t build up.

I haven’t suffered the same level of traumatic abuse you have, which I feel so much for you ..... so sorry that that happened to you .... but I am

hopeful that something out of my experience with having to draw out and treat anger issues will help you @Former-Member .  I would love for something in it to help you too ......

💜😔💕💐❣️

[Appleblossom]

@Former-Member 

Anger is really horrible to deal with. We often dont want to admit we feel it, but I am glad your psych is looking out for you.  

How about Respite, Palliative Care and /or Aged Care? Not sure how old he is?

Please do not be so hard on yourself. Those situations are all major and would mean he would be eligible for something, while you get to visit and give support to yourself and your family.

End of life conversations are never easy. The specialists have probably done their best, but sometimes there are complications. There must be community supports available.  

Anger can be a way alerting us to do things a little differently.

Take Care of YOU too.

[Former-Member]

@Former-Member 

Acknowledging your emotions is often the first step to being able to sort them out and working with your therapist might help you untangle your emotions around them.

As caregivers we cannot do it all on our own and rather than being evidence of failure, getting help enables us to  continue to care. 

Your GP and DVA would be able to help as to practical supports that are available. One or two of his mates might be amenable to keeping hubby company while you attend to your own medical appts (or even go out for a hair cut or get the car serviced).

Care giving is a tough gig at times. You matter. You are worthy. 

[Faith-and-Hope]

@Former-Member , I have a friend who has landed in carers burnout and her doctor has enabled “emergency” extra carer support facilities.

This might be in part what your psych is talking about.  My friend is in a different state, but carer services have been quadrupled, so someone comes in to care for her loved one so she can go out and get basic things done for herself like a haircut, doctors appointment, or even a coffee, without having to consider the welfare of someone else, and answer to the constant call (or on-edge anticipation of constant call) of the person in need.

The our-of-character responses you are describing in yourself are what I was experiencing.  I was caring for three babies, one under specialist medical care, with my home and family life under constant saboutage in the guise of “helping” me.  I can now recognise that as carers burnout ......

I am so pleased to hear you expressing what you are angry about, and it’s not selfish ..... it’s overwhelm.

It sounds like your psych is onto it ..... and will help you match your need for support to the services and provisions available.

They may be able to get faster answers from that hospital, knowing that if you go down they will have two patients and no carer in your situation, and more service intervention will be required than giving more support to the carer now ..... that being you Hon.

[Faith-and-Hope]

💜💐 @Former-Member .....

[Faith-and-Hope]

Group hug ..... ^^^

[Former-Member]

Love and hugs to you @Former-Member 💜💖

I will reply another time, when I am feeling a bit better. ☕️

[outlander]

@Former-Member