Friends, Family & Carers Forum

[Snowdrop]

I was going to try and offer support to a couple of people who had posted discussions on the forum but I find I just don't have any words of encouragement.

It's hard to be positive at any stage when all you can see are years of more of the same - when despite years of different therapies and despite the odd times when you hold your breath and think 'things are going to get better' you are plunged back into a state of mental and emotional  exhaustion.

It's devastating when you know that the person 'causing' you this grief alternates between being totally unaware they are causing you pain and being devastated that they are.

You know they upload on you because who else are they going to upload on? Friends are now ex friends because they don't understand, are frightened by, or just can't cope with the behaviour.

You talk - and in those odd times when things are ok they apologise because they know they are hurting you, but those odd times are few and far between and for the rest of the time you are left walking on egg shells. You wake up worried, you go to sleep worried and yet somehow you have to get through each day.

When the phone rings your heart sinks ........ but you put a positive tone in your voice in the hope that this will be one of the times that you get a positive response - if you do, for one brief moment your heart sings - but through the rest of that call you watch every word you say so you don't say anything wrong.

Not answering the phone is not an option, because then you will worry that maybe it was important to them that they talk to you and if something terrible were to happen you would blame yourself.

I don't know if having the person living with or close to you is better or worse. Maybe it is better living with someone on a day to day basis when you can actually see what is going on and maybe have more of those times when things are ok. However living away means that you are always plagued by thoughts of how they are and what is happening, and the phone ringing gives no pleasure.

Worst part - you don't see an end to it. So many years, so many arguments, so many tears, so much sorrow. So much heartbreak because you can't see that this lonely, hurt child will ever have the same joys as his siblings. You can't even see that they will come to a place where there is some level of peace.

So many therapists, medication, new symptoms, new medication, waiting for it to kick in then realising that won't work - let's try another. And suffering from sleep disorders - which is also being treated ... at the moment unsuccessfully. Not even the bliss for him of being able to sleep for even 6 hours and forget everything.

You scour newspapers, the internet, medical journals, talk to your doctor in the hope that you find something new, something not tried yet that will help your child.

You are grateful that despite all he is able to carry on a job and are pleased that he is self employed because when his days are really bad he doesn't have to work - but another problem - self employed - no work no money!

You remember that little boy, bright as a button and smile to match. You think of the years before things started to go wrong. Jokes told for the 50th time, pleasure at a little gift given - just because, fun with siblings in front of the television laughing at a favourite tv programme, the joy of a family Christmas. and you wonder if that joy will ever return. You hope so, you desperately hope so .... but you have your doubts.

I help with money for rent when necessary, even though I am a prensioner - I don't know the alternative even though I know I won't see it all back. He tries believe me and he does give me small amounts when he can. His work is the thing that keeps him going. Without that he would sink lower and have nothing.  

And there is no end in sight .......... you just get through each day as best you can and hold on to the memory of that little boys smile.

I'm beginning to think that when all's said and done no-one can really help. You just put one foot in front of the other and cope as best you can!!

[Faith-and-Hope]

Hi @Snowdrop

I don't have answers for you, but I am posting to offer you empathy ....

We have come through some torrid times with my husband, who is as yet undiagnosed and therefore untreated with a debilitating eating disorder ....

It hasn't reached crisis point in terms of his health .... yet .... but it sure reached crisis point last year in terms of our relationships.  In order to cope we are living a pot-pourri of plastic relationships, disengagement, walking on eggshells, placating, pacifying, time spent separated for "work" reasons .... whatever can get us all through .... the whole time with a health crisis pending.   And owing to the family outlook, there is a social circle around us complimenting him constantly about how wonderful he looks now .... and on how dedicated he is to his "good health" .... if only they knew the full story ....

We are surviving, and the particular combination of coping strategies we have put together this year seems to be carrying us forward with only mini-crises surrounding his immediate behaviours .... however the events of recent years have instigated a chain reaction, which means I am having to prop up our other family members as their coping means and emotional reserves have been over-taxed.

We are limping, but still in the trail ... which I guess most of the carers on the forums can relate to .... but our intention is to persevere towards a better outcome ....

Just wanted to touch base with you, and reiterate that you are not alone .... you have "comrades in arms" here .... and we care about what you're going through.

If you have enough reserves, come and join us on the Hot Chocolate thread and get to know some of us a bit socially ... you can drop in there fir a cuppa and vent a bit too .....

🌷💜 F&H

[NikNik]

Hi @Snowdrop

You have every right to be exhausted - it's an all consuming situation you're in.

In your other thread, Suzanne made a great suggestion to get in contact with carer organisations. There are a variety in each state - just google mental health carers <insert your state>.

Also, if you haven't already, it might be worth checking out mental health community services in your son's area. It might give you some peace of mind to know that he is connected in with his community. I'm not sure which state your son is in, but an organisation like Mind Australia might be a helpful organisation to connect him in with.

It's so important to take care of yourself - maintain the things that give you joy - hobbies, friends, exercising, gardening - whatever it might be. It doesn't solve your son's problems, but hopefully it distracts you, even for a short time.

One last thing - don't underestimate the power of  'I understand' or 'I'm in the same situation' . You're not expected to have all the answers. Just responding to other people is supportive in itself.

Take care

[Faith-and-Hope]

Thanks @NikNik .....

Part of waiting on a diagnosis means that we can't access these sort of support services yet @Snowdrop .... as @NikNik has pointed out, part of carer support is spreading the load and making others aware of your needs too.  Please let us know how you get on.  The feedback helps others to go looking for support too.

Something I try to do is get out for a walk every day that I can.  It might be a short walk to a local coffee shop (for which I am ever so grateful) or a longer one along the nearby river.  It's teeming with wildlife.  Lots of animal antics going on .... 😊

Take care of you ....

🌷💜

[pip]

Hi @Snowdrop. The hardest part of being a parent is that it never ceases. No matter how old they are, they're still our babies. We love them, try to protect them, almost wrap them in cotton wool, Every smile is worth 1000 tears, every joy you 'bottle', because you know that tomorrow is a whole different day with different trials. It is soooo hard helping them, guiding them, wondering why it went wrong, where you went wrong. What could you do to make it better. Unfortunately, no-one has the universal answer to these questions. I have two grown-up kids with their own kids. I wouldn't trade either of them, but I wouldn't want to go back to their childhoods either. All I can offer you is the knowledge you are not alone. As mothers we do everything to make it easier for our offspring, we self-blame when life doesn't work for them as we want it to. hang in there, Snowdrop. The knowledge your son loves you and appreciates everything you do for him is better than knowing he takes you for granted. With some kids, the more we do, they more they expect from us. My daughter thinks she is my mother. I love her to bits, but wish she wouldn't worry so much about me. I've had problems all my life, but they're not hers, they're mine. Your last sentence says it all, 'one foot in front of the other' and 'box' on.

[Snowdrop]

Thank you everyone for your comments.

Pip, one of you comments really touched me because it was one thing about my son I hadn't mentioned.

He worries so much about me ..... I'm not sure if it comes from having only his work and me, or whether it is because he knows how much pressure he puts on me, or whether it is simply part of his issues - but he  worries about me! Am I well, do I have all the health check up I should. If I were to mention I have a headache he is sure to worry about it and try and give me 'cures' followed up with emails telling me about the latest cures!

I tell him I am the mother not him, and I also tell him that he puts too much pressure on me by constantly worrying about me.

[pip]

@Snowdrop. Obviously your son has inherited the best part of your nature. The nurturing part. To accept he worries about you means you have brought him up to be a caring, loving person. It's fantastic he has this nature. I tell my daughter, I am the mother too, but the knowledge that she will 'be there' when I am old means everything.

[Snowdrop]

I think I mentioned in my post that my son does not get on with his siblings and in fact wants nothing to do with either of them. This is because he feels that for years and years that have not understood him, not cared about him or offered him support in any way. He has always been a bit way with them but recently it has become worse and all past hurts etc came to the surface and he ended up with a huge argument with both of them in which he told them he wanted nothing to do with them and never would again etc. It started as an abusive phone call and then degenerated in abusive texts. They did not respond to the texts. They understand he has mental health issues but are past putting up with them.

I rang him a while ago to see how he is and he told me he had just been out and was settling down to work, then he just said that he would not be up for Christmas (Christmas for years has been the one time we have got together due to everyone living in a different state) as he has no wish now or ever to be in the same room as his siblings and he would never visit if either of them were here. He then started to sound angry and instead of just listening I tried to 'helpfully' cut him off by saying something - and Im now not sure what it was I tried to say - but he interrupted me and said angrily that I hadn't let him finish what he was going to say (and I know I was only trying to stop him repeating everything over again. While I feel for him I also understand where his siblings are coming from and being the 'peacemaker' that I am I try and stop trouble happening and just muck things in.

Anyway he just hung up on me and then when I rang him back - and I was going to apologise for not listening to him - he didn't answer.

Now I don't know what to do and I feel sick. I know he will either ring or text me about how awfull they have been to him etc and he will also say that I did little to stop them.

His siblings just basically told me that he wasn't speaking to them but didn't give me details as they want to keep me out of it but he doesn't. I have to listen to everything that he feels has been done wrong to him over a period of years and years.

Just when I am one step forward here I am two steps back and waiting for the call or text that I will not have an answer to because if I tell him it is between him and his siblings he will take it that I am siding with them and he will then regale me with the times that he feels I took their side over him.

When he is like this - that nicer person is lost somewhere - and once again I am sitting here wanting him to call as I know he is upset, but knowing that any call or text will be full of vitriol.

And also with Christmas - some of the pleasure has gone out already - it just doesn't seem right to be planning a Christmas and the family together and knowing that he is on his own - and yes I know that is his choice. Unfortunately I also know that if he is not here I don't have to walk on eggs so much and spend the whole time being worried sick that someone is going to say something wrong and then a full on verbal fight will start - as has happened in previous years - and then actually I always feel that I will cancel Christmas - and yes I would if I didn't have 2 grandchildren who would be innocently be caught up in all this.

I want to text my son and just say sorry - just so he knows I am still here. I am trying to work out why I feel I need to say sorry. I think it's because if I do it might calm him down, if I don't then he might ring or text me and go through everything all over again. Do you know what else I realise - that if he had someone else with him I would not feel so bothered as I know he would have someone else as a sounding board (someone not his mother and not the mother of his siblings - maybe someone who would cop it instead of me!)

As I write this I sound pathetic even to myself.  

[Faith-and-Hope]

Hi @Snowdrop ..... 🌷💕

You don't sound pathetic at all ..... you sound like someone who is still relatively new to this sort of scenario ..... someone who wants the best for all those concerned ..... someone with a strongly empathetic nature who is used to giving of themselves and being respected and appreciated in turn ....

It's very, very difficult to ride these emotional waves ..... and much like being dumped in the breakwaters, you will need to learn some emotional-protection behaviours, and know what sort of floatation devices you can grab hold of.

By this I mean counsellors .... support services .... reading related books to understand the mental processes you are dealing with .... perhaps a psychologist for yourself (haven't read back through the earlier post to see whether you're doing that) ..... and time out / self-care for yourself.  It's a pot-pourri of responses.

Burn-out happens to carers if they are not very conscious of maintaining their own welfare .... and if you burn out you won't be available to any of the kids ..... you will be needing medical attention yourself.

Please keep posting .... this is venting some of the pressure for you .... expressing the pain you are feeling, and the sense of overwhelm .... and we are here to listen.  It's very difficult, and you are doing well ....

Hugs n hugs .....

💐💜💐💜💐

[Snowdrop]

I have been to two counsellors (both after I spoke to my doctor). The first one I gave up after a couple of visits because she mostly wanted to talk about herself - very weird. The second one was more helpful in some of what she said but it was too clinical and by that I mean that she seemed to take all feelings totally out of everything and it became almost a maths equation - if A happens your response is always B, if C happens your response is always D. I came away, after 8 appointments being none the wiser and not feeling I had got anywhere.

I am an avid reader and have scoured the internet, downloaded books, magazines, pamphlets and read the lot. I come across symptoms and I think - that is my son and the response after I read this can be that he is depressed, he is anxious, his sleeping patterns are all out of alighnment etc. I know this

Some symptoms are due to issues caused from severe sleep apnea and sometimes not being able to sleep for over 2 days - and yes he is under treatment for that but after several years, sleep clinics, hospital treatment, and a CPAP machine his sleep just  does not improve. He has also been diagnosed with depression and anxiety. He also, I have to admit, have a sense of entitlement. Not sure if this is an illness or a symptom 

He sees a psychologist and for one medication he is on he sees a psychiatrist. He also sees the people at the sleep clinic. Although as I have mentioned before once he starts to feel better he does get a bit lax about going - and I know that that is often regulated by the cost. He has been to ones who just charge the Medicare fee or slightly more - but for whatever reason, the ones he has 'clicked' with charge a much higher fee.

So many of the books I read that are written for 'carers' make it sound easy - distance yourself from them - is one of the favourites. That is easy to write and sounds easy to do but my goodness - when your child is in pain or you are a long way away and you think they are in pain, it is not easy to say - well I won't call them for a few days, I'll distance myself. But then, honest to God - one part of me does wonder if I should do that and let him call me if things are going pear shaped. Go for a walk, get a hobby, have a coffee with a friend! I try these but my mind is always working.

My other two children go between feeling sorry for me and being totally frustrated that I can't allow myself to sit through these feelings of worrying how he is and just letting him make the phone call.    

Today for example - I thought I had better ring as I hadn't heard from him for 4 days - and he usually rings more often than that. I was on edge and tossed up for half the day and then rang. Well - obviously I should not have done so, but then again he would have said what he did when he did ring next so ....... 

Then I wonder if I am actually helping feed some of his issues. The depression and sleep obviously are one thing, but am I being too clingy a mother and so feeding his anxiety.......

I'm sorry to keep on - I feel like a rat on a treadmill - I go through the same thoughts, come to the same conclusions, help him how I can and on we go again.

I don't just want to be on this forum with comments like the above. Who wants to keep reading more of the same. I think maybe as I write it it will help me put my thoughts in order and a light will shine - who knows.

But thanks to those who do read - maybe some of what I say may help you. Special thanks to those who comment,  it's nice to know someone is there, listening.