Friends, Family & Carers Forum

[Me61]

Hi everyone 

My son is now 20, intellectually brilliant/ anxious.  He's had a rough time with mental health and various aches and pains. ( Autistic/ adhd .

refuses to let me help/ talk about any of the above)Last year he finally got proactive and has had 2 MRI s.. rheumatologist thought it may be fibromyalgia but the 2nd MRI is suggesting ankylosing spondylitis so now he needs a CT scan. He doesn't want to talk about it, but in his own time I know he'll make the appointment.  

My question is: how do you separate yourself from the pain of seeing your child,  (even though he's an adult ) suffer ..this pain/ fear/ helplessness that I am feeling is non-stop agony for me. I can't stop crying and I  fear it will make me mentally ill as well! I know intellectually that it is totally useless.. but the pain doesn't hear that. Any strategies for self preservation?

Thank you,  and I do feel for all of you out there watching loved ones struggling. 

[tyme]

I’m hearing how hard it is @Me61 seeing your child do things that are not helping him. Yet as adults, there comes a point where we need to allow them to take charge of their own lives.

Set yourself boundaries to protect yourself. Tell yourself you’ll remind him to make the appointments but if he refuses after X number of times, leave him for a bit. This way, you have a plan of action when you speak to him.

Have you ever told him about how you are feeling as a parent, watching him ‘suffering’ and how hard it is?

[Me61]

Thanks tyme for replying. 

My mistake,  I didn't make myself clear.. it's not really about the making of appointments.  I am really asking.. how do we protect our hearts/ emotions from grief/ sorrow/ worry when we are thinking about our loved ones.  Like I will be walking the dog/ brushing my teeth or anything during the day or night...and if I think of him, with his chronic pain and ongoing anxiety, and the possible diagnosis of something more serious, with the CT scan,  my heart breaks and the pain is overwhelming. Then I cry, and exhaust myself,  all the while knowing that it's totally unproductive and isn't helpful to anyone! That primal desperation to protect them from pain, to ' make it better ' ... how do I shield myself from the destruction that pain throws at me, so that I can function at work,  in my every daylife, and help him when he needs me. I hope I've explained it a bit better!

Thanks. 

[PracticallySane]

Your son sounds similar to me. I'm an Autism Spectrum older adult and suffer multiple anxiety and social circumstance. I've been able to tune my life to just get by and fit into social structures of society on a restricted lifestyle far from the norm. But in getting to this point I sought help through some organisation which helped me to stop relying on parents and family. It really bothered me because I found that the gaps filled by family hinder moving forward and learning to manage thing myself. 

It is important to let your child - even an adult, learn and adapt because if you think about their condition, you actually reinforce behaviour which your adult child will rely upon later. As a carer, you should be getting feedback from support which tells you how to step back and observe without participating and let your adult child learn to adapt appropriate levels of expectation they develop and control.

If they are sabotaging their own ability, then you let them learn that failure is their own doing. In this, they learn to adapt and be more aware that you won't prevent mistakes to happen because these happening reinforce that you may not be around forever and some independence is required at adult age. Treating an adult as a child is not supportive, and an adult with problematic mental health can make decisions which aren't stupid. They can also abuse your methodology because you are not letting go.

For yourself as a carer - Worry doesn't fix anything, it also creates an atmosphere of anxiety which can reinforce negative behaviours as the conditional aspects you present creates trigger response. This is because effective problem-solving takes time, concentration on the recipient's part and whilst the person wants an immediate result, it needs their (not your) practising a set of processes which are for things like, anger, worry, anxiety, depression. However, they can only use one process for 1 of these in reality. Their life homework is - to practice a bunch of skills which they will know when to use for mental instability whenever for the remainder of their life.

The hard part of all this is that it seems overwhelming and out of control. It is at the beginning, but it gets easier to recognise triggers and traits the longer you practice mindfulness techniques. Failure to do just this, which costs nothing btw, leads to poorer mental condition. Apart from this, the step forward in adjusting requires a good psychologist and a fairly strict routine which changes over time. You really want to steer clear of rote processes, as these compound cognitive anxiety - as in withdrawal symptoms from too much of some sort of activity (e.g. computer gaming, gambling, isolation, antisocial...). It is better to have a written weekly timetable to follow and leave some days blank to allow rest and practice of problem-solving. The routine should also have exercise on a daily basis even if it is limited by ability, it should be a regular morning activity preferably before breakfast for anxiety as this reduces some symptoms throughout the day and serves to wake the body up for breakfast.

Tell your adult child to read this paragraph.

Practising 54321, meditation and mindfulness techniques reduces some of your symptoms before they get worse, but in making use of mindfulness, this is a lifelong activity. There is no cure. Medication may stabilise some aspects of your behaviour only, but symptoms can change. If you have pain and mental illness like myself, you have to look after the pain by doing things which will improve your movement. If you think sedentary non-activity will help to stop the pain, you are sadly wrong, medication will reduce pain but not cure it. The only known cure is exercise, which serves to protect tissue and strengthen areas which are weak and ache because they are under increased load. You must also practice mindfulness every day because it works to making your life more normal. Do you need a carer? That depends on how much you decide is possible to being independent and discarding the shackles you create.

[Me61]

Thankyou so much for such a caring and thoughtful response. We are both(separately) working on a lot of these issues but I still really appreciate your input.

[tyme]

Do you have supports in place for yourself @Me61 It must be so hard to watch your child suffering. I can hear you care a lot.

[Krishna]

Hi @Me61  I hear you loud and clear. My now 29 year old daughter suffers terribly from schizophrenia. Her life is one of existence only, struggling on every level. Diagnosed at 18, she is now stable in the sense that she is no worse nor any better. Once a lively, funny, highly intelligent articulate creative soul now reduced to diminished cognitive ability, socially awkward, self isolating and depressed. She will not allow me to visit for 4 years now. My heart is broken. Acceptance of her situation has taken a very long time yet accept I do. I also accept that the pain I carry for my loss and her suffering will always be with me but that it doesn’t always need to hold centre stage. Her path is her path and there is nothing I wouldn’t do to change it for her but my hands are tied. As her mother it can literally break me some days If I focus on it too much so have learnt to recognise through mindfulness when I start to dwell and change what I’m thinking about by distracting myself with something else. Other times I will sit with the pain and just have a dam good sob. It does help to release every now and then but please please remember to look after your own mental and physical health. Practice self care and loving kindness towards yourself. Accept that there is nothing you can do to change your son’s story but be there to support him through it. Life really is such a challenge for so many yet so uncomplicated for others. I like to repeat a mantra also “May my heart remain peaceful”. It helps with the pain. I wish for you peace of mind and all the best for your son on HIS journey 🙏

[Me61]

Thankyou tyme 

Yes I have a good friend who is always there for me. I also started therapy last October,  it turns out I have PTSD from childhood.  I have literally just figured out today that the reason I feel so slaughtered by my emotions around my son is a) because it was ingrained in me by my father that I was worthless and couldn't do anything right, so I of course feel I've been a bad mother. And b), my emotions are on steroids because of trauma response.  This realisation has helped me enormously.  When I wrote my original post I was literally in the middle of the street doubled over hysterically crying,  because of the worry that he may have this bone fusing disease..I  was terrified of the force of the emotion,  I felt powerless in the face of it. But I came home and breathed,  and meditated, and somehow it came to me that , because of therapy,  I will slowly be able to see my tsunamis of emotion as a natural response to my past trauma,  and can therefore work on them...instead of seeing them ad terrifying forces that I will be crushed by. So a useful realisation today.  I can be more proactive from now on  because this new realisation has made me more empowered.  

[Me61]

Oh what a very similar story.  Made me cry! My son lets me visit a couple of times a year thankfully. 

Yes your advice is so true and so hard. But I am slowly getting there  with the help of therapy. Thank you. I am glad you are able to find peace more easily nowadays.  

[tyme]

Thank you for sharing. I'm glad you are working with a therapist to help you with some of what you are experiencing. It sounds like it has stemmed from things that have happened in the past. Just goes to show the impact one can have on another @Me61 . What ever it is, you know you are doing your best. There is no perfect parent. There is no perfect parent. You are doing what you can.

@Krishna , I believe the post above from @Me61  was for you.