Grief or Traumatic Events

Hi Jep,

I'm so sorry to read your news.  How awful for you.  My heart goes out to you and your family.

I'm a 58-year-old male and was diagnosed 2 years ago.  About 18 months ago, I first discovered that my mother had end-stage kidney disease.  The deterioration had been brought about by a combination of diabetes and many years on lethal medication to keep her rheumatoid arthritis from flaring up.  About a year ago, she also began early-stage vascular dementia - though she still managed to live independently with minor interventions.  Then, last September, she suffered a major kidney injury and nearly died in hospital.  When she finally came out in October, it was clear that she could no longer live alone.  It would have killed her to give up her home, so I took the decision to take leave from work to look after her full-time for what was expected to be a matter of weeks.  In the end, she lived for another 6 months - finally passing at the end of April.  I was with her until the end.

Since that time, I've gone through a strange and disorienting mixture of emotions.  For about 5 weeks, I was fine.  I was on a kind of emotional autopilot, which enabled me to manage all of her affairs virtually alone (my NT older brother had a business to run, and found it hard to cope anyway).  Once everything was settled, and all I had was myself and my cat to take care of, it all finally began to hit me.   My GP put me on valium for the anxiety, but would only prescribe it for a month.  Since finishing those, the anxiety has been horrible.  I began to drink more in order to numb my feelings. This has gone up and down.  I don't drink all the time.  But after about 4 days of sobriety, my anxiety is so bad that I can't focus on anything. 

My Carer's Allowance finally finished last week.  Because I was off work for so long, my full-time contract was terminated just before Christmas and I was offered a zero-hours contract instead.  But I've had to get signed off and go onto ESA because I'm simply incapable of work just now.  I start a bereavement support group on Wednesday.  I'm doing my best to protect myself and control things.  But I don't know how long this is going to go on for.  My mother was my closest-living human being and my soulmate - the only person who really understood me, and the one person to whom I could go for unconditional love and support.  In all of my 58 years, I've either seen her or spoken to her virtually every day, and have never lived more than a couple of miles from her.  I've turned down life opportunities - emigration, etc - to stay close.  I knew there was a reason for this. I'm estranged from my family (largely because of my condition) and have no friends (likewise).  My relationships have all been abject failures.  She was the one constant.  And now she's not there.

Your circumstance is different in many ways, but I think I identify from the inside.  It's awful.  If it wasn't for my cat, I don't know what I'd do.  I keep myself going for her.  She gives me something to be responsible for.  If anything will carry me through this, it'll be her - and the understanding of others on forums like this.

As I said, my thoughts are with you.

Tom

Hi - thank you Tom, LoneWarrior and QuirkyFriend for getting back to me. Being new to the forum, I'm not sure how best to reply. Is it to each post? Or to the last reply? Either I thought - but then it could become repetitive? So a group response I've decided but do hope this doesn't come across as impersonal. 

Since I was able to relate to all your replies. I am very sorry Tom and LoneWarrior to read about your struggles. But perhaps someone can let me know 'forum etiquette' please?

In meantime - here's a bit more about my own experience with grief and / or prolonged stress. Each are different but I feel overlap too. 

Firstly - it's generally not obvious to others that I have ASD, day to day. Instead just a bit different, march to my own beat. The differences only become apparent, more noticeable to those I'm very close to (family, other relationships, work colleagues). So I do now tend to tell people, just to make then aware. Yet my family (who are all educated, informed people, but not I'd say, psychologically minded) haven't appeared to accept ASD. They haven't for example shown interest to understand it, enquire. That's not because I've exhausted everyone on the topic either - far from that. 

But I do think it's vital for others to be aware of the challenges, how aspects of ASD can be invisible and how constantly adjusting to fit in to 'the norm' or dealing with sensory overload can be very tiring. On a good day even! Let alone the impact of significant stressful life events. 

I can often be left quite isolated with my experience, it can leave me sometimes fairly debilitated too. After a long period of 'coping', being resourceful too, I end up 'breaking down' in private. These periods last for 3 - 7 days. I'll be unable to do normal everyday tasks. But neither do I rest (when most indicated) - because I am overthinking, trying to work lots of things out. Can't switch off. Sometimes I'll drink during those periods which results in increased anxiety.

Leading up to those periods it's as if I don't have space in my mind to take one more thing on. I feel overstimulated. Feel traumatised - akin to a PTSD type of response. 

As mentioned in my first post, my mother has had this tragic accident. She's been critically unwell and now at a Spinal Injuries Rehab. I've been very much involved in the support for 5 months, included flying back with her to UK via air ambulance and daily visits to intensive care here for 3 moths before rehab.

So a lot has been going on and alongside this I run my own business. Easy to rationalise that I'm under strain. 

But so are all my family members. Yet our response is different. I'm completely consumed. It's as if I've immersed myself into my mother's position and feel her pain, particularly at a psychological level. Sense when I'm not even with her. 

I don't think that I've described this well at all! But perhaps overall I feel that people with ASD have an acute sensitivity. 

At a personal level - I feel that my ASD becomes heightened under severe strain. My experience of grief is the same.

JEP

Hi - thank you Tom, LoneWarrior and QuirkyFriend for getting back to me. Being new to the forum, I'm not sure how best to reply. Is it to each post? Or to the last reply? Either I thought - but then it could become repetitive? So a group response I've decided but do hope this doesn't come across as impersonal. 

Since I was able to relate to all your replies. I am very sorry Tom and LoneWarrior to read about your struggles. But perhaps someone can let me know 'forum etiquette' please?

In meantime - here's a bit more about my own experience with grief and / or prolonged stress. Each are different but I feel overlap too. 

Firstly - it's generally not obvious to others that I have ASD, day to day. Instead just a bit different, march to my own beat. The differences only become apparent, more noticeable to those I'm very close to (family, other relationships, work colleagues). So I do now tend to tell people, just to make then aware. Yet my family (who are all educated, informed people, but not I'd say, psychologically minded) haven't appeared to accept ASD. They haven't for example shown interest to understand it, enquire. That's not because I've exhausted everyone on the topic either - far from that. 

But I do think it's vital for others to be aware of the challenges, how aspects of ASD can be invisible and how constantly adjusting to fit in to 'the norm' or dealing with sensory overload can be very tiring. On a good day even! Let alone the impact of significant stressful life events. 

I can often be left quite isolated with my experience, it can leave me sometimes fairly debilitated too. After a long period of 'coping', being resourceful too, I end up 'breaking down' in private. These periods last for 3 - 7 days. I'll be unable to do normal everyday tasks. But neither do I rest (when most indicated) - because I am overthinking, trying to work lots of things out. Can't switch off. Sometimes I'll drink during those periods which results in increased anxiety.

Leading up to those periods it's as if I don't have space in my mind to take one more thing on. I feel overstimulated. Feel traumatised - akin to a PTSD type of response. 

As mentioned in my first post, my mother has had this tragic accident. She's been critically unwell and now at a Spinal Injuries Rehab. I've been very much involved in the support for 5 months, included flying back with her to UK via air ambulance and daily visits to intensive care here for 3 moths before rehab.

So a lot has been going on and alongside this I run my own business. Easy to rationalise that I'm under strain. 

But so are all my family members. Yet our response is different. I'm completely consumed. It's as if I've immersed myself into my mother's position and feel her pain, particularly at a psychological level. Sense when I'm not even with her. 

I don't think that I've described this well at all! But perhaps overall I feel that people with ASD have an acute sensitivity. 

At a personal level - I feel that my ASD becomes heightened under severe strain. My experience of grief is the same.

JEP

Thanks a lot Tom for such a considered response. I'm tired at the moment but will reply soon. JEP

JEP said:

Firstly - it's generally not obvious to others that I have ASD, day to day. Instead just a bit different, march to my own beat. The differences only become apparent, more noticeable to those I'm very close to (family, other relationships, work colleagues). So I do now tend to tell people, just to make then aware. Yet my family (who are all educated, informed people, but not I'd say, psychologically minded) haven't appeared to accept ASD. They haven't for example shown interest to understand it, enquire. That's not because I've exhausted everyone on the topic either - far from that.

Same here.  The thing is, we've had to work hard at 'learning' what NTs know instinctively - simply to survive in an NT world!  I tell everyone, which can bring both positive and negative responses.  Some people shut off.  My brother - who has actually seen my 16-page diagnostic report in all its graphic detail (suicide attempts, etc) - has become even more distanced from me, if anything.  Partly, I think it's because the woman he's married to is one of those 'pull-yourself-together' types who believes mental health problems and things like autism simply amount to 'not trying hard enough.'  His loss, though - not mine.

JEP said:

I can often be left quite isolated with my experience, it can leave me sometimes fairly debilitated too. After a long period of 'coping', being resourceful too, I end up 'breaking down' in private. These periods last for 3 - 7 days. I'll be unable to do normal everyday tasks. But neither do I rest (when most indicated) - because I am overthinking, trying to work lots of things out. Can't switch off. Sometimes I'll drink during those periods which results in increased anxiety.

I've never felt quite so isolated as I do now.  I don't feel lonely, and never have.  I prefer to be alone.  But, with mum gone, I feel completely alone in the world.  The periods of coping, then breaking down, very accurately describe roughly the last 25 years of my life.  I seemed to manage well enough - though I had plenty of hang-ups about lack of relationships and friendships and not understanding why - until around my mid-30s.  Then it all began to catch up with me, like a tsunami wave coming in.  Since then, I've had long periods of 'being okay' interspersed with equally long periods of breakdown.  Seven years ago, I had a suicidal breakdown and didn't work for three years.  Then I gradually clawed my way back in, until finally securing a full-time job in February 2016 and becoming completely independent again.  And then, last September, that collapsed.  And here I am again now, facing an uncertain future, dependent on state help to get me through.  Drink is just about the only thing that stills my head down now - which isn't a good thing.  But what else is there?

JEP said:

Leading up to those periods it's as if I don't have space in my mind to take one more thing on. I feel overstimulated. Feel traumatised - akin to a PTSD type of response. 

Exactly how I feel now.  Last night, I had a terrible nightmare which left me with panic attack arrhythmia for the rest of the night.  This morning, writing my first reply to you, I almost passed out.  There's nothing wrong with my heart, though.  It's acute anxiety.  I'm showing a lot of the symptoms of PTSD.  I'm going to see my GP tomorrow to try to get a referral for diagnosis.

JEP said:

 I'm completely consumed. It's as if I've immersed myself into my mother's position and feel her pain, particularly at a psychological level. Sense when I'm not even with her. 

I don't think that I've described this well at all! But perhaps overall I feel that people with ASD have an acute sensitivity. 

At a personal level - I feel that my ASD becomes heightened under severe strain. My experience of grief is the same.

Yes - same with me.  Taking on the role of mum's 24/7 carer for her last six months immersed me in her suffering at every level.  I was there when she had breakdowns because she felt so low.  I watched her gradual deterioration - from the point where she could still go out and hang out the washing to the point where she couldn't get out of her armchair.  Her passing should have given me relief - both from my responsibilities, and from the knowledge that she was no longer suffering.  Instead, I feel the anguish and pain much more.  I almost feel like I exist for no other reason now than to make sure my cat is safe and happy.

I think you describe it all very well.  Painfully well.  And yes - these periods of intense stress do exacerbate my  symptoms - particularly, as I've said, the anxiety.  Before this, I could manage to be around other people.  Now, even going shopping for 20 minutes is a huge challenge.  I don't want to leave the safety of my flat.  I don't want to see anyone else.  All sounds and sights are magnified.  I feel like a diver in a shark tank.

Keep talking, Jep.  It's the best thing.

Tom