Friday, 9 November 2007

Carer or Enabler (Part 2)?

When I published my post "Carer or Enabler?" I expected a comment or two...

But I was blown away by the depth of feelings and unexpected insights contained in those comments; and the time and trouble that the correspondents had taken to post their comments. There is a community of sufferers of anxiety and/or panic attacks who blog or read blogs. Most of them are among the nicest people I could ever hope to meet.

So what have I learned from those comments? Well, I believe that I now know the answer to the question I have been asking myself for several years - am I a carer or an enabler? And the answer is...

...Both.

Very simply - I need to care for Marie by providing for her needs; and I need to provide an environment which enables her to expand to her full potential.

Thank you HSP woman. You have no idea how much you helped me with your comments, but now I am more confident that I'm doing the right thing - at least to the best of my ability! It was nice to learn about your husband, too. Marie's agoraphobia, like yours, is capricious: one day she woke up, went to see a neighbour and then drove herself and the neighbour to her parents' house (1 hour, 45 mins drive) and a few hours later, she drove back! She's never been able to do anything remotely approaching that since.

Thanks to the anonymous commentator. Fortunately for Marie (and me, too!), I don't need Marie to be dependent on me - nor am I afraid for the future if she became agoraphobia-free. I would rather that she left me for a full life than stay with me and not achieve her potential. I take your point that I should be careful in the manner I give Marie praise for her achievements, and I'm grateful to you for explaining why (some) agoraphobics (like Marie) cannot bear to be on their own.

Sarah - you DO make sense. I can see how your history has led to your current situation. I admire your bravery and determination in providing for your son. You obviously care for your husband and he cares for you (or he wouldn't have made any effort to celebrate your wedding anniversary), but it may be that he doesn't realise how much he is damaging your self-esteem. A long, serious heart-to-heart about this might help.

And as for you, Steph - you should know more about agoraphobia than anyone, being in the extremely unusual position of experiencing it in your own life and observing your father. Hopefully you will be able to use your knowledge to sort yourself out, and in the process help others. Thanks for telling me how the behaviour of your boyfriends have affected you - but not all men are the same! (Sad to say...some are even worse...) I have experienced a panic attack, so I know what that feels like. In my case the panic attack was caused by a previously undiagnosed medical condition and when this was treated the cause of the panic attack disappeared. Being frightened all day long, every day - that I have not experienced, nor can I imagine it. So I don't know why Marie doesn't try harder to overcome her condition. It's not because I do anything for her that she could do for herself - I encourage her to do as much as she can. I know that any progress Marie will make will come entirely from her own desire. Marie has been agoraphobic all her adult life, and she honestly has no idea what she has been missing! Perhaps this is what holds her back?

Thank you ladies - I'm really glad I became a blogger!

34 comments:

MrsC♥ said...

Robert,

I TRY to provide for my son WHEN i can. I have failed him countless times....i have been a terrible mummy in that sense.

I don't want to make out that i am something that i'm not.

I pray everyday i that perhaps there will be a time when i can be a proper mummy to him, if there is a reason to be well - it's my son.

Sarah♥

Coffeecup said...
This comment has been removed by the author.
john said...

very intresting post. Me and my ex broke up almost two years ago.Yes it helped in some ways, but also it hasn't helped in others. My agoraphobia has improved and I have done many things for myself. However my social interaction is none existant. I wish my ex was around now, I feel ready for a relationship now.

I think its good to be able to help someone with agoraphobia but there is a thin line between helping and making things worse. I remember reading one of your posts a little while back when Marie was due to see someone (social worker or something), and you complained because you couldn't have a room near the entrance. thats the sort of situation where you need to back down. It would have been a small step to take for her to have gone to a different room. Yes she would have felt very uncomfortable but it is something I believe she could have done.

There was a time when I couldn't be on my own. I doubt that would happen again now as I have realised how silly I was being. thankfully my parents carried on going out and I grew used to it again.

Im glad Im not in your situation as it must be so difficult to know what helps and what doesn't. I think all I can suggest is if a small thing comes up like what I mentioned, then try and take it as its the small things that can make the big things happen.

good luck

john

john said...

Another thing that can be done is to accept agoraphobia but learn to live with it. Its a give and take thing really.

For example, I cant see myself getting compleatly over it for a long time. However Im young, single, and house prices are always going up. I certainly dont want to live with my parents forever. So I need to work, but I cant get in to town. However I can get around my houseing estate, yes Im not comfortable doing that but at this moment in time, it is possible.

So Im going to see about doing peoples lawns for them, its something Im looking in to. This way I have accepted my limitations for the time being and worked around them yet given myself the challenge of creating my own job and having to go out each day to do it.

If your scared of spiders then you might never learn to pick one up or sometime you keep trying to pick one up with out being in a room with one first. Sometimes its best to just learn to live with the spiders around you first.

hope that makes sense.

john

Robert said...

Sarah -

The definition of a good parent is someone who DOES THE BEST THEY CAN. Imho, you qualify - and you keep pushing yourself for your son's sake. When you look at your son, you can see the results of your efforts.

No-one would dream of calling a blind person a "terrible" parent - so why do you think that YOU are one? You've got a handicap (like the blind person) and you do the best you can inside your (current) capabilities. Who could ask for more?

The healthy, fit parent in the pub every day - now THAT'S the terrible parent.

Robert said...

Steph - first of all, I didn't think you were being patronising, so stop worrying about that!

Marie can, most of the time, go out in her car to the nearest shop (a Co-op, only 50m away!) and get herself a little treat or whatever. But sometimes she'll say to me that she "doesn't feel up to it" and I'll reply that if she REALLY wants that something, then she'll manage to get it herself . In this way, I'm trying to encourage her to get out and about and build up her confidence, while demonstrating that I'm not prepared to give in to her every whim. I can try to prevent Marie's agoraphobia from getting worse, but making it better - that can only come from inside Marie. I can't force her to take ANY new steps, no matter how small those "baby" steps might be - that's got to come from her.

By pulling together, Marie and I and our kids have a reasonable quality of life, despite having to work around Marie's agoraphobia most of the time. But her condition DOES limit what we do, and there's no way around that.

The family doctor's advice was NEVER a runner, because, all other reasons aside, it would have meant separating the children from their mother. Imo, that would have blighted their lives - and, of course, there was no certainty that that course of action would have had the slightest beneficial effect on Marie.

There will be a major celebration on the day that the title of this blog becomes inappropriate. I hope that day isn't too far away...

Robert said...

Thanks for your comments, John. And I have taken note about what you said about the effects of breaking up a relationship. I mean, what if Marie & I split up and her agoraphobia disappeared...but both she & I were having very unhappy, lonely lives? Would that be preferable? I don't think so!

I wish that Marie's attitude was as positive as yours. I think that great improvements would follow! Congratulations on your enterprising attitude!

Coffeecup said...

Way to go Robert! Doctors do talk some nonsense sometimes don't they? One suggested to me I should have a baby and that would cure it! (I was single at the time!). I guess the difference here is people offer advice based on experience, however appropriate that is? but tips and tricks are useful I find. It's not always easy to spot the little things. Change happens when people are ready and who knows what triggers that off? With me it was finding a good CBT lady. Either it will come or it won't, but however Marie gets out and about she's still attempting it, and that's fantastic! Your understanding, empathy and patience is wonderful, without blame or resentment. Trying to live upto anothers expectations results in failure, and you never do that to Marie. Love to both of you x

john said...

It intrested me in you saying she can drive to a co op 50m away. I once read about someone who was agoraphobic and she could fly to a different country but she couldn't go to the post box at the end of her road.

Coffeecup said...

John, how strange is that? My dad did once drive across the road to get to the house directly opposite us, bless him! Someone can do something really big and then not manage something much smaller. Perhaps it's planning? You know, sort of being mentally prepared and seeing yourself succeeding?

MrsC♥ said...

Robert,

The more and more i read your blog/comments i cannot stress enough what a wonderful person you truly are.

In my current relationship and being constantly told that i am a failure, that i will never get better because i don't want to, i should be better by now, he doesn't want this for his life...etc, etc, Marie is so blessed to have you. You don't go on at her (unlike my husband), you don't push her (because WE KNOW that doesn't work), you are just there for her, whenever she needs you and that is bloody wonderful. A REAL marriage in my eyes. LOVE and SUPPORT.

What the hell did i do to deserve all the shit that he gives me because i am sick?

I know i am taking ages to get better and that i am going "backwards" right now, but not through choice. Panic symptoms change and the ones i am having at the moment are harder to deal with than before.

Sorry to go on..

You ARE amazing, i wish i had someone care for me like that.

Sarah♥

It's Rhetorical but comment anyway... said...

Sorry mate, I didn't realise it was you. I was just talking to someone about your blog today.

Keep it up and my best to your Marie.

Robert said...

Sarah - what can I say? Only you know why you stay in a relationship which doesn't appear to be giving you much happiness.

I hope that things improve for you soon, but no matter what, at least you know that you have some online friends who care for you.

Robert said...

Hi there, IRBCA - I like your blog lots, and I'm looking forward to reading your novel!

UKintheUS said...

Robert,

I was the anonymous poster in Part 1, I've read more of your blog on Marie, and didn't read the post on the incident with your wife and the robbery, how awful I have felt-when I was trying to convey the fear of having panic alone, I'm sorry to you and Marie.
I see you mention about Marie carrying cell phone, water in her unusually large purse, Curious, if I saw someone with a bottle of water and cell phone, it would seem normal in today's society. When I "try" to make it anywhere, I'm tagging along a BP kit and Bible. I'm able to leave the BP in the car when I get somewhere, but can't "release" the other. I'm trying another attempt today to leave, and not under the best of circumstances. My daughter had surgery last week, and I could not draw the strength to go, the guilt is unbearable, I know I've taken good care of her during her recovery, for which I am glad to be here for her. Today is her post-op and lab work findings, on top of that my Dad is hospitalized for MSRA, Pneunomia and C Diff after going thru 6 weeks of chemo /radiation. Today is his birthday. The pressure is increasing on me, and it's all too overwhelming, my heart rate is pre-panic mode ie around 100 and BP is spiking, the adrenaline surges are kicking in, and the breathing is getting hard. If I've missed her symptoms that she has on anticipatory anxiety upon going places, or being alone, can you either tell me, or which month it was blogged? How does she try to cope?
Bless you both, as I pray for all with this horrible paralyzing disorder.
UK in the US

MrsC♥ said...

I don't know why i keep being married either? Maybe its two divorces before 33 that's not all that appealing, or maybe its because i would be even more lonely than i am already. Maybe it because i am sad and needy? Any attention is better than none...

I am so pathetic.

UKintheUS said...

Just to update, I did make it today, although the panic did come along for the ride, but I didn't turn back(rather my husband didn't )I did not ask him too, and it finally subsided after an hour of sheer torture, not counting the hours beforehand. My vitals are back to norm now that I'm home. I can't promise everyday will be this way, but at least today was an achievement. Still curious as to how Marie's symptoms react upon being left alone, or in uncomfortable enviroment.

Side note:mrsc-Prayers are with you, has your professional ever had a one on one with your husband to explain that there is true CNS overload in panic, and its not an "all in your head" disorder?

Robert said...

Hi there ukintheus and welcome to my (and Marie's) blog. You are most welcome here.

I'm glad that your panic has subsided.

I don't think I'm going to be able to help you much on the anticipatory anxiety front. Marie has never been able to control it. Right now she has some anticipatory anxiety about my daughter's wedding next April. As the event approaches this will increase. The only glimmer of light on the horizon is that Marie knows deep inside her head that no matter how bad her anticipatory anxiety gets, if the event is important enough, she will always cope with it. I commented on this on 9th July 2007 in the post "Agoraphobia expands into the space allocated to it." (The http address is too long to show in this message.)

Marie cannot cope with being alone. She hasn't been alone for more than 5 minutes in about 13 years!

Can you tell me what "mrsc-Prayers" are? And what is a "CNS overload"? As you can probably gather, I didn't understand your side note. Sorry!

Best wishes...

Robert said...

Sarah -

You're talking to a bloke with 2 failed marriages and with 7 children to 4 different women. I wrote the handbook on relationship failure!!

When my last wife left me on 7th Jan 2000, I truly believed that my chances of finding true happiness in a relationship were non-existent.

And then along came Marie!

Marie's agoraphobia, although different to yours, is just as restricting in her life. But she has still been able to give me the happiness that no other woman could. From what I know of you from your blog and various comments on other blogs (and mine), I know that you have a lot to offer in a relationship. The way that you look after your son (I have difficulty in referring to him as "Stinky" - perhaps you could give him a different nickname?) despite all your difficulties, I can tell that your heart is in the right place.

Imho, your single biggest problem is your lack of self-esteem. You have difficulty in accepting compliments and find it hard to believe that you are a good person. You think that you are a weak person.

Do you believe that getting rid of a useless husband would make you an even bigger failure?

If so... you are WRONG!

It would be a sign of STRENGTH! It would be the first sign that you are ready to take control of your life. And taking control of your life is what getting rid of agoraphobia is all about.

If you think that you could make your marriage work with your husband's cooperation, telling him that he's got to sort himself out - or leave - would be an equally good show of strength.

MrsC♥ said...

iMho - i don't think there is much left of my marriage to salvage.

Can you tell me what you feel are the differences between mine and Maries agoraphobia.

Thanks :)

Sarah♥

Ruby said...

Wow what a topic, and the comments in here are enlightening and scary as they sound like me talking.

When I had a partner I found that I had to hide my panic attacks and agoraphobia, as his attitude was "just pull yourself together". Not great for any sort of support, but it made me rely on myself. I ended that relationship and have been on my own since.

Being a hermit at the best of times, I don't have a circle of friends and my family live 5 hours away, so when agoraphobia sets in on top of that its basically fend for yourself the best you can or go without.

My kids were a great support when they were growing up, though they were not aware of it, just to have someone that had to be taken care of made me step up to the plate to a certain degree, though they both missed out on heaps (asking them now they are grown, they don't feel they missed out on anything, and they weren't even aware I had a problem till they were older, they thought all mums were like me).

I know for a fact that if I had someone around that would enable me, I would take that easy way out. Why go through torture everytime you leave the house if someone will do it for you.

I am much better than I have been this time around (the last 18 months)but there are still days when I can't leave the house, and just getting to work is a huge drama. I still have panic attacks when I go to shops, but I don't have anyone to do these things for me, so I have to manage - even if that means going to a corner store at twice the price than the supermarket.

Its such a tough and difficult topic, cause I would love to have someone around to support me when I need it, even if I wouldn't push myself as hard. Its a tough choice, having to push yourself to get better or do it gently with a shoulder to lean on.

I would choose gently with a guiding arm there, but I am an agoraphobic.

My kids now support as far as their understanding of it goes, my daughter is 2500km away so she supports and chats over the phone.

My son supports me by coming with me to places that I really have to go that are open on Saturda mornings, if he has nothing better on (he is 18 so has a busy social life). But for the day to day stuff I have to force myself.

I probably haven't put any light on the topic, but here is another point of view from someone who has suffered agoraphobia on and off for 20 odd years.

Ruby said...

Sarah

I just want to say to you not to worry about being a bad mum. I have two grown kids, my daughter was 3 (now 22) when my agoraphobia started and my son (18)has seen me "normal". They have both grown up to be stable, caring and giving adults who are not wayward in any sense of the world.

I have been through the guilt you are dealing with now, but I have come to realise that our children are luckier than most, because we spend so much time with them, and not racing around 100 miles an hour everyday trying to fit in a way too busy schedule.

Just because we don't join in the rat race does not mean we are not caring and nurturing parents who give all we can to our kids.

My kids missed out on going to many, many places but neither one of them feel they were neglected in any way, they feel the opposite infact and we are (and always have been) a very happy supportive family.

If we were on a 1000 dollar a day drug habit, then we wouldn't be the best of parents, but we give ours the best we can, and no one can ask for more than that.

Don't be too hard on yourself Sarah, you have a great kid who loves you very much, and thats what life is about.

Ruby :)

Coffeecup said...

Good question Sarah, is there any difference between Marie's agoraphobia, mine, yours, my dad's the others that write on here? I used to think that my symptoms were unique, nobody else felt as I did, but then I realised that I wasn't special in this awful way. The one thing that we ALL have in common is that we DO NOT want to experience another panic attack if it can be at all avoided. Hence the agoraphobia. There are only degrees of avoiding and dealing with it. If given the chance to thrive safety behaviours, avoidance, compulsions will gather in abundance. The symptoms as far as I am aware are universal, though some have one symptom where another may not.

I do not see any difference in the symptoms my dad had that I have. He is 100% housebound, I am not that bad. He has 'accepted' it, I have not. The fear is identical. There is no reason why going around Tesco is any harder for him than me, though he is out of practise and would find it a Hell of a lot scarier and lacks the self belief that he could overcome it. With support anyone can challenge their fear, or succumb to it. I had panics in my teens. I could have been an agoraphobic adult, but managed to stave them off until they were retriggered later in my twenties.

Are we so different? I would have to conclude that we are not.

UkintheUS said...

Sorry Robert, the mrsc was/is Sarah as the side note. CNS=Central Nervous System, as in with my anticipatory, my system gets hyperactive, not only the thoughts, but adrenaline gets to pumping, which causes my breathing to change, which then dominoes to agitation, fast heartrate, etc, to other senses, hearing especially for me to become overloaded, I almost become tone death in the room I'm in, but can hear the most minute things away, that seems like it is all in the room with me, clocks, typewriters clicking, to traffic miles down the road, (example when I posted the other day that I did make it out for my dtr's post op appointment), while in an enclosed building, in the office waiting room, I heard the groundskeeper's leaf blower-it was deafening to me, to please shut it off, yet no one else could hear it (my family), they could see if they looked out, but not in tune to the sounds that come with it.(Google fluorescent lighting and panic, and see how much it triggers it in grocery stores, malls, etc) I understand Marie's apprehensiveness about the wedding, I too get to dwelling, especially around holidays, weeks in advance - I think its the thought that you have only that day with a timeline attached with it. You wish so much you could take it with ease, but you have such and such time to be there, and only that day, it's an added pressure to "you HAVE to do", tommorrow is too late.

Ruby-you bring up alot of good points, I'm very critical sometimes of the guilt of that I felt I was letting my children, rather robbing them of things. But, my children are 23 and 17 now, my disorder struck one month after my youngest was born, which with some reading, you will find it is not unusual for it to flare up or begin, why doctors don't factor in hormones as a potential culprit, among other things is beyond me. Anyway, my dtr was 5 and my son too young, life was normal to them, what they perceived as a normal life, as stated what they aren't accustomed too, or have, there is nothing to lead them to believe any different. They did well in school, and both go anywhere they wish, have traveled out of the country. I can say, both at times have exhibited what I would refer to as anxiety attack, but not panic, but statistics will show,95 percent of the population will have at least one in their lifetime, but we have a built in compassion to help them, something possibly that I didn't ie, the "Just don't think about it" comments, and they did just fine, knock wood, no major phobias, avoidance, or repeated attacks to be classified with panic disorder. For that I'm grateful.

MrsC♥ said...

UK..

Sorry for not replying i didn't realise that was for me.

My husband isn't that interested in the details of agoraphobia and panic. All he knows is that i should be better by now and not getting worse!!

I don't know how a person who doesn't suffer with a panic disorder begin to understand how the symptoms of a panic attack feels? Trying to explain that you can't breath, that you have pains in your chest, that you feel sick and disorientated. He's called me a hypochondriac and with NO real illness, how can i prove him otherwise?

I posted in my blog the other day about a man who use to joke about me being "ill". He has been just been diagnosed with severe anxiety himself and understands every bit of how bad i have felt because he's feeling it too :)

I know it sounds terrible but i would love for my husband to experience panic for just ONE week. That's all. He could then get a taster of how horrible it is.

Sarah♥

Robert said...

Sarah, ukintheus, Ruby & Steph

Thanks for your comments. As I said before, a good parent does the best they can for their kid(s). None of us is perfect, so none of us is the perfect parent, no matter how much we would want to be.

It seems that I was ambiguous when I said that Marie's agoraphobia is/was different to Sarah's. What I meant was that it affects her in different ways than Sarah's agoraphobia affects her, although there are many, many similarities.

I have been lucky(?) to have had a panic attack. Only the one, but I wouldn't want to repeat it! I can understand what Marie wants to avoid at all costs! It must be difficult, if not impossible, for someone without that experience to totally empathise with an anxiety/panic attack sufferer. It doesn't mean, though, that it's impossible to be supportive & sympathetic...

Just Deb said...

I am just getting to know you and catching up so it's so hard to say.

The only thing I do know, given my own situation, is the line between helping and enabling is very fine and to walk it gracefully takes talent.

You, my friend seem to be quite talented.

Deb at Caged Shadow.

http://cagedshadow.wordpress.com

MrsC♥ said...

Hi Robert,

I was just interested in what point Marie is at with her agoraphobia. For me it definitely changes weekly, with new symptoms and new boundries.

Last week for example i made it to the bookshop to see Russell Brand, i did the shopping fine...BUT...i couldn't be far from the car (which is NEW!).

I know its odd, but i like to compare progression, it gives me inspiration when i hear agoraphobics are doing well, if they're not doing so good, i can totally understand.

Sarah♥

Coffeecup said...

Ukintheus I've never heard anybody ever mention over active senses before and I'm amazed because I thought I was being paranoid. Sometimes it's as if there is just too much colour to take in all at once and I get completely overwhelmed. I can't stand bright lights like flourescents and noises become deafening. As for hormones, I can guarantee that no matter how much I'm progressing, when I'm premenstrual I'm anxious around the clock and the panics are impossible to fight with. I'm basically a write off and there's no point trying to get out, it will end in tears. No one seems to take this seriously and how much it affects the anxiety levels.

I totally empathise with Marie and this wedding. It must take enormous will power to force herself to do this for others. But then she has done some amazing things that I am in awe of, having babies for one! She really does have the strength and the courage in her heart. Sometimes for weddings, funerals and such like you have no choice but to really dig deep for that special something for a while. I hope that it doesn't cause too much worry. She's done it before and I hope that she can reassure herself with the fact that she coped and triumphed.

Love to you both, Steph x

Robert said...

Deb -

Thanks for the compliment. I totally don't know if/when I get the support/enabling mix right. It's all guesswork!

Robert said...

Ukintheus & coffeecup -

I hadn't heard about central nervous system overload either.. I asked Marie about this and from what she told me, it seems than as her anxiety increases, so does her awareness of potential "dangers". For example, noise becomes louder - sometimes to the point of being unbearable - bright lights become brighter, distances become seriously magnified. I can see how all this sensory input could cause an overload of the senses, with accompanying physical repercussions.

But what to do with this knowledge? I don't know. Any ideas?

Coffeecup said...

Hi Robert, I'm not sure that anything can be done as such, however a little knowledge goes a long way. I think if you can understand why something happens, then it becomes less frightening. It can be explained away, and proven not to be harmful. It's like having a pain and if it didn't go away and the doctors couldn't explain it, you'd be pretty worried that it was something terrible. It's good to share these things I think, there's so many symptoms that are not readily identified in the 'rule book'.

Robert said...

Coffeecup -

Good point!!

john said...

coffeecup really did make a good point. Its like when people have there first child, they look everywhere for the instruction manual and when they cant find it they panic. understanding does help.