Tuesday, 30 October 2007

Caring for the Carer of an Agoraphobia Sufferer

Imagine this... Take a foot-shaped balloon and fill it full of water. Now overfill it, until it becomes deformed. Colour it angry red with purple and dark red blotches, and give the surface a scaly appearance.

Not a pleasant image? That was the reality of the appearance of my foot last week. It was worse than this. I had a quite severe case of cellulitis. It started with a fever and within 12 hours, I was unable to walk too. Yesterday was the first day that I was able to walk better than a pathetic hobble; and I'm quite a lot better today. But never mind me...

Marie's anxiety increases when I'm unwell. I'm sure that she hopes that (a) it's nothing serious and (b) I'll get better soon; but it comes out as "Will you have to go to hospital?" (she would have to stay with someone else while I was there), and "How are the kids going to get to/from school/nursery?" (someone else will have to take them). On this occasion normal treatment did not require a visit to the hospital and Joseph has been on a half-term break from school. Marie has been looking after my needs and has been (as usual) very caring.

When I can't stay with Marie for any time more than a day, she goes to her parents' home. We didn't need that this time, but Marie did have them take the children to stay with them for a week. It was either stay with their grandparents or stay imprisoned in our home. I often work at home, but as luck would have it, some of my staff were on holiday and I was supposed to be working away from home in a different town. Marie is able to work, but only in the premises beside our home. I had to ask some of my staff to work in different premises and change their hours so that Marie could work here and free them up for another site. I am extremely fortunate to have helpful, flexible staff (who know my situation) and between us all, everything in the business is running smoothly.

Collette has been ferrying urgent supplies into our home as required and a large order for groceries and other mundane domestic supplies was made online to be delivered tomorrow. The parents of one of Joseph's school friends has agreed to bring Joseph home from school this week and the lady running the nursery is to look after Orla when required and collect and deliver her. My very understanding doctor has offered to make a house call because I can't leave home while Marie is at work. He's not obliged to do this - isn't he fantastic? And the pharmacy delivers my medication.

So you see that we have a well-oiled machine here - all geared to Marie's agoraphobia.

But it would take so little to make it all grind to a halt.

What would happen if I became more seriously ill and Marie got too stressed to stay here? Or if I was hospitalised? Where would Joseph stay to avoid missing school? If Marie's parents couldn't look after her, who would? Would one of her sisters take time off work to care for her? Who would look after me? Who would care for the carer? I'm sure that there are lots of carers who would have trouble answering the same question.

It's not easy, looking after an agoraphobic.


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

Hi Robert
Mate sounds like you've had a terrible past week, foot sounds really bad, hope its on the mend now.
Well your right, it's not easy looking after an Agoraphibic but it's thanks for people in this world like yourself, or my wife who have an excellent understanding of it, and despite what you go through you do make it easier for us to live a better quality of life.
Enjoy Halloween, and hopefully everyone over there will have a safe and happy Bonfire night next week.

MrsC♥ said...


You are SO lucky to have people that all work together to make sure Marie is as comfortable as possible with her panic/agoraphobia.

In my area now, you make an out of hour call to the doctors and you HAVE to go 15 miles to the nearest hospital. I had a chronic chest infection at the beginning of the year and needed a doctor a 9pm on a Saturday night...i HAD to go to the hospital.

I have no one who will take Stinky to school for me, its me...or me. My husband would NEVER do what you do for Marie. He is determinted my agoraphobia WILL NOT effect his life in any way. There is no way he would arrange all these things.

You are such a "Caring" man, you should be proud of everything you do for your wife. You really did marry "in sickness and in health".


Robert said...

Hi coffeecup and thanks for stopping by & leaving a post.

I'm not really the selfless person you believe me to be. Marie has many fine qualities, makes me feel needed and just has....this problem. Like any problem, it needs problem-solving to cope with it. And sometimes, like other problems, it can look so big as to be daunting.

I try to keep a positive outlook, but sometimes my worries slip through...

Robert said...

Darren - thank you for your concern. I'm getting better every day and I should be back to normal in a week or so.

You wife sounds pretty special. One day you're going to have to let her speak to us!

Robert said...

Hi there Sarah -

I KNOW that I'm lucky to live in this fairly remote (by English standards) little piece of rural England where the locals know and care for each other. When I lived in urban areas, things were altogether different.

Thanks for your kind compliments. There are lots of other anxiety sufferers whose partners/spouses support them. Some of them email me. So I'm not that unusual, really. Isn't mutual support what it's all about?

MrsC♥ said...

Mutual support?

I jury is out on that one in my house.

I supported him when he found his first job after uni that took him away from home training. A job that a lot of women wouldn't have wanted their husband to do. I supported him when he wanted to do his "police thing". I supported him with his second job choice, although we both knew it wasn't what he really wanted to do...and now the third job, i was there for him, which again took him away from home for 6 weeks training (again!). I supported him when he wanted to buy a stupid scooter that has been nothing but trouble.

I think I AM STUPID! I do EVERYTHING to make him happy and all he can do is be horrible to me because i am agoraphobic.

Tell me something, do you EVER get moments where you think that there is so much more to life? This is by NO means disrespectful to Marie, i just want to know if my husband is plain mean to rub it in my face that there IS so much more to life than him being *stuck* with me!


panicked_nw_yankee said...

Robert (and Marie :) ) I have been reading off and on your blog.

This one was really interesting to me, as something a little similair happened.
I am agoraphobic, do go out with tht 'safe person'. But gave up driving a few years ago
My partner HAD to have cataract surgery. Well, instead of all the 'alternatives' he was trying to come up with, I took him. That was almost an hour drive to the hospital for the day surgery. Patch on his eye, of course he couldn't drive! Absolutely nightmare traffic in rush hour, but I did it. There and back, then next day check up, there and back.
But the funny thing is I don't feel I accomplished anything great, and I should. I remember when my 2 girls were in school, and I worried everyday that they would get sick, and I would have to go get them (they took a school bus to school) well those days DID happen, and again, I just got in the car and went and got them. I don't know what it is.
All that, and I can't drive myself to any drs appts, shopping etc.
I guess for me, in an 'emergency' I just do it I guess
I surely hope you are feeling better, and you both are so lucky to have all your support people with you!

Robert said...

Hi there Sarah -

This is a loooonnng answer, but...Here's the way I see it...

Living with Marie is restrictive. There's no arguing with that. Every trip requires extra planning. I have less options in my career, e.g. I couldn't do a job which took me away from home on a regular basis. I can't fulfill a dream by going to Egypt for a few weeks to see the archaeological sites. We currently cannot move to a house away from my business (because the staff act as "safe" people at times). And so on. So, yes, there could be more to life if Marie wasn't holding me back.

But there would also be less to my life. Within her capabilities, Marie encourages me to expand as a person. She's the most caring person I know. She's totally truthful - something which was absent in previous relationships. I now have the relationship I never thought I would have. It's worth lots more than a little extra freedom.

My 2 youngest children are even more of a restriction on my life than Marie...and I'm not thinking of dumping them, either.

And then, if I turned everything on its head...if I became disabled - say, paralysed from the waist down - would Marie live an even more restricted life for me? I believe that she would. That's mutual support.

Sarah, if your bloke had become totally disabled, would you have dumped him because "there IS so much more to life than you being *stuck* with him"? I've known you for about 6 months and I'm pretty certain you would still be with him. 'Cos that's the type of person you are.

So, does your bloke make you feel more self-confident? Has he increased your self-esteem? Is he helping you to believe in yourself - in your ability to change your life? Does he do his fair share of the domestic duties? Is he trying to bond with your son & give him a role model? Are you planning future events together?

If you can't answer "yes" to those questions, perhaps you should be considering if YOU are "stuck" with HIM.

I "stuck" with my last wife for almost 20 years (mostly for the sake of the kids, all of whom live near me still). Now that I've been with Marie for over 7 years, I can see how much of my life was wasted on that poor relationship. Don't let it happen to you!

Robert said...

Dear "panicked_nw_yankee "

Thanks for leaving a comment.

Marie, like you, can react to emergencies by acting way outside her comfort zone. I made a post about this called "Agoraphobia expands into the space allocated to it." (9th July.)

Weird, isn't it?

Hopefully you'll drop by for a chat again. Perhaps tell me a bit more about yourself?

Best wishes

MrsC♥ said...

Hi Robert and thanks for your response.

Sadly in my house my husband doesn't see me as having any redeeming qualities of any kind. Since i don't work *as a wife should* and the fact that i do stay indoors 99% of the time why shouldn't i do all the housework, cleaning, cooking, washing, ironing, looking after the little man...that is MY job and i can accept that. The thing that pisses me off is that to him after me doing all that i have nothing attractive about me. He says i have "destroyed" him as a person, its me that has made him miserable and bad tempered. I am the one that has crushed his esteem - what a joke that is!

I blogged about this recently. When i first got with him 5 years ago when my recovery started, it was all hearts and flowers and he of course made me feel loved and attractive which made me feel more confident, over the years, things have deteriorated somewhat and the verbal abuse started causing my self esteem to plummet to hell. I am NOT saying he is the reason i have got sick again, but i am sure that its a contributing factor...maybe?

If he was disabled, of course i would not leave him. I LOVE my husband!


Coffeecup said...

Sarah, I think it was Joan Rivers of all people who said regarding men, 'don't clean the linolium look good!' In a way she's right. Does it matter how hard you work in the home because it won't be appreciated? Your husband sounds like a bully. How anyone can speak to someone they are supposed to love in such demeaning and degrading terms I do not know? Why do you love him if he makes you feel responsible for his misery and thus your own? Is it your anxiety that tells you that you NEED him? The last thing that YOU need is to have your confidence smashed. Stop thinking about pleasing him and look after yourself. If he is that miserable why does he stick around? My experience is that only confidence is rewarded, if you are low and degraded, and give him these signals, he will believe them, and so will you, and down the cycle goes. Stop now! Start telling yourself your are wonderful and worthy, and believe it yourself, please!?

lady thinker said...

Oh Robert - I am so sorry - isn't life a SOD sometimes. I do hope your foot is much improved now. Although you can't get out to walk much in the sun I do hope you've been able to get some of this lovely weather - i picture you outside in a garden (?) with your foot up and being fussed over by your wife!
Interesting comments too - good to get to know more about you.
All the best 8-)

Dirty Butter said...

Just stopping by to see how things are going for you, and sorry to find that you have been dealing with this awful sounding foot!

I've never known anyone with Agoraphobia personally, but I do know that my Parkinson's has restricted what my DH and I are able to do together. And he's been really wonderful about making the adjustments. I am much more house bound than I used to be, as I cannot drive, thanks to one of my meds making me fall asleep at the wheel.

It amazes me that you have been able to accommodate Marie's problems as well as you have. But, I wonder, is there ever a time when you feel like you are an enabler, rather than a helpmete?

Sweet Pea 48 said...

Robert , you are a fantastic supportive husband. Your wife is lucky to have you. I do think you are right to be concerned about your wife if something should happen to you.
My dad was taking care of my mom, who is not agoraphobic but has a lot of health issues. Now he is sick and not sure he will be able to come back from this. Definitely my mom cannot handle things herself. Luckily my brother or I can step in and move them out of their house if need be. Hopefully,
you won't have to face anything like that but I really pray that Marie can eventually work on her problems and take the necessary baby steps to overcome the agoraphobia.

Robert said...

Hi Rosemary (Dirty Butter) and -

Thanks for stopping by & leaving a comment. Your last paragraph gave me the "push" to write down some of my thoughts and the result is my next post. Many thanks

Robert said...

Hi there sweet pea and welcome.

Thanks for the compliments (blush!).

Your parents are lucky to have you and your brother to care about them. I'm also lucky to have helpful children - who often help me look after Marie.