Information For Support People, Family and Friends

by Ken Strong
I'm Ken. Anna has graciously asked me if I would discuss a number of topics on caregiving with you over the next several issues (Newsletter).  
 
My Background

About halfway through my high school teaching career, I developed cancer which led to almost 5 years of continuous rounds of radiation and chemotherapy. I beat the cancer, but the stress triggered panic attacks, agoraphobia, depression and more than a touch of OCD. I overcame those too, but what I went through was almost worse than the cancer. I will not forget the way I felt and the 'demons' which tried to control me.

A few years after I recovered, I found myself the primary caregiver to a dear friend who had recently developed severe agoraphobia and panic attacks. Based on my own experience, I could offer some help but I didn't feel I had a sufficient number of tools with which to be an effective support person and not allow the vortex of fears in which she lived to control my life.

Unable to find anything in print which offered suggestions to families of those with these anxiety disorders, in 1995 I turned to the Internet. The Net had no information, but there were many people (both caregivers and those with the disorders) looking for similar information. We all hoped we would be able to support each other until the professionals who had the information were able to disseminate it.

It didn't work out that way.

We found that we were the pioneers in gathering this information. Professionals and lay people alike come to take advantage of it.

The material we collected was the result of the combined input from caregivers, those with the disorders, teachers, employers, health professionals and other interested parties.

In short, it appeared hardly anyone had thought of the anxiety sufferer's caregivers. Via the internet site I established, I was frequently faced with people who didn't have a clue about what was wrong with those who experienced severe anxiety. They had even less of an idea about what to do to help out, let alone be able to take care of themselves at the same time.

Today, I am still gathering information and probably have the largest collection of anxiety caregiver/support information available anywhere. It is this information I will share with you over the next several issues. The intent will be to:

•provide caregivers with an understanding of the anxiety disorders;
•bring caregivers and those with anxiety disorders closer together through a mutual understanding of the needs of each;
•provide support for the caregivers;
•offer suggestions to caregivers, so they may be supportive without becoming overwhelmed;
•supply information, so the family may continue to function as a healthy unit;
•supply information to the extended support network, such as teachers and employers;
•help the caregiver offer effective support without being drawn down into the black vortex in which many of those with anxiety live.
The articles will be positive but not sugar coated. They will tell it as it is. Or, rather, as it is in many cases.

Let's start with an email that came in to me several years ago. It is representative of the many letters received.

The letter came from a support person. I emailed it (with permission) to a few caregivers whom I thought would benefit from it. Because of the intense nature of the letter I had no intention of posting it on our own Anxiety news list. I felt many may be upset by it and some fail to recognize it was an extreme case. There was also the concern that some of those with anxiety would become very upset and feel guilty even if the situation described did not apply to them.

I was wrong!

It was very well received and was passed on to others. Several wrote to me saying how much it relieved their minds to know their experiences were not isolated. Others, with the disorders, were pleased to see the letter as it gave them a starting point to discuss how the various members of the family felt and how they could work together to improve communications and relationships. The feedback was such that I eventually posted it.

The email which arrived that night in 1996 was so full of mental anguish I have entitled it, "A Cry From the Heart". I have made no attempt to edit it in any form. This is the way it was written as he reached out for help during his time of need.

It's 5:45 am. There is a whimpering coming from the person beside you and the bed is shaking. She is having another panic attack -- the third tonight. She has tried hard to be still and not wake you but now she knows you are awake her arms go around you and the whimpers become full sobs. You hold her tight and tell her it is all alright. Everything will settle down in a few minutes. One part of you is trying to get back to sleep while the other is staying awake because you know that to her the bed is rolling, the walls falling inwards, her heart is pounding and her hands feel like they are swelling up to the size of beach balls.

Today is your day off which means she will able to come out of the bedroom and be with you. Since the agoraphobia set in she has not been able to leave the bedroom unless you are home. She has awakened some time ago but is afraid tell her body it is time to get up and cause that initial surge of adrenalin as it will bring on another attack. Because it is a special day with you home she does get up then slowly, hanging on the the railing, makes her way into the kitchen. She walks like a drunkard but you know that is because her legs are rubber, the floor is seething and the lights overhead seem to be falling on her.

The next day is a work day. About 11 am comes a phone call from her crying for help. She has been fighting an attack since 9 but can't seem to remember her exercises to bring herself back down. The secretary is very good at putting her calls through immediately. You excuse yourself from the group and take the phone to take on the process of bringing her down. You are worn out from it but your voice, somehow, assumes a calm tone and you gently tell her what to do. It was so much easier when there were other people to help but friends gradually drifted away due to the frequent last minute broken engagements, a fear of mental illness (which this is not) and the relatives have all found reasons not to be involved. Who else does she have? No one.

You arrive home much earlier than usual. In the bedroom she is sitting on the bed and trying to hide the bottle of narcotics she has been staring at for time. You gently take the bottle; kiss away her tears of shame and tell her it is alright you love her just as much as when you were married and will always be with her. You talk about the time she will be better ..and hope there will be one. Everyone does get over it eventually - so you are told. You fully understand why the divorce rate is over 80% - but the echo of "in sickness and in health" keeps running around in your head. And the suicidal thoughts do not surprise you as she still has all her mental faculties but she can't control what is going on inside her body. The suicide rate is extremely high. Sometimes you walk in the door not knowing if you will find a living person or a body - maybe she was asleep when you phoned or just didn't hear it, or maybe.....

It's November and she has her heart set on buying you a Christmas present all by herself. There is no hope of it being a surprise as you have to stay within a few feet of her at all times or the waves of a panic attack start flowing in her. Several times she tries to go into the store but you end up back at her safe place in the car. Finally she makes it into the store, grabs almost the first thing she sees and pretends you are not with her. Come Christmas Day you will both act as if you had no idea of what you were getting. But that will be Christmas Day. In the immediate future you know she will sleep most of the next few days from the energy exerted in doing the best she could for you.

The time has come for her to try to start driving again. Hopefully this will take some of the pressure off you. You have both spent weeks going out together with her driving sometimes and you driving when she found she could not continue. She has a cellular phone. You can stay at home and relax. Not likely, you have to sit by the phone to ensure the line is free if she needs it. You are just as much on watch as if you were with her. When she does phone you have to gently talk her back to the house or to one of the "safe places" she has identified so she can wait until you can reach her.

It has been a good week. No panic attacks and the agoraphobia seems to be lessening. She can get out a bit by herself. She is even starting to be able to make SOME decisions again. Unfortunately the lack of control she had with the panic attacks has left her with little to no confidence in the decisions she has made. They are constantly being re-examined and there is a fear there which makes it almost impossible to take a definite step. On top of this she has become so fear driven that every small event is catastrophized. Do you leave her to work it out herself or again assume that calm voice and talk rationally to her about it? God. We have come to assume a frightened child/parent relationship. Where is the person I married? Where is the relief for you. You don't even have the sex to help remove the tension as the last thing a depressed person is thinking of is sex. Also, who wants sex when the adrenalin flow will bring on another panic attack. That part of your life was denied you years ago.

You know there is a build up in tension in her because she is starting to yell at you again and taking everything the wrong way. Dealing with her is like walking on eggs. You are almost wishing for her to have an attack to get it over with. She will sleep for some time afterwards which is the only peace you get.

I am pleased to say the caregiver who wrote it and those who followed received the necessary help and support which helped them to climb out of what they saw as hopeless situations.

Over the next several issues of this newsletter I hope you will exchange your thoughts and tips with others and myself so we can continue to build upon the carer's network.  
 
© Oakminster Publishing 2000  
 
Ken Strong lives in Victoria, B.C. Canada. His internet site for carers has won numerous mental health awards - http://www.pacificcoast.net/~kstrong/

Ken Strong is also the author of the highly recommended book,

ANXIETY, PANIC ATTACKS AND AGORAPHOBIA - Information For Support People, Family and Friends, which is now in its second edition. ISBN 0929028104

In Australia the book may be purchased through Bronwyn Fox by ringing (08) 8555-5012 or email her on hub@paems.com.au