Caregiver Letters and Stories

Here are examples of letters I have received. They speak for themselves.

I received this letter from a support person awhile ago and eventually posted it (with permission) to a professional Anxiety news list on the internet. 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. I was wrong! I eventually had to post it. It was so full of mental anguish I called it "A Cry From the Heart." It was very well received. Several wrote to me saying how much it relieved their minds to know their experiences were not isolated. I have included one representative response.

P.S. He has now received the support as well as the professional help he needed and is much better. His wife has also improved and they have both grown closer together as a result of the experiences they shared.

A Cry From the Heart

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 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 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 catastrophes. 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.

A VERY MOVING RESPONSE

Dear Ken:

Thank-you for posting this. The story comes as no surprise as my husband and I have gone thru it, though a little less extreme. The tears are running down my face, as I think what has been going on in my wonderful husband's mind. I thank GOD daily for your book, as it has given us the strength to keep working at our marriage. Now that my depression has lifted, I think that if I had not become ill with depression, and Panic disorder, I wouldn't have met all my good friends-Ken you are one, and become a fuller , more compassionate person. It has also done this for my husband who before living with me, wouldn't have understood or cared about people with our disorder.

Thank-you Ken.

Shelley

This letter was written in response to another letter in which the support person was having difficulties.

Hey Doug...

Wow... If you have a clone somewhere, it would have to be me! I have the same problems just as you described yours, with a few exceptions. Let me lay them out for you.

I live in a very small community in the western US, and I don't live "in town". I live several miles from town, up a mountain and through the woods. We both work at a small hospital in town. Very political organization (which causes MUCH stress all by itself). I moved here a few years ago in my mid 30's and very single. I met my wife and what can I say... I just popped and fell head over heals in love with this wonderful, caring, beautiful, sexy, smart, sensitive woman that just does it for me (apparently she must have felt the same cuz she married me, thank God).

When we first met, she was seeing a counselor and taking medication for this panic/anxiety thing. At the time, I never noticed any strange (to me) behavior or anything out of the ordinary except that she was mildly co-dependant and was afraid to drive on the highway. No problem, I thought. I love to drive and when the blizzards come in, we shouldn't be on the road anyway.

About 2 years ago, we purchased a "mini" ranch and decided to live our dreams. We got horses and chickens and dogs and all of the standard ranch stuff. We live kind of remote, and a very basic lifestyle, without many of the frills and benefits that most of you take for granted, but we didn't care. We love to look out the front window and see the elk grazing, and the foxes that come in to steal our chickens and not seeing any neighbors or cars or honking or yelling. Its quiet except for the sounds of nature. Very relaxing when you get off work.

After we bought our dream we decided that because we were rapidly approaching the big "40's" and we wanted to have a child, everything was right with our world and we had better get started. First, she had to get off the Xanax because of possible birth defects. No problem, we took it slow and before long it was over. No more Xanax and it didn't seem to bother her to get off them and I didn't notice any real personality or emotional problems.

She got pregnant in July and carried our child through the worst winter ever recorded in our area with blizzard-after-blizzard and times when it was 40 below for weeks at a time. Nobody plows our road and sometimes there were drifts of snow that were 20 and 30 feet high. We mostly went around them and for months we made our own roads to get in and out, depending on which way the wind was blowing. Many people that lived near us just moved out because it was too much, but we stayed and I got a book on home birth/delivery just in case (by the way, on the humorous side, I asked our OB doc where I could find a good book on home birth and she said "in the trash").

Well the time came and I cranked up the Dodge during a horrible blizzard and the snow was over the hood of our already "monstorized" (high off the ground) ram charger and we made it in and the baby was born in our little hospital in march. The delivery was incredible and very simple (even my wife said so) and we took our new BEAUTIFUL son home. Life was, and still is, good and we were blessed and still are.

When our son was about six months old, something happened and our son started having a focal seizures. I remember the first time when my wife called me at work and was out of control. She was holding him and he went into a seizure and then went limp and she thought that he stopped breathing and was turning blue. She dropped the phone and jumped into the jeep to fly down the hill to our hospital, and I jumped into the truck and met her halfway and we flew to the hospital and he was admitted.

Turns out that the limp and color was due to the seizure and he was just sleeping after the seizure because they are so draining. He seemed fine after he woke up and had a blast at the hospital and got tons of attention. We work with all of the hospital people everyday, so he got extra fun grabbing glasses and pulling earrings off of the nurses that were constantly holding him. Smiles the whole time.

By the 2nd day, still no more seizures and no apparent cause for the first. The doc comes in and says if there are no more that we can go home that evening. No more and I am holding him playing with his feet waiting for the doc to discharge us that evening. The doc is on his way down the hall and wham he starts having another seizure while I am holding him. I will tell you it is quite a shock seeing your perfect little boy jerking all over. I handled it ok and the doc came in at the tail end of it and I held him to the side so that he would not choke and then it was over.

Doc said that I did fine and he was just going to sleep it off. I put him in the crib and left the room to find my wife who had run out of the room when it started. On the way, I started thinking about things and everything started to hit me and I just lost it. I cried and fell to my knees in the hallway and just couldn't stop crying. Being a computer guy for the last 20 years kind of made me have a logical thought process and seeing him, and realizing that this just wasn't some "General Protection Fault" fluke, I became very emotional.

It was serious and something was very wrong. I tried to pull myself together and went back to the room and the nurses were putting an I.V. in his little arm and the doc was telling me that they need to get him to another hospital in Billings. Working at this hospital, I know that when we transfer somebody to "Billings," it means that the patient often dies. I lost it again, just couldn't seem to get it together, but my wife, Mrs. Anxiety, was like a rock and helped me pull things together for the long trip to Billings. She rode in the ambulance and I drove the truck behind them. It was a long drive to Billings even at 80 mph. I can't tell you how alone I felt during that drive by myself. I alternated between crying and praying and offering myself to the Lord so that he wouldn't take my son. I remember asking the Lord to just crash this truck if it meant that my son might live. I was ready to die right then if the Lord would agree to take me, instead of my son.

Well, needless to say, I got to Billings in one piece thanks to the only radio station I could seem to receive. It was a Christian station (which I don't usually listen to Christian radio). I was looking for any C&W station that I could get, but the Christian station was it. I started listening and I know that God was talking to me through it. I found all sorts of messages that seemed to be meant for me alone and opened my mind to them and found comfort. All of this from me? Mr. Atheist!

Anyway back to the subject. We got to Billings and he never had another seizure and some doc told us after a week of tests that it seemed to be a liver thing that seemed to be healing and we went home, Happily. We had made it back from the dreaded Billings with our son. That is when things started to go wrong with me and my wife.

My normally happy, smiling wife had started having these anxiety attacks where I was the bad guy instead of the husband/partner. It got violent for awhile, where she was very abusive, verbally saying things like we never should have gotten married and f**k you, and I don't love you, and I never loved you bla bla bla.

The attacks would last for days at a time where I was some sort of enemy and was constantly under attack form my sweet loving wife. She would get violently angry with me if she had to stay home alone with our son, or if she might have to drive somewhere by herself. She would say things like "you don't have any idea what I am going through, or you don't even know who I am or how I feel," and then would be mean or would not even look at me for days. It was like I was alone in our house with people in it. There were times that she would not even acknowledge my being there for days at a time.

I started to realize that it wasn't me, but that the thing with our son kinda triggered this anxiety thing again. I started looking for help. It helped working at a hospital and pretty soon I found out from medical people that had known her for 15 years that this had happened many times before. They asked me if she was taking any medication or being seen by anybody and I told them no. They said that I needed to get her in to see her old doc again.

So home I went with the idea that I would ask her as tactfully as possible to consider getting checked out by doc so-and-so. Boy was that a huge thing. She was in total denial and would not go back. I didn't give in though because I wanted my sweet wife back. I took all of the abuse and anger (which was really fear) that she could dish and continued to take care of our son and did my best to keep my attitude together. I treated each day as a new chance to get things on the track towards treatment. I kind of treated the problem like a huge snow drift. If you can't drive through it, find a way around it. I kept telling myself that there is a way, even if I have to move the drift one snowflake at a time.

It would take love and courage and patience, but every snowflake that I managed to move meant one less to deal with. There were times that the entire drift fell in on me and I had to start over, but I didn't give up and eventually I was able to make a path through to her and get her back to treatment. Now she is on a different med (Paxil) and some counseling and a whole lot of love from me, and things are getting slowly back to normal (what is normal?).

I can't tell you how wonderful it is to see that loving smile again or that incredible feeling when we become one in bed. We are becoming totally emotionally/physically/spiritually connected again. Life is good and we are a family again. We still have bad days, and I believe that we always will, but now there seems to be some sort of balance. I would take many bad days for one smile, or touch, or sparkle from her eyes.

I think that you need to decide in your heart (not the logical brain) that you WILL or WILL NOT deal with whatever her troubles are and take things one day at a time. I have come to believe that there is no total "cure" for this thing, just understanding. Its kind of like a cold, we can only treat the symptoms, we cant cure the cold. There were, and are, many times that I say to myself "f**k this. I have had it, there are lots of fish out there, I don't need this kind of crap, nobody can treat me this way." I think of leaving and sometimes I just want to slap the woman (not that I would). Then, when I calm down, I realize how much this woman means to me and I convince myself that the larger the mountain you climb, the sweeter the victory's are. Don't quit man. Be the rock that you promised when you took your vows.

Its okay to run sometimes, just make sure that you come back. There always seems to be an easy way out of our troubles, but the easy way isn't always the best way. "That's what makes us men," my father used to say.

So try a little research on the problem. It will help you to understand the problem. Its okay to push her, I think, but make to sure to push the love also. It will make things easier for her to swallow. Make sure that she knows that you are her rock no matter what. Also kind of make it a game for yourself to "save" her when the car breaks down. Remember that she is calling her knight in shining armor and maybe there might be a reward for saving your damsel in distress. Sometimes a call for help can turn into an intimate encounter that you wont forget, but you can't tell the kids about.

Most of all though, try to loose the logic thing when dealing with the wife. I have that problem and it is hard for me to turn off sometimes. Remember that if you are dealing with an emotional wife, be an emotional man, and when she is being a logical wife, be a logical man. If you adjust to her, she will adjust to you also. Maybe not overnight-- but she will.

Most important though, take time for yourself to get away from the situation for a day sometimes. In order for you to be strong for her, be strong for yourself. Everybody needs a little healing/quiet/whatever time for themselves. You have to be true to yourself before you can be true to others.

Anyway, enough rambling. Good luck

Shaw

Hi Ken, I have been online (and offline) for a few years now and never knew about your website. I think this is fantastic!

My husband suffers from "Chronic Panic Disorder with Agoraphobia." He was termed disabled 6 yrs. ago but has suffered must of his 31-year old life. We have been married almost 10 yrs. and most of our life together was haunted by panic. It is a very hard thing to watch your spouse go through.

We lived in a very small town and no one knew what panic was. 8 yrs. ago was when it was the worse.11 doctors and a year of testing etc. and him becoming housebound until they finally diagnosed him. Then a year of fighting with agencies to get him some financial support. We still have not found a doctor who could help him, so we have done it ourselves!!!

Success story, here we are! 8-years ago Tom was housebound...actually stuck in 2 rooms (the bathroom and the living room). I was his "safe" person and was stuck w/ him. When I cooked or went into our children's room, he would stand at the door and watch me, very anxious. When I took a shower, he was in the bathroom w/ me. I never left the small 4 room apt for about 6 mos. My family and friends had to do our shopping, our errands, even take our newborn and 2 yr old to the doctor. We could not afford to have a phone. We sold everything but our children's beds and clothes to keep food in their mouths. It was rough time!!!!

Slowly, after those 6 mos., I got Tom to take a step outside the door. The next day 2 steps and so on. It was a very slow process, but over a long period of time, I got him back to a doctor and on his way to recovery. I did so much research because all the docs did not have a clue and he could not travel outside our town. We forced the docs to keep trying new meds while Tom and I worked on behavior modification. Tom would only do so much though before the fear took over.

Well to make a long story short, one day, in fact the 4th of July 1999 (HIS DAY OF INDEPENDENCE!!), he decided that his family and his life was worth more than the panic and he did it--he drove to Buffalo, NY which was a hour away from home. He had tried and tried in the past, but could never make it even half-way. The next day we did it again and then 2 days later we drove 750 miles to my parents in TN!!!! He was finally free! We laughed and cried and went through lots of panic and anxiety but we did it. We have made several trips back and forth. In fact, the end of July, we moved to TN!!

And now after 8 yrs., Tom is working a full time job, a half-hour away from our new home and away from me!! He has learned how to accept panic as part of his life and how to cope w/ it. We have found each other and ourselves again. And yes, I still cry everyday but out of joy instead of frustration now!!!

Please share this w/ panic sufferers and their families to give them hope. There is life w/ panic! And if anyone needs some support, please send them my way. Thanks for listening!

Love and Prayers. DTILRY

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