Caregiver Burnout – Whew! That’s a mouthful isn’t it? Well, my friends I’m here to tell you — it’s a living hell besides. That’s where I’m living right now and I would like to share some of the sights I’ve seen along the way. It’s not a pretty trip, and I hope you never have to stumble down this road, but if you do — maybe this will help you understand that it is not forever. There is an end to the road and you can reach it, if you only hang on.
Briefly, let me give you a little history. I am 57 and David, my first husband of 12 years died when his heart just gave up and quit. That was in 1987. I met Jim in July of 1990 and we were married 5 months later. In June of 1998, Jim had what we thought was a very bad cold and went to the emergency room because of extreme difficulty in breathing. The doctor diagnosed him with Asthma, Emphysema, Bronchitis and Pneumonia. He also said that there was a spot on his lung that concerned him and wanted to admit him for further tests.
By morning Jim had experienced a stroke which left his left side paralyzed, and by the end of the week they discovered a tumor in his lung that was 7 centimeters. It was determined that surgery was not a possibility because of many factors. He decided to go for radiation therapy and his prognosis was about 2 months of life of an undetermined quality.
The radiation immediately made him weak and sick to his stomach. No matter what I enticed him with, he just stopped eating. I contacted Hospice and he was accepted as a patient in August of 1998. By September we felt sure that he had only days or at most weeks to live, and he was admitted to Hospice House to live out his days in comfort.
I went to visit every morning before work. Every evening as soon as I could leave the office I went back and stayed with him until he fell asleep. I spent most of the weekend with him, taking naps on a window seat in his private room. Every weekend I would also load him in my car and take him for a ride. This entailed my transferring him to and from his wheelchair to the car, and then lifting his chair into and out of the trunk. I began to have problems with my back.
My work started backing up and although I asked for help, I was assured that everything would be OK. “Just do what needs to be done and let the rest go — we’ll worry about it later!” So – that’s what I did. Needless to say, my sleep patterns were not normal either and I was getting a little cranky. I started making careless mistakes and the farther behind I got the harder it was to catch up.
By November it was evident that Jim wasn’t about to leave me yet, and he was bored at this six bed facility. Although he was cared for with the utmost of caring and compassion, he was very lonely. I arranged to have him transferred to a more traditional nursing home. The good news is that there were a lot of people around all day, and because he was so young (58) they seemed to identify with Jim and he got a lot of special attention.
The bad news is that now that he was only 4 blocks from me, he felt he could call me at any time and I could drop whatever I was doing and come over. Sometimes to bring him a sandwich, or a CD or just a hug. He also started therapy and they got him to walking a little bit and they taught him how to transfer himself in and out of his chair. Which also meant that he started falling more frequently too. It got so that every time the phone rang I expected it to be him or a nurse telling me that he had fallen again. My nerves were on edge.
My doctor prescribed Prozac and Xanax to help me get through it all. Told me not to go to the nursing home as frequently. I mean REALLY! My husband could die any minute, and I am going to deprive him of anything? NOT! Every time I saw him I knew it could very well be the last time. It seemed impossible that he could sink any further, and yet every visit he looked just a little sadder, or weaker, or thinner. I, on the other hand, was existing on junk food. My car drove directly to McDonalds on the way home from the nursing home every night.
Although the doctors told us in June that Jim would probably not live two months, he survived until May of the following year. Eleven months of hell for both of us. Jim has two children from a previous marriage. His son was in total denial and refused to come and see him. Granted it was a long trip from NY to Florida, but he could get the time easily and could readily afford the trip. He just didn’t want to come. He told me that he just had “too much on my plate right now.”
His daughter, on-the-other-hand, has six children under 16 and a husband who works two jobs. They are so broke it isn’t funny but as long as I continued to send her money in $500 chunks, she would come to visit whenever I asked her to. Of course, she always brought the baby with her and stayed with me in my one bedroom apartment, but she came.
She also fought me every inch of the way with regard to Jim’s treatment. She was his daughter, after all, I was only his second wife. She wanted him to go on Chemo, I said no because Jim didn’t want that. She wanted him to come to NY and live with her. Can you imagine that? (She lives in a 3 bedroom house with a husband, 6 children, and a dog.) It was very traumatic having to fight for Jim because he had become so frail that he really didn’t say much.
Meanwhile, my parents became quite ill, both of them. A favorite Aunt died unexpectedly. Another aunt woke one morning to find her husband dead. Three Friends died. I was sinking farther and farther into depression as the days dragged by.
Well, last time I told you about Jim and what his disease was doing to him and a little about how it was affecting me. Can you imagine how devastating it was for me to watch him withering away right before my eyes and to be so totally helpless to fix the problem? If you are a caregiver, then of course you can imagine it — you live it.
I began to cry at the drop of a hat. My eating patterns were atrocious. A huge ham and cheese omelet for breakfast with home fries and toast. A Large bag of potato chips and carton of onion dip became my favorite supper. Maybe a bag of bridge mix for lunch. My favorite was a Whopper or Big MAC with super size fries and diet coke. Gotta have the diet coke.
I found myself sitting in the office for hours at a time playing solitaire on the computer instead of doing my job. I managed a subsidized housing facility for low income elderly and disabled. I became cranky with my residents and always kept the office door closed now.
Jim died in May and I took his ashes to NY to be buried. Another fight with his daughter. Jim wanted to be cremated and have ashes distributed at Daytona Beach and at Marcellus Park, in a small creek in his home town. His daughter did NOT want cremation, but agreed to it — as if she had a voice. She insisted that I not divide his ashes up and that he be buried in the local cemetery so she could visit him. Decisions, decisions! I was not going to be allowed to carry out his desires, because she didn’t want him to be scattered about.
I gave in, sort of. I went along with the burial at the cemetery and planned a brief but tasteful Roman Catholic ceremony at graveside for his family. Before going to the cemetery, however, I opened the container and scooped out about a cup of Jim’s ashes. On the way to the cemetery, I stopped at Marcellus Park and my aunt and I did our own thing for Jim. Weeks later my brother went with me to Daytona Beach and we scattered the rest there during a major hurricane. It was awesome. I just never told his family that I did it.
In early December, I finally called my boss one more time and said that I needed help. Together we decided that it was time that I took care of “me” for a change. I went on vacation for two weeks and was granted a two month medical leave of absence.
One of the benefits of my job is that my apartment and utilities are provided for me. It is required that I live in the building. Being on Leave of absence, however, removed that benefit. I was informed that although I was to rest and recoup, I also had to move out of the apartment. They allowed me 30 days — which I might point out was over Christmas and New Years. My parents live 70 miles away and were both ill, so I wanted to spend as much time over holidays with them as possible.
My apartment had become a slum area, from lack of caring about anything. All I seemed to be able to do well and with any degree of regularity, was cry, eat and sleep. Not necessarily in that order. Now in this state of mind, I had to balance caring for my parents, with the joy of the holidays, with sorting, packing and storing my apartment.
My company helped me by sending a retired manager to the office to be a warm body for the residents and to reassure them that everything would be OK. What she did, on my last week living there, was to strip the building of anything that I had put there. I mean pictures on the walls, flower arrangements and plants, bulletin boards. I mean records that I had saved. I mean a plaque that I had on the wall honoring a resident every year. I mean the sign above the mail box that let the residents know whether mail was in or not. I mean the 3 digit code that allowed them to enter the building without using their key.
I felt like a criminal in my own building. The residents were not told what was going on. To further add to my discomfort I was asked not to say anything to the residents, it would be explained by the company after I left. All they knew was that I wasn’t in the office, and that I was taking stuff from my apartment by the car load. Someone else was there and she was screaming at them all the time.
I think I came as close to a total mental breakdown as I ever care to get. I found myself sitting staring off into space for hours. Reading a book and after several pages, realizing that I didn’t have a clue what I had just read. Crying at anything and everything. Falling asleep driving my car. Not eating for 2 days and then eating a whole bag of candy. I can’t sleep for more than a couple of hours so I sit at the computer and play Free Cell or MahJongg til I can’t see anymore and then go back to bed.
I have since moved all of my belongings into storage and moved in with my single brother. I’m certain that I am cramping his style, but he loves me — what can he do? In return I am cooking for him and he loves it.
I am seeing a therapist who is trying to help me sort out my feelings. I am still taking Prozac but hope to drop that soon. I am going to start going to a widows/widowers support group at a local church. I feel alive again for the first time in a long, long time. I slept nine hours last night without getting up once. While drinking my coffee this morning, I realized that I got through yesterday without crying once that I can remember. On Tuesday, January 11th, I actually laughed out loud.
So you see, my friends — if I can make it back to the real world from the depths of hell — so can you. Someone told me once that there is a light at the end of the tunnel and it isn’t always a train. So if you are going through some of the same feelings as I was or some of your own, look for that light and go for it.
Although I never considered suicide, I can honestly say, that I was tired of living that way. I just didn’t know what to do to change it. My friends advised me to seek help, and I did. Bless you Patti and Gail and Terri – you have been my support all these months. You have propped me up, listened, and guided me and just been there for me. I can’t even imagine what state I would be in now without my Caregiver friends and I humbly thank you.
Copyright by Shaywardncr 1/2/2000
