I think when one becomes a 24/7 caregiver, they mentally move into that space in which only the take-charge folks dwell. They develop a kind of tunnel vision which enables them to concentrate on the needs of their loved one without allowing the riffraff of everyday life invade that space. In many cases, they begin to experience an assortment of feelings including fear, isolation, pride in the fact that they were chosen to assume these responsibilities, uncertainty in their knowledge of how to medically care for another human being, and most universally the thoughts of how they are going to tend to an ill loved one while carrying on a normal routine within their family.

The onset of caregiving is a confusing time at best, and an unpleasant time at worst. Normally, the one chosen to be the caregiver is younger and in fairly good physical condition. However, in my case, I was disabled when I began caregiving to my mother. This presented problems with both of us that we worked hard to overcome and we met each new problem together, which not only brought us closer together but helped both of us grow in our knowledge of each other’s abilities and disabilities.

I moved in with my mother and stepfather in 1988 after becoming disabled, but did not received my social security disability until 1990. If they had refused to take me in, I might have ended up as one of the many statistics you read about each day in the newspaper. I had cared for my father before he passed away, and now when my stepfather fell ill with stomach cancer, I was able to help Mom care for him also. My physical problems were not first and foremost in my mind back then, and I was able to help Mom with no problems.

After Mom lost her husband, she started going downhill mentally and physically, but between the two of us we managed to get the housework, cooking, cleaning, laundry and all normal household chores accomplished. In January 1998, Mom fell off the bed, breaking her wrist and was in a cast for 8 weeks. One week later she was in the hospital with staff pneumonia, staff infection of the blood, and we then learned that she had congestive heart failure along with the COPD that we already knew of. At this point I knew I would have to assume all responsibilities as Mom could no longer handle them.

Shortly after our discovery of mom’s illnesses, I was put in the hospital for blood clots in my legs and had to depend on Home Health to care for Mom. The second time I was admitted to the hospital, Home Health put Mom into Rehab, which she loved, so I could relax while in the hospital and get better myself since I knew she was being taken care of properly.

Once both of us were back home, we found a cleaning lady who was willing to help us out once a month with heavy cleaning, and at this point I was doing good to keep up with the daily cooking, cleaning, and taking care of Mom and myself. I knew by now that I didn’t have the tight grip on the situation that I had when I first moved in with Mom, bit I felt certain that these were only minor setbacks in my case and I would “come back” even stronger once my medicines kicked in.

We muddled along in this holding pattern for several months, with my seeing doctors at intervals and taking Mom for doctor appointments as needed. We had worked out a good schedule which suited both our needs and we found ourselves coexisting quite peacefully.

On Thanksgiving Day, 2000, my world as I had known it came crashing down around me. I began feeling strange and was told by family members that I was acting strange. I don’t remember much about that time period – only that I had to take care of Mom. I began bleeding “from both ends” as they say, and I finally was taken to the hospital by my sister-in-law. I was later told that I fought this move strongly as I knew I needed to stay to take care of Mom.

I don’t know what happened that entire week, but I finally started coming out of the medicinal fog around the 7th or 8th of December, only to find myself on dialysis and receiving transfusions of platelets and blood. I was told I had a rare disease called “Goodpasture’s syndrome or disease,” but I’m here to tell you that there’s nothing “good” about it LOL. It is an auto immune disease and the body turns on itself. In my case my kidneys and lungs were attacked.

Meanwhile, Hospice had called my brother in Alaska to get him home for Mother’s care. His wife had informed Hospice that it was his mom and his

responsibility. By the time I was well enough to understand what was going on, he was ready to put Mom in a nursing home and wanted to ship me to Lafayette (La.) to be closer to my daughter. Of course that was stopped immediately, and I returned home on December 13. I was so upset that he would think of doing something like this to our mother and I questioned him about it but got no answer except that he “couldn’t handle it,” yet he expects me to handle everything.

My kidneys are now functioning at 30% and I am off of dialysis. I have to get bloodwork done on a weekly basis and get an epigen shot which is to help my body make red blood cells. My white count has been way too high and the red count has been too low so have been on lots of different medicines.

My hardest hurdle to jump was returning to the role of caregiver with my health so much worse than it originally was. We again began a search for a cleaning lady, and we’ve had our share of doozies. We tried one lady who claimed to be a “Christian” who agreed to take $300 per week to do the cleaning, cooking and taking general care of both myself and Mom. Unfortunately she just wanted the money, for she didn’t cook, clean or take care of Mom. She left one morning with no notice, and when her daughter called a week later wanting to know why we had “fired” her mother, we told her the entire story. “Oh, she’s doing it again then” was the daughter’s only comment. We did have a cleaning lady come in once a week to do the cleaning and with only Mom and I here and in bed most of the time, very little of the rest of the house gets dirty…

Now with my being on chemotherapy, steroids and several other medicines, I simply don’t have the energy to do much. We finally found a wonderful lady through Mom’s hospice aide who comes in every morning and stays until noon, which allows me to get a little sleep after my being up several times during the night with Mom. She gets Mom up, feed her, gives her medication, washes clothes, folds them, changes beds and does some of the cooking. When she starts something cooking, it makes it much easier for me to finish it later in the day. It’s still so hard to clean up after dinner, get Mom on the nebulizer, prepare her for and get her into bed, give her all of her night’s medications and make sure she can get to the potty chair when she needs to – and try to take care of myself at the same time. I’ve been repeatedly told by my doctors that I need to stay off my feet with my legs elevated, and when I explain what my responsibilities are in caring for Mom, both doctors understand my frustration but repeat that my health is suffering because of my continuing activities.

Mom has CHF, A-fib, COPD, has had 2 strokes and numerous TIA’s (mini-strokes) and has the beginning of alz/dementia. I have acute chronic thrombophlebitis, deep vein thrombosis, degenerative disk disease, dissolving disks and now this “goodpasture’s disease.” Between the two of us, we could start our own pharmacy and with all of the equipment we have, our own hospital as well.

I no longer feel strong and in charge as I did when I first began taking care of Mom. I feel lost and lonely with my computer my only link to the “real world.” I feel that I’m not doing enough for Mom, even though I’m doing all I can physically. I hate that we had to hire someone else to do the job I had been doing for almost five years. It’s very hard to be a caregiver and a patient at the same time and feel like you aren’t doing a good job of either one. Hopefully these drugs will start working and within the next year I’ll be over the “goodpastures.” It takes at least a year for them to be sure I am over it, and I could always have a relapse. Trying to follow the doctors’ orders about myself and take care of Mom has been a challenge and will continue to be one until I get over this disease. I pray that no caregiver gets this ill and has to revert to being the patient rather than the caregiver. It’s very hard to take care of yourself with a deadly disease while at the same time try your best to be a caregiver to a loved one.

One of my biggest regrets in this whole scenario is that Mom is having to spend her hard earned money to hire someone to come in to help us, mainly because we have no help from my brother or his wife. I struggle with the conflicting feelings of “at least she has someone to help her” vs. “this person she’s hired is doing MY job in taking care of her.” This is one case where there is no “right” or “wrong” – if I do for Mom like I want to, I’ll end up back in the hospital, and if I stay in bed and let others take care of Mom, I find it hard to life with myself.

Two years ago, Mom was given between 1 1/2 to 2 years to live. I watch her carefully as she tries to eat (more for my sake than for hers) or as she watches the Braves on TV (now that’s something she can get excited about) and I believe at this point that she’s going to make liars out of all her doctors. She has good days and bad days, but then don’t we all? So I’ve let myself readjust my thinking about the future – and I feel certain that within a year, I’ll again resume ALL of my responsibilities of caregiving without the help of strangers. I only have one mother, and when she eventually goes to her grave, I want to be able to feel successful in my caring for her and know that no one could have done any better.

Karen Evans