Empowering Caregivers-Spotlight-Karen Evans AKA KEvans7416

As many of you kow, I am the primary caregiver for my mother who will be 84 in June and is failing rapidly. Although I am disabled myself, I would not choose to be anywhere else. I feel that my mother took care of me for the first 18 years of my life and it's now my turn to take care of her.

This is not my first time being a caregiver. In December 1969 my father was diagnosed with a malignant brain tumor and at that time I was married with a 4 month old baby. I bundled up the baby (my daughter Debbie who was born in August, 1969) and stayed with Dad and my grandmother so my mother could go to work for a few hours. While at Mom's house I would get the washing done, take care of my dad and my grandmother. Then back home to fix dinner for my husband and finish my own housekeeping. Dad really enjoyed being around and playing with Debbie, and I was happy that I could help my mother and grandmother.

We lost my dad on April 30, 1970 after being in a coma for two weeks. His funeral was one of the hardest things I've ever experienced. I just couldn't believe I didn't have Dad to talk to anymore, but I learned that in talking to God, I know He gives my messages to Dad. I truly believe this, as I've had some answers to questions that I know had to come from my father.

I was divorced in late 1970 when Debbie was 16 months old and raised her entirely on my own. In 1986 I developed my first blood clot, which was one year after my ovaries were removed due to the discovery of cysts. I continued to experience blood clots, back problems, vascular problems, and in 1988 my cardiovascular surgeon advised me either to quit work or be prepared to die as I could not be on my legs for any length of time. I was a secretary / bookkeeper / accountant at the time and sat most of the day, but his ultimatum caught my attention.

Meanwhile, my mother had re-married and moved to Mississippi from Louisiana in February 1987. Had it not been for the love of my mother and stepfather (Papa Joe), I would have become one of the homeless people as it took me from March 1988 to January 1990 to get my first disability check. It was retroactive (and a good one!) but thanks to them Debbie and I had a place to live while I fought a long battle with Social Security. Had I known it would only take one call to my Senator to get the ball rolling, I certainly would have made that call sooner.

In 1989, my step-father had was diagnosed with stomach cancer and required surgery. The doctors removed as much as possible, and although he went through chemo and went into remission, it returned worse than before. I assisted Mother with his care until he passed away in April 1991. He was buried on the day my father had died, 21 years later. His passing was one of the most memorable things I had ever seen. He was talking to us, then asked for something for pain, and as he turned over on his left side he began to breath much more slowly. I went for the nurse, who immediately summoned the doctor. Papa Joe got the sweetest smile on his face that I've ever seen, took one deep breath, and as he exhaled he left us. He looked so happy and peaceful that Mom and I knew the Lord had come for him.

Since then it has been just Mom and I taking care of each other. When I was having so much surgery she would stay with a friend of hers in Louisiana near the hospital so she could be with me most of the day.

In January 1999, she fell off of the end of the bed, breaking her wrist, and it was the beginning of the downhill of her health. One week after she had the cast removed she was admitted to the hospital with staff pneumonia, staff infection of the blood, COPD and CHF. Then we found out she also had A-Fib, osteoporosis, TIA's and several regular strokes as shown on the CT scan. She has been in and out of the hospital and in rehab twice. I have been to and from the hospital every day and to the rehab center every day for day-long stays.

The second time she went to rehab, I was in the hospital in Louisiana with more blood clots. I have been in the hospital 4 times since 1999. The first time, Mom's cousin was able to help and the second time I had to leave my brother in charge. Without going into details, my brother is an alcoholic. His wife is supposed to be on Prozac (but doesn't take it) and is totally undependable. That puts me the one and only caregiver. I would not have it any other way. They don't know how and aren't capable of taking care of her on a 24/7 basis.

I do have an adjustable bed and have the computer set up by the bed so I can have my legs elevated while on the computer. We tried to get more help than home health. Mom does have an aide 5 days a week now, with Hospice and a nurse twice a week. The Social Worker put my disability check in with Mom's income, which I questioned as I was paying rent and not living at Mom's house rent-free, but evidently Mom falls between the cracks for financial help. She has too much to qualify for any other help and not enough to live on. Thank goodness my step-father was retired military, as she can get some of her medications free at the Air Force Base, and he also retired from Metropolitan Life Insurance Co. so she has her medicare supplement paid for and doesn't have to pay for that. She also has a presciption card, so her medicines that aren't free at the AFB are discounted at a local pharmacy.

We have found a cleaning lady who comes in every 2 weeks to clean (the hard stuff), and she gives us a break on the price because she says the house is never dirty enough to charge full price! I do all of the cooking, cleaning of the kitchen, washing of all clothes, changing of the beds (the aide does make Mom's bed though, which is a big help due to my disk problems). The only time I leave the house is to grocery shop or run to get medicine for one of us. It is hard having to do this on my own due only to my health, but I feel lucky to be able to take care of her.

I miss being able to visit with my daugher and grandchildren, who live back in Louisiana, but she comes to visit as often as she can. She's a teacher in high school and is taking college classes for her Masters' Degree, and is expecting her third child.

Although I feel at times that I am letting her down, and I do miss seeing my grandchildren terribly, her mother-in-law is a tremendous help to her for which I am very thankful.

Mom and I believe my disability was God's way of letting me be with her not only to help care for my step-father but now to take care of her. Mom is on a downhill spiral right now. I don't feel that she will be with us much longer, but I keep praying that God will allow her to remain with me as long as she is not in pain and suffering.

I was raised in the Baptist Church, with Dad a Deacon and Mom teaching in the Beginner Department. During my marriage we attended a non-denominational church and taught the teenagers on Sunday night. After the divorce I ceased to attend, as my in-laws were still members of the church and I wanted to avoid unpleasant encounters. Mom took Debbie with her on Sundays to the Baptist church, but I stopped attending altogether. After Debbie left for college, I returned to the non-denominational church and felt at home again.

I still belong to that church even though it's in Louisiana and I'm now in Mississippi. But Mom and I do sit together on Sundays and watch church on TV, and at times the Deacons of the First Baptist in Long Beach bring us the "Lord's Supper" when they serve it in church. If not for my faith in God I don't believe I could do what I've been able to do and still survive. In my opinion, you have to have a belief in some type of higher being to lean on, to pray to and to ask help from. That is my Lord. I think I've become much closer to the Lord because of Mom's illness and that it's Him who is helping me through these dark days and showing me the light.

When I found the Empowering Caregivers Group it was like a life saver to me. I was floundering, not knowing what to tell the doctor, when to MAKE Mom go to the ER and when it was okay for her to stay home, etc. I've met some wonderful people in this group and don't know how I would have made it this long without them.

I've learned to set boundaries that I will not let my brother cross and what to do if he tries. Thanks to Gail, Joan and Patti, I realize I don't have to take his abuse just to keep Mom happy. I can stand up for myself without upsetting her. I am sure some of you remember there was a time when I didn't know HOW to stand up to him when he was running all over mom and me; but thanks to Gail, who one Thursday night, kept on me to get "EMPOWERED," I finally realized I could do it and the next day I let my brother and sister-in-law know that "from now on if they upset Mom, they would be told to leave." Now that I am feeling empowered, if he comes over and he's been drinking or is ugly, I tell him to leave. So far, it's been working and according to what I have heard, he is scared of me to some extent because I will no longer listen to him and "kow-tow" to him. I am standing up for Mom and myself now. I am also able to take charge in other areas of my life as well. This makes me feel strong and wonderful.

Thanks to all of you who I email and IM with me. I'll never know how to thank you for being there for me. I especially want to thank those of you who sent me get-well wishes this month when I was hospitalized for a week. I hope I have been there for you as well. This group has made such a difference in my life, and I thank all of you for your opinions, your help ,your concern, your prayers and most of all your love.