Don't Lose Heart

Hi Jean,

God Bless you for doing this. It will let other caregivers know they are not alone, or some of what they can expect. I grew up in So California. My husband and I moved to Missouri in 1994 to raise our two daughters in a healthier environment. After 11 years in MO, we felt a prompting to move back to CA. After being back TWO WEEKS, my mother was diagnosed with Uterine cancer. She was 73. We were never given the “stage” of cancer, or a time frame, so we had no idea how long we would be taking care of my mom. I just knew that I had to take care of her, no matter what she needed. And that meant that she was going to live with us for the next 2 ½ years.

This was a strong, German woman, who had not been to a doctor since I was born in 1959. I was the last of five children. I have a sister in Florida, two brothers in Missouri, and one brother here in CA. But he was too busy with his family life to take on any responsibility where my mom was concerned. He never offered to stay with my mom so my husband and I could go out to dinner, or just escape to a movie. He lives 60 miles away, and I guess it was just too much of a burden to drive all that way to help out.

I work from my home, so I was her sole caregiver. We never had outside help. We never even had a nurse come to administer shots, the doctor’s office taught me how to do it. When her insurance company denied treatments, or didn’t pay for certain shots, I was the one who had to call and threaten that I would go to the Insurance Commissioner, which I ended up having to do. I was the one who had to call the ambulance too many times to count, because she was passed out on the floor, or couch, due to low blood counts. I was the one who had to sit with her in the Emergency room for 14 hours, till they could get her a room. Time and time again. I was the one who sat at her bedside all day, every day, while she was in the hospital, because she didn’t want to be alone.  I was the one who had to clean up vomit, and diarrhea. I was the one who cleaned her, when she was too weak. I was the one who paid her bills. I was the one who had to make sure she was eating healthy meals. I was the one who had to make sure she was taking her medications. I was the one who had to go to the pharmacy to get her meds. I was the one who had many, many sleepless nights worrying about her. Was she going to make it through the night? I was the one growing weary with fatigue.  I was the one who had to give up going to church on Sundays, because she was too sick to be left alone. I really felt like I had to give up my life to take care of her.

Don’t get me wrong. I am not complaining. It’s just that nobody understood what I was going through. My siblings didn’t have a clue. I didn’t have anyone to turn to, but my husband. He was right beside me through thick and thin. He knew that I was in CA for a reason, and that was to be my mom’s caregiver.  People would ask me how I did it. I would reply, “not by my strength, but His”. I am a Christian, and God was by my side each and every day. There were days that he had to carry me, for I would be too exhausted. But He helped me get through each day.

My mom told me time and time again, that I was her angel. She appreciated everything that I did for her. She expressed that over and over. I cherished the time we had together during the 2 ½ years. She told me stories of her growing up in Germany, (during Hitler’s reign), that I probably wouldn’t have ever heard otherwise. She was always a very private person, and usually didn’t show her emotions. I spent many hours on the road with her, going to chemo and radiation treatments, and doctor’s appointments. Her doctors and treatments were in her home town 60 miles away. This went on and on. There was a brief time of “remission”, which gave me a break, but then the cancer was back with a vengeance.

The only help I received from family, was when my aunt would make a meal here and there. We would pick up the food after treatments, as she lived 60 miles away from me also. That was a big help as we would be gone all day on chemo days.  My siblings would call from time to time to see how mom was doing, but they just didn’t understand what I was going through. How could they?, they weren’t walking in my shoes.  They never offered to come and stay with my mom to give me a break. In May of 2007, I told my sister that I wasn’t going to miss my daughter’s college graduation in Missouri for anything, and that we needed to find someone to stay with mom. Only then did she offer to come to my house and stay with mom, so I could attend the graduation.

In November, 2007, right after Thanksgiving, my mom was hospitalized for what would be the last time. She had a perforated bowel from the radiation. She was given three days to live. Surgery was not an option due to low blood counts. Her will to live continued for 28 days. She had the doctors baffled. They told us day after day, that she wouldn’t survive another day. Her pain was so intense that they gave her the highest doses of pain meds that they have ever administered. The doctor’s said she would be slipping into a coma from the high doses. She never did. She was coherent till the last 6 hours. But that was not a good thing, as she was in excruciating pain.

My siblings and I took turns staying all night with her in the hospital room during the last 14 days of her life. This was a very blessed time for all of us, as we had time to say our “I Love You” and goodbyes. But the most precious gift I received in all of this, was it was my turn to stay with her, in what ended up being her last night on earth. My husband ended up staying with me all night in her hospital room. We witnessed the worst night of our lives, watching her body slowly shut down. We sang her hymns, and Christmas carols through the tears. I told her it was time to let go. She fought the good fight, but she was tired and her body had grown weary. Two hours later, she was Heaven bound!

Right before she took her last breath, I was wiping her face with a wet cloth. She opened her eyes one last time, looked right at me, as if she was saying “you’re still here taking care of me”. She then closed her eyes and was gone. I will never forget it. God gave me the gift of being the one to be with her that Christmas Eve day when she passed.

If I had to do it all over again, I would. Being a caregiver made me a stronger person. It gave me a boldness I didn’t have before. I never knew I would have to fight for my mom. Be her voice. Even in the end, the hospital wanted to move her to a nursing home, because they didn’t want her dying in their hospital. I appealed to the insurance, and won. Mom got to stay until the end.

I hope I didn’t sound too negative in my letter. I just wanted to tell my feelings on being a caregiver.

My best to you, and may God bless you and keep you.

Sincerely,

Kathy W