JoAnn from Nebraska

My son William (40 at onset, 42 when died) was living in Thailand when he was diagnosed with leukemia. He wanted to come home for treatment. It was very stressful working with American Embassy, Dr's in Thailand and airlines but we were able to get him home ($1700). He was seen by oncologist here who immediately sent us to UNMC in Omaha (3 hours away).

There the diagnosis was confirmed. He was admitted and that was the start of our 2 year journey. I retired from my job at a Hospital (23 years) to take care of him. Over 2 years we made monthly trips to Omaha while receiving home health care when home. In June of 2015 he received a bone marrow transplant. We were required to stay in Omaha 100 days. This put stress on my husband and older son to take care of things at home. My older son made many trips to see his brother often staying to give me a break. I was so concerned being his caregiver. When he was a patient I got to be mom but in the hotel and at home I was responsible for medications, watching for signs and symptoms that would indicate something was wrong. On day 90 he relapsed and was back in the hospital for a different kind of chemo and radiation.

At home it was blood draws that often meant trips to the local hospital for transfusions or treatments. He got a blood clot in his PICC line, he got ecoli, and he had seizures. I took care of his medical needs and often was hurt by things he said. I knew in my brain that it was the cancer but my mommy heart hurt.

In Jan 2016 he relapsed a second time with the leukemia in his spinal fluid. Another long hospital stay for lumbar punctures and bone marrow biopsies. As a mommy we are suppose to take care of the "boo boo's" but I didn't have a big enough bandaide for this one. Later in the year he went into respiratory failure and we almost lost him. We had lots of serious talks. The hardest was when he asked me to sit and listen to his end of life/funeral wishes. That ripped my heart to shreds. Mommies are not suppose to bury their babies! He made it through that crisis and we had time home. It was so difficult. He would want to go places which meant taking oxygen tanks everywhere and making sure he didn't get short of breath.

In July 2016 he had fluid in his lungs so another stay away from home. All those stays were hard on our budget. No matter how cheap you try to eat it adds up as well as the gas to go back and forth. Those concerns added to my over the top stress level. Thankfully the cancer center in Kearney was able to help with some gas cards. This stay meant chest tubes so he couldn't even get out of bed. On a Friday night I went to the motel (we stayed in the hospital hotel as it was less expensive and I could go to the room whenever I needed) while he was watching television. Sat morning I went to the room to find that the leukemia had gone to his optic nerves and he was blind. My heart took a huge hit when he said "mom I'm never going to see you smile again."

Now we had the decisions to make about hospice. Bill was so brave and never complained just listened and made his choices. He was transferred to a local nursing home on hospice. Another hit to the heart when he said "mom I always promised you I would never put you in a nursing home. I am only 42 and you are putting me in one" OUCH. While on hospice he refused to be an invalid and wanted to go shopping and out to eat. I was exhausted because now besides the oxygen tanks we had to take the wheel chair. He was retaining fluid and it was painful to walk. He adjusted so well.

One day he had me take his computer and he dictated what he wanted me to write as he sent goodbye letters to his friends. It was hard to type with tears running down my face. He lived 3 weeks in the nursing home. We talked about his wishes. He wanted to be cremated and wants his ashes scattered around the orphanage in Korea where he lived as a baby (both my boys are adopted from Korea). He asked that any memorial money be sent to the Holt Adoption Agency as a thank you for giving him to me. More tears and heartaches. I went to the home every day and spent nights with him when he asked. My sister came from Missouri and spent nights with him too. It was obvious he sensed the end was near and didn't want to be alone.

On Aug 23rd he was in the dining room teaching the nurses how to make octopus salad (his favorite). His favorite nurse was going to come have supper with him. Before she got back he went unresponsive. His brother and I were with him all night and at 7:35 am the 24th he went to heaven. I didn't know how physically, mentally, and emotionally exhausted I was until he passed. But I would do it all over again for my son. That's what mommies do.

The first few weeks after his death I was a lost soul. I had worked 54 years then for 2 years spent everyday caring for him. Now I would wake up and think "what am I suppose to do" I could easily have stayed in bed all day everyday but I knew he would not want that so I forced myself to move on.

It has been a little over a year since his death. His brother and I are still struggling with losing our Bill. I am volunteering at the nursing home he was in and I go to grief support group. I am taking classes to be a hospice volunteer. I learned so much from Bill and want to help others.

Being a caregiver to your adult child is very difficult. It was hard to find the line between being mom and being caregiver. No 42 year old wants his mom around 24/7 taking care of him so there were tense unhappy times for both of us. He would complain I was smothering him but in the next breath complain I wasn't checking on his needs enough. The emotional aspect was just as hard if not harder than the physical issues we had to deal with.

My advice to other caregivers is take care of yourself. Let others help you (I was mom and in my mind this was my job and I didn't want anyone else caring for my baby). Step back once in a while and let someone stay so you can go for a walk or to a movie. The best advice I got was from his social worker who truly is an angel. She told me his cup of life was full of grief. Grief from the loss of his former good health, grief from the loss of his life in Thailand and anger at the disease. He had no room for anything else. She also said he lashed out at me because I was his safe person. He knew that no matter how mean he was I was never going to leave him.

I took many pictures and made a scrapbook of his journey. My original intent was to give it to him when he beat the disease so he could see all he overcame. Unfortunately he didn't beat the disease. I am glad I have it to see the times he was out and about and had smiles. To remember all the wonderful doctors and nurses who took care of him and the friends who spent time with him. I took notes everyday and am now in the process of writing his story.

I didn't realize how much this disease changed me. No longer were my conversations about who was dating who or who changed jobs or how the cost of living was going on. My conversations were about lab results and chemo doses and procedures. Things that were once important to me were no longer in my thoughts. Bill and his disease were all I thought about for 2 years.

I will admit I still have anger that he wasn't able to win the battle and memories hit at odd times that take me to tears and I have to just sit and cry. I am not sure that will ever end.

Being a caretaker is the hardest job I have ever had but also the most rewarding.

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