Help Joann Get Care In Her Final Days

My name is Kim and I’m writing this with a very heavy heart. For the last 10 years, Joann has been my friend, my partner, my everything.

Meet Joann, 71 years old. Mom of one daughter. Small business owner of Corks and Curds in downtown Portsmouth, NH. Joann is the life of the party. She loves to dance. Every room she stepped into lit up with laughter.

In September 2021, I took Joann out for her birthday dinner. In the middle of dinner, we got the call — her only daughter had passed away. You can’t imagine what she was going through. But things didn’t stop there.

Three months after we buried her only daughter, Joann came home from a long workday. She tried to tell me something, but no words came out. The next thing I knew, she collapsed on the floor. 911 was called. They rushed her to the ER. Because of Covid, I couldn’t be with her. After hours of waiting, the doctor called me in, sat us down, and broke the news: Joann had a tumor bigger than an orange. She needed surgery ASAP.

First surgery: 10 hours. I waited outside the hospital not knowing if Joann would make it through. She did. We did everything the doctors said. Recovery was great. Joann went back to work.

Fifteen months later, she had another seizure. Back to the ER. We found out the tumor was back. This time it had spread to more areas in her brain and it was bigger than the last one.

Second surgery: 11 hours. I was sitting, waiting, praying, crying. After a long wait, the doctor called and said surgery went well, but this time recovery was tough. The doctor ordered 30 rounds of radiation because some of the small tumor cells were left that couldn’t be removed.

After 30 rounds of radiation treatment, we thought this was it. But three months later, the tumor was back. The radiation oncologist told us we needed to go down to Boston to MGH. He sent us there. The surgeon at MGH did the third surgery. This time it only took two hours. After, he called me and said he only took two of the bigger ones out. The rest of the small tumors he couldn’t get out.

He sent us to oncology for a special kind of treatment — an experimental drug. Hopefully, this would work. We waited and kept getting denied by insurance. After many fights, we finally got approval for the treatment. I was so happy, knowing Joann would be here with me longer.

But after two treatments, Joann fell down the stairs and cracked her head open. Here we go again. 911 called. Rushed her back to Boston for emergency brain surgery. We spent our New Year’s Eve in the ER.

After the long recovery, Joann’s entire left side was paralyzed. The doctor sent her to rehab for 21 days to help her walk again, but it wasn’t very successful.

After rehab, we went back to continue the infusion treatments and then the MRI. When we went in for the fourth treatment, the doctor showed up, sat us down, and said: “I’m very sorry but the infusion treatment did not work. It made your brain bleed and you had two strokes. The worst thing is the tumor is growing bigger and in more areas on both sides of the brain. If we continue, you will have more strokes and will not have a quality of life. Please go home. Eat what you want. Go where you want. Spend time with your family. There is nothing else we can do here.”

It took me some time to decide to call hospice in. But I didn’t know hospice only helps with one hour a day. The rest I’m on my own.

At first, I tried to do the best I could. But Joann keeps falling out of bed when I’m at work. 911 has to come to help lift her up. I have to work full-time — I can’t afford to stay home to take care of her. I have a torn rotator cuff, and I’m a hairdresser. I need my arm to work. Lifting Joann every day is tearing my shoulder apart.

With all the surgeries and the time off, Joann’s small business took a turn. After four years of fighting, she’s really behind on everything. I tried my best for both of us — working my own full-time job and trying to keep her business afloat for her.

We tried to apply for help but got denied after denied. Medicaid said she didn’t qualify. The state said we make too much. Medicare only pays one hour a day with hospice. The system is so broken. You have to be homeless to get anything.

So this is our last resource for help. Joann doesn’t want me to post this. She never wanted to ask. But I’m out of options. For four years I’ve been by her side with very little help. Joann is the strongest person I know.

We need six hours of home health aide care a day so she stays safe in our own home, so I can be at work in peace knowing she’s safe. At $44 an hour, that’s $264 a day. $1,848 a week. For the rest of her life.

Please help us give Joann safety, dignity, and comfort in her final months.

We’re asking for $50,000 to cover six months of home care and catch up on $20,000+ of medical debt from four brain surgeries, radiation, and four years of ER visits.

I need to get back to full-time work or we will be homeless for sure. We know there are generous people out there. Every donation, no matter the size, helps. Every share helps. Whatever is left will be for her burial services.

Joann was the life of the party. Now she’s fading away slowly but surely. Help me keep her safe. Help me keep her from dying alone and afraid.

Thank you for standing with Joann. Thank you from my whole heart.

Kim