My mom is a single 62 year old divorcee that brought up two boys with limited help. Today she resides in a nursing home, suffering from a debilitating vascular disease that is destroying her limb by limb and causing the most excruciating pain a human can imagine.

It all started two years ago when she began having pain in her right hand. A trip to Beth Israel Hospital in Boston revealed that she had blood clots throughout her body. She was particularly clotted up from her elbow through her fingers. Surgery was performed to alleviate the pain and she was left with her pinky, ring, and middle finger awkwardly curled in a semi fist sort of way. The pain continued with the right hand and she was prescribed narcotic pain medication such as hydromorphone and oxycodone to treat the symptoms.

Because of the curling of her fingers, sores would appear on her knuckle area, the spot where here fingers curled. Her pinky finger became infected and it was determined that it would need to be amputated. Less than one year after her first surgery she had her pinky removed. The pain persisted and the dosages of her narcotic medicines were increased. Doctor’s decided to switch out the hydromorphone for Dilauded. She was now taking 8mg of dilaulded, 30 mg of oxycodone extended release, and a 40 mg of oxycodone extended release as needed. This regimen was somewhat managing her pain and she was able to participate in life but it came with restrictions. She became uneasy on her feet. She could no longer have the confidence to control a vehicle. Eventually her primary care physician had her driver’s license revoked. This was especially painful.

Then less than two years after her first surgery she began to feel pain in her left hand. The pinky, ring, and middle finger were involuntarily beginning to curl in like they had on her right hand. She was also experiencing extreme bouts of pain in her left hand. Pain that brought her to tears and left her with severely puffed up eyes from the amount of crying. Her primary care physician decided that it was time for her to begin receiving hospice care. She said that the hospice team would be able to deliver her the medicine she needed and provide the nursing support that she required. What wasn't fully explained was that at home hospice was designed to support the primary care givers no be the primary care giver. Turns out I was the primary care giver.

Once on hospice her narcotic pain regimen was turned up another notch. She was increased to 16mg of dilauded every three hours, 15mg of methadone taken morning and night, and various dosages of fentanyl patches. She was being transformed in to a living zombie, but still experiencing significant bouts of pain. Because of the significant amount of narcotic medicine in her body she was unable to move around her house safely, prepare food for herself, or even dress and go to the bathroom on her own. At this point she required 24 hour care.

I had recently started a new job with had very promising upside and tremendous financial potential. I had two young boys at home under age 5 and my wife was pregnant with our third child due in just a couple of months. I was also involved at a high level in a charity that required my being away for day’s at a time during the charitable events. During a one month stretch I had spent only 4 days in my own bed. The rest were split from traveling for work, sleeping at my mothers apartment on a deflating air-mattress, and splitting a hotel room to complete my charitable volunteer commitments. My two boys asked me when I was going to play with them again. I told them that someday they would understand and they would know that their father was a good man.

One day I found myself sitting in the parking lot of a Burger King and received a call from my primary care physician that I had missed my appointment with him the prior day. I had mistakenly put it on my calendar for Tuesday instead of Monday. This was the moment that broke me. I had intended on discussing my life with him and the potential of receiving therapy and even using an antidepressant to get through my challenges. The fact that I had screwed up something that I thought could finally help me caused me to breakdown and weep like a 10 year old. I finally knew I couldn't do it all on my own.

My mother has now resided in a local nursing home for over a month after falling and breaking her hip. She’s not likely to reside anywhere else in her life. Today her case coordinator approached me about putting my mother under a designation of “comfort care” which allows the doctors to use as much narcotic pain medicine as they see fit. Likely she will be in and out of consciousness as they increase the dosages to address her pain levels. I continue to visit her 4-5 times per week and even take her out about twice a week.

I have missed out on some fun things with friends because of this. I have missed out on spending time with both my wife and children because of this. It has even caused additional strain in my marriage. A wise person once told me that commitments are greater than feelings. Many times I've had the feeling to run away and disappear or do what makes me happy right now. But I am also committed to holding my mothers hand has she takes this long painful stroll through the end of her life. The world could use more commitment over feelings.