My significant other passed away. Tim was all that held me to my life in Asheville, NC. His young age of 30 and my age of 45 equaled out. I felt his illness and my age made us even. What did age matter anyways? We got along, loved the same things. Enjoyed each other's company. He made me laugh. I made him laugh. We simply fit.
Tim had chron's and was the sweetest man you'd ever want to meet. And a man in such terrible pain. Towards the end of his life he needed TPN, Total Parenteral Nutrition. Its basically nutrition in an IV that is implanted in your chest and goes directly above the heart and drips down. It looks like milk, and is also known as mother's milk due to its transparency.
I was taught how to administer it. Clean hands with soap and water. Sterile environment. Syringes to put in the vitamins. Tubing to hook it up. All attached to a pump that often failed time after time. Only to be replaced by a new one. Often leading to hours in the middle of the morning on cold winter nights to meet the on call nurse.
Tim grew tired of it, and often just refused it. Towards the end he weighed 90 lbs. Then the government stopped his pain meds. Too expensive, and his diagnosis did not warrant them. He did not have cancer but if he had they would have paid for them, but intead he had something most of them didn't even understand. Ulcerative colitis and chron's. His gut surely warranted some respite for relief, as according to the physician, it was knotted like a "ball of twine," and this was stated to me on his 11th major surgery. At any rate they stopped them as they were quite expensive, and Medicaid no longer wanted to pay for them.
He chose to go into the hospice due to the pain. He said it was that or he would take a gun and kill himself. He simply could not tolerate the pain. He walked in under his own accord.
His condition deteriorated as hospice only makes them comfortable. He could no longer have the TPN. It was "not allowed." He went from being ambulatory to bed ridden in a week. He became incontinent in 2 weeks. It mortified him. The medicine they gave him made him sleep a lot and so he grew weaker staying in the bed. Fluid settled on his lungs.
6 weeks from admittance he died there.
I never left his side except to go get food. I stayed every night with him on a small couch bed. Even at the end I helped him use the bathroom with getting his supplies, catheter, water bottle, and basin. I emptied it and we would repeat it each day. Soon he no longer ate enough to even try to use the bathroom or do the procedure that he had done for nearly 30 years.
I was in the process of doing a letter to the company Medicare hired to let him know his request for a continuance was denied. Medicare you see isn't the bearer of the executioner's ax. They hire someone to do that. I finished the letter the night before he died.
I listed all his major surgeries. I listed all the increases in medications over the years. You see, he always said, it was his fault. He waited too long to get help. He was a young man of 18 when it began. He waited and had to go under an emergency surgery where the physician said his guts fell apart in his hands.
It started with rectal bleeding. It lasted for almost 30 years. First the surgeons gave him a colostomy bag. Imagine as an 18 year old man how this would make you feel? It's why he said nothing.
So, if you or someone you know, has symptoms similar. Seek help. Waiting is not the answer. Waiting makes it so very much worse. So much so, nothing much can be done.
Except a bag. He had another surgery for an internal pouch. They reconstructed it out of what was left of his large intestine. He used the bathroom not as normal men do but through a catheter that he had to stick about six inches inside a small stoma. And then there were the surgeries for scar tissue release. Cutting out more due to obstructions/lesions. Pain meds. Building tolerance. Higher doses. Higher costs. And finally they cut off his meds. Just like that. Quite simply. Hospice. Death.
And two days after his funeral. I came home to Texas.
Wow, thank you for sharing your remarkable story. How wonderful and loving and caring you are. I am so sorry for your loss, yet I feel that it will only make you an even more caring and loving person. I enjoy this web sight simply for the freedom it gives people such as yourself an avenue to share their stories. May peace and serenity be with you.
Thank you so much. I am just now reading this. I find it difficult to keep up with everyone's comments. It seems it used to be easier but not has become increasingly difficult. I appreciate your kind words.
The story makes me feel sad yet also touched by the selfless and unconditional love shown....I know there are people out there everyday giving their all to their loved one in need....But it's not seen or heard about as much as the negative side of human nature. Thanks for sharing.