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.
14
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36 comments
Feel free to reply to any comment by clicking the "Reply" button.You are an incredible,amazing person,and I'm sure he was thankful everyday for you. Taking the time and caring for someone you love. I am so sorry for your loss.
MeganDraper007
Level 4
Jan 12, 2018
8
I am sorry both of you had to go through that it sound horrific, he sound like a brave young man that you sadly miss.
Living in nation where healthcare exists for all I am horrified that any modern nation can deny what I regard as a basic human right. I have a friend who has chron's and like most patients here timely treatment of the colitis put it into remission. It is a horrible disease sufferers go through agony taking a toll on not only the sufferer but those around them as well. Your move away to Texas will help you leave some of that suffering behind, but, I hope that you don't quite the fight your country needs single payer universal healthcare.
HeathenFarmer
Level 8
Jan 12, 2018
7
So sorry @JustLuAnn to hear that the system didn't work for your Tim. After my medical insurance was terminated by my employer my hospital paid my COBRA for a year then I got on Obamacare which saved my life. At 62 I qualified for Medicare and Medicaid-APTD-due to side effects from leukemia. We need these social safety nets and Paul Ryan wants to take them away from us plus fuck with Social Security. I hope you can get out there January 20th and raise your voice vs this administration.
sassygirl3869
Level 9
Jan 12, 2018
4
I'm in tears. I have seen people with cancer suffer the pain, even with painkillers and morphine and that was hard enough, that kind of suffering should be unnecessary.
ripcurldane
Level 7
Jan 12, 2018
4
Oh my gosh LuAnn! What a nightmare, on so many fronts! There are no words that I can find to capture my fury that our government thinks IT gets to decide who suffers and who does not!! I was caregiver as cancer killed my husband, but it was a quick thing and he was allowed pain killers. Even that haunts me. I cannot imagine what you two had to walk through and wish someone could have made it different. I am leaving a link to a site that helped me at times. Toss it if you prefer. It's the only help I can think of as I recall my own journey when it all happened to us. Private messages are welcome, any time.
www.widda.org
Zster
Level 8
Jan 12, 2018
3
Thank you so much Zster.
It takes a lot of love to stay with someone through so much turmoil and pain.
MarcusF
Level 5
Jan 12, 2018
3
I think the key word is "love." I struggle now but things are better since my little job came about. I moved in with my son for now. I had my own place but things change. Life moves on. My mom passed a year after my Tim. My mom was 101. Tim passed in March, 2014. Why does it feel like yesterday?
I am SO sorry for all you both went through. He's at peace but you may not find that for a long time, but I am sending you so much loving energy...please take care of YOU.
ReadyforaChange
Level 7
Jan 12, 2018
2
My mom died of breast cancer when I was 18. Now my aunt has stage 4 Melanoma cancer. I'm sorry for your loss.
Sarahroo29
Level 8
Jan 12, 2018
2
How very traumatic for you and how terrible the suffering for your loved one, I too have had to watch my man die by inches before my eyes. Sending you much love and a huge hug x
psycheworks
Level 8
Jan 12, 2018
2
age doesn't mean anything
LeighShelton
Level 8
Jan 12, 2018
2
I agree to an extent. I am a retired school teacher and I told my Tim that if wasn't 30 which he was when we met, that I would not get involved. Mainly because my oldest students were in their late 20's when I met him and it would have be awkward. In the end, it all worked out.
fuck what other people think
Hi JustLuAnn, I'm sorry for your loss.
I was recently dating someone with the same age difference.
SleeplessinChi
Level 3
Jan 12, 2018
2
I am so sorry for your loss, @JustLuAnn, and for the prolonged pain you both had to endure.
My experience with loss has mostly taught me one thing: that everyone's grief if unique, and can't be quelled with simplistic formula's of stages and rituals. The way and the time you experience your grief is just as individual as you are, so just listen to your inner self as you work through it. Do things at your own pace, and you'll survive this. There is no right or wrong other than self-destruction.
Thank you for honoring us with your story. Sending {{{ hugs }}}
Lauren
Level 8
Jan 12, 2018
1
I’m so sorry. What a loving, dedicated caregiver you were to Tim. (Tim was my late brother’s name; lost him to Glioblastoma in 2016).
As a former hospice nurse, I’m also so very sorry for your experience with them. I left the hospice field(the Charlotte area) in 2003...though each agency is a bit different, it sounds as though MUCH has changed in the laws, and all I can do is send you hugs. ❤️❤️❤️
CarolinaGirl60
Level 8
Jan 28, 2020
1
Thank you for your kindness.
I am so very sorry for all that has happened to him and, by extension, you. I have some issues, but nothing even close to that. I am hoping that there is enough outrage in the electorate to change things for the better for anyone with serious or chronic medical conditions that require extensive treatment. Please accept my most heartfelt condolences.
sterlingdean
Level 6
Jan 28, 2020
1
Thank you so kindly. He has been gone since 2014. Yet, it seems like yesterday.
@JustLuAnn My brother passed in November of 2017 and My mother in February of 2018. I still feel them, the parts that are missing in my life. They say it never really goes away but you learn to deal with it over time. I hope that time is your friend.
Your account of your love one's suffering brought tears to my eyes. The world needs more people like you. I am frustrated with the government interfering with prescription pain meds. If anyone ever needed them it was your significant other. I am sorry for your anguish as you loyally stood by watching him suffer. Wishing all the best for your future.
Leutrelle
Level 7
Jan 13, 2018
1
I am so sorry. You and he have suffered hell already. Times like this I wish there were a Heaven to reward people such as you and the others who have suffered so much. I know he, Tim enjoyed, fully, his years as a youth and with you.
Doesn't this convince you even more fully that there couldn't possibly be a loving Father God who cared for us? It does, me.
PEGUS
Level 5
Jan 13, 2018
1
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