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Hi Colleen, Sorry for the delayed reply and thank you for checking in. The last two weeks have been chaotic. When at the hospital to meet the transplant team to begin the interviews, my husband was in such bad shape, they immediately admitted him and began the physical evals. Within 2 days, the ICU roller coaster began. It was touch n go for several days. The team has worked tirelessly to get him stable, so they can complete the testing and formally submit his case. They all believe he will be approved despite the fact the addiction has not and is not being addressed. We live 125 miles away from the hospital he is in - which has made my visits more infrequent. He is adamant to come home; I am equally as adamant I can't care for him in this condition. It's a battle and he is angry and frustrated with me, thinking I am being unreasonable and selfish. I reached out to the transplant team today to ask them to slow the roll on the discharge. They were under the impression there is fulltime care here at home, which there is not. It's just me and with work, all the more challenging. The man is still on a feeding tube and catheter so I am puzzled as to why there is such urgency to release him. ? Pretty sure it's coming from my husband. Now I am wallowing in guilt - questioning if I did the right thing sending the brutally honest email - yet knowing I did. Fearing they will not approve him now; fearing they will. His pre-transplant care plan has now become a glaring issue for the transplant panel. I've been clear I cannot be the primary or secondary post-caregiver. Now I feel trapped that I have to be the pre-care provider. I am not heartless and want to do what is right ... but I am struggling more then ever. So very, very tired.

Hi Colleen, Sorry for the delayed reply and thank you for checking in. The last two weeks have been chaotic. When at the hospital to meet the transplant team to begin the interviews, my husband was in such bad shape, they immediately admitted him and began the physical evals. Within 2 days, the ICU roller coaster began. It was touch n go for several days. The team has worked tirelessly to get him stable, so they can complete the testing and formally submit his case. They all believe he will be approved despite the fact the addiction has not and is not being addressed. We live 125 miles away from the hospital he is in - which has made my visits more infrequent. He is adamant to come home; I am equally as adamant I can't care for him in this condition. It's a battle and he is angry and frustrated with me, thinking I am being unreasonable and selfish. I reached out to the transplant team today to ask them to slow the roll on the discharge. They were under the impression there is fulltime care here at home, which there is not. It's just me and with work, all the more challenging. The man is still on a feeding tube and catheter so I am puzzled as to why there is such urgency to release him. ? Pretty sure it's coming from my husband. Now I am wallowing in guilt - questioning if I did the right thing sending the brutally honest email - yet knowing I did. Fearing they will not approve him now; fearing they will. His pre-transplant care plan has now become a glaring issue for the transplant panel. I've been clear I cannot be the primary or secondary post-caregiver. Now I feel trapped that I have to be the pre-care provider. I am not heartless and want to do what is right ... but I am struggling more then ever. So very, very tired.

Hi Colleen, Sorry for the delayed reply and thank you for checking in. The last two weeks have been chaotic. When at the hospital to meet the transplant team to begin the interviews, my husband was in such bad shape, they immediately admitted him and began the physical evals. Within 2 days, the ICU roller coaster began. It was touch n go for several days. The team has worked tirelessly to get him stable, so they can complete the testing and formally submit his case. They all believe he will be approved despite the fact the addiction has not and is not being addressed. We live 125 miles away from the hospital he is in - which has made my visits more infrequent. He is adamant to come home; I am equally as adamant I can't care for him in this condition. It's a battle and he is angry and frustrated with me, thinking I am being unreasonable and selfish. I reached out to the transplant team today to ask them to slow the roll on the discharge. They were under the impression there is fulltime care here at home, which there is not. It's just me and with work, all the more challenging. The man is still on a feeding tube and catheter so I am puzzled as to why there is such urgency to release him. ? Pretty sure it's coming from my husband. Now I am wallowing in guilt - questioning if I did the right thing sending the brutally honest email - yet knowing I did. Fearing they will not approve him now; fearing they will. His pre-transplant care plan has now become a glaring issue for the transplant panel. I've been clear I cannot be the primary or secondary post-caregiver. Now I feel trapped that I have to be the pre-care provider. I am not heartless and want to do what is right ... but I am struggling more then ever. So very, very tired.

Hi, Colleen, I'm Marianne, and have been a caregiver for my husband for a number of years now, at different levels. We both lost our spouses after long marriages (40 & 44 years), and met online, and have been married almost 14 years. My husband had a long time wound on his foot resulting from a jeep accident when in the Army, more than 50 years before. Wound care was a big part of our life from the beginning, but there also was healing, to be followed, perhaps a year later with recurrence.

About 3 years ago, it was discovered that he had a neuroendocrine tumor on his pancreas, and while it was not thought to be a present problem, it has necessitated a monthly shot, and routine scans. 6 months ago, a malignant tumor on the head of his pancreas was discovered, and the surgeon removed it stating he thought he got it all, and there were no other organs affected. We breathed a sigh of relief, of course, but chemo began to try to keep anything else from developing. Well, it has now metastasized to his liver, and yesterday the oncologist strongly suggested we end chemo, as it was not going to do anything to retard the spread, and only continue my husband's terrible side affects from the chemo.

I'm now in shock, my husband who has a very strong faith, is resolute that it's the will of God, while I'm angry that God is not protecting one of his strongest believers, and such a good man. I don't know what to expect as the doc wasn't at all helpful, saying everyone's journey is different. We have a lot to do to prepare, and I must be as strong as my husband is, but it's going to be so difficult. I know I'm not alone in facing this, and would love to hear how others have coped.

Thanks for this website. Marianne

Hi, Colleen, I'm Marianne, and have been a caregiver for my husband for a number of years now, at different levels. We both lost our spouses after long marriages (40 & 44 years), and met online, and have been married almost 14 years. My husband had a long time wound on his foot resulting from a jeep accident when in the Army, more than 50 years before. Wound care was a big part of our life from the beginning, but there also was healing, to be followed, perhaps a year later with recurrence.

About 3 years ago, it was discovered that he had a neuroendocrine tumor on his pancreas, and while it was not thought to be a present problem, it has necessitated a monthly shot, and routine scans. 6 months ago, a malignant tumor on the head of his pancreas was discovered, and the surgeon removed it stating he thought he got it all, and there were no other organs affected. We breathed a sigh of relief, of course, but chemo began to try to keep anything else from developing. Well, it has now metastasized to his liver, and yesterday the oncologist strongly suggested we end chemo, as it was not going to do anything to retard the spread, and only continue my husband's terrible side affects from the chemo.

I'm now in shock, my husband who has a very strong faith, is resolute that it's the will of God, while I'm angry that God is not protecting one of his strongest believers, and such a good man. I don't know what to expect as the doc wasn't at all helpful, saying everyone's journey is different. We have a lot to do to prepare, and I must be as strong as my husband is, but it's going to be so difficult. I know I'm not alone in facing this, and would love to hear how others have coped.

Thanks for this website. Marianne

Hello @flanagan1 I'm Scott and I'm glad you found Mayo Connect and this caregiver portion of the community. I was my wife's caregiver during her 14+ year war with brain cancer and am sorry to read of your husband's health. I know each patient's path is unique, their disease unique to them, as is each caregiver's journey. I offer my sympathy and will talk a bit about what we learned and experienced hoping it might help. Please ask any questions you may have!

My wife and I also found ourselves in the position of her doctors advising that further treatments would not result in any improvement to her quality of life. Throughout her war she always believed that quality of life was far more important to her than quantity. That said, it didn't make the journey at all an easy one, but it did provide us with a guide to help us absorb the tough decisions and times (especially times of waiting and uncertainty).

I wish I'd have discovered why some folks get cancer and others don't, but that remains one of the mysteries of life for all of us. While it is very uncomfortable to think about and talk about, one of the most important things my wife and I did while she was still mentally able was get our estate/wills etc. in order. We also made sure our POA, advance directives, and MPOA were in order and added our adult children to her HIPPA approval forms so they could also speak directly with her doctors. She also gave a number of her favorite possessions to family and friends so she could explain why they were important to her, wrote down her desires for her remains, and designed the celebration of life she wanted. Down the road, knowing these were my wife's decisions was a huge help and lifted a burden from many.

I wish you Strength, Courage, & Peace

Hello. My husband has been fighting/managing a chronic illness for 7 or so years now. He has lived longer than most who have his rare disease. How do you all manage being your own person with being there for your loved one? suggestions? I endeavor to be grateful and to live in each day and not focus on what is down the road, emotionally, that is. There is so much uncertainty and then with the pandemic on top, we are not able to see our kids or grandkids in person much. Thank goodness for technology though. Sometimes I feel alone in this situation.....Also, I am sad to see my partners' health decline, to watch the person I love so much being so challenged. I am grateful for the life we have had and we still have and want to make it the best I can.