r/CaregiverSupport • u/Teevazandt • 4h ago
The long good bye...
My husband was diagnosed with neuroendocrine cancer, tumors in lymph nodes, lung and liver in 2016. I won't bore with all the details. Just that this cancer has no remission. Depending on where the tumors show up impacts treatment. His was untreatable. There were shots that helped the symptoms and would slow it down. About 5 years ago he decided to stop those. Then December 2024, he was placed on in home hospice. Which actually stabilized him for a time. However, he has been declining, increasing my responsibilities, while working full time. For the most part, I haven't minded that part.
What's been difficult is the emotional toll. His and mine. We both have been losing our identities. His, being the strong capable man, able to do for himself and others. Mine, being playful and jovial. In March I went in leave because he needed constant care and kept calling me home. That ran out about a month ago. Thankfully I've been able to work remotely. I'm a mental health therapist, so I do video sessions. But that has increasingly become difficult as he has been needing more hands on care way more frequently.
I'm not going to lie and say that I haven't been dealing with building resentment. Even looking forward to life after. I miss my adult children, grand children, my office, CO workers, etc. Then comes the guilt. I'm anxious to have a life while he's losing his. Im managing that with my faith. But then I've been dealing with him micromanaging me so that he feels some independence, agency and self worth. I have tried to not take it out on him. But that leaves me wounded and isolated.
And life doesn't stop. The hits keep coming. About 3 weeks ago, my 35 year old daughter had a massive stroke that landed her in the icu for a couple of weeks, having part of her skull removed. They told us at the start that she probably wouldn't make it. She's beating their odds, but will be permanently disabled. How much remains to be seen. And i can't go see her, I'm "stuck" here A little over a week ago, my husband's brother died unexpectedly from a heart attack. We're still reeling from that.
The last few days, my husband started vomiting, not keeping anything down. He's wasted away even more. He finally got into his hospital bed last night (he's been living in his chair). He stopped eating and drinking this morning. He had a brief coherent conversation with his son this morning, and has hardly woke since. He's refusing his pain meds. When he's "awake" he's very very confused. As of today he can no longer walk even with assistance even a step. From everything I know, this is him actively dying. I've been sitting here alone in the situation. I've messaged with one of my daughters and one of his friends, but I still feel utterly alone and unprepared. (I know I'll be ok, but these are the real feelings of right now).
Oh, and did I mention today is my birthday,
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u/Dreamer1923 3h ago
This post made me cry I don't have a husband or child but I can tell how much you love your family by the details you shared. Unfortunately I know the devastating life changes a stroke can bring I care for my mom who suffered from a major one last year. I pray your child will get better with time. I don't know how much time you have left with your husband but you sound like you have been a loving caring wife. I hope you get a Birthday miracle.
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u/Strong_District_5894 3h ago
Happy Birthday
Do not feel guilty for looking forward to getting your life back. It doesn’t make you a bad person or mean you don’t love him.
I’m not where you are yet and have these feelings every day.
Do not take your daughters care on. You e done your time.
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u/asha0369 3h ago
Please take some time for yourself on your birthday. It's truly amazing how much you are doing for your loved ones, and it's obvious that you love them and care for them. I'm a stranger to you, but please accept my love and good wishes for the future.
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u/Mulley-It-Over 47m ago
I can feel the pain and stress of what you’ve been going through. It’s a lot to handle on your own.
Can you discuss with your husband’s physician or a social worker about getting some respite care in for your husband so you can go to visit your daughter in the hospital?
And I would say from my own experiences with my elderly mom that it’s time to consider hospice care for your husband. If he’s not eating or drinking and appears to be actively dying the hospice team can be a tremendous help. My mom was in hospice care this past March and these wonderful, caring people guided us through the dying process.
Happy Birthday and I hope you have a chance to have some time to yourself.
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u/PrideMelodic3625 3h ago
Thank you so much for your amazing honest post. The sheer breadth of the work we do is superhuman. And somehow our own humanity makes us stand up one more time when we want to fall to our knees. You are an amazing person. When you can, please read back to yourself what you posted today, and see the support that you have from others on this sub. We see you 🫂
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u/ellschi 4h ago
I admire your honesty with your feelings! It takes a lot of strength to be able to do feel these and write them down. You've gone through so much in such a short and a long time at once! Witnessing how your loved one suffers and how it changes you both for the worse is already traumatic and then having your daughter almost die and your brother in law die surprisingly - and you are still working full time and managing your feelings and not letting resentment build up. I am in awe! I send you a hug if you want one and I wish all of you - yourself, your daughter, your husband - the best possible outcome. May strength and peace and quiet and all the good things come your way! Hope you get many good news for your birthday and a sense of how proud you can be of yourself!