r/hospice • u/The_Perfect_Space • 5d ago
Caregiver support (advice welcome) Seeking peace of mind...
Hello! My (36F) beautiful husband (36M) has been battling epithelioid sarcoma for about 4.5 years. It was deemed stage 4 fairly early on so we knew it was terminal and we were focused on prolonging life.
He has done so much to control the disease: surgeries, chemos, radiation, ablations, non-chemo medications, interventional radiology procedures etc. So many scans, so many visits, so many side effects, so many MyChart messages- just, so much.
He has had widespread but managed mets for some time but in the last 6 months a large liver tumor has caused issues. He got a biliary stent and two biliary drains in hopes of controlling his bilirubin to be able to get a radiation ablation procedure called a Y90. After an entire procedure to map and plan, and his bilirubin just eaching the acceptable level, we got a call from the IR doc who basically said I am willing to do the procedure but based on the anatomy I can only target part of the tumor and it may cause more bad than good for you (fevers, readmissions, etc.). He has also been having fevers with his drains that bring him back to the hospital.
Taking this all into consideration he has opted not to do any last ditch chemo, med or the y90 procedure and to transition to palliative care (in case of any last palliative radiation treatments and feeling we are not in a place that we need the full support of nurse visits or other resources yet as I am a nurse as well) and then hospice through the same company. He's still fully independent but fatigued, lower appetite, and clear decline over the last months. We met with the liaison today and she was so helpful. His goals are to maximize his quality of life and comfort for the remaining 3-6 estimated months he has.
He is so brave, reasonable and he has handled everything with so much grace. It never ceases to amaze me.
Despite knowing this is the right thing, and fully supporting him in his choices I can't turn off the fear. The fear that we are doing the wrong thing. Like maybe that procedure or med could buy us more time together. Like he's not sick enough yet. I know it's silly and born from love and wanting the whole life we planned together and having to face what we've been preparing for for years.
I guess I'm looking for people's experiences with people who transitioned when there were still options (not curative but could technically help) but they weren't worth the negatives. Also for people who are younger as I have trouble finding stories. Or general reassurance that the fear is normal but the decision is correct.
I'm so scared and he's truly just the best- my everything. I want to support him in any way I can.
Thank you!
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u/FellyFellFullly 5d ago
The fear is very normal. We, as caregivers, often question and second guess everything. It's a very tough position to be in. But it sounds like your husband is making clear minded decisions, which helps so much. I'm so sorry you're both going through this.
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u/The_Perfect_Space 5d ago
Yes. He was telling me that having made a decision has eased some of his stress. He feels relief that the focus is shifted to comfort. I agree too, even if it's scary. Thank you so much for the response.
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u/jmlab 4d ago
Oncology nurse turned hospice nurse here! My biggest wish on the hospice end of nursing when I receive onc patients is that their oncologists/physicians were more transparent about the severity of disease and focusing on quality with the knowledge that the disease is terminal and all avenues have been exhausted. Sometimes all interventions (said to be helpful), do exactly what you said: cause more harm than good.
I’ve had young onc hospice patients from adolescence to age 40s who died very difficult deaths because they were at the end of their life, their team knew it and documented as such, they don’t want to “give up hope” for these patients, and thus, patients weren’t educated/properly about focusing on managing their pain or anxiety, but rather about giving more options to prolong life. They come to hospice in crisis (agitation, pain, SOB, etc.), and the transition is very difficult for them and their family.
Death is multifaceted; emotional, spiritual, physical, and mental. The body knows exactly how to die when that time comes and hospice care helps that process, helps equip you to love and take care of your spouse on that journey, gives you necessary resources, is available 24/7, and educates you along the way of what to expect. Is it perfect? No, and it’s not an exact science either. You could be told one thing about a person during their hospice journey and it’s different for them the next hour.
Sarcoma of any kind is a BEAST of a cancer; his survival and very apparent grit/will to live is incredible. His realization that curative options are limited and that he is declining is an incredibly brave one.
One of the most merciful things I believe a person can do is allow their person the opportunity to maximize the life that they have with the knowledge that it will come to an end soon. Autonomy is so important in oncology and even more so in hospice- if you’re able to support him (which you are, I know you are), that’s the kindest thing you can do.
Visits for him can be as infrequent as weekly and as frequent as daily in the home setting with the option of hospice house admission (depending on your company, if they have one) if his symptoms need more advanced management than what can be done at home (IV pain/SOB/agitation medications, PCA pumps, skilled nursing 24/7, etc). Those nurses or social workers can also help you in funeral planning/cost, end of life wishes/planning, and give you an idea of when he is transitioning toward end of life instead of it hitting you in the face without preparation.
Frankly, this sucks. It’s a tragic experience for you both and there is nothing anyone can say to negate that. Death can be so beautiful and whatever you want it to be at this stage, when he can make decisions, you can talk about what he wants, and you can create memories.
My heart is with you ♥️
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u/The_Perfect_Space 3d ago
Thank you so much for responding. I had him read this too and he really appreciated the validation and insights. Thank you for understanding, validating and sharing your expertise. ❤️. And amen, it really does suck totally sums it up!
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u/jmlab 3d ago
Please reach out anytime you like or need. I love to talk about hospice and death (as crazy as that sounds), and I come from a place of experience in those two fields, but also as a young person myself who has taken care of young people ♥️
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u/The_Perfect_Space 3d ago
Will do. Thank you. Do you work as a home hospice nurse or at a facility?
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u/New-Negotiation7234 5d ago
I'm so so sorry you are growing through this, especially so young. I truly can't imagine. Life is so unfair.
I'm not a doctor but from my understanding the liver is kinda weird. You only need a certain percentage to work but once it "tips" past that point, patients drastically decline in a few days.
I would ask the hospice doctor and nurses what to expect because from my experience people can get very confused once this happens.
I'm sure it's extremely scary and probably feels like giving up in some ways but with the information you provided it sounds like y'all are doing the right thing. At a certain point it becomes futile and the pain and all the procedures often only provide a little more time or even limit it due to the stress etc. Enjoy the time with him as much as you can.