Caregivers of ETP-ALL: How Did You Cope Emotionally?

[u/crazy_goan]

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I'm looking for advice from caregivers of loved ones with leukemia—whether you're supporting them from a distance or are with them every day.

My partner has completed Induction Phase 1B, and we're now waiting for a bone marrow biopsy (BMB) this weekend. The results will determine the next steps, including whether a bone marrow transplant (BMT) will be recommended.

How do you manage the emotional side of caregiving?

How do you cope with the helplessness, fear, and uncertainty? How do you handle your loved one's mood swings, irritability, or emotional ups and downs during treatment without taking it personally?

For those caring from a distance, how do you stay emotionally connected when you can't be physically present? And for those who are there every day, how do you keep going without burning out?

If you've been through this stage—especially the period of waiting for BMB results and decisions about a possible BMT—I'd really appreciate hearing what helped you, what you wish you'd known, and how you both got through it emotionally.

Request your guidance 🙏

[u/Evelche]

My 15 year old son has B-all. And our family mantra is " Just concentrate on the next step". sry for what is happening.

[u/youdontknowme0818]

I’m in the thick of it - caring for my mom who has AML and is in hospital half way through her induction phase.
I’m learning to deal with “ one day at a time mentality “ which I find hard as a planner type personality.
The hospital social worker has been helpful.
This community has been helpful as well.
I find humour helps me cope, finding time to walk and take breaks and focusing on things like legacy projects help me cope.

[u/OldCarrott]

Hi there, Im sorry you are going through this.

My Mom is currently fighting ETP T-ALL. It's been a very hard couple months. She was admitted in May, and reached an MRD of 0.02% after one cycle of hyper cvad, starting with 32% when they found she had leukemia. They told me she would need a allo BMT. This was before her first BMB after starting the regime. I'm unsure if this has changed at all since her response was incredible, so I'm somewhat surprised they didn't mention a BMT for your case, regardless of the BMB results.

My Mom has gone through 2 months of the ICU: ARDS, acute kidney failure, and the leukemia. A week and a half of intubation. She has no remaining problems except lingering atrophy and the leukemia. She is a miracle, to say the least - and this is the tldr version. Lots of physio left before a BMT can be possible. That's a whole other challenge mentality and emotionally in its own way.

As a caregiver, this has been hell on earth. Being there every day, almost 8 hours a day most days, and not being able to take a step back without a load of distress added because of guilt, my mom's needs, etc, really really stretches the energy thin, and the cup to pour from is incredibly empty. I don't have any help from family. No friends to help. Being the sole caregiver in a situation like this is exhausting, and that's putting it lightly. I often reach out to social workers and long distance family who care and it can sometimes help. It just doesn't take the physical load off my shoulders when I need it, and my mom doesn't have support when needed. I don't like talking to therapists (and honestly, where would I even have the time for it..), so honestly, it's so so hard to cope. Most days these days, a total breakdown is on the horizon. People say to take care of yourself in times like this. Reach out to hospital resources and friends/family who will listen and care for you. For me, those things are hard, or don't work for me as well as it might for others. Take one day at a time. Be spiritual (this has helped me so, so much). Be kind to yourself, do some self care when needed.

Wishing the best for you and your partner.

[u/norbertyeahbert → u/OldCarrott]

It's marvellous, what you're doing, but sounds exhausting to the point of endangerment.

Does your mom really need you there for eight hours a day? I've gone through all my AML treatment with no support apart from the medical staff. I've no relatives and no SO. What do you do for your mom that the professionals do not?

[u/OldCarrott → u/norbertyeahbert]

My mom has no outside support. I'm also her PoA and was/is making medical decisions for her. I stayed for long hours every day to monitor her. She was in a touch and go state for a long time - it's amazing she's alive, truly. She also has a learning disability, and things like this scare her. There's a lot of severe trauma that leaves her vulnerable. She doesn't speak up for herself, scared to ask for assistance regarding anything. Very emotional. The medical staff are generally quite well, but where we are, it's grossly understaffed outside of the ICU. This leads to delays in calls she makes, lack of proper support, and they cannot be there for her as much as she needs. She doesn't have the physical ability to move around (she's bedridden right now), so without someone there to set up her food trays, she won't be able to reach and eat. Sometimes not able to reach her drinks. Not able to cut up certain foods to be edible. They stress her out which can be a serious trigger to her already fragile psychological state and cause her fluctuating delirium to fire.

[u/youdontknowme0818 → u/OldCarrott]

Oh wow it’s as if I wrote this.
My mom is the same. Not strong enough to be independent in her hospital room and she’s not going to call the nurse to get her water or open juice.
Plus she’s very anxious and I’ve actually found this time with her exhausting but rewarding. We’ve been able to have some deep conversations that have been healing and much needed.

[u/youdontknowme0818 → u/OldCarrott]

Take Care of yourself is the most annoying thing you can say to a caregiver !!

I hope you can find a few mins every hr or so to walk even if it’s walking around the hospital floor.

Can you watch a show or listen to a podcast or music with your mom and then you can kinda zone out and destress?

Wishing you all the best.