Hello. I’m glad I found this sub, I could use some advice or other points of view.

My dad was diagnosed with stage 4 throat cancer 5 years ago. After chemo and radiation, he was cancer free for 5 years. (The radiation on his throat was really tough, he tolerated chemo well. ) Cancer returned in his lung this spring. Chemo really hit him hard this time around. Terrible nausea, fatigued and out of breath. He’s 67. He’s always been positive and wants to live.

My 71 year old mom is his caretaker. On top of that, she works part time from home, watches my niece (2.5) and nephew (4months) 20-30 hours a week and takes care of house. She rarely accepts any help or gets upset if you just do something helpful.

Their relationship has always had tension. Mom is more critical/withholding, while my dad is more emotional/sensitive. He’s been on antidepressants for 20 years, my mom has untreated anxiety issues. I love them both, but have a closer relationship with my dad. He’s been a constant support, especially with my own depression and anxiety. I have an older sister, we have our own issues but are able to put them aside, to help our parents. She takes after my mom and expressed she’s mad at my dad because he wasn’t eating and ‘every time she tries to help it bites her in the ass’.

The recent chemo worked to keep cancer at bay for now, but more will be needed in the future. Last week he was very nauseous, fatigued and short of breath, last chemo treatment was a month ago. He was complaining every tasted bad, ate little to nothing and slept a lot. Because of some insurance/doctor issue, he’s been off one of his antidepressants for a week. I gave him a daily pep talk, he wanted to eat, but felt something was just not right. I suggested mom call his doctor. I’m not sure if she did or not. She kept saying his last blood work came back fine and it was all mental, that he’s doing this to himself, telling him this frequently. Saturday morning she finally had enough and we took him to the ER. When my dad was talking to the doctor, she was rolling her eyes and chiming in and telling the doctor he just needs a psych consult. I had to step out of the room because of the tension. In the hallway, the doctor told me her concerns about their situation and that my mom was burnt out, I agreed. I finally was able to convince her to go home and nap.

My dads tests results came back, his hemoglobin and white cells were extremely low and needed a blood transfusion. Ultimately he needed 4 units of blood. They also found a few stomach ulcers. Both the ER and hospitalist/inpatient doctor highly recommended palliative care for extra support, or at least family therapy. My mom doesn’t see the need and was upset it was suggested. My dad was in favor of it. After 4 days in the hospital, he’s home and feeling kind of better. He understands he needs to eat. My mom was upset he only ate 1/2 of the 3 egg omelet she made. Her getting upset makes my dad feel guilty. They rarely speak or spend time together.

I bought up the suggestion of palliative care to her yesterday, explaining what services/support it can offer. That just upset her and she exasperated “fine, if you and your dad think it would help, just do it, but I don’t see the need.” I know she stressed, frustrated and growing resentful. All understandable given her position. My sister seems annoyed by all of this and thinks my dad just needs to try harder. (I agree with that, but know getting upset with someone isn’t a great motivator.)

I left a message with the oncology social worker about palliative care yesterday.

I’m frustrated and not sure what my place in my family or caregiving is. I want my dad to get the care he needs (medically and emotionally) but me getting involved only seems to cause more friction with my mom and sister. I don’t think she realizes it, but it seems slightly abusive. I’m really concerned about both of them.

Update (6/12/19) Dad is still loosing weight, having difficult time eating and has been vomiting/diarrhea for the past 4 days. He’s very anxious and feels he’s disappointing us by not eating more. When I saw him yesterday, he admitted to me that living with my mom is causing a lot of stress and he tries not to tell her too much because she’ll get upset. I asked him to share a few things with my mom while I was there and she wouldn’t have it, “you’ve said that before and I’m done talking in circles about it.”

He was planning on going back to his part time job today, because he doesn’t want to upset my mom. Yet he didn’t want to sit outside with me yesterday because he felt too weak to walkout there (< 20ft away). I asked him how he plans to go to work if he can’t make it outside. He’s afraid to do a lot of things because it would upset my mom and told me “you should hear what she says when no one is around.” I just sat with him, hoping to help him calm down. I tried to show him some breathing exercises, tried to distract him with stories or things he’s interested in, showed him photos or funny videos, things to look forward to, etc. Worked for a little while, but he’d bring the convo back to his situation quickly. I find medication videos helpful for my anxiety, so I suggested we listen to a short one, he refused to try it, saying “I just enjoy talking with you, I can’t talk like this to your mom or sister.” I appreciate and understand why, but it’s frustrating. I can’t be his only emotional support system, especially when he tells me about their marriage or how my mom and sister treat him. I’ve explained it puts me in an awkward position and makes me upset with mom and sister. That doesn’t help anything.

Anyway, While I was visiting, I reviewed his meds and gained access to his online chart/health info. My mom is trying to stay organized, has print outs to track meds, food, vitals and notes. Good!!However, She keeps his meds hidden (won’t tell us where they are), dad isn’t aware of what he’s taking and I found some discrepancies in his meds from what my mom has been saying. She’s still been giving him low dose aspirin while he’s recovering from stomach ulcers. (She was not present to hear the doctor say not to, as she just waited in the car outside when he was being discharged and dad forgot his folder with discharge papers and info from dietitian.) She did call, hospital offered to print copies, but she decided they weren’t important. I get this is a lot. For anyone.

He saw his primary care doc yesterday for follow up care for ulcers and help with eating. He was really hoping for an appetite stimulate, feeding tube or just to be admitted again. Doctor wanted blood work and took a stool sample for testing. While leaving the dr’s office, he got weak, vomited and had diarrhea, they sent him to the ER. He was sent home after blood work came back normal (hemoglobin was at 9, which seems low to me?) and took another stool sample.

After I spoke with the social worker last week, I explained how they can help. My mom reached out to her (so did my dad, without either one of them aware they each called). But he’s got an appointment with a palliative care doctor next week! So that’s good news. I’ve also been in contact with a local non profit that offers counseling to cancer patients/families.

In addition to all this, it’s really hard for me to see my dad. The chemo transformed him into a sick old man. He doesn’t look like the dad I remember from even a year ago. When I was like young he worked in this loft above retail space. It was 2 flights of stairs, no landings or turns, just straight stairs. It seemed like he flew up those stairs. He’d run up and down them so quick, it seemed like he was flying. I tried so hard to keep up with him. Even now, 30 years later, I rush up stairs as if I’m Indiana Jones fleeing from a crumbling temple.

I have a good support system but when I do socialize, I don’t want to discuss it much. Which is hard, because a lot of people ask. My dads passion in life has been sailing, mostly racing. He was a sail maker, coach, and very involved with it for 50 years. We didn’t have a boat and I didn’t become interested in it until I was 20. He showed me the basics and told me to go sail with other people and find my own way. So I did. I didn’t tell people I was his daughter until they figured it out. I’ve made great friends and have adult relationships with my parents friends that knew me as a kid. This sounds awful, because I appreciate the concern and care, but it’s hard to have several people asking about him when I’m in my ‘happy place’ and trying to relax. It’s hard to keep retelling the updates or stories.

Ok, I should stop. There’s more I could go on about but this is long enough.