This is a bit of a rant. I just need to vent before I blow a fuse and cut all ties with my father. I know I am wallowing in self pity but I am just so tired.
My parents live in Arizona and I live in North Carolina. My mom has terminal stomach cancer for which she completely declined treatment. No surgery, no chemo. She stopped getting out of bed 3 weeks ago. I was going to come for a one week stay in August anyways but once she stopped getting up my father told me to come right away. My brother lives 2 min away from my parents. Once I arrived mom started throwing up blood. We thought she might pass any moment so dad and my brother started funeral arrangements. They want to do everything in the house as much as possible so I was told that after she passes and people come I am supposed to feed visitors and serve them tea. I was surprised and thought it was weird - they should just hire someone since everyone has significant means. I was like should I not be welcoming people and grieving - and my brother said - you think you have time to sit? You will need to hustle and serve guests. I did not say anything but I was becoming quite annoyed so I told them to plan everything and that I don’t want to talk about funeral anymore. It’s too hard to care for her and think of funeral at the same time.
It has been 2 weeks now that I am her primary caregiver.
She throws up every 2 hours (or at least tries) and I basically have been sleeping in 1 hour increments for a total of 4-5 hours a day for the past 2 weeks. I sleep on the sofa outside of her bedroom. Not because anyone made me but because I am afraid she will need me and I won’t hear her. My dad is deaf so he won’t hear her even if she screams for him.
My parents have someone who comes to cook and clean so my role is to sit with her and help her when she needs anything. I hold her while she heaves and pukes, clean up after she throws up, change her sheets, wash her, take her to bathroom, hold her while she cries and begs to die. She is extremely restless and not in peace. She thought if she foregone all treatment death would come fast. Painkillers help but they don’t help with nausea. She has been like this for 2 weeks in the pre-active stage of dying and from what I read it can last like that for a while more.
In the meantime I missed my son’s birthday and my kids cry for me every night. My husband is very supportive but he feels that I am being mistreated and thinks I need to come home. Oh and I got diagnosed with ulcer right before I left but could not start treatment because I can’t leave the house and see a doctor... so he is worried that I will get sicker if I continue as I do. My father and brother know about it too but so far 0 reaction from them other than too bad. That’s how my mom’s cancer started - with an ulcer.
I decided I want to go back to my family and my job (where I took unpaid leave) he was surprised but ok with it. I told him they need to find 2 nurses one for day time and one for night time to care for mom. He said they can handle it within the family. No need to invite strangers into the house.
He does not understand how difficult it is/was for me. I have not been outside for 2 weeks now. He does not seem to notice or care. Today as I was running around changing moms sheets after another puke accident my dad walks in and says I need to talk to you. I say “not now, busy”. I was very annoyed. I have not slept at all last night since mom was heaving and trying to throw up all night long. I have not eaten. He knew that. I ask him later what did he want and he said “did you check mom’s clothing for funeral?” I tell him I did not and I will not and I don’t care about funeral, I am too busy taking care of mom while she is alive. He yelled at me that I am being disrespectful and that he is tired of my snappy attitude and I should pack up and leave. Then he called his sister to come and look after mom. How screwed up is that?
Friends and other family cook and serve. The mourners mourn. It's a very good system.
I told my mom that I am leaving on the 21st and she said of course my children need me. I just need to make it the next 3 days but it feels like eternity.
Can't trust myself to say anything more. Just - go home, with your head held high. Give your mother a kiss before you go.
I am glad you got Hospice on board. I was going to suggest Gravol suppositories if nothing else to help with the nausea.
If at all possible hire caterers for the funeral tea. Do it behind Dad's back if need be. There is no reason at all for your to do the work. When you fly back for the funeral it will be with your family and they will need your attention, not plates of sandwiches. It does not have to be fancy catering, for David's funeral, the Church ladies did the tea. It was fancy sandwiches, homemade cookies and squares. Cost us $100. We have 300 at the funeral.
Back at the house I had crackers, cheese slices, sliced meat, condiments and buns. All from Costco. We also have wine and beer. It was only family and close friends, so people knew to help themselves, there was no serving anyone.
Worse things could happen if you do not go home.
I am so sorry that at this time of your life, family on both sides are terminally ill.
It was a good thing that you were there for your mom, and did all that you could do.
Godspeed, and traveling mercies.....
You do not deserve to think because crushing sleep deprivation and powerful familial issues mean you're ignorant or not up to this enormous task you shouldered. Some people may say it's "easier to deal with fatigue" if the caregiver chose it. While that may be true for a few, I'll wager it's not true for the vast majority. Fatigue is one thing; body- and soul-crushing exhaustion is another.
You are amazing. YOU made a huge difference in your mother's life by ridding her of a horrible dying process and ensuring her final journey will be in peace and comfort.
If you ever feel like you don't make a difference in the world, look yourself in the mirror and say, "Yes. Yes, I do."
What sort of time line for death did the doctors give?
Is mom on hospice? Why isn't she getting meds for nausea?
I would not leave my family and kids indefinitely, especially when you're being treated this way. I would tell your dad that you need to get back to your primary responsibility, which is caring for your kids. Home health care needs to be hired. The discharge team at the hospital where mom was treated should have been able to help with that. They may be a good source of information, both for a hospice recommendation and for a home health care agency.
I'm so sorry that your mom is so ill. Get hospice on board right away.
My dad has traits that I would never choose in my own husband but he does love his family. (Actually my husband is the calmest, sweetest person in the world. I am the one who can be a bully in our relationship. Your comment about how I am a little bit like my father was spot on as well.)
My Dad raised his 5 siblings, made sure everyone one got college education, helped out dozens of cousins find their way and did absolutely everything for my brother and I. My dad is as old school as they come. He did it all because mom was in the background helping him. When it comes to living alone my dad is as helpless as can be. I taught him how to work microwave this week.
I have not lived with my parents since I left for college. Though we visit often and spend all family vacations together I have forgotten how difficult he can be.
So yesterday I took charge of my mom’s sickness and I will manage it remotely from NC until the end. My dad feels incapacitated because I took the reins but I explained yesterday that he needs to focus on being with mom and not freak out over 5 zillion other details. He feels also very guilty that he did not realize the need for hospice support earlier. In his head he was doing what he promised her. We all (mom, dad, my brother and I) had a heart to heart yesterday and I explained how plans need to be adjusted in order to make mom’s last days comfortable. My mom and dad are still adamant about handling care within family for the night time and day time needs (bring water, take her to pee, etc) but at least we have someone coming twice a day to do all the meds.
I am still scared to what it will be like once Mom is gone and how and if we will stay close together. We never discussed our fight but we politely offer each other food in our ways to show that we still care. He still was a bit of a jerk yesterday to my brother saying that it’s his fault things got so bad care wise (huge eye roll) so like you said, somethings can’t be changed. In a way it was effective cause my brother offered to watch mom over night and I got 5 hours of sleep straight. I woke up feeling like I overslept.
thanks again for your post and please know that I took your advice to heart. Thank you for recognizing our screwed up family dynamics and that after all we still love each other.