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?
I am home. I arrived arrived around lunchtime. My kids were ecstatic! I got so many hugs and kisses, probably 2 weeks worth. My son was freaking out that my plane would crash and my daughter worried that I myself would get sick so they were extremely relieved to have me back in one piece. I took a shower and crashed in bed shortly after. I woke up with daughter tucked in by my side. She has not napped in about 4 years and here she was snoring away. My hubby told me she did not sleep well while I was gone.
Mom was sad the day after I left but she is dealing better with it now. My aunts are taking turns watching her and she is quite stable and condition similar to what it was when I left.
I am going to stay put for the next couple of weeks and may be make a long weekend trip to see Mom again but I am not going to stay longer. I know she misses me so hopefully this will help.
thank you again everyone for being so supportive and for your advice, compassion and kindness. We are all strangers here but I felt like I was being supported by my closest friends. Thank you!!!
I had one thought when reading the part about your dad and brother planning the funeral early on. On the surface of it, it seems like a really strange, morbid thing to do, but it occurred to me that this might have been them trying to gain a sense of control in a situation they know instinctively they have no control over. They "can't" (in their own minds) take care of your mom, much less prevent her dying, so what's left? Plan the next thing: the funeral. It gives them something to think about, plan, organize, and control. In a strange way, it might give them comfort.
I hope now that things have progressed in more positive ways, they can leave that sit until the time is appropriate, and try to spend time with mom while she's still alive.
Bless you, you sound like one smart, strong, compassionate lady. Hope things are going as well as can be expected.
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."
Can't trust myself to say anything more. Just - go home, with your head held high. Give your mother a kiss before you go.
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.....
Just so you understand, you can do therapy while living your life and working.
I was in therapy while I was in Grad school and working and then after I graduated while working a stressful mental health job. It's not like life stops while you are in therapy.
Poor guy can’t catch a break though. While I am here with my mom his own mom is fighting brain cancer, stage 4 glioblastoma. She was diagnosed a year ago and my mom 6 months ago. I feel like we are between rock and hard place. He is handling it beautifully though. His mom is quite functional still and we already beat original prognosis of 12 months. She is like my 2nd mom, so it’s double hard cause I am losing 2 moms at the same time.
So yeah therapy is in the works, it will probably be a long process and I do want to go back to work and to regular routine. Thank you again for your support.
I could also never leave unless I knew mom is well taken care of. Now I can. She is not as restless as she used to be. She is more at peace and I can see that death is imminent. I have accepted her dying a long time ago. It was a process but I got there. But it was grinding at my soul how much she was suffering so now at least that is handled.
Thank you you again for your support. Honestly without all of you I would have croaked the last two days.
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.
Time to pass the broom to someone else. I know I get cast in this role from time to time and I feel like we could hire people to do what I do.
Free, cheap labor and nursing care--we don't stan dup for ourselves and I have never had one soul stick up for me over any kid of CG for any parent, yet.
Say your goodbyes to mom, hopefully get hospice more involved (and yes, they can administer something for the nausea!!!! Who told you they can't?) and go home to your own family and learn NOT carry this sick dynamic into your own little family.
I am going to be on a plane in less than 72 hours home bound. My kiddos are making a poster for the airport. There is lots of glitter on it and everywhere else in the kitchen (according to hubs). I notified law firm that I will be back early October and my hubby made me an appointment with a psychologist as well as booked me an entire day in the spa. I don’t know how I will handle sitting in the spa all day while Mom is dying but I guess this is where psychologist will be helpful.
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.
I think I would be comfortable in your situation with contracting the local Adult Protective Services, since continuing to permit your mother to go without comfort care appears to be reconcilable as abusive and patently cruel. You are obviously in an excellent position to make that call from a legal standpoint in addition to the obvious torment to your mother.
You have done a heroic job in impossible circumstances. The decisions being made within your parents’ household are inhumane.
If YOU will be more comfortable making the call, do it.
After reading almost every post published here in the last year, this is by far one of the worst I’ve read. Feel confident doing what can be done for your mother’s relief and your own.
The ultimate reason for my mom’s suffering is that she refuses care. She does not want to live. One of the reasons why she does not want to live is because she suffers. She suffers because she refuses care. It’s just so screwed up. After I called hospice I sat down with my mom to explain how palliative care works and that we are not trying to prolong her life here (necessarily) but to give her comfort until the death comes. Dying should not equal suffering.
My my dad was doing as per her wishes without recognizing that plans and promises must be adjusted. Now that we have hospice on board she is so much more comfortable.
Wanna know what she did yesterday after she realized she is no longer nauseated all the time? She refused to drink liquids. I ask her what happened, does something hurt? Her answer if I stop drinking I will die faster. How screwed up is that?
Once again 30 minutes with the hospice nurse who explained to her whether she drinks or not death won’t come faster, she will just have more discomfort and pain.
I swear sometimes I don’t know what my parents smokes in their youth to have such distorted views on dying. All of my grandparents passed away fast (stroke, heart attack, car accident) but then my mom cares for my aunt with breast cancer so she should know better.
Anyways, every day is a surprise with these two. Never boring. I am leaving in 3 days. Kids are counting down on the fridge. I can’t believe I missed their first day of school this year but bless my hubby he got them all ready on his own.
Seems they’ve got her in the ground already and that is bothersome but everyone handles things differently, so you and your dad aren’t seeing eye to eye as far as priorities. You need to be ok with that... I don’t know you have another choice. Get her comfortable and go. She’ll understand why, she’s been married to him. I think him having one of her feet in the grave is psychologically painful for you. Say your peace and go home. If your dad and the other family do not see your validity then you’ll resent them more and it’s going to get ikky before better. Death tears people apart and mostly due to greed. You don’t sound greedy, so why stay and see what’s next.
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.
When my mom had a stroke in 2013, I thought she was dying. She certainly looked like she was dying.
She lived for 4 1/2 years after that stroke.
Your dad sounds scared. Also, a bully who is ignorant and proud of it, but scared nonetheless.
Call a local hospice organization and get them to come out and evaluate mom.
Of course there's a cure for nausea.
Your family sounds terribly...something. None of the words I want to use are polite. Just get hospice for her. She is suffering needlessly because of your dads stubbornness and ignorance.
I blew a fuse and now am not talking to my father. He basically told me that this is the way I am so take it or leave it. For now he has no energy to deal with my attitude so he will wait until mom passes away and then we will deal. Like what kind of shitty veiled threat is that? You want to be alone in your old age because you alienated your children then do so.
The worst part I was always very close to my father. He put me through college and law school, helped us with our first house. He loves my children and husband but he has very authoritarian attitude. The moment I cross him he starts pursing his lips and making an angry face and telling me to be quiet. I am 37 year old well respected lawyer. I don’t do bully. I don’t do quiet. My mom was always the glue that held us all together when dad and I argued in the past and now with her almost gone I don’t know what will happen with my dad and I. He bullied her relentlessly but she loved him so she took it.
When i mean authoritarian is that when my dad says jump his sisters and brothers say how high. My brother does not dare to cross him. Nobody does.
My brother felt bad for me and he watched mom while I got 40 min of sleep. Then he had to go do something for his business... sigh
Since my parents decided not to follow doctors all they got is prescription for painkillers. I told dad that she needs medication for nausea and he said there is no cure so why bother and mom agrees. I don’t understand them.
They never sought palliative care or hospice. Mom said she wants to die at home.
when my time comes I am getting into hospice. Family is welcome to visit but not full care like this. There is no way I will ask my family to take care of me like this. It is destructive to the entire family.
I miss my kids so much that I can barely hold it together when we FaceTime. Mom slept entire day today. I am worried she is entering active stage of dying. My flight is booked for Wednesday morning. Now I am torn whether I should stay or go... it will have to be last minute decision...
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.
So sorry to hear you are going through all that! My mom says she wishes she were gone too and it is really hard and she doesn' teven have cancer, just some type of cognitive decline, questionable Parkinson's. My sister cares for her 24/7 and has for nine months. I am little help as cannot do what my sister is doing. I cannot go without sleep more than one night or my brain goes off and I know that so won't even do that. I also cannot lift my mom the way she wants to be lifted that my sister has been doing.
Now my sister has skin cancer, swollen painful ankles and feet, very over weight, and very tired and not even being appreciated my mom for what she is doing and has been doing. She also helped with dad when he had cancer and has been gone almost thirteen years now. All this is terribly unfair for her.
I haven't got the answer, but for me, I could not leave my husband and daughter for very long. What is happening is not fair for my sister I know. I am not able to do my share helping mom but I cannot help mom the way she wants to be helped. I as still trying to find a way to help them both though as I don't want to give up. I pray and ask lots of questions searching for answers.
Please take care of your self and sending prayers and peaceful positive thoughts to you.
Your poor sister!!! Why don't the two of you get together and decide how your mother will be taken care of from now on? YOUR SISTER HAS DONE ENOUGH. She has health problems. Time to put your mother in a facility.
Figure this out now. What happens if your sister becomes hospitalized?