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So much worse than I expected
beehime
17 Posts

I’m sorry for never answering people’s comments, but to all those who have been replying to my posts and following my mom’s story, I am very grateful. I’m also sorry for always bringing bad news. I so so wish I could bring good ones.

TLDR: How can I help my dying mom and my emotionally suffering caretaker dad in the final steps of terminal lung cancer?

I finally made it home after a trip across the world, only to break down completely when I saw my mom in person. I feel bad because I might have caused her more worries than anything, but after 30ish hours awake all I could do as soon as I saw her was repeating that I was there now, holding her hands and crying. Her state is SO much worse than I expected. My dad later revealed that she will probably not make it to the holidays.

She wants to die at home, surrounded by people she knows, so my dad and I will look into having at-home help and the rest we will take care of. The thing is, I actually have no idea what to do. She told me she was scared, that she was sorry and didn’t want to leave, and all I could do was cry and tell her I was there. I feel so powerless right now.

Many of you told me just being there is already good, and yes, I’m so so glad I made it in time (although I’m also really mad at myself for not coming earlier), but it feels so insignificant that I don’t know what to do with myself and I’m afraid I’ll make a mistake or say something I shouldn’t say and just make everything.

i guess I just need to vent. I’m sorry.

Edit: I forgot to add that once my mom fell asleep, my dad and I talked about a few things. We talked about what actually happened to my mom, including details that my mom had not wanted to let him tell me before. We talked about cancer, about my mom’s wish to die at home, about how angry both of us are that first Covid, then cancer decided to strike just when both my parents had finally managed to retire and were ready to start the projects they had planned to do to enjoy the rest of their lives. About how freaking unfair all of this is. About life and death, and what happens after death. About the future, once my mom will be gone, too. It’s really really hard on him and I’m also struggling to find ways to support him in all of that. While everything just slammed into me really quick, he had to see her slowly deteriorate to her current state over the course of a year. He is mad at himself for not forcing her to go see her doctor earlier, even though she didn’t want to. No matter how many times I tell him that he couldn’t actually know and it was my mom’s decision not to go, I know it’s not gonna help because I’m angry at myself for the exact same reason.

19 Replies
Brighty
7731 Posts

@beehime my heart breaks for you and your family. There isnt really anything you can do but be there which you are. Spend time you both your parents, and get some support for yourself too, in terms of a good friend, family member or social worker at the cancer center. Guilt is very often an occuring emotion …part of the caregiver process. Many caregivers feel guilty, helpless, like they are never doing enough. But all we can do is our best in the situation we are in. I felt wracked by guilt too. My fiance had symptoms months before he finally went to a doctor. I couldnt get him to go no matter how i tried. We cant force our loved ones to listen to us. I always think ‘what if….’ But those thoughts just dont serve any purpose. We can't change what happened. All we can do is focus on what is now. You mom is here now. Spend all the quality time you can with her. Make some wonderful memories to cherish. And please take care of yourself too. I know this is heartbreaking for you, so dont hesitate to reach out to others when you need to talk or cry, or vent. Im glad you are reaching out here. We get it,we've been there. We will support you through this terrible time.

beehime
17 Posts

@Brighty thank you for always answering with such wise words.
It’s so painful to see her in that state. If she is lying down with her upper body slightly upright, then she’s pretty ok (considering her state) although easy to get tired, but any other position results in her being barely able to breathe. She had to go to the hospital this morning and she choked several times just sitting at the table. It was terrifying. I thought she would die on the spot.

I’m lucky that, now that I am back in Canada, I have a very strong network of friends and family that I informed of the situation and who told me I can call them anytime. My boyfriend (who stayed in Japan) is also an angel and spent hours on the phone with me since I arrived and navigated my messy Japanese and non-sensical rambling. I also informed my colleagues and all of them were very supportive.

I managed not to cry in front of my mom this morning, but broke down as soon as she left with my dad.

At this point, my mom is not yet in actual physical pain, and I know she’s really really scared of dying, but I can’t help wishing it’ll be quick. Unless the palliative care has some way to reduce the mucus/choking, she has pretty much no quality of life left. On one hand, I wish I could spend months or years with her and build tons of new memories, but on the other hand it’s so painful to see her struggling to breathe and fight her panic. I feel like a monster for even thinking that, even though I know it’s a common thing from what I’ve read on the forum.

Brighty
7731 Posts

@beehime youre not a monster. I get you. When my fiance passed I was devastated buy it was also a relief. He suffered so much and when he was finally out of his misery I did feel a sense of relief. I felt dreadful for feeling like that but to watch him suffer day after day with no quality of life was most unbearable.

Brighty
7731 Posts

@beehime I'm also so glad you have your support network around you. That is crucial!!!!! My heart goes out to you. It's such a heartbreaking situation.

Mtlcity1969
41 Posts

@beehime Your message made me cry remembering my Mom and how similar our story was to what you are going through now. My Mom died 5 weeks after being diagnosed and things went down hill so quickly I could not wrap my head around it. 3 years later and it still feels like just yesterday. The hurt and loss never goes away but I am thankful I was there with her through her journey and on her last day… which happened to be my birthday. There is never a good day to lose your Mom. And Dad's are use to being our protectors so they will put on a brave face as much as possible. But, they are losing their entire day to day world. So being there for your Mom and your Dad is key, in any way possible. Even if that means just being present. It helps. But, seek out a grief consular or group for yourself as well… it made a world of difference for me. You need to take care of you in order to be there and to take care of them. Nothing will make this easy or less painful to endure but it will keep you strong enough not to crumble under the pressure. Like writing your thoughts and feelings on here releases some weight talking to others who are going through the same thing & a consular trained to to to help you see things in ways that you could not have done on your own will be empowering for you. My thoughts are with you… stay strong and take care of yourself.

@beehime please know as a Mother myself your Mum is not thinking about what you feel you missed. She is beyond grateful that you are there. Her heart will be full knowing you are close by And holding her hand. You are there now to share your love, care, support and memories. She will feel better knowing you are there for your Dad. Us Mum’s want to shield our children from sadness no matter how old they are. Please be kind to yourself and I hope your Mum’s Drs can make her comfortable. Lean on your support network and us here. Sending your much strength for the coming days ahead 💛

beehime
17 Posts

@Brighty @Mtlcity1969 @NickytheCanuck

Thank you for your replies. Reading them made (still makes, since I reread them when I feel like I’m breaking) me feel a little better.

As for the latest update, it was announced by the oncologist during the appointment that the cancer is now generalized. It has spread to the bones all over her body and even though they could have tried chemo, the doctor said it will probably make it worse because she is so weak, so my mom chose not to. She was doubting her decision during supper, but both my dad and I think that it might have actually killed her faster if she had done it.

Fortunately, my mother’s wish to die at home will be granted. Due to covid, we could have had only one person with her at all times if she stayed in the hospital, but now both my dad and I can be there with her together.

We have an appointment with a nurse on December 6th to see how we could clear her airways and make her more comfortable. I just hope she can make it until then. My uncle (my mom’s older brother) died of exactly the same cancer back in April and was in extreme pain once it spread to the bones, so I’m really really scared that her situation will change suddenly before the appointment.

I’m also trying to mediate / act as a buffer between my parents when it comes to meal times. My dad is trying so so hard to make my mom eat something, trying different types of baby foods, juices, etc. but I think the cancer might affect her sense of taste as she says most of them taste really bad. So, even though she is starving, she stops eating them after a drop of it. The only thing that seems to work fine is pineapple juice, but with all the choking she gets exhausted after drinking a quarter of a glass. My dad is trying to be patient, but is also understandably frustrated because his way of thinking is that if you are that hungry, you’d eat anything no matter the taste, as long as it’s food. Then my mom thinks he is angry at her and feels guilty. So, now my dad prepares the things, then go watch TV or clean around the house and I’m the one staying with her while she eats and drinks.

I’m giving her massages regularly as she says it helps her relax, and I talk about anything and everything as she likes listening to our voices. I’m glad I can make her feel a little better this way, but it also hurts so much when I see her struggle to breathe / being so scared and when I think about a future without her. For example, she loves kids, so I was really looking forward to seeing my mom interact with my future children, but that’s never going to happen now and it hurts so much to think about that.

@beehime can her oncologist connect you to a nutritionist and a pain specialist? When is her home nursing care starting? Steven has both home nursing and a pain management team and they are incredibly helpful. The nurse visits are down to once a week here as Steven improves after his surgery but they were coming daily when he first came home and brought us both much comfort. Incredibly supportive they will be such a help to you and your Dad in managing your Mum’s care. Our home nursing group has a specialist team that deals strictly with palliative care. They work with the Drs on pain management and more intensive nursing. Thankfully Steven doesn’t need that yet. I hope they are getting you all the help you’ll need in the coming days ahead 💛

beehime
17 Posts

@NickytheCanuck

Unfortunately, I have no idea if they can do that. My mom wants as little strangers around her as possible, so she apparently refused the Société du cancer’s help when it was offered, and with the next appointment only being in 12 days it might be difficult to get answers until then. Because of the one person only rule, I couldn’t be present at the appointment.

I will try to discuss it with my dad today though.

Brighty
7731 Posts

Hi @beehime im glad that our posts at least bring you a bit of comfort at this time. We've all been there or are still there so we understand how heartbreaking cancer can be for the patient and their loved ones. The cancer center should have a dietitian that can give your mom suggestions on what to eat…. Things like ensure or boost perhaps. Theres also a social worker at the cancer center. I found her so helpful. I spent much time and shed many tears in her office. I could have filled an ocean!! He or she can also connect you with the resources your mom needs. Is there any way to move the Dec 6th appointment up a bit? Sounds like you are bringing your mom so much comfort and some joy by being there, talking with her ,massaging her. That must mean the world to her. How is your dad coping? And you…do you have an outlet for yourself? Someone to talk to outside the situation. You mentioned you have a good support system. Can anyone take you out a bit , just to get your mind off things? Dont be shy to teach out to them. Are you still working on line, or taking time off? Some people find work asxa distraction and some find it difficult to focus. Do whatever you feel is best. Take care of you and your family. We are here and I'll be logging on throughout the day to check in.

JenG
40 Posts

Hey @beehime ,

I’m a caregiver for my mom who has lung cancer and she lives in Montreal. Your experience is happening much faster than ours, and its giving you very little time to process it all. That makes it tough.

Be easy on yourself. I agree with Brighty, guilt doesn’t help, though I know it’s hard to keep it at bay. I too wish for relief for my mom, but my best practice is to be here and care for her the best I can. Some days I’m better at it than others and that’s okay.

I agree about moving up the next appointment. Call and explain about the choking, the hospital trip, her weakness and her trouble getting comfortable. Palliative care should be involved yesterday and the CLSC has nurses and personal care attendants who can come to her home. There’s also a palliative care doctor who will visit.

Ask about oral morphine to see if that would help her breathing. Can your dad record these appointments on his phone? Big help and you can hear what’s going on. Or can you be streamed in via FaceTime,e or just on speakerphone?

You can be an advocate for your parents. I know it’s an emotional roller coaster for you and you’ll need outlets for that emotion (Breaks, time to just cry, a shoulder to cry on, friends to hug), but your parents also need someone to stand up for them and get your mom the care and comfort she so deserves.

Take care of yourself and each other,

jen

beehime
17 Posts

@Brighty @JenG

Unfortunately even Ensure is really difficult for her to swallow, she can barely get any down. However, she had the idea to try making our own baby food with fruit salads passed in the blender, so we will try a little bit of that today too. My dad is really focused on that goal at the moment.

For support, I’ve been talking a lot with my boyfriend during the night (I’m still jetlagged, so woke up at 1AM) and I’m texting my best friends here regularly. I’m a little reluctant to go too far for too long as I want to be there at all time when my mom is awake (I get really anxious even at the idea of not being there), but I’m planning on taking a walk later today in the neighborhood.

At the moment, I’m not able to focus on work at all, so I already updated my colleagues with the latest news and they said not to worry about it, we’ll move the grades for the current assignments to the next semester instead.

I’ll see if there’s any way to get the appointment moved up, and I think I’ll call the Société du cancer later today even though my parents are reluctant.

Linny
6 Posts

@beehime I am sad to read about you mother's cancer, and therefore the pain that you and your father are experiencing as well. You are doing your very best. Each of you. You're holding each other tightly, knowing that each day matters. Bless you.

beehime
17 Posts

@Brighty @NickytheCanuck @JenG @Mtlcity1969 @Linny @WestCoastSailor

Here is the latest update. I got a call back from the Société du cancer, who then gave me some resources. I called my CLSC to put pressure, and they finally called a few hours later. The nurse got our file on her desk yesterday, but couldn’t look at it until this morning. We are not sure if me leaving a message helped move my mom’s case up the priority list, but the nurse is coming Monday morning to do the care evaluation. When we mention IV fluids, she said that it might not be recommended in my mom’s case as it could cause other issues, so we have to wait for Monday.

However, in the mean time, we managed to get my mom suppository Tylenols for pain. She also requested popsicles, so we got some this morning. Fortunately, she is able to eat a little bit of that at a time if she goes slow, which seemed to cheer her up a bit (especially the fudge ones, as she loves chocolate). We also make her rince her mouth with warm salty water, which seems to help a tiny bit with the mucus and swallowing.

I watched a film with my dad in her room this afternoon just massaging her feet and holding her hand while she was half asleep. She’s getting more and more tired, but she can’t sleep half of the time, so we are checking up on her very often.

@beehime so great to hear your Mum is tolerating/enjoying the popsicles. It will be so helpful for you all to have the nurse visits soon to help with her care. Fingers crossed they are able to intervene to get some much need nutrients in her and that the Tylenol is providing some relief. Remember to keep your strength up. This time change is probably causing havoc with your sleep. Try to keep yourself rested 💛

Brighty
7731 Posts

So glad the nurse will be coming on Monday @beehime .!!!!! Happy to hear she is enjoying popsicles. !!! . You are taking such wonderful care of her!!! Thank you updating us. Please be in touch Monday and let us know how the visit went with the nurse. How are you coping? Are you taking some time for yourself?

JenG
40 Posts

@beehime

That’s great that you are getting more help sooner and I think you can take credit for that. Take all the wins you can!

Good thinking on the popsicles and the salt water rinse. Keep asking questions on this forum as there’s lots of helpful advice from those who have gone before us.

And enjoy these moments with your mom as best you can. And take some time for you, too.

Virtual hugs,

jen

@beehime

I don't know how I got tagged here but I must have started posts five times and then not posted. Even this morning it has taken all morning to put fingers to keyboard. I'm take the tagging as a sign to say something.

First let me acknowledge the pain and my own tears. Being with a dying parent is not easy yet the greatest gift we can give them is being with them. And you are giving that. Treasure these last days. It is hard to judge from your posts how close that is and I'm not a doctor any way.

Not eating and drinking is often the body's preparing for the end and so that you have found some simple things that she enjoys is important. The salt rinse is important too because it can help with fungal infections that can happen.

Dying at home is more challenging than most people realize. While 85% of people wish to die at home, only 15% of people do. It takes a bit of preparation and often there isn't time to do that. The question of IV's for instance is a challenging one. Administering them at home without skilled guidance can be difficult. Pain management is another big piece. Even personal care can be awkward. Bathing and toileting are all pieces that have to be worked out.

I was going to start to type up some questions for your palliative nurse visit on Monday when I realized that there is a much better resource. Virtual Hospice is a Canadian site based in Winnipeg that is designed for talking about death. If you have a few moments and the courage to face it head on - here is a link that will help with practically considering a death at home - https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Decisions/Considerations+for+a+Home+Death.aspx

I just want to give you a big virtual hug and let you know that we are walking with you in this difficult time. And while it took a bit to get me here today, I'm here now and if I can help with anything let me know.

Angus

KDW2021
27 Posts

Hello @beehime Thank you for sharing this part of your journey.
I also watched my mother's decline as she was in her end days at home. We had many supports in place, including palliative care nurse visits, and palliative doctor on call. We also had the “special box” of injectible pain medications. She ended up choosing her own time to move to hospice care.
When my husband was recently in-hospital on a chemo protocol that caused mouth sores, he was given “magic mouthwash”… a combination of anti-viral, anti-fungal and antihistamine, I think. It used to include a topical anesthetic too (Lidocaine?), but apparently people were having trouble swallowing. I wonder if there is a similar product that you could ask the Cancer Nurse about on Monday?

You. Are. Enough.

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