Some of you I have spoken to recently regarding my mom but I have a new question.
For those who don’t know, my mom has stage 4 NSCLC- squamous cell. She was on immunotherapy for just under a year and has now completed 1 cycle of Gemcitabine/Carboplatin.
Ever since she quit immunotherapy and started chemo... so the last month, it is like he name has been forwarded to the death squad. Immediately when she became a chemo patient, the Palliative Care ppl came and pushed morphine and ensure and oxygen and want to come every week. Now today, another hospice care place called and wants to come for a visit and talk about where she will take her last breath. I have to say I am pissed if at this! What happened to instilling hope in a patient? She obviously got out in a list but is someone not telling me something? Does going on chemo for this type of cancer mean she has weeks or maybe 2 months to live? Why else would they be coming? I know this is doing a number on her ability to cope emotionally when all everyone wants to talk to you about is dying. I read ppl talk about chemo on here all the time and some stage 4 folks too and hope is always at the forefront! Not for my mom. She still goes out and got a haircut today etc but is extremely fatigued by the chemo, has a rash, can’t taste very well and has lost her appetite because she doesn’t feel good.
I want someone to tell me if there is something I am not being told by them. It feels like we are playing a death game here and all hope is gone. I am angry about this! Does chemo for stage 4 (and I know there is no cure) mean she will die in a month? This is worse than the stats I read! The stats at least gave a median of something like 7 months in chemo and then after that nature takes its course but this weekly hounding by palliative people is driving me mad!
Sorry for the rant. I thank God for this group of people.
I fully understand that as your mother’s condition worsens, you’re going to need the additional support, but I don’t understand why it would be coming to you so quickly, other than your mom’s doctors have seen the rate at which her condition has deteriorated. Still, if that is a concern for them, I feel they should have discussed it with you and her.
Have you asked any of the callers where they got their instructions to contact you? You’d certainly be within your rights to contact the oncologist’s office to find out more about what is going on.
I’m going to tag Kims1961 , who has done a lot of work with regard to managing end-stage-of-life, and WestCoastSailor , who lost his wife last year. He, I believe will have some inspiring words about some of the assistance he received from his wife’s palliative team.
Please try to understand that these people who are “driving [you] mad” are there to help you, and it may will be that at some point, you will need their help. If you choose to defer their services at this point, try to do so in a way that they will feel welcome when you need their services.
I'm glad you got things off your chest and posted. I can appreciate wanting more information and a better understanding of why a Palliative Care Team is involved. From personal experience I will tell you they were so helpful to my family when my Dad was diagnosed with Stage 4 Tongue cancer and are currently supporting my Aunt with stage 4 lung cancer.
Palliative care focuses on the quality of life of people who have a progressive, life-altering illness. Palliative care includes pain and symptoms management, skilled psychosocial, emotional and spiritual support and comfortable living conditions with the appropriate level of care – at home, in hospice, in hospital or in any other setting of the person’s choice.
Palliative care is a critical component of the cancer continuum of care and healthcare overall. Palliative care should be provided earlier in the course of advanced cancer, introduced progressively and with other therapies, using a multidisciplinary team approach.Palliative care does not solely mean end- of- life care. End-of-life care is a component of palliative care that focuses on the specific needs of someone who is dying.
In some situations a palliative care team does not get involved soon enough and people miss out on important care. The Canadian Virtual hospice is also a great resource for information on palliative care:
10 Myths about palliative care
What is Palliative Care?
I can understand why their involvement without a conversation felt alarming. It might be a good idea to have a meeting and discuss how they can help right now.
I can only imagine how this is feeling for you!!! You are so right - there is always hope but I think in many cases, people also found themselves unprepared at the end for what they wanted for themselves or their loved ones. My mom did not want to die in hospital. Unfortunately , in order to relieve her pain and because we didn't even know about the support of the palliative team, she did in ICU. Now - as a part of living - I talk about my death and encourage others. Not because I've lost hope but because I want to have a good death and also spare my loved ones of making any tough decisions.
Definitely talk to the palliative team about your feelings. They may have thought they were being helpful/proactive but instead it's coming across as too fast. I had a friend who lived a few years on palliative support - it just meant that interventions from palliative helped her with a more comfort-focused approach.
Please keep us posted on how you're doing. Such an important question!
It was a bad day yesterday but today has a bit more clarity. I am not disregarding the very important work of palliative teams, nor have I argued with any of them or treated them with disrespect. Quite the contrary. I know that my family will need their services in the near future and I am thankful for such programs. I was just voicing my frustrations about how quickly things move and I have been unprepared and ill-equipped to deal with such a pace.
Cynthia, I will ask about how the hospice group/business got my mom’s phone number. At least we will know who the source of information-sharing is.
Lacey, thanks for the links, I know will find them helpful.
Kim, so nice to hear from people those things that hadn’t occurred to me earlier. I am thankful that I at least know my moms wishes for palliative care and where she wants to be.
Will keep in touch!
I have been watching your story from afar and contemplating weighing in. And now Cynthia Mac has tagged me in.
I come at this from two different directions. I am a Stage 4 NSCLC patient currently on a targetted treatment since I am EGFR+. At some point that will stop working and I will be facing chemo (maybe if that is what I choose) and a slow lingering death. From the other side a year ago yesterday my wife, Yvette, was diagnosed with Stage 4 pancreatic cancer. She was given three to six months to live and died six weeks later.
Shortly after my wife died I ran across the phrase "anticipatory grief." We are prepare ourselves for the inevitable. When I saw your anger I remember how I felt when the nurses started talking about palliative care. I wasn't ready to let Yvette go. Someone told me that grief is something that you have to go through. You can't go over it or around it. And anger is a natural part of grief.
In a few other places on this site I talk about the hard conversations. It sounds to me like you are having those. Memorials, making sure that affairs are in order, not at all hopeless but making sure that things are easier when the time comes, the comfort of knowing that you are doing what she wanted.
When I meet with my oncologist I always have a list of questions and palliative care is always on that list. Lacey_adminCCS has done a good job of dispelling the "death squad" myth. Palliative care tends to be more integrative. They look at more firmly at quality of life and the overall picture. I have some conditions that are outside the purview of the oncologist and I want to make sure that those conditions don't become the reason for my decline. My one regret with Yvette is that we didn't involve them sooner. She wanted to die at home. And it simply wasn't possible given the time that she had left. So off we went to hospice
Hospice though was a great experience. I had lost my wife to a morphine fog. We had cats running along the ledges in the hospital as well as dogs under the bed. Hallucinations to be clear. Four hours after we got to hospice I had my wife back. They used fentanyl to manage her pain and her thoughts cleared and I was able to spend those last days reminiscing and making memories.
One of my favorite quotes is from Emily Dickinson:
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
Hope takes many forms and in these final days (whether it is weeks or months) it is important to make memories. Yvette and I colored a mandala together. We celebrated our 12th wedding anniversary the Sunday three days before she died. Oh and about the loss of appetite? Now is the time for chocolate ice cream or whatever those favorite foods are. In our case it was a peach smoothie.
And just laugh. I went through a stage a couple of weeks ago where I asked my Echo Dot for the joke of the day and then tried to remember it and use it in some social situation during the day. I have gotten involved with my local hospice organization and have found their services very useful. As one of the counsellors "Our services don't end with the death of the patient."
So live long and prosper. Thanks for giving us the chance to share our experiences with you. Stay in touch.
Thank you for your kind words. I too am familiar with you in that I read what you write but never comment. I have gottten a lot of encouragement from reading your posts over the last year and I have enjoyed the wisdom you share so freely.
I became acquainted with the term anticipatory grief when my mom said “stage 4 inoperable.” I started to cry and didn’t stop. Even my mom said “what is wrong with you?I am not on death’s door yet.” In trying to figure out why I was reacting so strongly, I came across a website that explained it and the term. I have been living in this place for a year now...sadness, denial, anger and lots of tears and she isn’t even dead yet. I fear what I will feel when it does happen and I too know that there is no way around it but straight through it.
I am an introvert and keep a lot to myself. I don’t like to talk to people about this because it makes me cry and I don’t want to cry in front of too many people.This forum allows me to talk to all those who know more than me and learn from them but provides me the privacy I need.
Part of the anger I am feeling lately has to do with the fact that my Dad has very bad MS (primary progressive)and it never occurred to me or my siblings - even for a second- that my dad would outlive my mom. So, there was the shock of knowing we would be dad’s caregivers instead of mom and none of us has a great relationship with him. Oh, he also has cancer too now. I feel like I won the healthy parent jackpot here (insert sarcasm) and there are days when I feel ripped off. My mom has never even had an rx for anything stronger than penicillin, has never been seriously sick before and the first thing she gets is going to take her out. The why me? Why not someone else’s parents and why do some miserable people live forever it seems and the lovely ones leave early? My mom is 72. Probably the same thoughts lots of ppl here have had.
Anyway, thank you for the sound advice. I am happy to hear that you are on a type of immunotherapy and I hope you can stay on it a long time.
Blessings to you Angus.
From my own personal experience, the doctors typically won't tell you how long someone has to live unless you specifically ask for it. Even then its hard for them to know, or to say even if they have a good idea. Too long and its unrealistic, too short and it kills hope. Perhapse the eagerness of the team is to prepare for the worst, just in case it all goes south very fast that they at least have the answers to the hard questions.
Maybe the best thing you can do is to reassure your mom and keep up her hope and spirit. But do be prepared yourself that it is possible that things can deteriorate very fast but that the palliative team will be there to help. The most important thing is to create as much memories as you can with her while you can. Talk with her laugh with her take photos or videos with her and tell her how much you love her and give her hugs and kisses. These memories will become the most precious things to you and you will look back not regretting any words unsaid. Best wishes for you and your mom.
But, as I said earlier, self-care is vital for the caregiver, and this conference was part of that.
Like you, none of us expected Mom to leave us before Dad did. We’ve seen two possible, and very opposite explanations for this: one, her sudden passing probably saved Dad’s life by getting all of us to run to our doctors for a checkup, and that’s what found Dad’s cancer, or two, she went first because she wouldn’t have handled “all this” with Dad very well at all. Whatever the reason, the choice far exceeded our control.
I think the only “why me” I’ve has was over being the one who was “tapped” for the caregiving role. I fully, and honestly expected that if such a day ever came, Dad would have wanted my sister to do it. She was the “nurturer” among us, so to be thrust into that role (especially at my age) came as a real shock. My “why mes” stem from the fact that my siblings are of the “you’re retired, you can do it,” mindset, and they appear to think that I had made absolutely no plans for my retirement. Resentment is a very damaging emotion, so I have had to work extremely hard at keeping it at bay over this.
More confounding for me right now is the uncertain future. I had everything mapped out and now my map can only be unfolded as far as the next round of CT scans. Any plans made beyond that are subject to change, and my social life is being blocked around the “off treatment weeks.” Your schoolwork and my writing deadlines have to be slotted in there somehow, too. I was planning a trip for the summer of 2021, and I really feel as though I can’t plan that far ahead right now.
Your trepidation about caring for your father is very understandable. I had a cousin who had MS, and he was placed in a nursing home when he was still in his 40s because neither his wife nor his mom could fully manage his care. They made the decision as a family, though, and my cousin was ok with it because he wanted his family to have the peace of mind knowing that he was getting care, and that they could come and see him after he’d been prepared for the day, rather than having them do his preparations.
As Winter said, we’re walking a fine line between feeling all the sadness and dread of what is to come for our loved one, while trying to stay upbeat and hopeful for their future. And that can eat us up if we allow it. The memories we are making now are bittersweet in many cases, but these are the memories that will help us remember years from now that we did everything we could for them.
Already, Dad and I have built memories I know I will look back on fondly - the photo of him putting out the food for the crows, the two of us wandering around an auto supply store - him looking for trailer ramps and parts, and me looking for magnets and clamps for my embroidery, and watching him zig zag around a grocery store behind the cart.
This post has kind of turned into self-introspection which was not the plan, but I hope it helps you see that other people are trying to sort out some of the emotions you are and are struggling to answer the same questions you have, too.
I hope today’s a good day for you.
Cynthia Mac I enjoyed reading your post this morning. It does help very much to hear what other ppl are going through or have gone through - less that I am not alone and more that I know I will survive and maybe even be happy again one day. One thing is for certain, my
historically “ignore it and it will go away” attitude is not cutting it this time.
Mom had an oncology appt 2 days ago and one of the docs didn’t know what the rash was and called another Doc. The head Doc thought it was bleeding under her skin and sent her for a bag of platelets because she didn’t have any. This has halted her chemo for next week.
I guess this will be the norm if the Gemcitabine keeps killing all her platelets. It makes me long for the days of Immunotherapy.
I have to remember to take more
pictures and live in the moment which is hard when I am at my parents house because I seem to be refereeing a lot as of late. With my Dad’s MS, he has so many lesions in his brain that it has changed his personality immensely and he is often like dealing with an unteachable and obstinate child. He either doesn’t get or refuses to accept how sick she is and seems to be angry when she says she likely wont’t be able to make it to Vegas in 3 weeks - a trip he booked months ago even though I told him that was not a good idea. He argues with her and accused her of faking how she feels because when people come over, she seems up and not down like she does when it is just the two of them. I told him she does that for the sake of the kids and puts on a happy face for us but rest assured that how she is when she is alone, is how she is truly feeling. I was quite shocked that someone would think a cancer patient would be trying to fake it or even milk it for that matter. Since my dad is stone deaf too, here is this lung cancer patient spending most of her breathless day yelling and repeating everything she says 3 times. Yesterday, it was almost like seeing two old people bickering in a movie that is supposed to be a comedy but isn’t funny right now. I wasn’t sure whether to cry, yell or leave. I believe my mom needs to laugh right now and there is zero laughter when my dad is around. I have never met a personality type quite like him and that was long before the effects of MS showed up.
Thank you again for your words, I appreciate the time and thoughtfulness that goes into each response to me.
You have ave a good day as well.
Your comments about your parents bickering and you not knowing how to react/deal with it took me back to a time where I was watching my parents do the same thing. It was Christmas Eve, I was at their place for dinner as I was in the middle of my first divorce. There they sat, arguing about the quality of the pasta my mom had prepared. I finally had enough - I slammed my hand on the table and said "shut the f**k up, I don't need this!". The remainder of dinner was had in silence. I was 30 at the time and had never used that sort of language with them before, but I was fed up over the ridiculous bickering.
My dad passed from lung cancer in 2013 and my mom passed suddenly and unexpectedly in 2018. I miss them both dearly. I was diagnosed with breast cancer shortly after my mom passed.
I wish you all the best going forward. Be sure to take care of yourself and don't get burnt out.
You know, I almost did the same thing yesterday but didn't...kinda got numb instead and cried when I got home. The bickering started over a steak (interesting yours was pasta) because I offered to BBQ them steaks because I thought the red meat would help my Mom since her blood is so low. All she did was ask my Dad what kind of steak was his favourite. He responded with "I need more information" and on. and on it went for an hour of various bickering. My Dad is the most miserable person I have ever met and the hardest person to get along with. No matter what I or my Mom does or says, we are wrong and stupid. A lot of this in the last 10 years in MS but he was toxic when I was a kid.
Frankly I don't care anymore how he behaves except with regard to how it affects my mom's health. I want her to laugh. I told her she can rest at my house because it is peaceful here but she still puts herself and her cancer behind the needs of my Dad despite how he treats her. She is a walking martyr and saint in my eyes.
I love when all the people on this are transparent with what life has been like in these situations. It makes my transparency less embarrassing.
Take care of yourself!
Your Dad sounds like a “difficult person.” People used to tell me I was able to work with difficult people (lord knows I came across a few of ‘em). I learned through various workshops and seminars offered through my job over the years, how to handle certain situations - sometimes with tact and diplomacy, and less often, with assertive confrontation.
When I read your first post (of October 4), I thought you handled the situation very well, even though your dad wasn’t buying what you were saying. If that’s the case, it sounds as though your dad needs to hear about your mom’s condition from someone in a position of authority (the doctors directly) so he can challenge them and have them adjust his attitude toward your mom’s condition.
Another thing you could do with him if he takes another run at this issue is to do the “what ifs” challenge. It goes something like “so what if you’re right, and she is faking it. What’s the impact on you? And, what if you’re wrong, and the doctors are right, and she’s not faking it?” You kind of keep going until they’re burned out of answers.
The fact that your dad leaves the people around him feeling stupid or inferior rankles me — I have a brother who does that. We refer to him as the “Dr Phil” of the family. He actually rolled his eyes at me the other day when I offered an opposing view to the soapbox speech he was giving! (I don’t usually engage, but if I hadn’t, he would have gone on and on...” ) People who do things like that take away our power, and you really need your power right now. One of the easiest ways to shut it down is to say, “Yes, you’ve told me that before,” and “No, I don’t need to see the texts,” and “well, you’re entitled to your opinion” (followed by a quick change in subject). I once had a boss (one of those difficult people I mentioned above) tell me that my work on a particular task was “obsessive.” My reply was, “Really? I thought I was just being thorough.” She didn’t know what to say to that. How can a boss tell you they don’t want you to be thorough with your work? It’s a matter of finding the strategy or strategies that are going to work for you or the other person (and something is bound to work.)
The hearing loss is a hard one. I know someone with hearing loss, and repeating almost every sentence is tiring. I was talking with a woman yesterday whose husband is also hearing-compromised, and she pointed out that his pride won’t get him out to get hearing aids. Such stubbornness. But, you might be able to turn that one around on him and say, “you know, if you’d get hearing aids, and Mom didn’t have to exhaust herself by repeating everything she says to you...” (or add it to the “what ifs challenge.”)
In your second Oct. 4 post, I felt badly that you ended up leaving and in tears, and to see you describing your mom as a martyr. Unfortunately that behaviour for her is likely deeply ingrained by now, so it will be hard to change. Your mom was likely just trying to make some light conversation, and your Dad turned it into a chore/ bickerfest.
I totally agree with Runner Girl, in that a little “shock value” might have ended that one. I envision a loud whistle out of you followed by, “it doesn’t matter what your favourite steak is: I’m cooking New York Sirloins! (Or whatever.)”
Your comment “Frankly, I don’t care anymore how he behaves except with regard to how it affects my mom’s health” is bang-on, and you are wise to see it that way!
Speaking of steaks, during Dad’s first round of chemo, he actually gained weight - he ate steak almost every day. This time, though his appetite hasn’t been as hearty, and he’s had to postpone two treatments... hmmm. There could be a connection there... anyway, it was so cute to see him mowing through all of his favourite foods: steak, potatoes and ice cream for dessert!
Last Friday, she was rushed to the hospital thinking she was having a heart attack...chest pain, cold sweat etc. She was in Afib and they shocked her back to a normal rhythm and then put her on blood thinners. The next night, I got a call at 3 in the morning for the same thing. Paramedics came, took her to the hospital and shocked her again. This time, in addition to the blood thinners, they gave her a pill to slow down her heart.
Yesterday, she went for her bloodwork and chemo appointment. Her white blood cell count was waayyy up and they figured she has some kind of infection...kidney or bladder they said because last week she had to take 4 morphine pills because she had so much pain in her kidney area....doc thought she passed a kidney stone. The cancer centre doc was still going to give her chemo yesterday but a nurse stepped in and got right in his face and told him she is nowhere near strong enough to take chemo given the heart incidents last week. So, they sent her home with antibiotics.
I went over today and she is having extreme difficulty breathing and cannot be off her oxygen. She has massive fatigue and swollen ankles as well. To put this in perspective, last week we went to the mall together and this week, she can hardly stand. Breathlessness, swollen ankles and extreme fatigue are the classic signs and symptoms of heart failure. This, with the untreated lung cancer since the 3rd week in Sept and now the Afib, I don't know how much more she can take. I am sure she is starting to drown in fluid. I also noticed her demeanour has changed. I cried today when I saw her and normally she would cry too but today she said "who cares already? Who wants to live like this?" She is completely detached from emotion and actually told me to get a grip...which even through my tears, I thought was funny.
The sad part is, I am the only one in my family who seems to understand the gravity of this. The doctors are thinking she will be strong enough for chemo next Tuesday and re-scheduled her. How can someone who cannot walk 3 steps without O2 and has heart problems now and is retaining fluid, be able to withstand chemo that knocked her out last time when she was a lot more healthy? Am I the only one that can see clearly? My dad asked "what do you mean you can't go to the store anymore?" In this state, I feel like my mom won't make it two weeks. The cancer centre doctors don't see how sick she is (or care), my family can't seem to see that she will not get better, the Emerg doc thinks she can just go to a cardiologist to follow up when she can hardly get out go bed, and I don't know what to do next and have no help or guidance. Her family doc is 2 weeks for ANY appt.
I am at my wits end, I really am
Brighty gave some great advice. Could you talk to a social worker , someone in hospice or palliative care? Interesting how that one nurse really advocated for your mom to the doctor - could she/he help? This might be a good time for a case conference to be sure that everyone is on the same page - are you working towards extending life or quality of life? What are your mom's wishes? She shouldn't have to suffer and maybe the "end game" needs to be reviewed.
I hope you are getting support too. This is very stressful and it shouldn't fall on your shoulders alone. Does your mom have someone as her POA for her medical care?
Please keep us posted on how you're doing . We are here. KIm
Your mother’s GP should receive a report of both her recent trips to emerg, so it might be worth contacting his or her office - he might get her in, and it might be worth a shot. Even if your mom can’t go with you, it might help you to have a conversation about what’s going on. Have the emerg doctors referred her to a cardiologist?
I doubt the oncology doctors “don’t care” about your mom. Their focus is on getting your mom’s cancer treated, and they have likely had people in their care who also have heart problems. They could be being optimistic that the antibiotics your mom’s been given will have had time to work by next Tuesday.
Do you think that other members of the family could be in denial about your mom’s condition? You’ve mentioned before that your dad tends to minimize such things, and if he’s been talking to them, perhaps they’re looking at this through his lens and not through yours.
Brighty Has offered some good suggestions, and has asked some good questions. For your sake, I hope your mom has set out some wishes, again, based on some of your earlier posts. And I hope it will be some time before you need to know what they are.
I believe you are doing everything possible for your mom, and wish there was more we could do to help you through these next few weeks. But, we can listen, and we are here.
I'm so sorry that your mom's condition has reached this point and you seem to be the only one who sees what is happening. You've received some good suggestions already and I don't have anything substantial to add. I wanted to support Cynthia Mac's suggestion about going to see her GP. You need to get a medical professional on her side dealing with all of the issues.
I am worried about you and your stress levels right now. Are you able to set aside 15 minutes a day just to be with yourself, do something nice for yourself, perhaps a short walk and just be present where you are, admire the trees, the snow (if you have any, we do), etc. Just something to give yourself a tiny break from the madness.
We are here for you and feel your pain.
Runner Girl - Gayle
thanks for the reply. After crying for 7 hours yesterday we are back in hospital again this morning. Mom has another Afib episode and her BP is 76/44. The doctors are baffled at her white blood cell count being 40 when it should be 9. Waiting for CT scan to see about embolism. Emerg doc was ticked that the cancer centre did nothing about white blood cell count and didn’t investigate further.
Will update later. Thank you for caring!
Thanks to all who are responding. I would like to reply individually but I am
I hope the doctors are able to keep her comfortable, and that you were able to get some rest last night to help you face today.
Thinking of you.
i am not thinking to clearly right now. In addition to losing my mom -likely this week, I also lost my voice yesterday as well 10 lbs since Sunday (that’s not so bad). I am not sure where my voice went which is ok because I whisper to mom anyway.
As of an hour ago, Mom was moved to the Palliative Care ward. Happy to be here but sad too. I am happy because these are the experts and this is the best place for her. I am sad because when I saw her go through the doors to the ward, I thought of where she will be when she goes through them again and that is with my sister in Heaven who died a long time ago. She said to me that she can’t wait to see her Mom holding my sister at the door to Heaven.
I will let everyone know when it is all over and the tears of a different kind start. I feel so sorry for my dad as much as he is such a difficult person. He has very very bad MS but he stood -not sat- by her bedside today for 2 hours to hold her hand. Quite a feat for him. He knows his life has changed in all ways now and forever. My mom was his caregiver and his only friend. I know Angus that you can relate to that kind of pain.
i hope going forward, I can be of help to the next person who goes through this. This thread has been an incredible help even in the months that I only lurked and never posted much. I read about many many of you and prayed for
you as well.