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DianaGearhart Asked April 5, 2024

I’m dealing with a new issue with my Mom. She has stage four lung cancer.

My mom was diagnosed on Valentine’s Day. The cancer is in her left lung, chest lymph nodes, and 3 cm in her liver. I have tried to get her to a pulmonary doctor over the past six months, but she would never go-for various reasons. She took one round of chemo, three treatments in three days. It wiped out her bone marrow, white cells, and made her platelets critically low. The doctor started her on daily immune boosting shots for a week. My Mom decided to stop chemo because she was so weak. She didn’t have severe chemo side effects until three weeks after the round of treatment. She is so weak that she can no longer stand up and has to be carried to the portable potty. She is almost 85. She recently started yelling out for my deceased step-father and is displaying other dementia like symptoms. She’s not eating or drinking much-5 days now, sleeps all the time, sweats a lot, brain fog, confusion, pleural effusion-before chemo we had to get her lungs drained every five days-Thoracentesis, low oxygen dropping to 71-77 when standing-it’s maintained at 93 while on oxygen and laying down. We contacted Hospice and they are coming today. My two sisters and I, and a brother in law are taking care of her. Are all of these side effects normal after just one round of chemo? I’m not that sure that she will bounce back. Watching her die slowly, the long hours we are all putting in, is tiring. She wants to die at home in her bed. The sister that lives with her is physically and mentally not well because she is on so much medication. She fell off the commode and broke her rib. She also now has a severe kidney infection. Her ex-husband is staying with her and has been a God send. He helps with everything. I live three hours away, and my older sister is 2 hours away. We are both staying two days a week at different times and staying at a local hotel, and I’m driving r/t an additional day right now. It’s all exhausting and very sad. I would rather my mother be well and her snarky self. Can anyone tell me if someone at this age can regain their strength after one round of chemo with all these side effects? I know that the cancer will ultimately take her away. It just seems like it’s happening so fast. Thank you.

Southernwaver Apr 10, 2024
She is dying. I’m sorry.

MACinCT Apr 10, 2024
Stage 4 means less than a year and no treatment will be a cure. Chemo can only push back time but at what price of quality of life? She is weak, sleeping and not eating well. She is transitioning and it might be the cancer. Hospice caregivers should keep you informed. Keep her comfortable. She might only have a few weeks left.

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LilyLavalle Apr 10, 2024
My mom recently died at home with hospice (who in her case did next to nothing, but others have had great help from them). After having been through it, I usually suggest that the family find a hospice home for their LO, because it is so extremely grueling on the family. However, if your mom has a kidney infection she may have very little time left.

Speak to the hospice social worker. You should not be carrying her to the commode. Someone will get hurt. This was one of the biggest issues we had with my mom. I'm glad you can share funny stories of family and friends, and have some quality moments with your dear mom. I wish I had been able to do that. You are doing all you can, and the best you can. God bless you.

JoAnn29 Apr 10, 2024
Yes, chemo has life long side effects. I don't think anyone would bounce back at your Moms age. My sister died 27 yrs ago from breast cancer. The chemo was brutal, 8 months of it. She passed anyway. You would think by now they would have found something that does not poison the body.
AlvaDeer Apr 10, 2024
Yes, JoAnn. You are correct. My most recent cancer, the triple negative DOES have a few chemo drugs that can be used. As you know I have declined any chemo and any radiation as well as node removal; at 81, after the lumpectomy, I will allow this to play out as the fates dictate. But when I saw my last oncologist appointment earlier this month she leveled with me that she felt I made the right decision. She said that all she has to offer now has great risk to the cardiovascular system. Given I already have long standing atrial fib and underlying ASHD, it would be something that may kill a whole lot quicker than what I am trying to cure.
Chemo is devastating to our system. Unfortunately it is often still only what we have. It kills cells. It kills bad cells and many good ones as well. It is setting a prairie fire for our body that has and effect, but ALSO many side effects.
Susansa Apr 10, 2024
Eleven years ago my mother was diagnosed with lung cancer the end of September. At the time the doctor said she had 6 months. She decided she didn’t want chemo. She passed away 3 weeks later. She was 79. She was not in any pain. She did have difficulty breathing. She was on oxygen. It was one of the hardest things I ever went through. My sister and I made sure one of us was always with her. Sometimes I am glad it happened fast. I was an emotional wreck.

MidwestOT Apr 10, 2024
I’m very glad to hear that you have hospice services and that you are feeling supported. My husband‘s hospital bed was delivered the day he was admitted so I’m not sure why they’re waiting until Friday? I would ask about it, and also make sure they give you an APP(alternating pressure) mattress, to prevent skin breakdown.

I knew when it was no longer safe/comfortable for my husband to get up and the hospital bed was very helpful then, as he was able to sit up and eat safely, visit, etc. I let him sleep as much as he wanted and then tried to be there for those precious times he was awake. It sounds like you’re all taking wonderful care of your Mom and I have no doubt she feels surrounded by love. Just something to think about, it can be a gift to grieve together—I remember crying and laughing(oh and singing) together at the same time.

If you have never been with someone who is dying and even if you have, please ask a lot of questions of your hospice team and don’t hesitate to call them at any time day or night. I called whenever I had a question and they were always glad that I did. It was just the two of us and wasn’t always easy but every issue was resolved. I know some posters here have not had positive hospice experiences, but our experience was wonderful and it sounds like you’re feeling good about your hospice team, which means so much.
JoAnn29 Apr 10, 2024
Maybe the supplier is not close by. Hospice does not have these beds "in stock". I too wondered why it was not brought in on day one but maybe Mom wanted her own bed. Those hospital bed mattresses are not comfortable.
DianaGearhart Apr 9, 2024
Hospice came last Friday for her evaluation. Another hospice nurse came today day and did wound care on her foot and actually helped me change her bed, and steadied her while I washed her up. The hospice Chaplain and hospice case worker also came today. They are all like Gods Angels. She has no strength to stand on her own. We will be working with Mom on letting go below so that we can change her easily. I could not get her to the portable unit by myself. Her skin is dry and it hurts her some just washing her up. I applied lots of lotion. Hospice is bringing in one of their beds this Friday. Mom is in agreement with it. It will help us manage her care better. Her oncologist had given us a low milligram of steroids that we are giving her every other day for now. Hospice can also refill this. It has helped
her appetite. It has really picked up the past few days and she is eating well. We are all ensuring that her meals are well balanced, nutritious, and high in calories. At this point forward, it’s about keeping her on oxygen, advair, nebulizer, thyroid medicine, and pain medication as needed. So far, no bed sores. She wants to sleep most of
the time. I tried her on leg and arm lifts today. She did okay. I also kept her up a little while, until she started flopping over because her stomach muscles are so weak. She is definitely much weaker than she was four days ago. She told me that it wouldn’t be long for her. Even her voice is very weak. I feel bad for her, but confident that we are doing everything we can. I don’t want her to suffer. I stay very upbeat while there and talk about fun times and funny stories of family and friends. I also read stories of miracles to her. I want her to feel loved and cared for until her last breath.
Isthisrealyreal Apr 9, 2024
May The Lord be with all of you during this time.

You guys are doing great and she definitely knows how loved she is.
AlvaDeer Apr 5, 2024
If your mother doesn't wish to take further treatment I would support that, as she is dying with lung cancer and metastases. I would get hospice and no further treatment. I think, from what she say of her that this is her wish.

I am an 81 year old retired RN. I have a return of cancer of breast after being cancer free for 35 years since first mastectomy, chemo. I have chosen to have lumpectomy ONLY with no removal of nodes and with no radiation and no chemo. My family, doctors all agree with this as an option. I had the lump removed with wide clear margins which may give no some years, but chemo would be devastating to an 81 year old with already arterial sclerotic heart disease underlying. I will, if the cancer returns at breast have another mastectomy, but I won't take chemo or radiation, would move to palliative care and then hospice. I am quite willing and ready to die, but don't intend it to be by torture (which is what chemo and radiation amount to at this point).

I wish you luck speaking with hospice and I hope you'll update us.

waytomisery Apr 5, 2024
Chemo at your mother’s age often is difficult to tolerate. You did the best thing by calling hospice . Know that hospice will not be there all the time . They have a nurse come once a week , an aide a few times for a few hours for bathing and changing sheets . The bulk of this hands on care will be done by family unless you hire nurse’s aides to come into the home . The other option is to ask hospice if they have any inpatient hospice facilities , although those are becoming more rare. SNF is another option .

Honestly , “ happening fast “ would be a blessing .
I’m sorry for all of you going through this . ((Hugs)).

Daughterof1930 Apr 5, 2024
Our family recently went through this with a beloved cousin, a much younger man than your mom. He lived a very active life of strong, physical labor, never once smoked and was found to have advanced lung cancer. After one round of chemo he was never the same. He was simply wiped out, exhausted and lethargic from then on. He never again did the things he loved and died about 9 weeks later on hospice care. It was a stunning turn to see it happen so quickly. We relearned the old adage about the treatment sometimes being worse than the disease. Chemo is brutal, more so in the elderly. I’m glad you’re getting hospice help. They were wonderful with my dad and he also died in his home. I’ll also caution you that hospice isn’t designed to be a lot of hands on help, that’s still mostly on the family, and it’s beyond tiring, especially as things intensify toward the end. If I had it to do again, I would have used the one hospice agency in dad’s city that has an inpatient hospice house for patients nearing the end of life. It’s a hotel like setting with full care, where families can stay as much as they want. It removes the exhaustion of full caregiving duties and the endless questioning you do of whether you’re getting it all right. I learned that dying in one’s bed in one’s home is overrated as the last few days are mostly spent in a deep sleep, seemingly unaware. Know there are often choices in hospice and hire additional help as needed. I’m not being very encouraging about mom coming back from her current state and I’m sorry for that, in my experience with a dad and now the cousin, a comeback is a rare thing. I wish you all peace

BarbBrooklyn Apr 5, 2024
Diana, I'm so sorry for this sad news.

When you say hospice is coming today, do you mean to evaluate, or to start end of life care?

It sounds like this level of caregiving from you all isn't sustainable, at least not for very long. What do her doctor's say say about a prognosis?

Please consider hospice facility, or hospice care in a care facility.

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