I Hope I'm in the Right Place

[devastated daughter]

I'm new and was a caregiver for my beloved 82 yr old mom. She was married but they weren't happy and were talking divorce. He, in general seemed to be incapable of emotion and affection although when they met in the early 1990's, he treated her well, showed affection and they enjoyed being together. She and her husband (he is 4 years older) lived 90 minutes away. Mom smoked for many years, since age 17. 

In March of 2011 she was diagnosed with non small cell lung cancer. She'd had a bad upper respiratory infection that was lingering. They did chest xrays and found a spot on her left lung. Sent her to a pulmonologist not long after. She had a bronchoscopy done which resulted in her official diagnosis of NSCLC, Stage 1.  He told us she was fortunate it was discovered early -- we obviously agreed! She was referred to a surgeon who was excellent. In June of that same year (2011) they removed one lobe of her left lung and a part of the second lobe as well. They said she should quit smoking for surgery and STAY QUIT. She quit for surgery and was in the hospital about 7 days because of what they call "sundown psychosis" where she began hallucinating, having some paranoia etc. They kept her a bit longer to schedule a scan to make sure it wasn't worse than originally thought and perhaps had spread to the brain. It hadn't, thankfully! However about 10 days after getting out, she began smoking again. I and my family have experienced people being insensitive in our current situation because although mom did cut down, she still smoked. NONE of us approved of that and she actually agreed that it wasn't smart and she was taking a huge risk. But it didn't make a difference unfortunately. The doctor recommended frequent check ups which she did religiously, and regular PET scans which she also did without fail. Her pulmonologist said she didn't need chemo or radiation. That made me a little nervous but her scans kept coming back clean. (Her cancer was found to be squamous cell carcinoma.) After 5 years of clean scans she was declared all clear but still had regular check ups for breathing tests, and her physical. 

 She had several other health problems as she got older including: high blood pressure, COPD, cholesterol was somewhat elevated and she had mild emphysema and Irritable Bowel Syndrome. Mom also developed anxiety years back but that seemed to worsen as she aged. Even during her first bout of lung cancer, she was terrified of hospitals and being sick and also had developed major issues around abandonment. We think it stemmed from when she was younger and her dad abandoned the family but also, her mom who she was really close to, was hospitalized "for tests" back years ago. Shortly before that mom had taken me and we moved from NJ to Maine with her 2nd husband. Nana (mom's mother) died in hospital --of cancer. Ever since then, she couldn't handle being alone in the hospital and myself and my sister would take turns staying with her. Mom's current husband also stayed a few nights this round. 

 Mom was experiencing some symptoms that initially seemed random this past spring and into early July after going 12 years cancer free. We thought she had that beat after all this time and continuing regular check ups. I will elaborate on more current information about circumstances some other time but mom was admitted to the hospital on July 5th. They found fluid on her remaining right lung as well as what they described as a "mass" and a few other questionable areas including a 6.3 cm x 4 cm subcarinal lymph node. She was having difficulty maintaining her oxygen level so they put her on oxygen. I stayed with her some nights and most days. My sis had to work and has a family so she did what she could as did mom's husband. There were several doctors and hospitalists involved in mom's care. She was actually in pretty decent spirits despite her fear, talking and joking at times like normal. Several days in, the doctor removed almost a liter of fluid from her remaining lung and said they were sending it to pathology. They also did another CT scan and again told us that the mass looked highly suspicious for cancer. But no one would confirm for sure. Mom was very weak. They recommended sending her to rehab to strengthen her. Results from pathology could take a week. Mom was very clear with them that if it was cancer she wanted them to "throw everything you've got at it. I like my life and even though I'm older I want more time with my kids, grandkids and 2 great grands." The doctor said "So for example, if for some reason you were to stop breathing, you'd want us to do CPR and try to revive you despite any risk of cracked ribs?" Mom said yes. 

Mom died in hospice in the early morning hours of July 25th. She'd been there not even 2 full days. We are heartbroken!! 

 

[Tom Galli]

Devastated,

You are in the right place.

Stay the course.

Tom

[BridgetO]

Devastated daughter, I'm sorry for the loss of your mom. It sounds like she lived her life as she chose. And you supported her as her caregiver, even though you disagreed with some of her choices. Good for you both. I wish you peace and comfort.

[devastated daughter]

Thank you both for your kind words. It's been tough! Complicating matters is the fact that this past Wednesday night my city experienced a mass shooting. 18 people needlessly lost their lives to a high powered rifle held by a 40 year old man who, ultimately took his own life. But in the meantime, our city was under a shelter in place lockdown order for several days. 

Anyway, as for my mom's situation, it got pretty confusing. My sister who has a medical background was medical power of attorney for mom which I and our brother were fine with as was mom's husband. But at different times we were each hearing something different from the doctors. One said I'm pretty sure it's cancer" and when asked how long she felt mom had she said give or take about 6 months. Another one was pushing for rehab to strengthen her. And the hard part is they were doing absolutely nothing to treat it! They didn't offer chemo, radiation or surgery. The "mass" was impacting the esophagus and her breathing. They kept her on oxygen. But I wondered if, once a patient reaches a certain age if they simply don't bother to treat and perhaps feel that the time achieved is "good enough?" Yes, she lived a long life but I feel she could have possibly had at least a few more months or maybe a year if they had tried to remove or reduce some of the tumor. I could be wrong however as I know small cell lung cancer can be more aggressive at times and in certain cases. At least, I heard that was the case. 

On Friday July 21st mom was sitting in bed talking to us (her husband and I) when the social worker and a case mgr came in. We discussed how the doctors had wanted to do a tissue biopsy to get an exact diagnosis and know for sure if it was cancer but the doctor that would do the procedure, though very experienced didn't feel he could safely do the biopsy since mom only had one lung left. He didn't want her to end up with a collapsed lung and on a ventilator. Understandable. 

The social worker and case manager said that the doctors were going to have to discharge mom the next day or the day after that because her insurance was refusing to pay if nothing was being done. Mom couldn't even walk hardly at all by that point due to weakness and had begun suffering the indignity of incontinence. She couldn't do stairs and I'm disabled with just one bedroom so mom couldn't easily stay with me. Her husband couldn't take care of her due to his age (86) and health. My sister has her young adult daughter and special needs grandson living with her plus her young adult son so she has no bedrooms or space for a hospital bed. The social worker mentioned skilled nursing but said that's 10 thousand dollars a day. Mom broke my heart when she said "So you're telling me I can't even afford to die?" It was horrible!!! They were talking about applying for help through the state so we decided to do that. Then her husband said he just wanted her not to suffer. We all agreed including mom. At that point the doctor had come in and told him "I can do something about THAT!" She told us she could order morphine. Said "We can just try it at a low dose if that is something you want (directing that at mom). Mom said ok. She explained comfort care. Oddly though, almost every time while there, they'd offer something for pain, she'd say " But I don't HAVE pain..." She said she would get occasional pain in her tailbone from laying in the uncomfortable bed all the time (they never took her out to walk -- I did at one point. And occasional ache in her side going to her back but she rarely needed a pain med. She had wanted to go to hospice but hospice supposedly refused her because she wasn't "actively dying." So when I left Friday night July 21st, my sister was there and so was moms husband. I had that night at home because I'd been staying regularly. Literally the very next morning, I go back to spend time with mom for the day and normally she is all happy to see us or anyone she knows well. They had been giving her morphine through the night and that hadn't been the plan we agreed with. I couldn't wake her hardly at all and when I did it was an eye half open and a word or two that made no sense. I let her CNA know that something wasn't right. She checked and agreed. Mom had refused breakfast, slept right through it. CNA got nurse and nurse said "it's just the morphine making her drowsy." I wasn't comfortable. No one explained to us that mom wouldn't be able to continue talking with us, watching tv, talking and joking with staff! I called my sister in who's a medical assistant by profession but not at that hospital where mom was. She said she'd drive in and be there within an hour. I stayed that day til 4 or 5 and mom wasn't even awake enough to care. My sister said she would spend the night and have the doctor paged and let me know.  Doc checked mom out and said she was doing okay her vital signs within acceptable range etc. Said it was adjusting to the morphine along with her illness.

 The next morning Sunday July 23rd sis calls early and is crying. "Mom is being moved to hospice at 10. They just told me now they will take her because mom is actively dying." I went back over and rode with mom in the ambulance. They gave her MORE morphine just as we were leaving!! As it was she didn't even know she left the hospital and was outside she was so out of it.  Honestly? I feel like the morphine hastened her death. Does that sound crazy? Mom got to hospice around 10:30 Sunday morning and passed at 3:30 A.M Tuesday morning -- not even 48 hours. We FINALLY got the definitive diagnosis on her death certificate: small cell lung cancer. 

 

[Tom Galli]

Devastated,

I wish I had words to comfort you. Any kind of lung cancer is misery; small cell is misery with added despair. Small cell moves fast once settled in, and the first-line treatment regimen hasn't changed for 20 years. Add your mom's age to the mix and loved ones face a nightmare.

Nearing 20 years after diagnosis with lung cancer, progressing to Stage IV after many failed treatments, I am lucky to be alive. Research created treatment advances with most forms of lung cancer but small cell remains unaffected. The only small comfort in your mom's journey is it was pain-free.

Stay the course.

Tom

 

 

[Karen_L]

Well, I'm pretty appalled at your mom's treatment-- or non-treatment, as it were. It brings back my experience with my mom and dad, during the last 6 weeks of his life. They lived in a small New England town at the time and I found the medical care he received there lacking to the point of being unbelievable. 

It was not long between the time I persuaded my mom that he needed care from a major medical center to his death. Yes, the care was in place, but the cancer had progressed so quickly, all they could do was help manage his pain. That last night, every time I saw him grimace, I told the nurses I thought he was in pain. I wonder if they may have given him enough morphine to persuade his body to finally let go. 

I was glad he was finally done with all that he had been through. The surgeon called my mom after the autopsy and said they were still arguing about whether he died of renal or adrenal cancer. We didn't really care. 

You have been through a horrible ordeal. I hope you are able to find respite for your spirit and take comfort in your mom's well-lived life. 

Karen