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I'm in a bit of a pickle...... really could use some advice

Daisylin's picture
Posts: 380
Joined: May 2011

Hi to everyone. I have been posting for almost a year on the esophageal site, but now I find myself here. Bit of a back story, just to introduce myself. My husband passed away in November 2011 from stage ivb ec, and now I find myself as primary (sole) caregiver to my 83 year old mother in law. She has a fairly healthy medical history, however, in the last few years, she's been diagnosed with alzheimer's, angina and lung cancer.

She is a person who cannot handle any type of change, (the alzheimer's has magnified this hugely) sometimes even an unexpected phone call or having forgotten something will send her into anxiety like attacks, which she insists on going to the hospital for. They have always done the usual heart and blood tests and send her home with an ativan or lorazepam to calm her down. In the last year, she has been to the hospital over 7 times for this. It would have been many, many more times to the hospital, but the staff at the home where she is living can usually calm her down and convince her that she does not need to go to the hospital. She often goes into panics and bouts of confusion and will call me up to 10 times a day, often because of really trivial things (ie- can't find an ice skating program on her television, does not know what time it is, wants to know how old she is..... the list goes on and on, it's endless really).

So, this is where the story gets a bit weird....... Joyce (mother in law) and Lee (my husband) were both diagnosed on the SAME day, with the SAME doctor, with back to back appointments...... oh my god! Of course we were devastated, and hearing a stage ivb for Lee and lung cancer for mom was just too much to handle. Lee, being the POA at the time decided that we were not going to tell her about her cancer. The surgeon who we met with somewhat supported that, but also recommended surgery and radiation. In Lee's opinion, and mine as well to an extent, she could not handle the news, let alone the treatment, especially the surgery part. She would simply fall apart and likely give herself a stroke or heart attack with the panic. Secondary to this, with Lee's terminal diagnoses, we just did not see how I would be able to be primary caretaker for both of them. She has no symptoms of lung cancer, no pain, no coughing. It has now been almost exactly a year since her diagnoses, and still, she knows nothing about it, and has no cancer related symptoms.

I do not know what her staging is, the spot was about the size of a nickel, and no mets. (stage 1-2??) Anyways, now that Lee has passed away, I am POA, and just want to do the right thing. The doctor stated that at her age, the cancer cells spread very slowly, and she is likely to eventually die of something unrelated to the cancer. She has not had any scans in the last year, so I have no idea at this point what the cancer is doing. I feel like I'm drowning..... for the last year I've been so busy being caregiver for my husband, and trying to keep Joyce on the rails, that I find myself now falling apart, I can barely manage to get to work everyday. My energy and motivation are at a zero, and the thought of dealing with this issue is so overwhelming I just can't think clearly. Joyce truly has no one else but me, no family, no friends. no one. My friends and family were overwhelmingly supportive when Lee was sick, but I don't feel it right to lean on them yet again.

Please, someone..... if you can give me some advice, what should I do??? Do I leave it as is, and let her have quality life and less anxiety, or do I seek treatment for her, and pick up the pieces as they fall?? I honestly don't think that she has the state of mind to even understand the diagnoses. After having a son die from cancer less than 3 months ago, I think she'd just fall apart and never be able to get back up again. I think that if she found out about her cancer that would be her death sentence. At the same time I feel like I'm just being selfish, because I just can't handle dealing with this. Any advice would be greatly appreciated.

Thank you,

Posts: 833
Joined: Mar 2011

I am so sorry you have to face this alone. Having lost both parents to lung cancer, a step-parent to alzheimers and an extended family member to alheimers/lung cancer myself I know some of the difficult choices you are having to make. Is your mother in law in a facility on in a wing that specializes in alzheimers care? I am surprised that her docs are even talking about surgery or radiation.

My step-dad raised me so it was very painful to watch him to lose his faculties to alz, he forgot who we all were, relived the horrors he lived through trying to rescue and/or recover his shipmates after a torpedo hit their ship during WWII. He would scream himself to sleep due to sundowning (aka night terrors). He knew something was wrong with his mind but never remembered the alzheimers only blamed the memory issues on those around him.

40 years earlier I watched my dad die of cancer..7 years after my step-dad died I watched my mom die of lc. A few years ago my cousin's mom-in-law was dx with alz, a couple years after that she was dx with sclc. Her onco suggested that it would be more humane to let her die from cancer than alzheimers. Having witness alz at its worst, her 3 children agreed and let the disease take its toll.

It is a terrible thing when you have to suggest that cancer may be a more humane manner of death but it is true. To help you make a decision though, you may want to spend an evening in an alzheimers ward. There is no easy choice. My heart aches for you.

Radioactive34's picture
Posts: 388
Joined: May 2011

At the risk of coming under fire...

I have a 96 year old grandma with some sort of cancer in her abdomen. It has been suggested to either be ovarian, colon, something...whatever it is, it is moving super slow. She also has alzheimer's...at this point just outright dementia.

The doctors did initial exploratory colonoscopy, endoscopy, and scans. She had to be sedated and restrained for those. The doctors felt it was cruel to subject her to more. My parents agreed and decided to go as suggested with palliative care. The pain is being mitigated and she does not have to go through chemo or the like. She can barely recognize her daily caregivers muchless her children. Treating the cancer would just torment her. She is scared of the world outside her room. She is scared when the world comes into her room. She loves toddlers but the rest of the world confounds her.

I'd say continue as you are. End Alzheimer's symptoms have been likened to mad cows disease. Given the choice...I'd let my small cell cancer do it's thing.

Ex_Rock_n_Roller's picture
Posts: 281
Joined: Mar 2011

"The doctor stated that at her age, the cancer cells spread very slowly, and she is likely to eventually die of something unrelated to the cancer."

It sounds to me like the doc is leading you in a direction, and like the previous posters, I'd follow that lead, which I believe is "keep her comfortable and let nature take its course." I don't think you should consider yourself selfish for doing this. In a sense, it might be more selfish to put her in for the full-boat treatment. You'd be able to tell yourself you did everything possible, but would it really do anything for her?

Not an easy place to be, and I feel for you, but this seems relatively clear to me.

medi_2's picture
Posts: 510
Joined: Aug 2009

My late husband and I took care of my mother in our home for 15 years. She had progressed RA and developed Alzheimers. At the time ('90s) there was no definitive diagnosis or medication. We took care of her from the beginning until a month before her passing. It is my opinion that something as strenuous and taxing as cancer treatment be added to her torment. Just give her love and compassion. You may not think they are aware of these emotions but I am convinced they are. I wish you and her all the luck in the world. And condolences on the passing of your husband.
Just remember spring is around the corner and with it comes hope and renewal.

Rosi's picture
Posts: 69
Joined: Dec 2009

My husband chouse to go with quimo and radio and tarceva and memzar and all that staff, he suffered for more that 2 years before he die. I will never let anybody go thrue that if I can helped...and the same goes with me..if one day they told me I have cancer I do not want any of that.....This is my opinion, many like my husband probably they would like to take that change to have a little more time with you love ones...and you know what? the family is the one that suffers more.... I am sorry and do not mean to upset anybody but that`s my opinion.
Ilove all and I pray everyday to end this evil cancer.

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