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I'm caring for my mother in law with terminal IV lung cancer.

bastian
Posts: 2
Joined: Feb 2010

Last week the decision was made to not do Chemotherapy. My MIL has IV NSCLC that has spread to her lymph nodes, her brain and now her spine. This was all found a month ago when the tumor in her brain was found. She had brain surgery to remove it and the biopsy said it started in her lungs.

She did not have any tumor on her spine just 4 weeks ago and now with the latest CT scan a tumor has grown so large it has broken her T2 vertebrae. She is doing whole brain radiation and now she started 10 days of radiation to the tumor on her back. The doctor said it was to hopefully shrink the tumor and reduce the pain from the size of the tumor.

She lives alone, about 5 minutes from my job and about 10 minutes when I'm at home. Her son and I have three children and we both work full time - he works 45 minutes away.

She does not want Hospice. I feel they are wonderful but she feels they killed her husband when he had cancer. It's an arguement I'm not ready to have with her right now but I'm just not sure what to expect now with her care. She isn't able to drive anymore. Her legs are very weak. She has the shakes really bad. Her brain incision had to be restitched because it wont heal. She got thrush...

All of this but yet, she wakes up some days and feels fine. By mid-afternoon not so much though.

She doesn't want anyone to move in with her. We talked about shift work to stay with her as things progress but I'm not sure if I'll see things progress. I see her every day and I know she's worse than a month ago, the doctor told her on average with her agressive disease people live 3 months but he said that people don't come with experation dates and she could have much longer or much less, he's not God and doesn't know but will give her the best care he can.

How will I know when it's time to increase our stays with her? She fell yesterday, her legs just gave out. I was worried all night but 3 phone calls and a visit later, I think I was more annoying then helpful. She lays on the couch a lot but for the pain, she sits in the bath tub 3 x a day. She says she'll know when she can't get out anymore and start to ask for help. RIGHT! Just like falling yesterday - it was a shock. How does one know? Just like now, I'm just confused about what to do next with her and her care. She's only 57 years old. Her son is 38 and I'm 34 but let me tell you, I feel like an unsure 12 year old right now.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

I am so sorry to hear about your MIL. I am her age and I think I can understand what she is feeling. I have inoperable lung and larynx cancer (both seperate cancers, not mets) and know my time is limited, it could be 1 year or it could be 10 years, I try not to spend my time worrying about it, instead I try to enjoy each day and spend as much time with my family and friends as I can.

Your MIL knows her time is limited but it is hard for her to give up her independence and freedom, maybe to her this would mean the cancer is winning. Even healthy, older people have a hard time giving up the freedom of living alone and having to depend on someone else for everything. Although I think I can understand how she is feeling it doesn't mean I agree, like you I would be worried about her constantly because of her falling and the thoughts of her in a bathtub 3 times a day would scare me half to death.

Unfortunately, the decision is hers and she sounds like she can be a strong, stubborn woman. The only advice I can give is for you and your husband to sit down with her and have a long talk with her. Tell her how much you both love her and worry about her being alone. Let her know that you won't be able to stop worrying until she has someone there who can help her when she needs help, at least someone there so that if she falls again she can get help immediately. She can still maintain some of her independence but will also have somone to help with the things she can't do alone. Does she have a sister or any other relative or close friend who could stay with her? I'm sure she would feel more comfortable if it were someone she knows instead of a stranger.

I know how easy it is for me to say these things because I am not in that position yet and I hope that when I am I can think of what's best for the people I love as I want to make things as easy for them as possible. Knowing you may soon lose someone you love is hard enough to deal without the added stress of worrying about them being alone 24/7.

I hope everything works out for the best for all of you. Like the doctor said, people don't come with an expiration date, she may have a lot more time left and I hope she is able to live the rest of her life as she wishes to - without adding any undue stress to your family.

Take care and post again so we will know how you are all doing.

Glenna

abfaul6
Posts: 9
Joined: Mar 2010

I am so sorry to read your story. I just wrote mine, and it disappeared, I guess I pressed the wrong button. My husband is 4th stage LC. He started with hospice in Dec. they visit the home. The nurse once a week and the aide helps with his bath 3xweek. I find them very helpful. Perhaps you can eventually find out what holds her back from hospice. The nurse told us that lots of people wait too long. As a result people think of hospice as "a place to die". A person can sign on when they have 6 mos or less left of their life. If they get better, they can opt out of the program. We are glad that we started with them. Can she qualify for any home help? Perhaps the doctor's office has a social services that can assist you. Our Doctor is a believer in hospice. He said he would tell my husband when it was time. When the doctor suggested it my husband was agreeable, after he thought about it. It requires a mental adjustment that he had to make from 'fixing you' to 'pallative care'. Perhaps your mother in law is not ready to consider 'pallative care' yet. Is her doctor recommending it? Have you asked the doctor?
Since the cancer has affected her brain has the doctor said anything about her decision making processes being affected? One other thought, have you tried reverse psychology with her? for example, "mother put yourself in my place for a moment.. what would you suggest"
Hang in there....

abfaul6
Posts: 9
Joined: Mar 2010

I am so sorry to read your story. I just wrote mine, and it disappeared, I guess I pressed the wrong button. My husband is 4th stage LC. He started with hospice in Dec. they visit the home. The nurse once a week and the aide helps with his bath 3xweek. I find them very helpful. Perhaps you can eventually find out what holds her back from hospice. The nurse told us that lots of people wait too long. As a result people think of hospice as "a place to die". A person can sign on when they have 6 mos or less left of their life. If they get better, they can opt out of the program. We are glad that we started with them. Can she qualify for any home help? Perhaps the doctor's office has a social services that can assist you. Our Doctor is a believer in hospice. He said he would tell my husband when it was time. When the doctor suggested it my husband was agreeable, after he thought about it. It requires a mental adjustment that he had to make from 'fixing you' to 'pallative care'. Perhaps your mother in law is not ready to consider 'pallative care' yet. Is her doctor recommending it? Have you asked the doctor?
Since the cancer has affected her brain has the doctor said anything about her decision making processes being affected? One other thought, have you tried reverse psychology with her? for example, "mother put yourself in my place for a moment.. what would you suggest"
Hang in there....

abfaul6
Posts: 9
Joined: Mar 2010

I am so sorry to read your story. I just wrote mine, and it disappeared, I guess I pressed the wrong button. My husband is 4th stage LC. He started with hospice in Dec. they visit the home. The nurse once a week and the aide helps with his bath 3xweek. I find them very helpful. Perhaps you can eventually find out what holds her back from hospice. The nurse told us that lots of people wait too long. As a result people think of hospice as "a place to die". A person can sign on when they have 6 mos or less left of their life. If they get better, they can opt out of the program. We are glad that we started with them. Can she qualify for any home help? Perhaps the doctor's office has a social services that can assist you. Our Doctor is a believer in hospice. He said he would tell my husband when it was time. When the doctor suggested it my husband was agreeable, after he thought about it. It requires a mental adjustment that he had to make from 'fixing you' to 'pallative care'. Perhaps your mother in law is not ready to consider 'pallative care' yet. Is her doctor recommending it? Have you asked the doctor?
Since the cancer has affected her brain has the doctor said anything about her decision making processes being affected? One other thought, have you tried reverse psychology with her? for example, "mother put yourself in my place for a moment.. what would you suggest"
Hang in there....

cobra1122's picture
cobra1122
Posts: 244
Joined: Jul 2009

Bastian, she sound like she is very strong willed, whch can be a good thing. I am 49yrs old and hate to have others help me, but I am in a power wheelchair because of my complicated health status. I was diagnosised with stage 4 lung cancer in 2008, I had SCLC in my left lung and NSCLC in my right lung with mets to the lymphs. Now I am Hospice with the cancer mets to the bone and brain, plus only less than 40% of my heart is working and if you read my bio you will see that I have a very complicated health status.
But you can only try and help her and be there for her, she will make her own decisions and id you battle her on them it will only complicate them. You have to remain supportive and positive no matter what , it will be in the best interest of all.
Try and see if there is any way she would even entertain Hodpice, maybe another provider.
I have nothing but great things to say about our provider, and they have went out side their normal duties in my case.
Try to talk with her and find out what it is she wants, as in treatments, care, and if there is any area she can be moved on, as in hospice.
The Doc was right, we dont have expiration dates on us, I am a 2+yr survivor of the lung cancer alone, I have out lived every prognosis that I have been given and I plan on continuing. I have 3 kids and 5 grandkids I would like too continue to visit, so I try and keep a positive attitude.

I let the Docs try and control the pain as best as they can, and I use home remedies, but there is only so much any of these can do. Your mother in law sounds as tho she has control of her care and refuses to let anyone else do anything she feels unnecessary. Sometimes, it is better to let her decision, as unfavorable as it maybe, stand. after a;; it is her decision to be made.

Prayers and Best Wishes to Your Mother in law, You and Your family,
Dan (cobra1122) and Margi Harmon

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