Caring for my husband with late-stage lung cancer

Posted by turtle115 @turtle115, Mar 25, 2020

My first time here. My husband has lung cancer that has spread to liver, stomach and pelvis. Originally showed spot on lungs and liver August 2019. He is now 78 and has been a stroke survivor for 20 years...aphasia, walked with cane, no use of right arm. We decided not to proceed with cancer Treatments. But after Christmas things took a turn for the worse....he can stand but Can only move a little to the wheelchair bed or chair. We had CT in January which showed lung cancer, liver, stomach and pelvis. He is DNR so we wait. He is home and Hospice comes here twice a week. He has had a sore on his chin for over a month and recently, about the size of a dime, on the back of his head. He is not a complainer..... he is coughing up thick, white phlegm a lot now. He also has many tumors on his back...more every day, not open soreS but I see And feel them and some getting larger. Any one have thoughts that the sore on his head and face that maybe it has spread to the brain? How long can one survive like this? He is ready mentally and spiritually to leave this earth.....it is the waiting and watching him lose weight that is so hard. Any thoughts, help or prayers will be appreciated.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Merry, Alumni Mentor | @merpreb | Mar 25, 2020

@turtle115- Cancer is terrible and it must be awful to watch your husband's decline. Have you asked Hospice or his doctor what the bumps and the sore are?

Teresa, Volunteer Mentor | @hopeful33250 | Mar 25, 2020

Hello @turtle115 and welcome to Mayo Connect,

I'm so sorry to hear about your husband's suffering. I know it is difficult for him, and also difficult for you to watch this journey he is taking right now.

As Merry said, I'm wondering if you have asked the hospice nurse about these bumps? I found that hospice is very good at an understanding regarding the late stages of the disease and they might be able to explain it to you.

I would also like to invite you to another discussion on Connect dealing with advanced cancer. Here is the link, https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/. Please take a look at this discussion group and post about your husband's situation there as well.

We also have a Caregiver's Group. Here is a link to that discussion group, https://connect.mayoclinic.org/group/caregivers/. You will find many members of this group who are dealing with the same experiences and emotions that you are having now.

Do you have a support system in place for you and your husband? I'm thinking about family, friends, church, etc.?

turtle115 | @turtle115 | Mar 25, 2020

In reply to @merpreb "@turtle115- Cancer is terrible and it must be awful to watch your husband's decline. Have you..." + (show)

Yes, hospice says probably the cancer.

turtle115 | @turtle115 | Mar 25, 2020

In reply to @hopeful33250 "Hello @turtle115 and welcome to Mayo Connect, I'm so sorry to hear about your husband's suffering...." + (show)

Yes, good support. We FaceTime our 4 children every night to say goodnight. We figured if it be his last night the children would find comfort in knowing they talked with their father "last night". We are living in an Assisted Living facility so we have a lot of people around.

Merry, Alumni Mentor | @merpreb | Mar 26, 2020

In reply to @turtle115 "Yes, hospice says probably the cancer." + (show)

@turtle115- Are you able to get any rest or sleep at night? It's important that you try and keep up your strength. Perhaps even get out for a bit of a walk to clear your mind. I think that since your husband has a DNR and hospice then all testing has stopped so you might not know if there is any cancer in his brain. It's a great idea for face time with your kids. Are they far away?

Teresa, Volunteer Mentor | @hopeful33250 | Mar 26, 2020

In reply to @turtle115 "Yes, good support. We FaceTime our 4 children every night to say goodnight. We figured if..." + (show)

I'm glad to hear that you have so much support in place, @turtle115. Your children sound like exceptional adults in caring for their father and calling on a regular basis, how fortunate you are!

I'm concerned about you, though. Are you giving yourself some breaks from your husband's bedside? Are you able to spend time with others?

Will you please share what you are doing for your self-care?

rmftucker | @rmftucker | Mar 26, 2020

Prayers are with you at this difficult time.

Scott, Volunteer Mentor | @IndianaScott | Mar 26, 2020

Hello @turtle115 I am so sorry to read of your husband's health condition. I am Scott and it is nice to e-meet you here on Mayo Connect. I was my wife's caregiver during her 14+ year war with brain cancer. While I know each patient and how they are effected by cancer is unique, I'd like to share a few things I learned along her path.

For her final 14+ months she was in home hospice care and it was a godsend for her for sure! It was pretty much the first time she truly received patient-centered care and her team were amazing! I always made a list of questions I had between the nursing visits and also a smaller list of questions I asked them to take to the MD who was the Medical Director of our hospice, who was also an amazing person.

I do remember with my wife bedsores could spring up almost instantly and were tough to control/manage/maintain. This was especially true once she lost she lost the last of her ability to move independently at all. I did find something called Mepilex dressings as the best for working with her sores.

My wife was also DNR so our focus at all times was on making her time the best quality we could vs. looking at any measures of quantity. Not always easy, but it was her desire. I did a lot of nonstop talking at her bedside for hours on end just to fill the silence and let her know I was with her. (She couldn't manage any TV, radio, music, etc. due to her condition.) Sometimes I read entire magazines to her -- even the advertisements 🙂

Just a couple things that, as I said worked for us, but might not be appropriate for others.

I will be hoping for the best for your husband and for you!

Strength, courage, and peace!

Colleen Young, Connect Director | @colleenyoung | Mar 29, 2020

Hi @turtle115, we haven't heard from you for a few days. I just wanted to check in to see how you are doing. Don't feel obliged to respond. Just know that you have a whole virtual community of people thinking about you.

turtle115 | @turtle115 | Mar 30, 2020

In reply to @colleenyoung "Hi @turtle115, we haven't heard from you for a few days. I just wanted to check..." + (show)

Thanks for caring. I had to call hospice last night.....severe pain in his head.....forehead area. Increased morphine and gave another pain medicine earlier than I would have. Took about 15 or 20 minutes and pain eased. Hospice said the cancer has probably spread to his brain. Better today. Right now it is to me like the Coronavirus....Wish we knew when the end would come. I don't want nor want to see him suffer.....All in God's hands.🙏

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