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Mother has stage IV lung cancer... not sure what happens next

Posted: Feb 4, 2010

My mother was diagnosed the last week of December with lung cancer that has spread to the liver, adrenal glands, and brain. She had complications such as left-sided weakness, internal bleeding (last week transfused with 6 units of blood) and also has a blood clot in her leg. The oncologist pretty much said he couldn't treat the cancer any longer because of the possibility of more internal bleeding. My parents feel like they've just been written off and that my mom is supposed to just go home and die.

My poor dad is so stressed. He can't sleep and I don't think he is eating. I'm scared his health is going to deteriorate. My mom needs round the clock care, but health insurance doesn't want to pay for home health care and nursing home expenses would also be out of pocket.

I am 4-1/2 hours away, but I've made plans to be there at least 5 days a week, then will have to come home to check up husband and children some. I am very torn between 2 places.

If you made it this far, thanks for listening. I really have no idea how to help them other than be there. I'm wondering if there are any resources out there for people/caregivers of the terminally ill. God bless.

;

Hospice - Sam

[ In Reply To ..]
I would look into hospice programs in their area. Hospice can be a Godsend. Once cancer has metastasized as much as you say, I would be preparing myself. God bless you and your family.

thank you Sam... - Need a sympathetic ear

[ In Reply To ..]
I know hospice has been looked into. Do they provide around the clock care?

You are right about preparing ourselves... it has just happened so fast that we haven't had time to come to terms with it...

Thanks again for your response.

Hospice is exactly the answer, know a family - who used this

[ In Reply To ..]
If this family could pay, then could pay what they could, if not the Hospice was there 24/7 if they needed them at no charge. The family had nothing but praise for them. Please get in touch with them. They will be your caregivers and also your comfort. I hear they are just nothing but grand and your father could really benefit from this.

thank you for your reply... - Need a sympathetic ear...

[ In Reply To ..]
although I hate that other people have experienced this, its comforting to know that others know what we are going through.

Hospice provides what the family needs and - wants, you tell them

[ In Reply To ..]
It was my DIL's family that used this. Her aunt had throat cancer 10 years ago. It came back really fast and spread extremely fast. I know this family well and if there had been the very first thing to not like, they would tell you. Instead of that all I heard were the praises about Hospice. The family, by the way, unable to be paid. They also cooked food, cleaned, etc. I am not sure each one would offered such detailed things, but the answer is always no until you ask. Wishes your way.

Stage IV - Gem

[ In Reply To ..]
Hospice is usually available and will go along with a visiting nurse association to work with your family. Our situation was there were no finances in my mom's name so they never got a bill. Be prepared though to make the patient a DNR as Hospice will only help you when the time comes. They also have grief counseling, will give you other services if you qualify such as a home health aide, etc., and they are usually very helpful. Prayers to you and your family. They will make the patient comfortable with meds ordered by the doctor and hopefully it will be peaceful. Some are alert until the end and it's a spiritual experience; others are just comfortable and resting. They will be good to the patient and the family. Look into all services available and take advantage, question, question every state agency. God Bless.

I worked in an oncology office for several years - MT4now

[ In Reply To ..]
Her oncologist should have set up the hospice care when he "discharged" her from care. Hospice will not be able to step in if she is receiving any type of curative treatment. Only palliative treatment is allowed. If the office did not set it up, call them immediately and have them make the arrangements. You have enough things to worry about.

Secondly, contact your local American Cancer Society. One of the many things they may be able to help with is offseting your travel expenses to be there with your mom. If they do not handle this, you may need to contact the one in your parents' area.

Lastly, contact your clergyman and/or your parents'. In addition to the emotional support, often times the church will help with noncovered expenses. Your dad may also benefit from this emotional support during and after the passing of your mother.

God bless you. I know well what you're going through. I hope you can find comfort in knowing that she is going to a wonderful pain-free place.

More on the above - Gem

[ In Reply To ..]
My sister was diagnosed at age 59 with Stage IV and had brain mets. She really was never in agony with pain. Her pain meds and sleeping pill worked for her. You can go on the Dana Farber Cancer Institute web site. If she is well enough to be up and about (for ideas) I used to bring my sister nice night gowns,robe, scarf. They had a scarf with a little hair sticking out the front which she wore out to chemo. It sounds like a dark place to be but you can make it quite spiritual and keep it light. I used to give them gift certificates to a restaurant that did takeout for her "good" days. I rented movies free at the library. Hospice nurse does not stay at the home for more than an hour or so, but they usually want to rest most of the other time and the meds allow them to sleep. Sometimes they have hospice volunteers who will stay with the patient to give the family a break, depends on your area. No case is the same so I won't go on about it. Glad you have a place to come. Some people in here are very nice to talk to. Hang in and the end of life doesn't have to be all bad; it can be peaceful. All my best wishes. Keep us posted. I get a free magazine called "Cure" and find it helpful for information. In our profession this is not an easy road to take, we know too much but with family you draw a blank.

I am so very sorry - Vikefantam

[ In Reply To ..]
Not a lot truly frightens me. I'm a roller coaster daredevil, carry a gun, etc. One of my biggest fears is how I'm going to react when my parents go and when my dogs go.

My dear neighbor has a second bout of breast cancer, this time stage IV. She and her husband live next door to his moher and I worry about the husband, with his wife being so sick and his mother in her upper 70s, not in the greatest health.

I hope your husband and children are supportive. If not, you need to sit down with them and tell them how you feel and that you need them to support you. They will have to take care of themselves. You need this time with your folks.

My FIL had been in and out of the hospital so much (he refused to take care of himself for the last several years of his life and probably would have lived another 5-10 years if he had - he was 82). He was in and out of the hospital a lot. There were a few times I was sure he wasn't going to make it but he pulled thru. Well, he had pulled thru so many times, when he was in the ICU for the last time, we thought he'd pull thru again. He didn't.

My husband was on his way (an hour drive) to see him because they said it didn't look good, and I called him for one reason or another while he was on his way to the hospital, but couldn't understand what he was saying. Finally, he caught his breath (he had been crying) and told me "Dad didn't make it". I remember the shock. His parents are like family to me and have always been so kind. I was getting ready for work and called immediately to report off. I didn't even change work clothes. I drove there in record time (we were required to wear navy blue scrubs where I worked and it so happened the ICU nurses wore the same, so when I showed up, before I even said anything, they said "Oh good, they finally sent our LPN up". I told them who I was looking for (he was gone by this time). The sepsis finally got him. The first few days aren't quite so bad because you're so busy - funeral planning, etc. Lots of family around. It's after that when you're left to deal with the loss, you need comfort yourself but your family needs it too so it's a catch-22. Be there for your dad as much as possible. I wouldn't hesitate to have him come live with me if my mom died but he'd freak out at the thought of living with animals in the house. He's just that way.

1 year and 3 days ago, my friend/neighbor's husband died. She coped very well by staying busy and not dwelling on it. She even has a new "friend" in her life now.

I don't know what I'll do when that time comes. One thing I don't advise is when the funeral is done, don't stay and watch them lower him in and close the lid. I did, to support my husband, and it was so sad. My FIL didn't have an easy life. He was born in Bosnia and ended up living in Germany. As a young adult, he was married and was recruited into the Third Reich of the SS. Sadly, one of his brothers actually did join the Third Reich/SS, so nobody in the family talks to him anymore and we don't even know or really care if he's alive, considering his decision. My MIL, FIL and their families spent their younger years on trains, going from refugee camp to refugee camp, often seeing rebels standing there with swords held high in the air, with 6 or 7 decapitated heads on the sword. It was rough. They escaped to Argentina, then came to the U.S. He had been thru so much.

I know it's hard to compare dogs to humans, but when I had to put my rescue down last Sept. (I had him around 4-5 years), I just let it out. I cried for days. I still cry when I think about it but though it never completely heals, it does get better. When my other 2 go, I don't know what I'll do. I've had them longer and an more attached.

I've often thought how one parent would react when the other died. My dad is a very strong person, at least on the outside, but would need lots of love and support. My mom would drug herself to oblivion with her Valium and Darvocet and we'd probably have to drag her around. I'm not saying that to be mean - I just know her. And if that is how she has to cope, fine. I'm there for her.

Honey, if you believe in, or have faith in God, pray. Everything is God's will in God's time. And certainly you can ask him why. But you have to be listening when the answer comes. We often don't agree with his decisions but I believe He has a reason for everything. I lost my grandma to SLE when I was 7 and it devastated me. But I can understand why God would call this good woman home.

There's a book called "90 minutes in Heaven" - Piper is the author. That might bring you some comfort.

Hospice is a great resource. If you can, it might help to get counseling. Even though my childhood was rocky, my parents did the best they could and I will grieve to no end when they die. And I believe only God can pull me thru.

Please keep us posted. I'm lucky my parents (and 2 dogs)are still alive. I think the biggest thing is support.

Think of the good times you had with her, some of her funny quirks, trips you took, your childhood. Include your dad if you can. Be together and love each other. My advise is don't let it completely consume you while she's alive. If she feels good enough, try and do some small things with her - play cards, do a puzzle or whatever.

Again, please keep us posted. My thoughts and prayers are with you. God bless you!

I saw a quote today and thought of you - Vikefantam

[ In Reply To ..]
The quote comes from 90 Minutes in Heaven, written by Rev. Don Piper.

"To be absent from the body is to be present with the Lord to those who love Him and know Him". That quote may only bring a small amount of comfort or may not bring any at all but I do believe in Heaven and I believe we're whole again, no ailments, our family and friends are there and hopefully our pets. And if dogs go elsewhere, that's where I want to be. :-) I hope we recognize people as they were on Earth. There are tons of people I'd like to talk with. Could you imagine just being able to meet *anybody*?

I know you're worried about your dad. When my mom had a heart attack and had to stay in the hospital, he asked me to come stay with him until she came home. I was really surprised. He has always been so strong (he even states he only allows himself 1 day to grieve when a relative dies - yeah, he's a tad rigid) but he needed the support.

I think just by you being there as often as you can, you will help your dad. And he understands you have another family to care for. I'm sure he's torn, knowing how badly he wants you there but knowing also that your family needs you. You are a great daughter and you sound very thoughtful.

Maybe you can look into his interests and get him involved in a gun club or Bingo, an art or cake decorating class or whatever. Maybe he likes to hunt.

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