serious questions, need opinions

[sherry]

Hi everyone and Happy Mothers Day to all.

I hope I am not spoiling the festivities but I need some help with a serious topic. Since I am the compulsive type, I have been giving alot of thought as to what my wishes will be when the time comes to stop treatment.

But I am torn and could use some advice.

My preference would be to be comfortable at home and quite frankly not to linger too long and then be on a morphine drip coma with a catheter. My husband feels that with 2 kids at home, it would be unfair to them to have me die at home. He feels that having them see me dwindle each day would be traumatic and that after I am gone, it would be hard for the kids to be at home where I died, that home would no longer feel safe to them. I can understand his point but on the one hand, I feel like I want to be selfish and have my needs met. On the other, I don't my kids to have to follow every little step of my dying and if I were in the hospital, they could pick when they felt they wanted to come.

I don't even know who to speak to about this. Any ideas? My oncologist was not very helpful in this discussion and made it quite clear that he could only go with the morphine drip approach.

Sorry to bring this up. While I am not yet at the point of stopping treatment, I am surely running out of effective options and I want to have my wishes known quite clearly beforehand.

Any ideas/opinions would be appreciate.

Sarah

[Kristen]

Sarah,
I am sorry to hear that you have come to this stage. I had a friend who died at home, but she didn't have small children. She consulted hospice to help her get through the pain managment and advice her on her wishes and so many other things. I would put a call into them. Some people believe that they are a last resort, when in fact they are there from a year out. I send prayers to you, so that you make the decision that is right for you and your family. God bless. K

[Barbara H.]

Hi Sherry,
My thoughts are with you and I send best wishes your way. In our situation with children, celebrations such as mother's day can be difficult. We all want to be here for our families, friends, and oursselves as long as possible. I went through a few of your prior posts to recap what you have been dealing with. Did you have the chemoembolization? If you did, how did it go.

Another thought... Is it possible for you to consult a large center such as M.D. Anderson to find out what other possibilities might be out there for you? I would be concernced with an oncologist who is not tuned in about your issues or your concerns. It is really not easy to have this when children are involved. Maybe you don't have to give up at this point. There could be options out there or a trial that would take you. (I read your post that it is hard to get into one at this stage.)

On the other hand, it is sensible to have a plan, when or if you need it. I would contact someone from Hospice in your area as a consult to find out what the options are, and how it is for families with children who have been treated at home. The positive for being treated at home is that your family doesn't have to run back and forth to the hospital, which also takes energy.

I don't know the ages of your children, but if the time comes when you have to make a decision such as this, they could be part of the decision, if they are old or mature enough. I received the book "Cancer in the Family: Helping Children Cope with a Parent's Illness" by Sue P. Heiney from the Dana Farber when I became stage 4 a year ago this month. It is published by the American Cancer Society so I'm sure if you called them you they would send it to you. They may also know someone who could speak with you about the decisions you have to make. We also have a Wellness Community in our city. If you have one near you, they are a great resource for the entire family and extended family. You could check online. If there is not one near you, there may be a number to call to get some advice.

Please keep us all informed, and don't worry about writing when you are down. We all have our moments.

Again, best wishes to you and try to enjoy your day as much as you can.

Barbara H.

[Janet/FL]

Sherry
Sorry about your situation but glad you are thinking ahead. Sarah's post should give you some help as to who to contact for further information.
Many years ago I saw films where people were filmed from the minute they were told that they had a terminal condition until they died. It was very interesting. What I remember most about it was a large family where the man, probably the grandfather of the youngest children was dying and he stayed right in the center of the family. His death was very peaceful and the family totally accepted him, and his death. Other people they followed did not have it as easy for them or the family although I don't really remember the details.
For myself, I have very good memories of my Mother who went into a coma and died in a hospital. I was with her everynight, all night. I was an adult.
I have bad memories of my father who died at home also when I was an adult. It was a struggle to get help for him, to take care of him, and it was horrible to see him in pain and not be able to help. He was in hospice at the time.
I know many families who had family members die at home, though none with young children. I am about he only one that I know of that went through hospice that said it was terrible. Most think it was a good experience.
I am sure a lot depends on the amount and quality of help you are able to call on. We needed someone awake all night to be on call. Plus help everyday with baths, food, etc. It was very stressful for me. It was very expensive to hire the help we needed as there was not enough family to help out. I think a lot depends on the feelings of family and friends to make it successful, but hospice should be able to help you with this information.
Today, it seems that the "in" thing is to die at home. Maybe it is for the best--and maybe even in most cases, but I did want to present the other side as dying at home seems to be the way most are now encouraged to go.
Wishing you the best and years before you need to make this decision.
Janet/FL

[sherry]

Thank you all for your kind compassionate posts. You have given me alot to think about in the pros and cons of dealing with the last days at home.

Based on your suggestions, I am going to talk the the local hospice. My main concern ( in addition to my own needs of course ) is to be sure that I do the least traumatic thing for the kids and I have been really torn.

I do have time. Nothing is imminent but my options are narrowing and I want to have this in place before I am no longer able to make the arrangements because then I know there won't be any options.

I am sorry to bother you all on Mothers' day. I hope this wasn't too much of a downer. But I have been thinking of it alot.

Wishing you all the best on this special day for us all,
Sherry

[*_Penny_*]

Happy Mother's Day to you too! Unfortunatey for me this one is a hard one. My mom just died April 27 after a 24 year battle with breast cancer. Since I have just been through this I thought I should respond to your post. My mom really wanted to be at home. She made that very clear. Which was fine with us because that way we could spend more time with her. I had been visiting my mom almost every day, helping get meals together and helping my dad do housework. Although myself and my brothers are adults, my children would go with me when I visited. They always looked forward to seeing Nana and Pap. My girls are 3 and 6. In January of this year mom's onc decided there was no more treatment for her. It was just making her too sick. She had mets to lungs, bone and the worst was the liver. The Dr. suggested we contact Hospice. Not an easy thing to do. Mom was so depressed. She didn't want to die. She was 64 and acted like she was 34. She was always singing and dancing and acting goofy with the kids. She liked to have fun. But she just didn't have the energy to fight anymore. She had always been so strong it was hard to see her weakening. Over the next few weeks we did contact Hospice. They were very nice and changed all her medicines immediately. Before they came she was sick in her stomach and couldn't eat because of the liver mets. She had started to have some pain. When they came and gave her medicine it made such a difference. She felt so much better. She was able to eat again and do a few little things around the house. She even was able to make small meals for her and my dad. They made those last months so much easier for her. What wonderful people they are. They had a nurses aide that would come 3 days a week to help mom with her shower (although she wanted to do it all herself). She was very independant and had a hard time admitting that she needed help with anything. I wouldn't have wanted it any other way with mom. I really tried to take advantage of those last months with her. If I could have moved in I would have. I just wanted to be close to her. And the kids always wanted to go see her. My 6 year old was more aware of what was happening than the 3 year old but it didn't really seem to scare her. I always talked with her about it and answered questions honestly when she would ask. It's not easy. With my mom she really didn't get bad until the last 2 days. And at that point she was sleeping most of the time. She had liquid oxycontin for pain and that would put her to sleep. She said she wasn't in pain though. She was always afraid that she would lay around and suffer with terrible pain but she really didn't. When there's mets to the liver it's quite fast. Which was a blessing. I hope this helps you somehow. You and your family will be in my prayers.

[hollis]

Sherry,
I can't imagine how you are feeling, though I am proud of you for your courage. I hope you will not be faced with this decision any time soon. We will all go, but I just can't imagine how you are facing this. You are my hero.
To many more years.. many prayers for a cure and a miracle for you. Hollis

[Fontaine]

Sherry--

So sorry you've having to think of these kinds of things but glad you have a place where you feel you can ask them without the normal boo ha ha.

In addition to hospice, I'd contact either a child psychologist or one who specializes in death and dying. If you can find both in one person, that would be ideal. I have qualifications in counseling but an far from an expert with younger children or with end of life issues. Personally, I'd want input from more than one "expert" in order to feel I was making the most informed choice that I could.

If your kids are 12 or older (or close), I'd certainly recommend talking to them directly about it and asking them how they feel. Often young people experience anger when decisions are made for them when they're actually old enough to make them. It becomes very disempowering for them. Young children are a different story but I'm not sure where the age line should be if less than 12. You didn't say in this post how old they are.

Just because your conventional treatment options are about exhausted hardly means that all your options are. I just finished watching the video of "What the Bleep Do We Know" and it sure changes ones thinking about the nature of reality and health. (I'm taking an alternative medicine course this quarter for my doctoral program.)

There are many, many options that are likely available to you, some of which you may have had no idea even existed. Or maybe you do but from your post, I'm assuming not. Some of these literally work "miracles," depending on factors we have little understanding or knowledge of. The good news to them is that they offer little to no risk. If it truly is your time, by taking hold of everything you can in the meantime, your remaining time should escalate tremendously in quality. (Considerable solid study data to validate this.)

Allopathic medicine is hardly the only kind of effective treatment available, although it's the one we know best and tend to think of as the only one. It isn't. Who knows, maybe you're at the medical place you are to open your mind to new possibilities. That may be the silver lining to a cloud that seems totally dark. It sure helps me to think of it that way. (Also recommend Dr. Andrew Weil's book, Health and Healing for an overview of alternative therapies and some fascinating exploration of the mind/body relationship which is also discussed in the movie mentioned above.)

I wish you the very best of everything and a surprising, enlightening, and full recovery!