I needed to write to you, I feel I don't know how much more of Marcy's suffering I can watch, I am numb, nothing feels real..She wants me with her all the time because she is so scared. I am watching her weight dwindle away, her face gets bigger everyday, the tumors on her face and neck are so bad, they cover her entire throat, they are huge and scabby and white. I am not sure how she can look at it grow everyday. She is tired of wearing diapers and having no control of her bowels. Her pain is somewhat under control at the time. I am on my fourth week off from work now, I know I have to go back, but it doesn't seem possible right now. Marcy is staying with my mom and hospice comes in twice a week. Is her face going to swell until it explodes?....her lip continues to get bigger too, my beautiful sister .........I just needed to write before I head back over to my mom's today.. The tears are falling and I don't know anymore......
Michelle

Dear Michelle,
When my father was dying the hospice people were very helpful in helping me to understand the process. They provided other caregiver support services such as grief counseling and education. Taking the mystery out of it was important.

My Dad didn't want to be alone either so I arranged to have people there with him 24/7 (including myself). It was especially hard for me as I saw myself there in his place and death isn't always what we see on TV or in the movies.

Helping your sister is a spiritual gift that will give back to you your entire life.

Michelle,

Don't forget your own health in this. You need time away even if it is a short time. This is an emotionally draining event and you need to be able to recharge.

Michelle,
I am so sorry for what you and your sister are enduring. I always look to God for comfort, I hope you have a good support system in place. It is all that gets me through some days! I will pray for you and your sister.

Debbie

Michelle, I was thinking of something else in your post about Marcy not having control of her bowels. I am wondering out loud if they have given her too much stool softener to counteract the pain med induced constipation? Hard enough for her to deal with everything else, mighty hard to have dignity with a diaper on...Perhaps they can adjust those anti-constipation drugs?

Take care

Mark

Hi Michelle,

Stand Tall!!! You are in a position no one wants any part of. Your strength comes through in your post's. Taking care of your sister is all you can do. Vent here anytime. Take Marks advice and take care of yourself to. Proper eating, sleep etc. You need all the strength you can muster to do the job of a cancer victim caregiver. You have the respect of me and many members of this forum.

God Bless You and Your Family!! Dan

Michelle,

I am so sorry you and Marcy and your family have to go through this terrible time. Gary is right, though. Although it is very hard to watch Marcy suffer, you will be glad later that you were there for her when she needed you most. Have you asked hospice if they can send people in more often? The nurses may only need to come twice a week, but there should be volunteers that can come more often.

Mark is right. You do need to try to get some time for yourself if you can. But I know how hard that is. Heather also wanted me with her all the time and I felt I needed to be there. She really didn't want strangers bathing her, helping her use the toilet, and later changing her diapers. Helping her keep as much of her dignity as possible was the least I could do.

I do hope you are using this time to recall childhood memories and rehash the good times you have had together. Watch some of your favorite movies together, home movies of your family if you have any. Look through old picture albums. Sit and hold hands and "take a stroll down memory lane". Those are the things you will cherish later.

Marcy's face must be terribly swollen if it looks as though it might explode. Have the hospice nurses given any indication of how they feel about the way this is progressing? There are certain indicators they watch for. Like Gary said, they can take the mystery out of much of this, but you need to ask them your questions, both medical and spiritual. And let them know if you need more help. They are there to help not only Marcy, but you and your family as well.

If I can be of any help, please feel free to e-mail me.

Mark,
The bowel problem may be from the meds, but my guess is that it has to do with the metastasis to the spine. With Heather, we had been told that as the spinal tumor grew, it would start to affect her lower body, inc. the bowels. Also her pain got so bad that she couldn't sit up to use the toilet. Once the spine is involved, pain control is iffy. The only way to keep Heather's pain at bay was to keep her asleep, and even that was sometimes hard to do.

Rainbows & hugs,
Rosie

Michelle, I too am so sorry to hear about how Marcie is doing. Remembering my first wife Sharon's battle at that stage, she had trouble supporting herself upright, and had to do the diaper routine. I think what angered her the most was the loss of control over her own life at that point.

We did take what time we could though to take "walks" around the hospital when she was there, then when she was at the skilled nursing facility she even enjoyed being wheeled around the parking lot in her wheelchair. We also just enjoyed sitting outside, watching the world go by and talking about our experiences in the past, her wishes for me in the future.

At this point I can't offer any new suggestions only prayers and support, sounds like you are doing a great job of taking care of Marcie. Just remember, take care of Michelle too. One thing a a caregiver's support group that I belonged to taught us was that we would be no good as care givers if we were too worn out from the process. Most all of us had to learn to take care of ourselves also, both mentally and physically.

Take care
Bob S.

Rosie,

The nurses told us that her face and tongue
are so swollen because the tumors in her face are getting so big that her lymphatic channels are not working. There is nothing they can do. I can't believe a person just has to be eaten alive by cancer, that is what is happening to my precious little sister. She said it feels like she could put her finger right through the tumor under her chin and it would come through the floor of her mouth. She is trying to be so strong, she prays for miracles everyday. She wants her life back..and so do I.
I don't know what I will do without her. How do you move on when you lose the most important person in your life?
I have to go back to work next week. I'm not sure what we are going to do yet. I wish I didn't need money so I could be with her everyday, even though it is so stressful. Also my boyfriend whom I live with just doesn't seem to understand it all very well.
Thank you for being there and listening..
God bless us all.....
Michelle