when their will is lost

advocate4mom

This is my first post to the caregivers section - my mother (early 70's) has been battling an aggressive uterine cancer (discovered at stage 3C in 2009). Despite the most aggressive treatment (surgery, chemo, radiation), this past summer it had spread to her lungs and liver. Different chemos have done nothing to slow the disease which is now also in her bones and various other places. She requires oxygen, can barely walk, is losing weight/muscle mass rapidly (despite medicines/eating more) and is nearing the point where chemo may be doing more harm to her body than good.

To date, I have been the perpetual provider of hope and optimism (and really good food), even though I knew the long term statistics weren't great. This worked well because my mom has always been a very strong and positve person even in the face of the worst circumstances. As the disease advances and reality is physically obvious, my mom has by her own admission lost her will. My glass is half full attitude no longer feels right.

I guess my question is what is the best way to communicate with a loved one who is clearly dying and knows it - I'm a born optimist and problem-solver so it's unnatural for me to stop 'cheering' my mom on. It's so cliche to say 'never give up', but at what point to you accept the reality and go with it. Advice/experience from others who have gong through this would be most welcome.

Barbara53

the time for truth
In some ways, I could have written your post. I've been helping my mother for two years, but I never lied when she and other family and friends were way optimistic about where her 3c/4 ovarian cancer was heading. I either said nothing, or reassured her that whatever path she was on, I would be there for her (I'm the only daughter), and that no outcome of any test mattered a whit to me. Like your mom, mine is failing now, and I think she appreciates my openness to what she needs. My brothers and I spoil her rotten.

It helped me a lot to read Final Gifts by Maggie Callahan, a little book that takes you to the heart of death as a process. It's not a failure, but a change in destination. If our moms are lucky, they will get to be themselves to the end, cared for by people who love and understand them.

Do you have hospice yet? Sooner is much better than later, because they can help put meaning and dignity into this process. Good luck.

luz del lago

Barbara53 said:

the time for truth
In some ways, I could have written your post. I've been helping my mother for two years, but I never lied when she and other family and friends were way optimistic about where her 3c/4 ovarian cancer was heading. I either said nothing, or reassured her that whatever path she was on, I would be there for her (I'm the only daughter), and that no outcome of any test mattered a whit to me. Like your mom, mine is failing now, and I think she appreciates my openness to what she needs. My brothers and I spoil her rotten.

It helped me a lot to read Final Gifts by Maggie Callahan, a little book that takes you to the heart of death as a process. It's not a failure, but a change in destination. If our moms are lucky, they will get to be themselves to the end, cared for by people who love and understand them.

Do you have hospice yet? Sooner is much better than later, because they can help put meaning and dignity into this process. Good luck.

Barbara's post is right. My
Barbara's post is right. My love was diagnosed with extensive sclc on Apr. 28, 2010. We were given a ball park diagnosis, 11/12 months give or take. The poor dear never was able to accept that he would die of this. His fantastic "will" did keep him going until 3 weeks before his passing, in which the worst was 3 days before then. I was the one with the realistic expectations, mind you, not that I didn't ask God for a miracle each and every day! He passed on Dec. 20, 2010, not even the 11/12 months. The days before his very apparent decline, I knew I felt what was happening, and I began to soothe him with love, caresses, care and the medical attention that he needed and that Hospice had given instructions for. I also began to read to him from his Bible, recall stories of our 29yrs. and 11 months of our lives to him. Telling him what a wonderful life we have had and how blessed I was to have been his wife. Through soft whispers, as his voice became very weak, he continued to tell me that he loved and adored me. The words, "you are dying" never were spoken. The day before, he had become restless, as if he were fighting with all he had left, and I held him and told him that if he needed to go, that I would be ok. That I would be so heartbroken and miss him so much, but to go if that was God's will. I had one request, I told him to save me a place right next to him. He mumbled, "I am not going anywhere". I said ok, but just know how much I love you, and if you have to, I'm ok. One the morning of the day he passed, he had much pain and Hospice came in to take over, allowing me to be his wife, allowing me a nap to rest for what was to come and knowing that he was in good hands. Our loved ones were there to love, care, pray and support us. After he was administered strong, extended pain relief meds, he really never spoke again, but did respond lightly to my voice and touch.

Yes, do arrange for Hospice. It takes a few days for paperwork and it is a good idea to have their loving care and supplies and equipment at the ready, so that your wonderful mother not have to wait on anything should she need it. Also, to be able to get to know some of the staff that will attend to her and to the family.

My love passed at home, but we were given the option to go to the Hospice unit. I decided, no, he would leave this earth in the comfort of his own bed. But I know that it could be different for other folks. Do what is best for your mom and the family. When the time comes, your peace is important, too. It will be emotional for all, and a quiet, peaceful, loving place will make this transition time easier to cope with.

My best wishes for a time of love and joyful recalls of the best times in your lives with your moms. I pray for courage and strength, that you may give all the love that they will need, and that in giving you receive the love that you will need through these times.

Lucy

skipper85

Death Is The Beginning Not The End

I'm so sorry to hear about your mom. If she is a religious person she may want to talk with her pastor. Prayer can give you and her strength to face the days ahead. Just tell her how much you love her. Assure her it's okay for her to start her her new journey. Assure her you'll be okay. Ask her if she has any unfinished business whether it be making peace with someone or delegating who will get her jewelry or prized possesions. My husband had a whole list of things he wanted me to do for him (like winterize the lawnmower, sell his truck etc.)

My prayers are with you and your mom. I wish her peace.

Also, know you are not alone. We are all here for you.

(((MEGA HUGS)))

Skipper

DitZy2

luz del lago said:

Barbara's post is right. My
Barbara's post is right. My love was diagnosed with extensive sclc on Apr. 28, 2010. We were given a ball park diagnosis, 11/12 months give or take. The poor dear never was able to accept that he would die of this. His fantastic "will" did keep him going until 3 weeks before his passing, in which the worst was 3 days before then. I was the one with the realistic expectations, mind you, not that I didn't ask God for a miracle each and every day! He passed on Dec. 20, 2010, not even the 11/12 months. The days before his very apparent decline, I knew I felt what was happening, and I began to soothe him with love, caresses, care and the medical attention that he needed and that Hospice had given instructions for. I also began to read to him from his Bible, recall stories of our 29yrs. and 11 months of our lives to him. Telling him what a wonderful life we have had and how blessed I was to have been his wife. Through soft whispers, as his voice became very weak, he continued to tell me that he loved and adored me. The words, "you are dying" never were spoken. The day before, he had become restless, as if he were fighting with all he had left, and I held him and told him that if he needed to go, that I would be ok. That I would be so heartbroken and miss him so much, but to go if that was God's will. I had one request, I told him to save me a place right next to him. He mumbled, "I am not going anywhere". I said ok, but just know how much I love you, and if you have to, I'm ok. One the morning of the day he passed, he had much pain and Hospice came in to take over, allowing me to be his wife, allowing me a nap to rest for what was to come and knowing that he was in good hands. Our loved ones were there to love, care, pray and support us. After he was administered strong, extended pain relief meds, he really never spoke again, but did respond lightly to my voice and touch.

Yes, do arrange for Hospice. It takes a few days for paperwork and it is a good idea to have their loving care and supplies and equipment at the ready, so that your wonderful mother not have to wait on anything should she need it. Also, to be able to get to know some of the staff that will attend to her and to the family.

My love passed at home, but we were given the option to go to the Hospice unit. I decided, no, he would leave this earth in the comfort of his own bed. But I know that it could be different for other folks. Do what is best for your mom and the family. When the time comes, your peace is important, too. It will be emotional for all, and a quiet, peaceful, loving place will make this transition time easier to cope with.

My best wishes for a time of love and joyful recalls of the best times in your lives with your moms. I pray for courage and strength, that you may give all the love that they will need, and that in giving you receive the love that you will need through these times.

Lucy

Touching
Lucy your post brought tears to my eyes. I hope when it is my sisters time I will handle it with the grace and love you did. What a gift to our loved ones that we can give to them, leaving this life feeling the love we have for them.

God bless everyone that is dealing with this horrible disease.

MCKMNL

I have given this this same
question ALOT of thought, and I ended up coming to this conclusion, as hard as it is to say it, I will let my dad be his own judge, and jury on when he has had enough, and for this simple reason. My dad like your mom is very strong, and I have never seen him give up at anything, so I know if the time comes that he feels it is time to stop, that he truely has given his all to the fight of his life, I want my dad to have a QUALITY of life, and one that is tolerable, and enjoyable. I would rather see him GO when he sees fit, or when his quality of life is no longer the dad I know. ie: Weak, not eating, and just sort of existing,. My heart breaks for everyone here. What we go through, what our loved ones with cancer ae going through. Please know you, and your mom are very much in my thoughts and prayers.
MISSY