Everyone’s in denial that our mother is dying -- including her!
By Carol O'Dell, Caring.com contributing editor
Mom has lung cancer. It’s spread, and the prognosis is terrible. My family wants to keep exploring new and alternative treatments that take a lot of money and time, including costly trips. They get mad when I bring up hospice or palliative care.
"You’ve always been Miss Gloom and Doom," my brother actually told me. Mom says, "Well, I might get lucky, you know." I think she mostly doesn’t want to upset anybody, so she goes along with my siblings’ ideas. But it upsets me! Meanwhile nobody wants to talk about the fact that Mom is likely to die within a matter of months. My family acts like they don’t want me to come around, when all I want to do is to really be with my mom with the time we have left.
Many families, especially those with a cancer diagnosis, are in the same place as yours: They don’t want to give up. It's hard. At what point do you face the reality that it’s time to make your loved one comfortable and begin to say goodbye?
Two of the early [stages of grief] (http://www.caring.com/articles/stages-of-grief) identified by Elisabeth Kubler-Ross are bargaining and denial. And they’re where many people start when dealing with the emotions that come with the end of life. Your family members are mad or hurt with you because it’s safe. For now, they’d rather have a “cause” to rail against than to have to face what scares them so very much -- that your mother is dying.
Let them be mad at you, if that’s what they need to do. If you’ve talked with all the doctors and really feel that it’s time to stop “trying” and start “being,” then do all you can to convince your family that hospice and palliative care will make your mom more comfortable and relieve some of the stress you’re all feeling.
Ask if they’ll at least meet with hospice to learn about it, just like they're open to exploring all other kinds of options. Then let the coordinator know what he or she is up against. Hospice coordinators have experience with families coping with cancer, and their calm reassurance may convince yours of the benefits. Hospice isn’t about giving up, it’s more about giving in. It's about allowing the time with your mother to be comfortable, peaceful, and meaningful.
Consider approaching your mom with the idea of hospice first. After all, this is her decision, not theirs, or yours. Share your heart, listen, and emphasize that deep down she knows what’s right for her. Let her know that it’s okay to push away all the voices and her need to please others, and that it's time to decide for herself what feels best.
Then. . . you have to respect her decision. Many folks with cancer fight it to the very end because that’s what feels right to them. Others would really like to stop fighting and begin to say goodbye on their terms but need permission to let go. They’re ready to accept that life is shorter than they planned or wanted, but believe that there’s still quality to their days.
Love your siblings right where they are. They’re scared. They don’t want to lose their mom. Neither do you. It may take time for them to realize you’re not the enemy. But if you approach them with patience and understanding, I believe that most will come around.
Decide to honor your mother's passing your own way, regardless of others’ decisions (even hers). Spend time thinking about her, writing her letters (whether or not you choose to give them to her), going through photographs and videos, perhaps attending religious services meaningful to you and/or your mom.
Give yourself the time and space to really experience this time of saying goodbye -- both its sorrow and its sweetness.
Dear The Practical Expert, Your last line says it all for me. "It is your Mom's life and her decisions are the only ones that count." Thank you, that snapped me out of feeling sorry for myself.
This article helps me feel not quite so alone. Our family is facing a similar situation with our Mom. She suffers from Scleraderma and is in the final stages. For those who don't know about scleraderma it is an auto immune disease that usually begins by attacking the skin & exterior parts of the body. She has lost fingers, toes, & 1/2 of one foot due to gangrene. It also attacks the internal organs. She had a massive heart attack in 2008. The other organs are also affected now. There is no cure.We do not know how long she has left. Her Dr says she could go anytime and that her heart will give out. Both Mom & Dad are in denial right now, at least with my 2 sisters & I. We had a brother who died in a drowning accident in 2000 @ age 39. I thought I could handle this but I am having a rough time. Writing this is now making me feel very anxious, almost panicky. I have a wonderful husband & son to help me deal with this. A big issue is that I also have been diagnosed with an auto immune disease also.(So does my Dad. He has Parkinsons) I was diagnosed with Lupus Oct 2009. So I am afraid of what is ahead of me. I try not to dwell on that. Prayer helps and my faith has actually gotten stronger since the Lupus diagnosis. I am having a really hard time coming to terms with this disease. I have had several really bad flares. I am 53 and my parents are both 73. I also have several migraines a week. My Mom had them and hers stopped with menopause so that is what I am praying for! Another thing that is so distressing to me is that I have been on prednisone for 2 years which has caused me to gain over 100 lb.This has caused all sorts of other problems. I have difficulty walking so it is difficult to get any exercise. Physio is helping. Sorry to go on & on but thank You for listening. Sue
My mother died on the 15th o December (2010). I'm still raw about the progression of her treatment. She was 95 and lived much longer than most bu I didn't and don't feel that was reason to give up on her. She had aspiration pneumonia and a living will The doctors all said that because she likely would never be able to swallow again, the only treatment was a feeding tube. Mother never wnted that and I understand that...can't say I would either. But it seems the fight was abandoned too soon and she was sent home to die under hospice care. I really fel I was a co-conspirator to my mother's murder. So if your siblings have strong feelings I respect them for making it known. i gave in to the doctors, hospice and my sister and now pay theprice with guilt.
I am not sure what to say i am very sorry to hear about your mother. I am new to this site but my problem is i am 21 years old and my mother is only 40 and has copd I don't know what to do. I just need some help dealing with this now maybe we can help each other I need someone to talk to
Carol, well said. For the daughter, for you letting go and trying to change other's thinking, isn't going to happen. Enjoy and savior every minute you have with your Mom and family. As your mom's health fails, be the one ready with the info and resources needed and offer them for joint discussion when the family and your mom will are ready to listen. Be prepared to be the one who gets put in the position of doing all resource arranging too. This is a time to bring family together, not to push it apart because you think differently. Think it but you don't need to use it to seperate people - like yourself. It is your Mom's life and her decisions are the only ones that count.
Good thought - "hospice isn't about giving up, it's about giving in. Thank you for good, sensitive perspective on a difficult issue.