Dear Denise,
My mom has cancer and the end is coming. I have been with her over the past year and even though the main adrenal tumor is over 18 cm and all of her lymph nodes are cancerous, she has not had ANY pain or really any symptoms. I put this in the true miracle category and know a blessing when I see one. She hasn’t really dealt with any of the issues of having cancer.
However, the time has come. In January, the doctor decided to continue the Faslodex for 3 more months because she was symptom free, but the blood markers were saying it wasn’t working anymore. Just the other day, she finally wanted me to look at her under her arm to see if I could see anything because it has been hurting, for at least a month. It has started. She also is not eating as much because the tumor is pushing her stomach closed.
She doesn’t deal with emotional issues very well and so the subject of dying hasn’t even come up (except for the will, it is done and all of the legal issues are taken care of). I know she doesn’t want to deal with it, but she isn’t even wanting to tell the doctor about the pain and lack of appetite. I know that is where I come in, but how can I bring it up to the doctor without betraying her and making her feel like she is nothing? Where do I even start to breach the subject about the end and what she does and doesn’t want? She is just barely realizing that this isn’t going away. Thanks, your website has been helpful. I just am blown away right now about the changes and can’t think totally straight right now.
What an upsetting time for both of you! During times like this, it can seem hard to think straight. You want to do what’s best, and that kind of pressure can be overwhelming.
Your mom has already let you in by showing you her physical pain. She trusts you, she wants you to know what’s going on. Continue from here. Ask her: What does she think about the recent news from the doctor? Listen to her answer, then ask her: How can you best support her? What expectations does she have for you? Then, share your worries: You worry about her pain. You worry that she isn’t comfortable. What’s the best way for you both to discuss the pain and lack of appetite with the doctor? Or, would she prefer you to discuss this alone with the doctor?
I also would suggest asking her if you both can discuss Hospice as an option with her physician. The idea of Hospice may be very upsetting for her–it’s okay. She has every right to be upset. Let her know you understand how tough this is. Tell her that you would like to know more about Hospice so she can decide if it’s right for her. If she’s uncomfortable learning more, ask if can you do initial research for her and report back to her about what you’ve discovered. Her physician can refer you to local Hospice organizations that you can call to learn more about the services.
Think of your discussion as the first meeting to develop your team’s plan. Your goal for the first meeting is to determine how to discuss concerns and Hospice with the doctor. Future meetings will build on this one. When you’re unsure about a next step or a decision or a worry, you’ll know it’s time to call a meeting with your mom (and others, such as family members and health care professionals, as appropriate). And, if discussions become too much during a meeting, you can always conclude the meeting for the time being and reschedule for another time.
I believe it’s important to include Hospice in this first meeting between you and your mom. Hospice can be a wonderful support for you and your mom; families often wait too long to really benefit from the program simply because they fear discussing it as an option. If your mom declines Hospice as an option, that’s okay. I think it’s important that she’s informed and then makes her decision. She will be afraid, but let her fear walk behind you, rather than in front of you.
This is a very special time for you and your mom. You are doing all the right things. Continue to follow your heart, it will lead you well.
Stumped by an on-going struggle? Searching for meaning in your journey? You’re not alone! Family caregivers ask Denise M. Brown, Professional Caregiving Coach and Editor and Publisher, Caregiving.com, for her insights and suggestions to their caregiving conundrums. Have a question for Denise? Just e-mail her. Denise will do her best to answer questions within 24 hours.
If you or your care recipient are in a crisis, we urge you to call a health care professional immediately for assistance. Denise only provides general insights about general situations. You should always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.
