What I Wish I'd Known...

 Gosh, so many things fall under this category, but there's one that really stands out when I look back on my time caring for my dad. The main one is that I wish we'd called in hospice, or palliative care, much sooner. We were really hung up on the idea that you don't call hospice until you're ready to say the word "dying," but then when we did that turned out not to be the case at all.

It turned out you can call hospice any time after getting a "terminal" diagnosis, even if it's vague and you don't know how much time the person has. And the hospice nurses were so knowledgeable and helpful; they had all sorts of suggestions for making my dad more comfortable that I wish we'd been given much sooner. Plus they had access to medications, particularly painkillers, that we'd had trouble getting from my dad's doctors. And it's all covered, financially. I'd tell anyone caring for a cancer patient to at least consult with hospice - it's worth it.

I would say now, after caring for my mom and watching her lose her battle is TRY, as hard as it may be, to try to focus less on the "caregiving" aspect (i.e. "its time for meds, what do the latest tests say, etc.) and try to make sure you spend time spending time not talking so much about the disease, and more time being there emotionally, as a friend, talking about all sorts of things other than what is happening.  I know I didnt word this properly, and I know its part of caregiving to worry, but I look back now and feel like I was focused so much on the disease itself that I missed out on just enjoying what little time we had left in the end. 

I hope even though this doesnt make a lot of sense someone gets something out of it.

 Anonymous, I know exactly what you are describing having lived it myself. I was just thinking about this this morning and so wanted to chime in that I think it was very well put and I'm glad you brought it up. Your focus narrows to the battle --  and while that is useful on one level, it becomes too easy to lose sight of the bigger picture. I DO wish I'd known this going into it....

I hope this post is not out of place. My wife and I recently began caring for her ailing parents; we moved in, remodeled, cleaned, cleaned, cleaned and today my mother in law is going to get the results of her chemo treatment. I'm not a very, uh, empathetic guy, but I am looking for some resources on ways to make sure my wife is well taken care of during all this (father with emphysema, mother is a stroke victim and recently diagnosed with lung and some sort of node cancer.)

If anyone has any tips for me (web pages, books, dirty jokes to keep my wife's spirits up ) can you share? Most of the web pages/resources I found deal with taking care of the one with the illness or young children of the ill, not adult children who are also caregivers. I just want to keep my wife as happy as possible during all this.

Thanks in advance,

Troy

My 72 yo Mum was dx with late stage breast cancer in Sept 07 and secondary cancer was dx August 08. I came back to visit her in Dec/Jan 07 and she was doing well with her chemo sessions then. I came back this time upon hearing her prognosis and she was completely changed. After mastectomy of her left breast and 28 sessions of radiation, 2 weeks later she was showing signs of problems. A week after I arrived, she went for her 1st cycle 2nd line chemo and 3 days later she was hospitalised for 8 days with mucositus. It was 48 hours of touch and go and 72 hours later, the doctor told me it was terminal. I cried in the stairwell and came back to the ward with a smile on my face. The doctor told me it was not the length of time that is important but how we spend the time with Mum. It has been 3 months and I have not looked back. Now I will be going back to my own family leaving my Mother in the care of my brothers and their families but every minute I spent with her has been inspiring. She has been through so much and she never complains - she did not want me in her kitchen because that has been her territory for the 30 years I have left home - and this week - she let me in her kitchen. When she had mucosities and could only take in fluid she refused to take in any food I had blended but in the last month, she is blending fruits and sharing it with us! I cannot change her in 3 months but she has changed in 2 months just to make me happy. I love you so much, Mum. Don't try to change them - your time of caring is short - be there for them, listen to them or just hold their hands. They know your love and will show them when they feel better.

I think what makes caring for someone with cancer -- or trying to help a partner who's caring for a parent with cancer -- so challenging is the ups and downs you describe. It's such a crazy good news/bad news cycle; one day they have a treatment such as surgery or radiation or try a new drug and it seems to be working, and you feel optimistic. Then at some point there's bad news or they start to have horrible side effects and you have to switch gears and cope with that. I'm so sorry to hear about your mum, but how inspiring that she's blending herself drinks and doing her best to cope with this new situation, and that you're helping her.

Hi. I skype my Mum twice today and twice yesterday and she is looking so much better. I was only by her side 48 hours ago but now 7000kms separates us. My Mum is still battling her breast cancer which has metastasized but today she is looking forward to finishing her 2nd line and having a holiday with her grandchildren. It has been a harrowing journey but we can see the light - the oncologist has told us it is terminal but that is only a word. When i see her today - she is a picture of health and happy spirit. It is hard to imagine only 3 months ago - she was undergoing chemo and hospitalisation and we were all beside ourselves with worries. Finding a good team is so important because they keep half the worries away. Caring for loved ones with cancer is heartbreaking - i spend hours googling - frustrations set in when there is no answer and the tears start falling. But in all that time I never cry in front of my Mother, never in front of my brothers. We don't talk too much about the C word - I am the one who question the doctors and write down notes to further research on meds and symptoms. I feel that knowledge is power and I have no fear when I know I am ahead - when I am not - i google and I come back with more. Every med given gives new symptoms and there is more heartbreaks - that is why a good team is very supportive because you know help is close at hand. I live in Australia and my Mum is in Malaysia. I found Caring.com while googling looking for ways to cope with mucositus, low white blood count and thick saliva. Staying positive and taking it one day at a time is important - no two chemo cycle is the same. We got complacent because Mum handled her 1st line 6 cylcles with aplomp - when she trip and fall over with 1st cycle 2nd line - we were shaken to our cores. So stay positive and alert and know that help is available.

Welcome charbo, and thanks for sharing your experiences! You and your mother are in my thoughts.