One of the things I regret about my own cancer experience is that I didn't recognize how much my husband, who was my caregiver, was dealing with silently. Everyone would call and ask how I was doing but no one asked how he was.
Truth be told, he was scared to death. He was worried that I wasn't going to make it. He was worried that he might have to face the prospect of being a single father of a 3 year old. Yet night after night, he let me cry on his shoulder. He held our son when I was too tired to get up, he answered the flurry of questions coming in from concerned friends and family. He cooked, cleaned took me to every doctor appointment and managed to hold down his own full-time job simultaneously. It was years later that he confessed to how frightened he was and how alone he felt.
Fortunately, the medical community is beginning to incorporate care plans for caregivers. I just hope more caregivers recognize the need to seek that support.

I totally agree with you. My wife is a Breast Cancer survivor and throughout all last year, we had friends and family visit her and support us, but no one asked me how I was doing. We have four wonderful children, at the time they were 17, 14, 12, & 10. I worried about them, about our finance, which by the way have not improved, about her. I even started visiting the funeral homes website, I had no idea what to do or think. I felt ALONE!!!! Thanks to God, I became involved with the Columbia Basin Cancer Foundation and found some relief there. We are now going to start our own Support group for caregivers/spouses.

As a fulltime caregiver for my father who is a Quad and also has Stage 4 liver cancer, a wife and mother of three; and let me not forget I also work full time outside my home, I can only wish I had support. I spend what free time I have thinking about what I need to do next or what I have forgotten to do. My father is a VA Vet and I have asked for help and it is not there. They would rather send him to a nursing home so that they could care for him. But what kind of life would he have if all he wants now is to be with family? Am I worng for caring for him, am I doing the right thing? These are all questions I have and it seems hard to find support. Any suggestions?

My brother-in-law just moved in with us as he fights pancreatic cancer. Both my husband and I work full time, and we have two kids at home, so I don't have a clue who to turn to for support for us as we navigate this difficult time. Thus far he as even resisted Hospice, so at this moment, we feel we are on a empty ocean in a tiny lifeboat!

Oh how I feel your pain! It's so hard to put on a brave face and care for the needs of a loved one when you've run out of steam yourself. There's a term being thrown around these days called, "compassion fatigue". You should google that because lots of great tips/advice/resources can be found on the subject. And for those of you taking care of a terminally ill loved one who isn't ready to discuss hospice, please look into palliative care options. The great thing about palliative care is that patients can continue treatment while receiving palliative care. There are providers who will come into your home to administer certain treatments and in many cases it's covered by insurance.

Where do I start? In 2005, my then partner, now husband, was diagnosed with lung cancer. He had a right lung middle lobe removed and a wedge VAT on his right upper lobe. Four months later they dealt with the left side. Three wedges. He has been followed and until a few weeks ago, was clean. A year and a half later, my mother in law, then 88, was diagnosed with lymphoma and moved in with us for nine months. 6 months after that, her PET scan showed a recurrence and she has been living with us again for 10 months. Yesterday, we found out my husband needs top right and left lobectomies. We are deciding on how to proceed. We understand surgery is the most thorough direction. We have to see if he's strong enough. I told him, I'm with him 100%, but there wasn't enough left of me to care for his mother - who does have help for 5 hours every week day - she's very independent but now going on 91 and getting slower and weaker. She says she wants to go home, but now that her son is ill again, she doesn't want to leave until "he's better." She thinks cancer is like a cold. It just get better and goes away. He's also dealing with bladder cancer. She doesn't accept the fact that she still has some lymphoma and a small tumor in her bladder. She's too frail for any more chemo. But, at 90 - she's a champ. Never nauseous or sick in any way from two full rounds of 6 months of chemo. Just want to unload. I'm at my wits end. After my husband spoke to his surgeon yesterday, he spoke with his brother in Houston (we're in New York City), and the first question is "How do we get mom to move back to Brooklyn?" Considering the news, I was hysterical laughing. Now we're both just numb. Thanks for "listening."

I got tears in my eyes reading these posts because I can relate to what everyone has said so deeply; I am family member/caregiver for my mother who has stage IV breast cancer that has metastasized to her bones. I hear about support for families, but I also very much feel like we're on an "empty ocean in a tiny lifeboat." She has not started hospice care and is currently trying to maintain a quality of life with palliative care, including radiation. However it is becoming increasingly difficult to get to her radiation appointments and the pain has not subsided yet (they said the radiation should help with the bone/nerve pain she is having).

Is there really palliative care at home? I heard the only "at home" care is pretty much hospice/end-of-life care. Her insurance won't even cover non-ambulatory transportation to the radiation clinic.

The hardest part for me is that every month has been a roller-coaster of ups and downs and lately we are in a "down," and she is having pain, uncomfortable, and has nausea. Her doctors seems to struggle with getting the exact amount of pain meds/anti-nausea meds that will work for her.

Through all this I have been commuting five hours to help her. My stepdad is the true full-time caregiver and I drive down for a few weeks at a time and then go back home to be with my husband (we are newlyweds!). Lately the driving back and forth and being away from my husband has been very difficult and I don't know how to resolve the situation... I am trying to stay hopeful that we can at least get my mother more comfortable.

Hello, I struggled with nausea too. I have two suggestions: I used stematil suppositories (5 mg). If these made me drowsy I cut them in half and inserted the other half if I needed it. If the nausea was severe I used 25 mg. suppository or shot but these knock me out. The second is to use ginger capsules purchased from the health food store.
When the nausea was under control I could manage other things and mostly, could appreciate the beauty of the clouds in the sky and the colors of the sunrise and sunset. Watching the pelicans fly through the sky became a sign of the continuation of life itself.

Oh, how it helped to be able to put a name on what I'm feeling. I don't want anyone to think I would have it any other way, but this is exhausting. The burden of a parent (my mother in law) who wants to leave us and go home coupled with her son, my husband, who is facing a double lobectomy is not more than I expected, but it goes on and on and on. I need a shoulder too and my friends realize it. Therapy helps, but honestly this bulletin board is what I'm getting the most relief from. Journaling also helps. My mother in law doesn't want to go home until her son is "all better." I may have said that already, but the nagging question of "How do we get her back to Brooklyn?" is there all the time. Her need for my support of her in her struggle with my husband's cancer is getting very complicated. I want to remain polite, but I need time alone. I can't just leave because my husband wants me around - sometimes. He's pretty good about letting me have some space. She's the one that clutches on. Thank all of you who are getting involved in this dialogue for your contributions. In your own way, each of your experiences is somehow applicable to what I'm going through. It's just "compassion fatigue". I love that!

Woo that's tough. It must be very hard for you. your husband's mom is obviously scared to death. I cant think of anything worse then the possiblity of my child passin away before me. My grandmother had her only child, my dad, passed away before her. I know it seems like her presence just makes matters worse, but try to put yourself in her shoes. Maybe you can get out and take a walk or a bike ride once a day or so. Let that be your time. Is that feasible. Your family is going through trauma now and you are trying to hold everything together. You will get through this.