Share your story
Tell us your story
Through the challenges and rewards of caring for a seriously ill loved one, it often helps to hear from other families: the obstacles they have faced and what pulled them through the hard times. Below are some stories from people who have dealt with situations perhaps similar to your own.
A Last Gift
Hi my name is S. I am 59 years young (such a cliche), but I don't feel old at all. I was really looking forward to getting older and being supported and supporting my sweet, loving, generous, kind, smart, and very cute husband. That will not happen now. My husband has terminal stomach cancer, and it has spread to his liver. He sleeps a lot these days but thankfully, he has no pain.
I watch as the man I love and admire slowly gives up the will to live. I struggle with knowing what to say. How can anyone know what it feels like to have your life drain out of you day by day, hour by hour, minute by minute, second by agonizing second. Maybe it's good he sleeps a lot. I grieve for us even though he is still with me physically. I feel his fear and sadness at knowing he will never again hike through the forests of Northern California, or spend hours in his greenhouse, lovingly growing his plants. I grieve to think that someday soon I will come home and his spirit, his sweet loving face will not be there except in my memory.
Who am I without my husband? Logically, I know life goes on. I’ve seen others face this journey and survive. Always having sympathy for them; one can never know the true sadness and fear until one has experienced it for themselves. I am taking the journey now. Learning how to be in the world while my precious beloved husband exists only partly in this world. He seems far away, unable to share with me his fear and grief. But I know him well enough to feel him. I feel his sadness. I feel his aloneness. I feel his knowing. I see him processing in the way he knows is best for him. I admire him so.
I never wanted to feel like this. This deep ache, the breaking of my heart. "It is better to have loved and lost than to have never loved at all." I have loved. I feel very fortunate and grateful for having experienced him. Who am I without him? I am a better person because he shared his life with me. My husband isn’t gone yet and my last, long, authentic gift I give to him is to be a part of his ending on this world. I hope we meet again. I welcome our pain together. So sleep my sweet, awesome man, sleep and rest. Close your eyes and sleep.(Return to top)
Bringing church home
My sister has always been a religious woman. With her condition (congestive heart failure) she was not able to attend church. I live out of state, so I couldn't take her. She got depressed. Understandably. She read the Bible at home. And we would pray together when we talked on the phone. But that wasn't enough. Finally I called her church and talked to the pastor. It turns out they had just set up a caring circle project where members of the congregation come out to visit. They pray and sing together. (And truthfully she gets to catch up on the gossip.) The pastor also makes it a point to come visit now and then. It's made a world of difference for my sister. Even though she can't go to church, a little bit of the church is now coming to her.(Return to top)
Coping with suffering
When Pop was sick, the hardest thing for me was seeing him in pain. We had medications to give him, but we were worried he would get addicted. The nurse at hospice came out and taught us several things we could do. They provided us with a patch that kept him comfortable most of the time. And with hot compresses, we were able to relieve the sharp pains he would get now and then above his bladder. She also taught us some relaxation exercises we could do with him. We learned from her that people who are in pain don't get addicted mentally the way people who aren't in pain do. I guess the body knows the difference. That was a relief! As an added bonus, with hospice, Medicare paid for the medicines needed to keep Pop comfortable. But most of all, I was glad to see him out of pain. I couldn't bear to see him suffer.(Return to top)
Relief for Mom
Dad had ALS. As time progressed, he was less and less able to care for himself. Dad is a big man, and Mom has arthritis. She also has problems sleeping and is not very strong. She was getting exhausted with all the things she had to do for Dad. For instance, one day when she was helping him get out of the shower, he was wet and slippery and almost fell on the cold hard tile. Mom threw her back out catching him. It was not until some time later that we signed on with hospice. We learned then that they have bath aides who came out several times a week and gave Dad a bath. That alone was worth its weight in gold! Mom was freed from the hard physical labor and could concentrate on giving him her loving attention. I just wish we had signed on sooner. Hospice was good for both Mom and Dad!(Return to top)
The kindness of strangers
My mother was diagnosed with breast cancer when I was 15. It was a rough and scary time. My dad had to keep working and I was the oldest, so I looked after my 2 sisters on the days when Mom wasn't doing so well. It was Christmas time and we didn't have much money. It didn't look good. But one day this lady from hospice came and asked us each to make a Christmas list "for Santa". I thought, "yeah, sure". But I did it anyway. It turned out, Christmas morning, we had oodles of presents! A few volunteers at hospice took our list to store owners in the area and they donated our presents! My sisters and I were so surprised! We never even met these people, but they did so much for us. What seemed like a very grim holiday, turned out to have some joy in it simply because of the kindness of strangers.(Return to top)