Hospice advice anyone?

[amieb]

What a difference a week can make. On Wednesday dad's oncologist suggested we not do chemo, as dad's cancer is spreading rapidly and chemo will only weaken him more. We were caught a little by surprise. Kind of feel like they are giving up on us.

But dad's moved forward with what he wants to do and has decided that hospice is the next step for him. He doesn't want treatment and the pain of extending his life as it is now. I'm here looking for what we can expect with hospice. I have done the research and kind of have an idea- but everyone here has such experience with everything I trust you more than the internet. How can I get everything I can from the hospice program and what can I ask for?

And any final words of advice on how to spend the final weeks with him? What did you do to remember everything? Did you make a book? Have them write a letter? Take pictures? Record anything?

I am so scared I am going to forget him eventually. I'm going to forget how he smells. What he sounds like. How it feels to have him be a live next to me. I just want to make sure to get the best out of him that I can while he is here.

I can't seem to stop crying. I don't even know what to do with myself. Can't seem to be more than five feet away from him. I just know the end is coming and that scares the hell out of me.

Thank you for your advice and anything you can offer. I'll continue to read the posts other people have written who are in the same boat.

[Treebywater]

I just wanted to tell you one thing: You WON'T forget him. You won't. The memories won't always be as easy to access. But his smell, his voice, the way his eyes crinkle when he tells a joke. They will all stay with you.

I'm so sorry you are at this point. I will be praying for you and your Daddy.

[recce101]

Amie, I'm sorry that your dad has reached this point, but the fact that he is accepting hospice as the next step should make it a little easier for the family to deal with events as they unfold. I don't have any first-hand experience with hospice, but I've heard many people say that the quality of service varies considerably from one to another, and opinions seem to be mixed on how in-home hospice compares with care in a hospice facility. If you have a choice between hospice organizations and modes in that area, you should speak to people who have used those specific services.

I do have a suggestion on one thing you can do together with your dad. Some 25 years ago my wife wrote histories of two Central Oahu communities, and I accompanied her on numerous interviews with oldtimers -- immigrants or children of immigrants from Japan, China, the Philippines, Korea, Puerto Rico, or Portugal -- who came to Hawaii in the early 20th century to work on the rapidly expanding sugar and pineapple plantations or who were themselves born on the plantations. While I took photos of various items, she did a taped interview, sometimes resorting to the pidgin English common to all ethnic groups of that era. Their descriptions of life in those days, and especially their childhood memories, are priceless and, in a way, timeless. While your dad is still able to communicate I bet he would enjoy reminiscing about the old days, some of the funny things that happened to him, maybe some of the mischief he and his friends got into, and you might see a side of him you hadn't seen before or that maybe didn't seem all that interesting as you were growing up. My wife transcribed every interview in full although she used only a few quotes from each person in her books, and even today descendants of those who have since died contact her for more details on what plantation life was like for Grandma or Grandpa. While your dad and I may not think of our own childhood experiences as being that long ago or quaint, most people in the world probably do! Aloha,

Ned

[fillise]

You've gotten some good advice. Talk to people who have used your local hospice services to see which might be right for your family.

As for how to spend these next few weeks/months--I've not been there yet, but I hear people over and over again say they want to experience "normal" again. They simply want to live their lives. Maybe that is a gift you could give him in whatever ways it is possible.

Susan

[peebygeeby]

Hi, I'm so sorry that you and your Dad are now in the place that you are.

I can tell you my experience, and I hope it will help you get through this. In 2006 I lost both of my parents within 9 months of each other. First, was my Dad, my hero, the person who I loved most in my life, and still do. Then not very long after, my mom, who was a wonderful strong woman. I could not imagine being without them, I literally thought that I would self destruct without them. Not long before they died, someone told me that I would find that it is like they never really leave you. I did'nt understand this, and it is something that really can't be explained. But it is true. They are so much a part of you in your heart and in your mind, that they remain. You can't see them or call them on the phone, but you will continue to talk to them, and the answers that you will receive in your mind and heart are the answers that they would have given you.

When I think of my parents these days, it's almost like they're are an extended trip somewhere, if that makes sense.

As for hospice, I can't say enough about that organization. At a time when you need love, care, and compassion, and a very heavy load lifted off of your shoulders, they will provide all of that. When it came time, I called hospice to care for both of my parents, what a blessing they are.

Again, I am so sorry, but please know, you're Dad will be very well cared for by hospice, and you will get through this.

All the best,

Gail

[Ry]

I lost my father almost 28 years ago, and I can still picture him and hear his voice. You won't forget your dad.

If you know of anyone in your area that has used hospice, call them and ask about their experience. In our area, the hospitals all have a hospice program but the smaller non-profit hospices are much better. Hospitals are notorious for steering patients into their own programs-- so make sure you know what is available.

I am sorry it is time for hospice.

Rochelle

[Flyman35]

I lost my sister-in-law Marion 3 1/2 years ago to throat cancer which in the end went to her brain and bones she was in so much pain and there was nothing left to do but call hospice. She went to the VNA Hospice in Valparaiso,IN and they were very caring and gentle. I can't say enough good things about them. She was there for 3 weeks in all and in the beginning she was still able to talk. When I went back 3 days later she was unresponsive. It all goes so fast. We were called in 4 times during her stay saying she was not going to last the night and damned if she did not fight back. While we were with her one night we just all gathered around her bed and started telling stories about the old times and her old car Nellie Bell. When we mentioned Nellie Bell she actually let out a small laugh. I never stopped talking to her even though she could not respond back because I knew she was still in there.

Marion fought her battle with cancer for 7 1/2 years and was finally at peace on 10/19/04.

My thoughts and prayers are with you.

Denise

[cjolaw]

My mom recently entered home hospice and it has been a God-send. Prior to them coming into our home, mom was being carted to the doctor every day or so for something or other, she was uncomfortable, she was tired and honestly, she likes the hospice nurses who take the time to listen to her and focus on her and her pain or issues.

Know that you are in my thoughts...

[amieb]

Thank you all so much for your kind words. We are meeting with the nurse today and I hope my dad likes her. It's kind of like a date, in a way. Here is the woman who will walk us through the hardest thing we have to do.

Dad is in better spirits knowing that he has made a decision. He keeps saying he is glad the wheels are in motion and things are happening. I can't be glad yet. It suddenly is so real to me.

It means a lot to me that there are so many people here who take the time to write. It is a beacon to me, to be able to log in and read the advice and kind words of so many. I love the idea of thinking he is on an extended trip. That is probably how I will live the rest of my life. I will let you know how it goes. Just wanted to thank you all so much.

[rogfam]

I'm so glad you called hopsice and that your dad is happy with this decision, as it is a very hard one to make. I'm an aide with hospice, I absolutely love my job, as hard is it, it's so rewarding. I'm sure your dad's nurse told you today all hopsice can offer you. It can be such a blessing! The nurses are wonderful, saveing you trips to the doctor, and even supplying certaing meds. As an aide, I get to really share a special time with my poeple, loving them til the end, it's an honor.

If you have any questions, feel free ask.

Love n prayers,

Christy

[Leslie]

Amieb--

I am so sorry to hear that you are at this point. Having been exactly where you are just a few months ago, I know how intense your sadness must be.

I can only tell you that at the end, my brother, my mom, and I laid in bed with my dad a lot to be as close to him as possible. He was too fatigued to actually speak much---but we told him how much we loved him over and over again. We rarely talked about the fact that he was dying...it was just too painful for all of us. And frankly, he never seemed to really want to go there.

We interviewed a few different hospice agencies--but ultimately decided to keep him in the hospital at UCLA. None of the hospice agencies felt right to us--and UCLA was my dad's second home. We loved our doctors--and had come up with a plan for keeping him comfortable.

The one piece that we found extremely helpful was that at the very end (literally his last hour), we worked with a nurse who specialized in death and dying. She helped guide us--as we guided my dad out of this life. She was incredible...and helped us give him the death he wanted and deserved. Just like his life, my dad's death was a very conscious, very deliberate moment--and because he was so generous and so loving and knew how much it meant to us...he included us in his death. So, while cancer had been a tragedy in our lives, we felt ourselves in a sort of transcendent place through my dad's death. I would imagine that hospice has nurses that can talk to you and your Dad (if he wants) about the actual dying process and what to expect.

My thoughts are with you and I am sending you strength to get through this.

Best,

Leslie