when to call?

Tonya: Having just gone through this with my husband, all I can say is that you will know when it’s time to call hospice. My husband Tom started to go ‘downhill’ on the Monday before he passed. First I noticed that his urine output was way down and he just did not look good and was very weak. I called his doc and got him in for an appointment that day. He was hospitalized and his doc didn’t like his color. He said he looked ‘gray’ or ‘ashen’. On Tuesday Tom said it was time to call all the kids. On Wed he said “I want to go home, I will NOT die in this hospital”. He came home on Thursday and ‘Pallative care’ people were here by 2pm. I told them that he didn’t need Pallative care, he needed Hospice. They agreed and sent the hospice team in. Tom’s kidney’s had basically stopped working and he passed away peacefully at home on Sunday. The time frame is exactly what they say when the kidney’s fail, 7 days.

I’m glad that he was at home when he passed. Alebit it was very sad, but very peaceful as well. He knew he ws with the person that meant the most to him. Two of my daughters, my son in law and three of my grandchildren were here with him when he passed. (His own children were not here).

It’s always a hard decision to make. Tom and I could have had hospice coming in much earlier, but in Tom’s mind it was ‘giving up’ and he never wanted to give up. In the end, I made the call. The last 3 times he was hospitalized, we had a DNR on him. He did not want to live if he could not have his quality of life. I’m the same way and all my children know that.

Hospice can be a wonderful experience and it was for me. The ladies were very caring, came within a 1/2 hour if I called them.

My heart goes out to you and your family. I know this is not easy to go through.

Love and Hugs,
Margaret

Hi T,

My mother also has had a lot of pain associated with this form of cancer and has been on a 50mg patch of Fentanyl. She has now been pain free during these last few months of life that she has left. She too wishes to be home. I pray for you and your family. God Bless all of us.

T

Hi T,

My husband was diagnosed 10/2010 and was on a similar chemo. He also decided to stop treatment. So January 2012 was his last infusion. It’s been 3 months without chemo (although he is still getting Avastin and Zomeda).

His pain has definately increased. He started with the occasional 5 mg Oxi and is now up to 5mg 5 x per day (which is really not that much). I’m sure pain varies from person to person depending on where the mets are. My husband has mets to the ribs, spine and liver.

There are pain management and palliative care specialist that can work with you to manage the pain.
We are also in the process of seeking that kind of support. I’ll let you know what we learned and I’m sure others will respond.

Keep us posted and take care.
I’ll keep you and your husband in my prayers.

P.

I find it very difficult to send this email to you because it is so sad what your entire family is dealing with. I recently took care of my Mom and had hospice come in when Mom said she did not want any more chemo. She only had one treatment and then became very, very weak and just wasn’t herself. I do not believe you will have any problem with the oncologist setting up hospice. Be sure to check what your health insurance coverage is. There was no reason for my Mom to ever see the oncologist again, although they offered that she could continue to go there for fluids which she did not. She had enough with doctors. There was a nurse (no doctors) who came to my Mom’s 1-2 times a week to check her. Aids would come for one hour a few times a week to assist. All medications that were required were sent to the home and kept on hand. Most of the time I had to give my Mom the meds. I was able to call the hospice nurse any time day or night with questions. If necessary, they were on call to come. My Mom did not have lots of pain, but did have lots of anxiety. I hope this helps you. I pray for you.