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Hospice no longer means end of life

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

First a BIG BIG thank you for everyone who has been so kind and responding to my posts about Mike and his battle against EC and now emphysema. He was determined to be that miracle but his body is not cooperating so July 3rd, we officially terminated all medical treatments and went on hospice Juky 4th..While it was a hard decision to make, both Mike and I will tell anyone it was the BEST decision we ever made.

Hospice is a scary word for when people hear that word the first thought is end of life care but that is not true. Hospice also means comfort care and that is what we have now. Mike and I after long talks full of tears, he decided he no longer wants to endure the pain of chemo, the fast that robs him of the pound or two he gains during the weeks, be sick and puts his quality of life at a 1 but he wants to live what ever time he has left free of hospitals, tests and chemicals. Going on hospice took so much weight off our shoulders that for the first time in over a year and half of fighting this fight, I saw that sparkle in his eye when he smiled and said this was the right choice and all our doctors are supportive and behind us.

Hospice comfort care means exactly that..comfort care. We are treating his symptoms and not the cancer or emphysema. Our focus is on making sure Mike is comfortable not on all the endless appointments on a calendar and taking care of the side effects of the chemo. I have one number to call, not a list when I need help and they come to us. The hospice staff calls our doctors who will stay involved with us and when the time comes that Mike draws his last breath, I call hospice, not the police or ambulance so they can prove he died of natural causes, but the hospice nurse comes and makes all the calls for us after they pronounce his time of death. What hospice now offers Mike is the ability to focus on his family and spend quality time with us and will not step foot in the hospital or ED again..more importantly, Mike will not die in a hospital which is his greatest fear. Hospice has allowed us to re-direct all our energy and focus from trying to fight cancer and emphysema which does not provide a cure but does provide severe sickness and agony but rather allows us to focus on what is truly important..family and all the small things like a sunrise or sunset, a bird sitting on our fence or the laughter of our grandchildren..the things that get lost in the fight that are so precious. I am thankful for hospice which has given my husband peace of mind through the amazing care we have so far recieved since the 4th.   

  

Ladylacy
Posts: 462
Joined: Apr 2012

This brought tears to my eyes.  I always knew this is what hospice is like having had it for my mother.  So when the time comes for us to call hospice in, I'm okay with it (well I say that now).  We don't know when that time will be but I know it is coming.  I see my husband's energy levels going lower and lower but thankfully his pain isn't all that bad yet.  This is a beast and with all the research that has been done over the years, you would think they could find out the cause and offer more hope to those that have been diagnosed.  Yes there are cures, many of time, but just as many who aren't cured.

Thoughts and prayers to you both -- Sharon

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I can not begin to tell you how much Mike go ing into hospice has taken such a burden off his shoulders. When he first heard the word hospice his eyes popped out of his head like a cartoon character but once he realized what hospice could offer him that the doctors could not, the tears he cried were not tears because of the cancer or the emphysema, but the tears were of relief and joy that he can live what ever time he has left with us here at home and with amazing care. Today outr hospice nurse came and she ordered oxygen to help him breathe and the doctors would not even consider that because his oxygen level were in the 90's. Our hospice nurse said she does not care about numbers she cares about his struggle to breathe easily and while the morphine is helping, it needs some more help. So the oxygen was ordered when she was here at 3pm and it just arrived. Mike put the air on and he felt immediate relief and again tears of joy that his heart will get some help and not have to pump as hard to get air in. She also got us a new script for longer-acting morphine so now we take it every 12 hours (it is in pill form) and can use the liquid morphine if needed in between. You are so right that there are many people who from chemo, radiation and surgey go into remission and can go years without it coming back, however, we are not in that lucky catagory but we are in a different lucky catagory and that is now we have more options to manage Mike's symptoms and he can rest without chemicals in his body that sadly will do more damage than good. We are truly blessed to have hospice which is covered in full by our medical insurance (and we do not have Medicaid or Medicare but regular Blue Cross/Blue Shield) with amazing support for my entire family. Going on hospice is a hard decision as many see it as giving up or letting the cancer win but it is really the opposite. For Mike, it was allowing him to live his days with grace and dignity without ever going to the hospital again. That he now can spend the time he normally would spend at the hospital with doctors or in the cancer center here at home surrounded by love and his family. As Mike put it, he didn't realize just how much time and energy was spent on the cancer that he will never get back but he fought as hard as he could and he knows that he did his best and sadly, despite his hard fight and the fight of our medical team, sometimes it is not meant to be.

Please know that you and your entire family are in my thoughts and prayers. Christine

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I can not begin to tell you how much Mike go ing into hospice has taken such a burden off his shoulders. When he first heard the word hospice his eyes popped out of his head like a cartoon character but once he realized what hospice could offer him that the doctors could not, the tears he cried were not tears because of the cancer or the emphysema, but the tears were of relief and joy that he can live what ever time he has left with us here at home and with amazing care. Today outr hospice nurse came and she ordered oxygen to help him breathe and the doctors would not even consider that because his oxygen level were in the 90's. Our hospice nurse said she does not care about numbers she cares about his struggle to breathe easily and while the morphine is helping, it needs some more help. So the oxygen was ordered when she was here at 3pm and it just arrived. Mike put the air on and he felt immediate relief and again tears of joy that his heart will get some help and not have to pump as hard to get air in. She also got us a new script for longer-acting morphine so now we take it every 12 hours (it is in pill form) and can use the liquid morphine if needed in between. You are so right that there are many people who from chemo, radiation and surgey go into remission and can go years without it coming back, however, we are not in that lucky catagory but we are in a different lucky catagory and that is now we have more options to manage Mike's symptoms and he can rest without chemicals in his body that sadly will do more damage than good. We are truly blessed to have hospice which is covered in full by our medical insurance (and we do not have Medicaid or Medicare but regular Blue Cross/Blue Shield) with amazing support for my entire family. Going on hospice is a hard decision as many see it as giving up or letting the cancer win but it is really the opposite. For Mike, it was allowing him to live his days with grace and dignity without ever going to the hospital again. That he now can spend the time he normally would spend at the hospital with doctors or in the cancer center here at home surrounded by love and his family. As Mike put it, he didn't realize just how much time and energy was spent on the cancer that he will never get back but he fought as hard as he could and he knows that he did his best and sadly, despite his hard fight and the fight of our medical team, sometimes it is not meant to be.

Please know that you and your entire family are in my thoughts and prayers. Christine

Dad'sfight
Posts: 155
Joined: Feb 2013

Christine,

I spend everyday trying to find some new treatment for Dad, but  I hope that when we have to make peace with what's ahead we can, like you. I can't thank you enough for sharing this, everyone has been telling me to contact hospice but I thought it was for the ending.  He now has blood clots from surgery, can't put any weight on the leg, and pretty much has to stay in bed.  I'm really nervous about him starting Chemo.

I've been following all your posts, just haven't had time to sit and respond. Both of you are in my thoughts and prayers. When I was at my worst emotionally, your encouraging words really helped. I CRY NOW, anytime I feel like I need to let go.  You made me realize it was ok, thank you.

 

Will be praying for you both :)

eternalife
Posts: 36
Joined: Apr 2013

Hi Christine,

I just read your post and have to say, you are both so brave in this difficult time. Words cannot describe what you are dealing with. I know that I will have to sit with Mark and make some hard decisions shortly. We await scan results, things are not looking promising.

For you and Mike, wishing you specia,l precious moments that you so deserve.

Take care and be good to yourself,

Thank you for being so open and honest, you have made everything seem less traumatic. Letting go and living in the moment is what we have to do.

Hugs and prayers,

 

 

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