Hospice

Please tell me your experiences with hospice pros and cons.. How did you know it is time.. How hard was it to make the decision.. GBM 8/11

I went to talk to hospice three or four months ago. They were very kind. They wanted to come in and tell my sister that she had to face the facts, quote "she's fighting a losing battle" unquote. I decided I didn't want anyone coming over to my sister's house to tell her she was fighting a losing battle so I thanked them for their time. However, I think if you're even asking yourself this question it's probably a good time to go to the hospice office and talk to somebody about your situation and get a feel for what services they offer.

Ubsueq,

When Donnie came home from the hospital, after his 2nd resection, with left side neglect, lots of my friends told me I should contact Hospice.  They said Hospice would be able to help me with Donnie's caregiving.

Through conversations with Hospice and ultimately the social worker at Moffitt, I realized that Hospice could only be called when all cancer fighting treatments were stopped.  In other words, someone could not be on Avastin and be a Hospice patient.

Some of the other, more experienced, cancer compass members may correct me on this.  But this was my understanding.

We are not at the Hospice stage, yet.  Donnie still has goals of walking and "beating" this disease, although his last MRI showed growth and increased swelling.  No one in our family wants to squash his hope.

I hope this has helped. There are so many things to learn about GBM.  I think my biggest realization was the unpredictability of a brain tumor because of the location and aggressivness each individual's case.

Donnie was diagnosed in Feb. 2012  Bless you with your fight.

Every Hospice org. is a little different, and you probably should talk to people/physicians in your area on which hospice org. is best for you.  As with any area of healthcare, we all know there are good ones and bad ones.

A few of the myths about hospice that I can clear up that perhaps might make you feel that this is the time to call them. 

Hospice is not the "grim reaper", it is not about giving up the fight.  A lot of patients rally under hospice care, and a lot of patients come off of hospice care and return to active treatments.  My husband was on hospice 2 years ago, they helped me to seek out second opinions.  They met us in the ER when he had his stroke, and let him sign off the benefit to seek active treatment for the stoke.  They followed up with us for months after, just to see how we were doing.  As my husband's hospice Doc said "Hospice gives everyone a timeout."  You can return to being a wife/mother/sibling, etc., and your love one no longer has to endure the madness that is brain tumor treatment schedules.  There will be a whole team to help you through this process.  They are there not only for the warrior but also for the family and friends. 

Not really cons, but more things that you, as a caregiver, will have to adjust to in hospice care.  The level of medicine is different.  Hospice's goal is for comfort and dignity.  You get used to all the medical tests, monitors, etc.  In hospice they don't do those things.  Yes, they take vitals.  Yes, they will address an acute medical problem.  Yes, your loved one will still be on their medications.  But as things change, they push medications (at your call) to keep your loved one comfortable, as opposed to trying to figure out what exactly is going on.  You do have to sign a DNR-CC - do not resuscitate - comfort care.  That being said, if you have the need to call 911 - or send your warrior back to the ER/hospital there are really no rules against that - just be prepared.

As for knowing when it is time...

This time, I knew before the doctors knew it was time to go to hospice.  Two years ago, I was kicking and screaming the whole way.  Call, set up a meeting....if it's not right, you will know and just tell them.  Any hospice org. worth their weight is not going to pressure you to sign on.  If you don't feel comfortable with that one, call another one.  If this is not the right time....don't worry about it.  If hospice doesn't feel right for you at all....you don't have to use them.  It's a very personal decision.  It's a decision that my husband and I made together...and was probably the smartest one we made over the last 4 months of his life.  He lived out his last 2 months at a "hospice house" facility.  The staff became our family.  In all the years of this battle with my husband....I have never had so much support.

You will know when and if it is right.  It is not easy, and it's okay to be a wreck.  WE were ready, and I was still an emotional mess for the first few days.  But then I took my "timeout"....and got it.  We spent 2 months laughing and smiling, and celebrating the person that my husband was throughout his life....not what his brain tumor had done to him.

-Karyn

 

Thank you all for your caring words and advice. Only those affected by this understand....

It was difficult for us  to accept hospice and that my mom is close to end.  But then it was for mom comfort and they made it easy for my mother. If you are not happy with a nurse they would listen and there will be nurses that you are comfortable working with.  Let them know what you need and they are understanding. My mom was at home and we only needed pain killer and Atavin close to end.  They were very helpful close to end and provided us with whatever medication we needed.   

On Dec 09, 2012 2:29 PM karynk wrote:

Every Hospice org. is a little different, and you probably should talk to people/physicians in your area on which hospice org. is best for you.  As with any area of healthcare, we all know there are good ones and bad ones.

A few of the myths about hospice that I can clear up that perhaps might make you feel that this is the time to call them. 

Hospice is not the "grim reaper", it is not about giving up the fight.  A lot of patients rally under hospice care, and a lot of patients come off of hospice care and return to active treatments.  My husband was on hospice 2 years ago, they helped me to seek out second opinions.  They met us in the ER when he had his stroke, and let him sign off the benefit to seek active treatment for the stoke.  They followed up with us for months after, just to see how we were doing.  As my husband's hospice Doc said "Hospice gives everyone a timeout."  You can return to being a wife/mother/sibling, etc., and your love one no longer has to endure the madness that is brain tumor treatment schedules.  There will be a whole team to help you through this process.  They are there not only for the warrior but also for the family and friends. 

Not really cons, but more things that you, as a caregiver, will have to adjust to in hospice care.  The level of medicine is different.  Hospice's goal is for comfort and dignity.  You get used to all the medical tests, monitors, etc.  In hospice they don't do those things.  Yes, they take vitals.  Yes, they will address an acute medical problem.  Yes, your loved one will still be on their medications.  But as things change, they push medications (at your call) to keep your loved one comfortable, as opposed to trying to figure out what exactly is going on.  You do have to sign a DNR-CC - do not resuscitate - comfort care.  That being said, if you have the need to call 911 - or send your warrior back to the ER/hospital there are really no rules against that - just be prepared.

As for knowing when it is time...

This time, I knew before the doctors knew it was time to go to hospice.  Two years ago, I was kicking and screaming the whole way.  Call, set up a meeting....if it's not right, you will know and just tell them.  Any hospice org. worth their weight is not going to pressure you to sign on.  If you don't feel comfortable with that one, call another one.  If this is not the right time....don't worry about it.  If hospice doesn't feel right for you at all....you don't have to use them.  It's a very personal decision.  It's a decision that my husband and I made together...and was probably the smartest one we made over the last 4 months of his life.  He lived out his last 2 months at a "hospice house" facility.  The staff became our family.  In all the years of this battle with my husband....I have never had so much support.

You will know when and if it is right.  It is not easy, and it's okay to be a wreck.  WE were ready, and I was still an emotional mess for the first few days.  But then I took my "timeout"....and got it.  We spent 2 months laughing and smiling, and celebrating the person that my husband was throughout his life....not what his brain tumor had done to him.

-Karyn

 

you could not have said it any better hospice are not bad they do like to push meds thats only because they don,t believe that they should be in pain my husband passed 6 weeks ago and the social worker comes to visit me and i see her in church on sundays for support this is my first christmas without him and it is really hard to cope i went to my daughters christmas concert with he today as she is in band and its really hard to take that he wont be here this year to all you caregives that have your husbands cherish every minute with them and to the ones that don,t have their husbands may god shine his light on us and bring us comfort and hope 

Although my husband Joe did not have GBM I would like to respond to my experience with hospice. Joe was diagnosed with Esophageal cancer with mets to the liver and lymph nodes on Oct. 15. 2010. We were in shock and never in a million years expected this diagnosis. It was diagnosed during an endoscopy... then 3 days later after a CT scan we found out that it had already spread to his liver and some nodes. He was diagnosed with stage IV Adenocarcinoma. Joe passed away 9 months later on July 21,2011 after a 9 month battle with this monster. On July 8, 2011 his oncologist gave us the earth shattering news that there was nothing else that could be done. Home Hospice recommended because both Joe and I wanted to keep him home. Hospice came out for the first time 10 days before Joe passed. They were a God sent from the moment they walked in the door. We only wanted them to come out a 3 or 4 times a week for an hour to check on Joe's comfort level and vitals. I work in the medical field so I was able to basically do most of the care myself. I just wanted backup in case...in my state of mind at the time... I missed something. I was able to get 3 months off from work to care for Joe and have some bereavement time after Joe passed. The doctors I work for and my co workers were awsome during this time. They never complained about the extra work they had to take on during my absence. My docs held my job for me and then allowed me to come back part time. As for hospice... during the last 10 days of Joe's life I have nothing but praise for them. We used Vitas Hospice and they were on call for me 24hrs a day 7 days a week. The love and support that they showed me and my husband was unbelievable. The care and compassion were above and beyond what I expected. Hospice was my saving grace when my whole life was falling apart and spiraling out of control. Joe was the love of my life...my soul mate. To have him die at age 58 was unthinkable. Vitas also offered free consuling for me and my family members for 13 months after Joes passed away. To be honest I have no cons about my experience with hospice. Right now I am trying to move forward with my life but that just isn't happening. Joe has been gone almost 17 months and I still have flash backs to how he suffered and I still cry alot when I'm alone. He never complained but I could see the pain and suffering in his eyes. Cancer is evil. I pray that you find a hospice care agency that is as caring and compassionate as Vitas. 

Keeping you close to my heart and in my prayers. 

Love, hugs and continuing prayers

JackieJo

Jackie I quit my job to take care of my husband and i didn't regret it one bit and im sure after 17 months i will still miss him as much as i do today it has been 6 weeks tuesday and i push forward rather i want to or not mine lived 5 months after brain mets from lung cancer we were together for 31 years and our anniversary of 31 years is coming up jan 6 so after Christmas i have to get over another hurdell it is so hard my husband was 54 and would have been 55 jan 29 i wish i could just skip jan i heard that song merry christmas darling and i cried a river i cried at church today and at my daughters christmas concert i feel like people are looking at me that don't know what happend and think bad of me sometimes i hate going out I pray it gets better someday

Hi Angel1959...You message breaks my heart. I know what you mean about your wedding anniversary. Joe and I met on December 16, 1994 and married exactly one year later on December 16, 1995. I've been more emotional than usual for the past couple of weeks and I know its because of the holidays and the anniversaries. I will be keeping you close to my heart and in my prayers. May God give us the strength to get through this. I wish I could tell you that the pain goes away after a year..thats what I had been told by people who have not been through what we have. I still hurt and cry almost as much as I did right after Joe died. I still have to force myself to get out of bed every morning and I still don't feel like going anywhere. I just really want to stay home with my memories of Joe. I only work 3 days a week now but those 3 days are torture. I watch the clock waiting to be able to go home to my safe haven. If I didn't need the money I would quit but thats not an option right now. I know I will never get over losing Joe. He was my life...my everything. When we weren't working we were always together. I cry for you, me and others that have had their lives destroyed by cancer. 

Hugs and prayers

JackieJo