So, my mom was supposed to come to Boston (two hours) tomorrow for another Gemzar treatment. She is in terrible pain, losing more weight, lethargic and on lots of meds. My dad talked to DF today, and they recommended in home hospice. I'm sorry, but I hate that word. But, I have read all the wonderful things people have had to say about it here.
Anyway, the plan is to get them in there to give my dad support (and my mom obviously). Fluids, meds, nutrition, etc. The doctor at Dana Farber did leave the door open for if my mom improves, she could resume treatment. Although, I think right now it is a long shot.
My coping mechanism all along has been that I have expected the worst. So this comes as no surprise and as I type this, I am surprisingly calm. I am wondering when it will hit me. Or if I can continue to be in denial a while longer.
So for the people of this wonderful group, please keep me positive. Stories on hospice? Experiences? Anyone resume treatment?
Pam
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Sigh....Hospice
- By hopefuldaughter
- Posted January 5, 2009 at 8:27 pm · 21 replies
- In Non-small cell lung cancer - Stage IV
- Shared with the public
Explore topics in this discussion:
21 replies
- Oldest first
- Newest first
- By Marg
- Posted January 5, 2009 at 8:46 pm
- Report post
Sorry, I have no experiences to offer but can say a prayer. Father in Heaven, please put your arms around Pam. Give her comfort and peace. Amen.
- By barcsmom
- Posted January 5, 2009 at 8:48 pm
- Report post
My mom is a hospice nurse. Hospice care does not mean death is imminent. They have many patients they care for long term and she has even had some patients get some care and then leave (she works inpatient). The goal at her facility is just to help the family and make the patient comfortable by whatever means necessary.
My grandma had hospice care the last year of her life in home. It helped my aunt tremendously - they helped with meds, bathing, even making food.
It's worth looking into even if that's not the route you choose to take. Good luck on your family's decision.
Melanie
- By bestrong
- Posted January 5, 2009 at 9:15 pm
- Report post
her doctor and was referred to hospice, her oncologist cried with her. I don't think she would have told my mom to go that route if she didn't think she was ready for it, and I think that is a sign of a very good, sympathetic, trustworthy doctor. My mom was comfortable with her advice, and that's all that mattered. Believe me, my mom didn't want to go (nor did we want her to go), but she was so weak and battered from the 16 month battle. As I told so many people at the end, no one should have to endure what she had to endure. She herself said to the hospice nurse that she had "poor" quality of life.
You may be entering a very difficult stage, Pam, but what I learned from this wonderful group of friends is that you need to respect your mother and father's wishes, trust that they are doing what is best for them, and offer your mom and dad your loving presence. That is the best you can do. Some wise soul on this board advised me to love as intensely as you dare, and have the faith of a child. Your mom will let you know when she is ready...and it may not be for awhile. So take it a day at a time, and remember to take care of yourself. Your mom wants to know that you'll be okay.
We're here for you.
Big hugs from here in Cincinnati,
Tracy
- By bestrong
- Posted January 5, 2009 at 9:21 pm
- Report post
Pam,
Not sure where the first part of my post went! And I can't remember exactly what it said except that I was getting on the board to congratulate you on your wedding when I saw your most recent post. I am so sorry that you are at this point, and I had similar fears (as did my parents) about hospice. I also mentioned that once hospice started, and my mom did start to decline rapidly, I had wished we had begun sooner so that my mom could have received the loving care of the hospice staff sooner. I also mentioned that my grandmother was in/out of hospice care for a year, so you really just do not know what will happen.
Sorry, I don't know why the first part of my reply was cut off. Hope it makes some sense.
Tracy
- By pjmac
- Posted January 5, 2009 at 10:11 pm
- Report post
Pam , Seems like we're on the same path again. My mom just started hospice this week. She is staying with me right now. I have hired a caregiver to be with her during the times I work because she can no longer be left alone. But hospice has made things easier. They brought a bedside commode, a walker a transport wheel chair a bath chair and there is also a hospital bed at her house. I think she would like to be home and I can move there for now.That didn't answer any questions did it? They also provide whatever meds she has been taking and anything else she might need to keep her more comfortable. They also told me that if she should get stronger and could continue treatment they could switch her to palliative care. I continue to hope for that. All in all hospice has been ther to meet and anticipate any needs we may have. Congratulations on your wedding. I am so happy for you that you got to share that with your mother.All the best to you Pam
Pam
- By hopefuldaughter
- Posted January 5, 2009 at 11:08 pm
- Report post
Marg - Thank you for the prayer. I'm sending it right back to you.
Melanie - Thank you for your comment as well...it is just the thing I need to hear for hope.
Tracy - I understood your posts and yes, they were very helpful.
Pam - I'm sorry we have to be in this same spot together.
I'm going to take a deep breath, try to get a good night's sleep. I found out hospice is coming tomorrow. I am going to cross my fingers that they help her make an improvement this week and I will go home this weekend to be with her.
Thank you all again...big hugs,
Pam
- By cad1223
- Posted January 6, 2009 at 6:45 am
- Report post
Hi Pam:
I am sorry that you have to go through this. I was in your shoes just a short 8 months ago. My dad was admitted to a hospice facility only 10 minutes from my home however, as my mom didn't think she could handle it at home. I can tell you that the hospice people were very good and truthful. They told us exactly what was coming and how it would come (because we asked). Dad was only there 4 short days so we were not able to utilize a lot of their services. To this day however, my mom receives monthly notes asking how she's doing and if there is anything they can do for her. I have heard that hospice stays with the family for up to 16 months after the patient passes away. They not only offer support for the spouse, but for ANYONE who needs it. Children, grandchildren, etc.
I will be thinking of you and praying for you and your family during this difficult time.
Cheryl
- By cosmogal_7
- Posted January 6, 2009 at 7:12 am
- Report post
I am so sorry to hear that. Hospice is wonderful. They were there when my aunt was losing her battle to small cell lung cancer. They helped my uncle with so much. I am hoping it will be a long time before my mom has to use them. So far she is doing well and just started on Almita. I am keeping you in my thoughts and prayers.
- By Marie400
- Posted January 6, 2009 at 8:29 am
- Report post
Pam - I'm so sorry to hear this news. My Dad was in Hospice, just for a couple of days, but they were just wonderful. We took him to the William Childs Hospice House from ICU. He passed away shortly afterward, but the nurses were just great with him and to us.
Like you, I had expected this all along so I was relatively calm. I think it helped me knowing that my Dad was ready to go and had wanted to for some time. My step-mother died 12 years ago and my Dad never recovered from losing her. He was ready to join her from the day she died.
You should be sure that your Dad knows Hospice is there for him as well as your Mom. They are so knowledgeable and kind.
Sending you a hug and a prayer that everything works out the best way for your Mom. And that you continue to be strong. Love your Mom now and be sure she knows you do -
Thinking of you -
- By claires
- Posted January 6, 2009 at 9:00 am
- Report post
Expect the worst, hope for the best. Hope is always there. Meantime, comfort, please. Hang tough.
Claire
- By jgaynor711
- Posted January 6, 2009 at 9:55 am
- Report post
Hi Pam,
I think there's no point losing hope until there's nothing left to hope for. And you have something to hope for, right? You still have your mom.
I HAVE read about people who were sent to hospice - and then left, went onto receive more treatment and lived a good while longer. I won't lie. It's not the most common thing in the world, but I've heard several stories about that happening to different people (wish I knew where, but trust me, I've read about them, maybe even on this site!)
As I've written before, you're in a very weird and emotionally harrowing place. You're straddling the fence between hope and acceptance, not knowing exactly what the future holds. And that's just it. No one knows what the future holds. We're not God. We're not psychics. We do know that we all will die someday. We don't know which day. So for now, it sounds like the best decision for your mother's comfort as well as your father. Hopefully she can rest and heal in comfort with the home hospice, and maybe find the strength to rally. Or perhaps that's not what's meant for her journey with this terrrible disease. What I hope for your mom and for you is that she can find some relief and comfort, and that you can as well, knowing that she's being cared for by the very special kind of nurses and caregivers who work in the hospice field.
OK, that's my blabber for the day. I'm thinking of you every day. Much love and strength to you during this difficult time.
Julia
xoxo
- By USMCCAT
- Posted January 6, 2009 at 9:56 am
- Report post
My dad had a great Hospice. Frontier Hospice. They were wonderful. He liked the ppl a lot. I remember when he was first diagnosed and someone mentioned hospice care and the oncologist said, "Oh, no he doesn't need that."...then, when he was told he DID need it, we knew it wasn't good. One reason, I "hate" the word, too...God Bless...
- By gsjelibean
- Posted January 6, 2009 at 10:07 am
- Report post
Dear Pam,
I'm so sorry you are going through this. I have in home hospice after my last chemo did nothing for me. I discussed this with my onc and he agreed that after a year and half and different treatments tumors still growing. He suggested hospice which I didn't want to hear, but they convinced me that was best. I'm happy to have the support they provide.
- By shb152
- Posted January 6, 2009 at 10:11 am
- Report post
Hi Pam,
I use the same coping mechanism that you do. If it is bad news I am really not surprised. If it is good news - it makes it seem any better. I too was afraid of the word Hospice. The Onc recommended this in October - but I kept putting it off - Finally had no choice in Dec.
Tracy - thanks for your input - That is when I finally made the call.
We are using Vista-Care Hospice. So far they have been very kind. Their full list of support services are really helpful. Their doctors seem to know much more about pain management than most others - for example - my husband was on 100 mg Fental patch everyday but was still in pain. Found out after going with Hospice that this only works if you have enough fat tissue to absorb the meds. He has no fat - so this was not working at all.
This is a very tough road for all of us - hang in there and hope for the best.
Sandy
- By Angie-in-SC
- Posted January 6, 2009 at 11:20 am
- Report post
Oh Pam. I am so very sorry. Words escape me.
We didn't make it to hospice care. Mama was terrified of the word, and I guess in a way, God knew that.
Just know that I'm thinking of you and your family and lifting you up in prayer.
I hate lung cancer. Hearing about your mom today and the loss of Don M - It's just not fair.
sending you a big hug, Pam.
love, Angie
- By hopefuldaughter
- Posted January 6, 2009 at 6:44 pm
- Report post
Marie - You're such a source of support here...thank you again.
- By hopefuldaughter
- Posted January 6, 2009 at 6:48 pm
- Report post
Angie - thank you for your thoughts. As you know, it means a ton to me.
And a big thank you again to everyone else. I'm gearing myself up to call home to see how it went today with the hospice people.
- By iahawk97
- Posted January 6, 2009 at 9:08 pm
- Report post
Oh wow. I am so sorry to hear about this and you are in my thoughts and prayers. I am terrified of the hospice word too. If it comes to that with my mom I don't know how my sister and I will manage with in home care - She has two little ones and I am single and have to work. So far mom is doing OK, but when and if we get there I just don't know what we will do. You and your family are in my thoughts and prayers. I am so sorry you are there ....
jessica
- By FrankClem
- Posted January 7, 2009 at 5:11 am
- Report post
You're in my thoughts, Pam. Be strong.
Your Friend,
~Frank
Add to the discussion