~At What Point Do I Contact Hospice?~
 

We are not giving up just getting ready because I heard that you should not wait too long before contacting Hospice. Any suggestions as to when? Although I do not want to even say these words I do not want to miss the bus. It is important to him to be at home during the end phase whenever that may be.

Does he need to give up on treatment before they get involved?>>Believe51

Dear Marie and Ed,

I don't have an answer to your question but after reading your post felt the need to offer you my love, support and a hug! It isn't much, I know....but hopefully knowing I care offers a bit of peace to your souls.

Love you guys...

Mary Jo

Hi Marie! The quick version I have here- Nicola was approaching liver failure, and her nurse practioner suggested that she call hospice to get the mechanism in place for when it was needed. A few days later, we saw her onc., who was a little upset at that. She said that hospice didn't need to be involved until ALL treatments had failed. I guess, like most things, the right course of action is in between. Personally, rightly or wrongly, I didn't want to contact hospice prematurely, because I thought it may "lessen" Nikki's will to fight, you know what I mean? Eventually, we did call. I called hospice and was told that the doctor needs to be the one to call. (This was in VA) Keep in mind, for ins. purposes, once "Hospice" is involved and there is no other course of treatment involved, certain things will no longer be covered, at least with our insurance that's the way it was. Hospice does provide alot of help and services that you may not be aware of. One example, if you need a "lift-chair" my ins. covered it, but once we went into hospice care, it didn't. I had to buy one. Talk to your onc. and your ins. people. I'll help however I can, Marie. You and Ed hang in there.

Marie,

Not knowing anything about what is exactly available to you I hesitate to say.

I'm pretty sure you can at the very least call the hospice available to you, find out, have a meeting even. You'd know from the 'horses' mouth', have some paper work and the like.

Also, to my knowledge the other info here is correct. you are not 'eligible' until tx's have been stopped or there is nothing left to even try.

This I have learned most recently through our dear friend who is at end stage -lung cancer.

IMHO it makes me feel better to have as many ducks in a row as I can. Whatever I still have some control over........

MORE of these XOXOXOXOXOX
patty

Hi Marie
 

Palliative Care vs. Hospice Care - Definition

This article may be of help to you. My husband, too, wanted to be at home. He had seen so many specialists and was getting much weaker. His GP (the general of the group) on Tuesday recommended that hospice be called in. I waited until Thursday to call hospice in (as my husband's birthday was Ths. and I just wanted to get through his birthday) and then hospice started the following Monday. My husband had a birthday on March 30th, and on April 9th he died. People that visited the week of his death thought he looked pretty good and didn't look sick, but you know your husband best. Cliff's doctor was amazing. He knew he would never see him again and put his arms around him and told him what a brave man he was and he was amazed by the courage Cliff showed throughout.

I personally would have liked hospice in a little sooner, but my husband wasn't ready and that was his choice. Once hospice was involved there was a weight lifted because I knew at a moment's notice someone could be here. One day they were in 6 times, but it was warranted.

What are Ed's thoughts on hospice? It might be a good idea to talk with a hospice provider and then you'll know what to expect when it's needed. I hope this helps and I'm thinking about both of you.

Hugs and more hugs. You have good info from others here who are experienced and wise. I have nothing to offer but hugs, and lots of them.

I would at least contact them and talk to your doctors about. I have had a number of close friends die from cancer, and all had hospice services; one only in the last week, which everyone felt was too short; another for at least a month (maybe more), and she had a very good experience with them. I know aggressive treatment has to end before hospice. Have a peaceful weekend.

I would call and talk with Hospice. It's getting your ducks in a row. I think of hospice as not only making the patient comfortable, but helping the family care for the patient and themselves. I know that some people have improved and left hospice, and some people have been in hospice for more than a year before passing. In fact. I think insurance regs have tightened because people are surviving so much longer in hospice due to new treatments. So talk with hospice.

Marie
I was sad to log on and read your post about Ed, but I do know there is much strength between you, and love and prayers from all your friends here...lean on us as you need to...we are here for you. When my Mother in Law lived with us, she progressively got worse, and was constantly going for transfusions...it cam to a point where the Dr suggested Hospice...she was all for it, until she found out that proactive treatment would cease, and she would be kept comfortable, but without blood infusions etc. She changed her mind...now maybe things have changed since 2001, but it is a very personal decision when no other options seem available....you are in my prayers Marie, please stay strong....miracles happen every day.

I, too, was saddened to log on and read your post. Then I was immediately struck by your bravery, both of you, going through this journey. What a wonderful thing this support group is. I do not have any answers to your question but know that you will get the right advice here. And what a blessing to us all to have a place where we can ask the hard ( if not impossible ) questions. And get answers. Strength to you!!

Marie,

I am heartbroken to read your post. Follow your heart and you will find the right answer. I have also heard of people who have flunked out of hospice :). I hope and pray that your miracle comes soon.

Holding you both up in prayer.

Thanks for these posts, I appreciate the honesty involved here. We have agreed together that this will remain with the fire extinguisher, use for emergencies only and do not play with fire (smiling).

I will continue with more detailed palliative care for Ed as we seek to find the answers.

Hospice will be reserved to help me to help him into Angelhood.

And I am thinking of seeking a grief counselor which I always thought you met afterwards. Any thoughts on this? I have just started to mourn my Mother-in-Law's passing.

Hope I do not sound morbid or sad. I need to start looking at this aspect of the disease. I never had to look this hard at these issues.>>Believe51

Marie,

'Hospice care' should be used whenever Ed is entitled to it. My Mother-in-law was under hospice care twice - yes, 'twice'. First time happend when she had had a mini stroke which made her condition 'appeared' to be going downhills fast. But she came out of it (a natural by-pass?) and stayed in the nursing home for another half year and the hospice care was provided again when her condition deteriorated again.

As long as Ed is not under treatment, I think he's entitled to hospice care. Is he staying home with you? As to the 'grief counselor', Ed's doctor or nurses should have the best information for you in the 'local area' aspect. Do you have a family doctor? Check with your own clinic and insurance company first see what's available. The most economic way is probably contacting your County Health Department and talk to a certified grief counselor if there is one.

You have done such a tremendous job for Ed and members on this site. I think we all feel like a big family here. Somewhere I have read that the best counselor is someone that is close to you - someone that knows you well and able to provide comfort and guidance. I do think one should seek counseling when feel the need. But I don't think it's necessary for anyone to 'get counseling' in order to come here in a 'better' shape. We are sort of in a 'group counseling' session here. And we are your friends and sisters. We've been reading 'Today's joy' from you; we sure like to share 'Tomorrow's sorrow' when it happens.

Dear Maire,
You are not being morbid or sad.
You are being brave and facing the part of life that everyone fears or runs from....

Sending you much love,
Jean

Marie, My love and hope to both you and Ed. You are the "dream team" here at Her2.... wish I could help in some way. Ceesun

Marie I don't have answer's but am sorry you have to even think of this.
I have a nurse friend who used to work in this area and she tells me it's very important to get pain management before it becomes critical when it's harder to manage, just like taking nausea pills during chemo.
I hope Ed does'nt need this for a long time and will be thinking of you both:)

And I am thinking of seeking a grief counselor which I always thought you met afterwards. Any thoughts on this? I have just started to mourn my Mother-in-Law's passing.

Marie,

I think this is a really good idea. Of course, I realize your first priority and time commitment is to support MO - you would not ever have it otherwise.

But you are dealing with overwhelming emotions, and if you are able to make some time to do this for yourself, it may help you both.

Of course we are always her for you, and I myself am overwhelmed by the depth of love and support your sisters and brothers here have shown. But we are both blinded by love for you and perhaps not actually qualified to support you in the way that a grief counselor might be able to.

Much love
Chris

Marie,
My thoughts and prayers continue for you and Ed. May you feel our loving Lord's arms around you both, lifting you and Ed up, and knowing that he is always there through all things that we endure on this earth.

Marie,
You dont have to appear to be abything but what/who are are with us,I hope you know that. But if you feel the need for help..get it...there is no shame in seeking help. You have had an incredible amount of sadness these past few years.YOU are an incredible wife,daughter-in-law and an exceptional human..take care of YOU and Mighty Oak in any way you can. We will be here...

The above post was from me,Marcia

Marie,
I was going to post this offline to you, but I decided that the rest of the "family" could hear it too because this belongs to all of us, not just to you (even tho you ARE the most special , although don't tell because I've told others THEY are the most special and I meant it then too).

Whatever you decide to do, do it for yourself and for Ed and do not feel that you need to hold back or protect us from your fears, sadness, anger or whatever it is you are feeling.

If you can't share it here, where else? We all know this is not Disneyland even though at times it is the happiest place on earth as we are able to share hopes, joys, victories and even a full forum where we can "keep our minds off cancer".

This is a place to share encouragement, both in the form of emotional support and in the remarkable research discoveries that unfold daily. This is a forum that does push people to continue the fight, and provide information and weapons to do that. I believe it gives people the courage to keep going, further than they thought possible. And that is a good thing (although even that drives some people away!)

We are a family by choice - none of us chose to live with breast cancer, but we do choose to be HERE. We call it a forum but it is really a haven.

To be a true haven, it must be safe to come no matter what you have to say, or feel. Even, and especially, when you are on the brink of despair or worse. It's like the old saying, "home is the place where, when you have to go there, they have to take you in". Well, HERE is the place that, when you have to stand against your fears, we have to stand with you.

We do self-censor because we are lucky enough to "live" in a family that includes those who are likely to be cured as well as those who just hope to outlast the devil while stretching for that cure that's just around the corner. I am so grateful to this family, because I couldn't bear to be in a "stage IV quarantine". But I think we do a disservice to ourselves, (and to those courageous "early-stagers" who stay and love us and look us in the eye EVEN THO we represent their worst nightmare) if we don't show it all.

Marie, we are here to honor and help you and MO in whatever you are facing, whatever choices you are making. We of course care deeply what you are feeling and can't help praying and hoping and crying with and for you. And I, for one, would feel deeply cheated if you held back because you were afraid of depressing ME.

All my love,
Chris

Chrisy,
Thank you for your previous post....it speaks volumes to all of us. You deeply touched my heart and I appreciate your wise words to Marie and all of us. You touched on all the parts of our beautiful puzzle that makes this community and family special and "whole"!

Proud to be here!
Jean

Marie:

I helped Colleen with her mother's hospice care and it was an extremely hard time for Colleen. Colleen and her sister, Kim, took care of their mother in home while working full time. I admire their strength and dedication, but I also know that they tried to keep their mother out of hospice care for far too long. When Kim had a car wreck driving home after taking care of their mother due to exhaustion, it became obvious to everyone that their mother should have been in hospice much earlier. So when is the best time to go to hospice? Only you will know.

Each state and each insurance company has different rules which are sometimes strange and Byzantine under the best of circumstances. MaryJo gave you some very wise advice, go to the hospice today and get your ducks in a row while your coping skills are able to deal with things you will not want to hear, talk about, or think about.

Marie, I find it very sad that you even need to think about hospice but I will pray for you and Ed. I pray that Ed has a turn-around and that you and Ed will share many more years together. I also pray that if that is not in God's will that you and Ed have an abundance of strength.

Marie, please take excellent care of yourself.

Lee

Chrisy,

Thank you for what you wrote. It couldn't have been said any better and it is exactly what I am feeling, so again, thank you!

Marie,

I also echo what Colleen's Husband said - - - TAKE CARE OF YOURSELF!

Love,

Alice

rl2.....posted this here taking the chance that you received e-mails on your subscribed threads.

If you are ever in Rhode Island for a visit I want you to contact me. I would love to meet up with you even if it is around holidays. Keep us in mind, I'd love that.>>Believe51