Hospice has come up today

[Newlywed]

Okay so I am dealing with this... one minute at a time. Today the doc is going to drain the fluid under general due to is confusion he was combatitive yesterday and refused the procedure.

They are also checking the liver ammonia to see if that is why the confusion.

The bad news but it did not blind side me because today I realized with 4 1/2 weeks in the hospital with no improvement John just needs to be home. But the doc brought it up and while it is still in the beginning stages he is going to talk to a team of Doctors to make sure that there was nothing more they can do. Because he is pretty certain that the fluid in the cavity is not infected. So over the course of the next few days different doctors are going to come in and talk to me about hospice. John is suffering so much physically and mentally and truly they have doubts of him getting back to the point where is body can take chemo.

So can I have insight on these doctors visits. What do they go over? etc...

One thing I look forward to is being home with my husband, sleeping in the same bed and being in his arms for as long as it takes.
I'll also have a conversation with my step son who is 15 along with the youth pastor to explain it all to him asking him if he would like to be home with us during this time or would he like to enroll in school where his grandparents live and then visit us during this time. I think he needs to decide for himself so that he does not feel pushed into something he doesn't want to do.

[Anji]

I haven't had those conversations with the doctors yet, so I can't advise you what they will say, ask, do, etc. But know that I am praying for you both today... without ceasing.

The one thing that Larry and I still haven't come to a decision on yet is WHERE he wants to die. We have four children at home. And we just can't decide what would be best for them....but I do like the idea of Zane making the decision. That will give him some sense of control....he can be there when he wants to be but also has a place to "escape" if needed....

Sending lots of love and hugs and prayers your way today.

Anji

[Ashlee H.]

I'm so sorry for what you, John, and Zane are going through. I don't know about the questions regarding Hospice, but all I've ever heard is people involved with Hospice are fabulous. My brother died last year of lung cancer. During his last few weeks, he was completely out of it and would get combative. He was in the hospital and they had someone with him 24/7. I helped a neighbor who was going through stomach cancer. She refused Hospice, so they wouldn't send her home, and the only option was a care facility. She was alert, but had problems communicating. As you get weaker you just don't have the strength to make sounds so words can be heard. I always regretted not putting something together that she could just point to in order to communicate. I know you can buy communication boards on line, or the hospital may have access to some for your use. It has got to be so frustrating to want to communicate and not be able to. Studies have shown music helps the patient to relax - so get some of John's favorite CD's and play away. For me, if at all possible, I want to die at home. However, after going through it with my neighbor if I get to the point I can't communicate, have to wear diapers, etc., then I don't want to put that on my family and friends and would go into some type of care facility.
It sounds like you are getting a good support group around you and Zane. There is just no easy way to deal with this.

[KellyBelle]

I don't have experience with hospice other than a good friend of mine who basically waited too late in deciding to get treatment, and almost waited to late to get hospice arranged. No matter what happens, getting hospice on board sooner rather than later is a good idea... people get better and come out of hospice care too.

You are one strong caregiver and John is blessed to have you by his side.

Kelly

[Kathleen808]

NW,

I am praying for you, John and Zane. You are continuing to be a great wife to John and a wonderful caregiver. It sounds like going home with hospice is a good idea. I will continue to hold all of you in prayer as you give comfort to John on the next steps in this journey. I am sorry you are at this place but I pray for peace for all of you.

Aloha,
Kathleen

[janklo]

Just wanted to say I am thinking about you and John. A coworker of mine had a situation where her husband's throat cancer was no longer treatable and she used hospice. She could not say enough good things about them. Due to his medical condition, they brought in a recliner into their living room and he spent most of his time laying in the recliner, it was easier to sleep in the sitting/reclining position. The hospice people were able to give her and her two teenage sons a good idea of what to expect when the time came and about how much time they had left with their dad/husband. This gentleman did die at home because that was his and his family's choice. They described it as very peaceful. After he had passed on, the hospice staff came in and took care of everything for them. I think it would be very helpful for you to talk with them at this point.

[cptmac]

Hospice is a wonderful organization. Your docs and the hospice people will be there for you. Don't be afraid to contact hospice when you need a break outside the house. They have been very comforting for me, when I've been the caretaker, to know that someone would be with my loved one, while I got groceries.

They will ensure your loved one has what they need to be comfortable at home. They'll ensure they are never in pain.

My docs and the hospice people could tell I wanted to spend every minute with my loved ones. But they let me know that when the time comes, the person would decide if they want to be alone, or if they wanted me to be by their side. They really had to encourage me to take care of myself, it was okay to go to sleep, etc, etc. They helped prepare me for what was to come. They helped me emotionally in case I wasn't there when they passed and let me know that it would be okay. They also left the door open for me to contact them after my loved ones had passed.

So they will be there for the one who needs hospice, but they will be there for you too.

My heart and prayers go out to you at this time.

[weisssoccermom]

I also don't have any insight into what questions, etc. to ask about hospice. I've known of people who utilized them and have heard nothing but great things concerning the caring way that hospice works. This has to be incredibly difficult for you - not only having the discussion but actually dealing with all the emotions, etc. I do think that getting Zane's input on how he wants to deal with this is a good idea. He's old enough to make that decision for himself and to know what he is/isn't comfortable with.

You might try PMing Cindyz, surfingon or Sharon (might be SharonR) from this board. They've traveled down this road before you and can certainly give you some good advice about what things to expect, what questions to ask, etc.

However you proceed, make sure you also take the time to take care of yourself as well. You're going to need all of your physical and emotional strength to get through the difficult weeks and days ahead of you.

Jaynee

[catta]

Im still praying and holding our for a miracle for you.. hoping that if they can drain the fluid and settle the confused state, things may turn around. Will keep praying.. XXX

[SoCalSaz]

I wish I could say something to comfort you or to give you an answer, NW... all I can say is that you and John are in my thoughts and heart, and am sending every wish for peace and relief and comfort.

I haven't had any direct experience with hospice, but have known some close friends who have had loved ones in hospice... and their experience has been what everyone here has already described. It's a hard conversation to have, of course, but ultimately a merciful and loving one -- for you, for John, for Zane, no matter what happens.

[jmarie]

I just wanted to say how impressed I am with how you are taking care of John's son. I had an excellent stepfather and if something had happened to my mother when I was still at home I would have stayed with him rather then go with my biological father.

Still praying for all three of you.

[elissa]

You, John and Zane are always in my thoughts and prayers. I am so sorry that things have not begun to improve, but I continue to hope and pray for a miracle for all of you. You have really been amazing and strong, and John is so lucky to have you. I hope that you have a support network in place for you. It is really good that you are looking into hospice. My friend at work said that they were truly wonderful, and the earlier you get them in place, the better. She had them for six months when her husband was dying. He was able to be at home the whole time, and that is what they wanted as a family. I will continue to send prayers and positive vibes your way.
Elissa

[Surroundedbylove]

I'm hoping Cindyz, SharonR or surfingon have some input on the hospice questions.

I just wanted to say that my thoughts and prayers are with you and Zane.

SBL

[xharryx]

you are in my thoughts and prayers. i am sure he will be more comfortable at home and i pray for strength for you to get thru this. god bless you during this time.

[surfingon]

Newlywed, I'm so very sorry that you have so much on your plate all at once. Really hoping that the mental confusion is due to ammonia build-up and can be treated with Lactulose. Your comments gave me a flashback to how paranoid and combative John got whenever the ammonia levels got too high-- your description of your husband John sounds very similar.

About what may transpire regarding a referral to hospice: i imagine that John's current doctors will talk to you about what they feel is his prognosis and how you feel about getting him back home and under hospice care versus remaining in the hospital and more aggressive treatment. They need to be sure that you agree to the referral.

You're already way ahead of them, and though I know that arriving at this place mentally has been excruciating for you, it is also a blessing in that you have reached this conclusion on your own, watching what John has gone through-- and you are sure now that you don't want him to suffer any longer, and that you know that he does not want that either. Even though you don't want to move in this direction, you know that it is right for both of you at this point in time. That certainty will give you much more peace of mind in the coming days as you are freed from the agonizing decision-making and can focus entirely John's comfort. A good hospice nurse can orchestrate near-miracles as far as patient comfort (emotional and spiritual as well as physical) and clarity. You know for sure that no one can take care of him like you can-- I pray that you find the same solace that I did in lovingly caring for him at home.

Once you've had the hospice conversation with John's doctors, then you will speak with the intake person from hospice, who will explain to you what services they offer. Just so you know, all medications relating to John's diagnosis should be covered by hospice. They will not pay for any drugs that are aimed at "curing", but all others should be covered. They should also provide all medical equipment needed, like an electric hospital bed. bedside commode, walker, oxygen, catheter, etc. They will also offer a home health aide to help with bathing him. I though we weren't going to use that service, but it was really helpful for a while to have an extra person helping out with that-- made me feel a lot less concerned about John falling and hurting himself. A nurse will come regularly, depending on what is needed, and occasionally the hospice doctor will come as well-- again, depending on circumstances.

As others have commented, hospice care focuses on the entire family, so you should get some much-needed support, and respite whenever you need it. They will have a social worker and chaplain on staff who can also be very helpful. A good hospice can work wonders with family dynamics and might be very helpful as far as supporting Zane and helping him to be able to be present (if he wants to) for his dad. Hospice care also includes a year of bereavement follow-up for the family ; they usually have a bereavement support group that meets regularly as well.

My heart and prayers are with you. Please feel free to PM me if you have any questions.

Wishing you peace during this difficult time,
Rachel