My Last Question about Hospice (promise)

[Mike 03]

Thanks from the bottom of my heart to all of you who helped me locate some great resources for learning about Hospice, as well as for sharing some of your own experiences. Please accept my gratitude.

This last question is really petty, but it's something I've wondered ever since reading a couple of enormously poignant books by Hospice workers. It makes me nervous that they are able to recount in detail the final conversations between loved ones and the dying. Does this mean they are going to be in the room during these really intensely intimate moments? I know I'm going to be an emotional wreck during this process. That's okay, this process needs to happen, but it's kind of intimidating to think that someone might be watching all of this. I'm even embarrassed to have my own siblings see me in the state I have been in and expect to be in, let alone someone I don't know.

Your advice, website recommendations and personal stories have helped enormously. Thank you.

[supernova]

1. Yes and no

They come and check on you every day... if the person is at home. Making sure that you have enough pain meds and explaining the dying process so that you aren't surprised or unnerved by what is happening.

Sometimes they happen to be there.. Sometimes not. My mother died at 3:30 in the morning... so nobody around but us, her children, me, my brother, and my sister.

You must call them when the person does die though, that way they can intereact with the M.E. office and transfer the body to a funeral home and all that for you. And they can close out their paperwork and arrange for any medical equipment to be picked up. Again, so you don't have to do any of that.

Much love you you Mike; it's the hardest thing we ever do. :hug:

[Mike 03]

8. Thank you!!

:hug:

[Mike 03]

12. P.S, I can't believe I was rude as not to say that I'm so sorry for your loss of your Mother.

She was so lucky to have her beautiful family like you around her.

[likesmountains 52]

2. We were alone with my mom at a Hospice unless we asked someone to come in

The staff made rounds but it was more like they just poked their heads in while we were there to see if my mom needed anything. I never felt like anyone was hovering or intruding.

[Mike 03]

9. Thank you.

When I thought about it, maybe it would be nice to have someone there. I don't know. Thanks for your reply!

:hug:

[Mike 03]

13. Bless you and I'm so sorry for your loss of your Mother.

Hugs to you. Your mother was so lucky to have a child like you.

[grannie4peace]

3. only if you want them to stay with you.

it all depends on the family's wishes. i was a hospice volunteer for a year once. i was neat. i never was with a person who passed. you should be able to talk frankly with your hospice workers. you should only be blessed by the experience.

[Mike 03]

10. Yeah, sometimes I have second thoughts and think it might be nice

to have someone there.

Thank you and everyone like you who was a Hospice volunteer. I can't imagine a more difficult job. It must attract the kindest people in the world, living angels.

:hug:

[uppityperson]

4. If you want them there, they can be. They are there to support

the dying person, and family/friends who are there.

Speaking from the viewpoints of both a former Hospice nurse and a child of a dying parent with Hospice involved, we have seen a whole lot of different reactions, we have had a whole lot of different reactions, and it is fine to just be you.

What with HIPPA stuff, no one will be allowed to pass on stories about you later. If you break down, if you do not break down, no one will pass judgment as there is no one right way to be or thing to do.

Having a parent die is very difficult. Be yourself, take care of yourself, and don't worry about someone else's reactions (esp Hospice) to you.


Personal : I walked into the room my parent was dying in (night before died) and then reversed and walked out saying "I can't do this". I MUCH prefer being on the nurse side than the family side. I talked with people and went back in and was there for the final ending. It was difficult. It was excruciating.

Hospice nurse: there are all sorts of ways of being and taking care of yourself during the process is of utmost performance. Don't try to please me as I really don't care except to try to help the dying person and you, family and friends. It is hard for you to go through this, and I will not pass any judgment upon you. Oh yes, most Hospice Staff are trained and well picked for being able to be there for you and be open minded for you.

[Mike 03]

15. My heart goes out to you and your parent, and I can't thank you enough for your

reply. This is so very helpful.

After I posted my OP, I was thinking that maybe it might even be a good thing to have a Hospice person around.

Basically, I want to leave it up to my Father or the Hosptice people depending on the situation because they know best.

I just realized I'm not ashamed to show my emotions. Heck, over these past months I have shown them plenty of times, and nothing terrible has happened.

It might be nice to have someone there.

[geckosfeet]

5. No. If you ask for privacy you will get it. I suspect most stories about

"final conversations" are examples, hypothetical and extrapolations of real events.

A good hospice will be there when you need them, and go away when you don't.

[goclark]

6. My dear aunt was in hospice on the East Coast and I was on the

West Coast.

She had the most wonderful doctor who had a spirituality that I appreciated during that traumatic time.

I was so torn because I was not able to be there with her during her final days.

The Dr. told me not to worry.

She promised that when the "end was near" she would ask the nurse or
a family member to call me.

It was her experience and belief that if they are able, our loved ones will wait for us to "release them."

When I first heard her say it I thought she was a bit crazy but I still liked her.

About three days later I received the call. The doctor was there and she reminded me of our conversation. She put the phone to my aunt's ear and I poured my heart out to my aunt. I told how how much we loved her and how meaningful she was in my life.

Tears were rolling down my face but I didn't try to brush them away. I just kept telling her how I adored her and I wanted her to rest in peace,just rest in peace.

My aunt didn't say anything to me but when the doctor took the phone she said(and other family members that were there told me later) that my Aunt had the most beautiful smile on her face.

She died within that hour.

I will always treasure the kindness of the Hospice nurses and the lovely doctor that made her final journey peaceful.

:hug:

[TNDemo]

7. A book recommendation

for you would be Final Gifts. It was written by two hospice nurses (one of them is named Maggie Callahan - can't remember the other but it's out there). I found it very inspiring and comforting through the process.

As far as your question, hospice wants to accommodate you and your vision for this and if that involves not having them at the bedside, then ask them if you can be alone. Do whatever makes you feel comfortable.

[SmileyRose]

11. When we lost my Dad last year at hospice

they were readily available but stayed away unless called - the only exception was the last day - we all knew it was the last day - they came in about every hour without being called to check to see if he was still here or not and were very unobtrusive.

[SoCalDem]

14. By the time "it happens", you will "know" these people

and will lean on them for support too..

As a parent of a child who underwent a lot of hospital trauma in his early years, I can remember being ashamed/embarrassed to cry in front of the nurses, but before long, it did not matter, and many times, they cried WITH me...

It's all new to you now, but as the time goes on, you'll see that it changes :hug:

[Mike 03]

16. Thanks. You are so right. I'm not ashamed to break down, and this is not about me or my sisters

this is about him, and what he wants and is comfortable with.

This has to be perfect for him. I wrote him a very long letter telling him how much he means to me, why, and what things about him I will remember forever. He knows how much I love him. My whole purpose in life right now is to try to get someone to pay attention to his need for pain control. It kills me that he is in pain every moment of every day.

This is just a matter of putting things in the proper perspective, respecting his wishes and honoring them as best as possible.

[handmade34]

17. an answer....

Mike 03-- I have just come on and did not see your previous post. I assume you are anxious about your reaction to your mother dying. Don't hesitate to act and do whatever you need for yourself and care nothing for what other relatives, friends or helpers think. I only have my stories... Hospice people are wonderful and will do want you want and answer questions you may have! In the past few years I have been with my last husband and my step-father when they passed and also my daughter put me on the phone with my 1st husband just before he died. I would not change those experiences for anything. I talked and touched and was quiet when needed. There was a sweet sorrow and sense of peace that I experienced that is unlike any other (except possibly birth). All of my children were born at home with the help of a midwife and I see hospice workers in the same way as transitional(liminal) helpers. May the spirits be with you!

[emilyg]

18. Hospice cared for my Dad in

a nursing home setting. We had all the privacy we wanted. They would come in when appropriate - to check on drip, etc.

edit: Mike, ask as many times as you want or need. A lot of us have been through this. Hug.