Being with someone who has a terminal disease or is dying

[Mike03]

1. What do they need or want from me that I have to give them?
2. How do I overcome or conceal my fears of his or her death so that I can be calm and helpful to them?
3. What if I can't suppress or repress my fears of the situation? Is there something I can do to eradicate my fears so that they don't ruin the situation?

Does anyone know of some resources to help deal with the death of a loved one with a terminal illness? This is very very important to me. Thanks for any advice or help!

[fizzgig]

1. i don't know that i can be any help

but check into support groups at hospice centers

:hug:

[merh]

2. They just want your love

and they want to be touched and held, to be treated like they are as normal as possible. That is, that they won't break if you touch them and they won't give you what they have.

For the most part, those that I have dealt with want honesty, and they want to share how they feel. To not pretend all that time that they are brave. IMHO, they have those fears too - share your feelings, fears are normal, just love them.

[NNadir]

3. First off, having been there twice, there is no "right way" or "wrong way."

The second time, I tried not to repeat the same "mistakes" I thought I made the first time. What I discovered that the perception of having made a "mistake" was actually my own feeling of helplessness and sorrow and regret. I felt equally as bad when I chose to take a completely different path.

Also don't assume that there's only "one way" to deal with this. People are different in life, and so they are in death and dying. The dying person will have an opinion about how to proceed. If I were to advise any single thing, though, it would be this: Listen.

But if you love the person who is dying, you cannot do the wrong thing, because what you are doing is loving someone.

We are all dying, actually, but some of us just have a better idea about the time frame and the nature of the end.

I hope this helps.

[Beausoir]

23. "you cannot do the wrong thing, because what you are doing is loving someone"

How beautiful.

I know exactly what you mean.

[CaliforniaPeggy]

26. My dear NNadir...

But if you love the person who is dying, you cannot do the wrong thing, because what you are doing is loving someone.

That is so beautiful!

It made me cry, it did...

I am writing it in my little blank book, with the attribution to you...

Because I love someone who will die before me...

Thank you for your eloquence tonight!

:cry:

:hug:

[suninvited]

4. I have been there and I know how you feel.

Hospice has some wonderful resources. They have literature and counselors and are the most caring and giving group of people I have ever encountered.

Contact your local Hospice, as someone already said.

When my fiance discovered he had cancer it was such a shock to both of us. For the next year I went through every emotion humanly possible, and never knew if I was doing the right thing, or being the person he needed me to be.

Until three months before he died, I had absolutely no counseling for myself and had refused to allow my own self to have feelings and emotions except to occasionally have a good private cry.

Then he was sent to a hospice residence. I cannot express enough the gratitude I feel for Hospice for helping us BOTH through it all.

[LynzM]

34. My heart goes out to you....

I cannot imagine what it was like to go through that... :hug: :hug: :hug: I'm glad that hospice was a help for you both.

[shanine]

5. It's quite different if you are close

to the person or working/volunteering for hospice, etc.
As a volunteer all I had to do was just "be" there for them, listen to them, talk to them, or be quiet.
Somehow you just know. If I did not need a paycheck I would do this fulltime.
If it is a family member, loved one it is quite different. (for me) Everything I knew and experienced with
hospice patients went out the window when it was my s.o.
When it was a family member it was different as he was mostly not aware so I just tried to make him comfortable, holding, rubbing his back, give reassurances when he was scared (my father).

[SPKrazy]

6. I think being real is the best bet

I mean, you are all you have to give to him, and to show authentic emotion and concern is quite a gift.

I've worked with families who were concerned that saying the wrong thing would be harmful.

I've worked with cancer patients who have consistently told me that all they wish is to be told the truth and that people get "weird" when they find out they have cancer and they just want to be treated like a human being, with dignity, respect, and without some kind of overly cautious pampering type reaction.

Many people flee from their ill friends, family, etc. because they don't know how to act.

Perhaps the best resource about how to act is with the cancer patient themselves, have a dialog about what they want and need.

Cancer support groups can be awesome resources as well if their are any in your area.

:hi:

[Dangerously Amused]

7. I agree with all the hospice recommendations.

Hospice workers are angels.

[MonkeyFunk]

8. ....

1) they want your company, your concern, your caring. You can give lots of things - just help them. Make tea, offer to straighten up or do their laundry, bring good food, watch a movie together.

2) You can't and you shouldn't.

3) Talk about it. You won't ruin anything. The fears are natural, and your friend certainly has the same fears, only worse. Talk through them.

[Flaxbee]

9. Almost any book by Elisabeth Kubler-Ross

would be helpful to you. My mom's physician recommended she read any one of Kubler-Ross' books when my sister was diagnosed with an aggressive cancer. Just type her name into Amazon, and here's a bit on her from Wikipedia:

Kübler-Ross was born on July 8, 1926 in Zürich, Switzerland, one of a set of identical triplets. <1> She graduated from the University of Zürich medical school in 1957.
She moved to the United States in 1958 to work and continue her studies in New York.
As she began her practice, she was appalled by the hospital treatment of patients who were dying. She began giving a series of lectures featuring terminally ill patients, forcing medical students to confront people who were dying. Her extensive work with the dying led to On Death and Dying in 1969. She wrote over 20 additional books on the subject of dying.
She also proposed the now famous Five Stages of Grief as a pattern of phases, most or all of which people tend to go through, in sequence, after being faced with the tragedy of their own impending death. The five stages of grief, in sequential order, are denial, anger, bargaining, depression, and acceptance. The five stages have since been adopted by many as applying to the survivors of a loved one's death, as well.

Some people think she got a little nutso later in life, trying to connect with the dead via out-of-body experiences and stuff like that, but I don't think any of that changes her compassionate and helpful views on death and dying.

[Mike03]

10. You have all been of help.

I will probably wait until anyone else might add his or her advice, and print this all out.

Your opinions are very helpful, and my feelings are pretty worthless since I have never been through this before.

[shanine]

11. Love, Medicine and Miracles: M.D. Bernie S. Siegel

I have purchased numerous copies of this book, each time I give it away - I buy another one - it can be very helpful, supportive and appreciated. Dr. Siegel is not a typical medical doctor . . he takes the whole patient, person into account.

[emilyg]

29. After my cancer diagnosis - Dr. Siegel

was my best friend. Read and re-read.

[supernova]

12. Some answers

I've been through it too with a parent.

1) They just want your time and your love. They want you to listen to what they have to say. Just be there. Make tea. Watch a movie or TV with them. Play chess. Spend time in the yard. Whatever you both enjoy doing. They may talk about things they never said before, but it's "important" now. So listen. If you must be away, get a small recorder so they can record their thoughts. In fact do it anyway. Having their voice recorded will be a source of comfort in the coming years.


2) Don't conceal your fears from them. Here's the hard part. You both have to learn how to say good bye. :cry: And it's not a one time only conversation. Make sure you say everything you want this person to know you understand about them and your relationship. And listen to what they tell you. They might periodically talk about what kind of final arrangements they have. Even down to what kind of music at the funeral and what clothes they want to be buried in. It's important that you know these things.


3) No, of course not. Your fears are perfectly natural. And you learn more, you will be less fearful. A lot of it is fear of the unknown. Don't supress them. Talk about them.


I will add my praise to the Hospice chorus. They are really wonderful angels. All of them. They were with us as my mother died and helped us a lot while explaining the dying process.


4) Take breaks for yourself. Go visit with friends, exercise, anything to get your mind off it for a little while. You will be much better prepared to deal with the stress.


:hug: My heart goes out to you and your Dad isn't it?

edit; If you're the caregiver, get a notebook to write down schedules of meds, eating and so forth. It's easier than trying to remember at such a trying time. And it doubly important as you hand off duties to another person.

[Steven_S]

13. You have some reading to do...

You could start here:


http://www.care-givers.com/


In my case the social workers are offering counseling to my wife in case she needs it. They also offer it to me, of course. (I'm the one in trouble)


It's a complex thing but if your heart's in the right place you should do fine.

Good luck to you and yours. :)

[grasswire]

19. a hug seems so inconsequential

:hug:

I don't know you, but I care.

[GreenPartyVoter]

14. Kudos to you for looking into this. When my mum-in-law was dying I

didn't really know what to do and just sort of coasted through the whole thing, probably nearly useless to her. :(

:hug: for you and your loved one.

[Beausoir]

24. I doubt you were useless to her. You were probably a great help.

We all kind of "coast" through the death of loved ones.

Be kind to yourself. Be gentle with yourself.

Hugs.

[GreenPartyVoter]

30. Thanks. *hugs* Sounds like good advice for yourself too. :^)

[lost-in-nj]

15. hey you`

1. What do they need or want from me that I have to give them?

love......
believe me......
love
well at least their version


2. How do I overcome or conceal my fears of his or her death so that I can be calm and helpful to them?


think... ahead. do you wnat them to suffer?? of course not....
no pain, no suffering this is what we want for them...

3. What if I can't suppress or repress my fears of the situation? Is there something I can do to eradicate my fears so that they don't ruin the situation?

I told my Mom that I loved her during those times...asked her how she felt....
njever ever let them know you are at a loss.... n
I gave them love..... all the time


Does anyone know of some resources to help deal with the death of a loved one with a terminal illness? This is very very important to me. Thanks for any advice or help!
have you contacted the hospice in your area?? they will help
and they will let you know
about planning and taking care of YOU so you can take care of them


so sorry Mike..



lost

[Coyote_Bandit]

16. The most important thing is to simply be there

in a caring and respectful way. They will take comfort in your presence. Touch them. Hold them. Listen to them if they want to talk. Talk to themif they want to talk. Sit with them. Remember that you are there for them. It is simply not about you. Focus on them and seeing that they get what they need and are made as comfortable as possible. That is all the advice I can offer based on my experiences.


:hug:

[Swede]

17. Be there for them. Say "I love you."

Talk about anything they want to. Hold their hand. Palliative care will have some good resources,and good people to help you.

[erinlough]

18. I was with both my parents as they died this year.

They want company and reassurance that you are there. My mom was in a coma and to be honest I don't know if she needed anything from us but surprisingly she held tight to our hands, so we held hers. My dad decided to end dialysis so he knew what was about to happen. Sometimes he needed to repeat what was about to happen, mostly to reassure himself, and we listened and confirmed. In the final stages we touched him softly and stroked his arms and he would breathe more easily.

It is scary and you will confront all your own fears about death. It is also the only sure thing on this earth and the only thing we will all experience. To me that was the revelation, and I know it seems all too evident, but it was oddly comforting.

I agree with others that you should get help from hospice, they are very comforting and helpful. About the time you don't think you can take anymore they take over, quietly and carefully, very reassuring.

Good Luck to you, if you ever need to talk pm me.

[GoddessOfGuinness]

20. There's so much excellent advice here...

I really can't think of a thing to add to it. But I want to give you these: :hug::hug::hug:

[Road Scholar]

21. Empathy and compassion. Ask yourself what you would need,

or want. Sometimes, just being there is enough.

[Beausoir]

22. I was with both of my parents as they died. They want you to touch them. Hold their hands.

Keep them warm and securely tucked in to their bed.

Hold their hand.

Talk to them. Stroke their forehead with a tepid rag. Gently. Not too much.

Keep them warm. Hold their hand.

Talk to them. Tell them about good memories.

Hold their hand.


Talk for them. You may just get nods or blinks, but it is all good.

Hold their hand.

Death is natural for those who are dying.

Just give them comfort. Love, peace, creature comforts, and strength.

And, when they decide to go, be glad of it. They are released from the pain and suffering.

Mourn. Cry. Flail. But let them go in peace.

And then....start the healing process.

[easttexaslefty]

33. All, excellent advise n/t

[JeffR]

25. Your fears won't ruin the situation, Mike. The fear is inevitable.

Share the last of their life with them. Be with them. I can't believe they would want more than that.

The hardest thing in the world is to watch someone slip away. But until they're gone, they're here. And, of course, death is not the end for them or for any of us.

I wish you well, knowing how hard this is.

[SeattleGirl]

27. I know what you are going through, Mike.

Went through that with my mom. Being there is the absolute best thing, first off.

If they need you to do anything, or if there is anything you can offer to do, do it.

If they want to talk about their situation, listen.

And if you feel scared, talk about that too. I think they understand; I know my mom did.

And above all else, let them know that when the time comes, it's okay for them to go. That doesn't mean you WANT them to; doesn't mean you won't be hurt and sad, but it does mean that you will be giving them the most unselfish gift a person can give: to let them go when they are ready.

:hug:

[PunkinPi]

38. Agreed,

I went through it with my dad. And what SG said about letting them know it is ok to go is one of the greatest gifts you can give to them (and you will know when the time is right). Good luck Mike.

[xchrom]

28. i spent two years full time helping my partner die -- i spent three years full time

helping my dad die -- i spent a year helping my mom{not full time or anything like that} help her sister die.

what i've learned is -- you can do anything.

your loved ones can puke, shit themselves, have open oozing sores that need changing, bleed from every orrifice -- and you can roll up your sleeves and carry the burden.

you can feed them -- drive them to the doctors spend countless hours waiting at the pharmacy -- and you can do it.

the most important thing you have to tell yourself over and over -- cause it's hard -- is THIS IS NOT ABOUT ME.

love them -- love them more than you love yourself. dig in -- find it and then do more. they need you.

[KitchenWitch]

31. I think your loved one probably just wants you there

Let him or her tell you what they want.

:hug:

[Rabrrrrrr]

32. They want for you to listen without judgment, to be honest, to speak the truth

(that is, don't try to hide the fact they're dying - be honest about it, and about your fears).

Don't suppress or hide your fears - bring 'em out.

And mostly, listen to their story.

Read Arthur Frank's "At the Will of the Body". It's his story of dealing with cancer, and all the frustrations he had with friends and family who refused to listen and be honest, and what he - as someone possibly dying from cancer - would have liked from friends and family.

It's excellent, and all of the books I know about this subject, it is vastly superior to everything else. It's really the textbook on how to be a friend to the sick and dying people.

[applegrove]

35. Sending vibes your way. I don't know what else to say except sorry.

[Mike03]

36. Thank you from the bottom of my heart.

There has been some incredible, incredibly helpful advice here.

This is a thread I will bookmark and print out and refer to.

Thank you. In fact, "thanks" is insufficient. Just, thank you. There are tears in my eyes, literally, as I type this, just from soaking in your kindness, and appreciating all the pain, suffering and catharsis that so many of you have been through.

This is one case where my words seem so inadequate. But, just, Thank You.

[AnneD]

37. I have worked in Oncology and...

done PRN work in Nursing homes. You have been given so many good suggestions.

1)the most important thing is to love them and be with them as much as you can. I would do all that I could to make sure no one was alone. But don't forget to care for yourself too.
2)do for them. I always show the family how to moisten lips, clean the mouth, clean the eyes, and apply lotion to their body. These are simple task and can be acts of love. Even if they are asleep or fading in and out of consciousness a gentle touch is comforting.
3)talk to them (I use a soft tone). Let them know how much you loved them and what they mean to you...Let them know who is there. They can hear you but it takes so much effort to respond and open their eyes. All they can muster is a light squeeze of the hand. Hearing is one of the last senses to go (touch might be the last) IMHO.
4)BUT THAT BEING SAID, tell them that it is ok to leave when ever they are too tired to carry on. Some folks will hang on valiantly for a member of the family that they are close to. Give them permission to go.

Now for you, use hospice services-the earlier the better. It is OK to have the feelings you do. Death reflects the way we lived. It makes us face our own mortality. Ross' books can help you piece it togather-she was a pioneer in this field


I have seen all kinds of folks go all different ways. I've seen siblings come to blows at the father's bedside with him crying for them to stop (and they be removed), I've seen a middle aged father cuddling with his wife and 2 young daughter on a small twin bed, and I have seen a respected and beloved cajun patriarch surrounded by his sons-all whispering soft Creole French words of love while holding his hands. He could no longer respond in English.

Help them go as peacefully as possible-for your sake and theirs.

[Bucky]

39. I am a HUGE believer in support groups

When you deal with that, you're just automatically in over your head. Accept that and make sure YOU are getting the support you need too. Take care to recharge your batteries so you can be there for them.

Each disease is different, of course, but to the extent that you can just be there, talking and listening and doing normal stuff as much as possible is really what your loved one needs. If prayer floats your boat, do that a LOT.

I'll certainly put you in mine, Mike. :pals:

[Shine]

40. As a hospice volunteer, I've had a lot of experience with this

the best thing you can offer, besides the obvious practical support of help with laundry, dishes, shopping, doctor's appts, what have you...is the ability to just sit with them and listen, or just hold their hand.

Be a Compassionate, loving presence in their life. Go to where they're at, don't make it about you and your fears when you're with them.

Get outside emotional support to deal with those fears on your own time. I totally encourage you to check out your local hospice to get help in this area.

I don't know if your loved one is already receiving hospice care, but I cannot say enough wonderful things about this organization. There is much support available to you, the families and most importantly, the loved one who is dying.

I wish you all the best as you walk this painful and difficult journey. Peace be with you, Mike. :hug:

[hermetic]

41. I had to do this, 3 years ago

My husband.

As soon as he found out he didn't have much time left, he put all of his affairs in order, Will, Power of Atty, etc.

We then proceeded to have as much fun as possible. Took trips, visited relatives all over the country. He asked me that when he became too ill to carry on, that I keep him at home. No hospitals, no tubes, just let it happen.

The last 3 months was a lot of work for me. But I did it. I played his favorite music all the time. Fed him whatever he could eat. Kept him clean.

Hospice came in then, too. They also do home care. Actually, they prefer that. They provided all necessary meds and supplies. Even a hospital bed at the very end.

And he went peacefully, into that good night. He'd already arranged all the funeral details so all I had to do was make a few phone calls.

My heart goes out to you, Mike. Just take it a step at a time and do what your heart tells you is right. PM me if you would like to ask specific questions.

Peace