So -- I Ordered Up "Special Nursing Services"

[USU78]

After consulting with my home teacher (an anesthesiologist) and my wife's primary care guy, I made the decision to order hospice to help with "personal care" and pain management. It's the right decision after her suffering for nearly 17 years of RA and related maladies. She had a fall in January that broke one shoulder and injured her other rotator cuff and, worst of all, injured her back, putting her in a hospital bed and impinging on the sciatic nerve. She's already aged 10 years in the last year.

I've brought a few folks in the ward in on the decision, a brother and my older daughter . . . nobody else, not even my wife. She asked for better pain care (they'd already been dumping as much as DOPL will allow into her to little effect) and has been worrying about being too much of a burden (I've had to do the lion's share of care for years now). The problem is, how much do I let her know what's going on? To those who are in health care, insurance or have lived through such things, the implications of the decision are obvious. She may know already, but I'm not going to force the information on her. That will certainly unfold if she cares to pay attention.

I don't want her to give up, though the situation is ultimately hopeless. Should she choose to, G-d willing, she'll have some comfort as things wind down. Should she choose to fight on, at least she can do so without agony.

Do I let her in on the useful fiction that "special nursing services" equals end-of-life services?

[blackstrap]

I think you have done the right thing and that ,unless queried by her directly,there is no need to burden her with what might be guilt producing .There are much better pain management protocals available but the fear in the medical community hinders their use.

May the Lord bless you in this time of sorrow.

[thesometimesaint]

USU78:

I am so sorry. I can't imagine the pain and suffering you both are going through right now. May the Lord bless you with the blessings of comfort for now, and help in the terrible times that are ahead. I've always felt for myself that I want to know. Tell me the truth no matter how bad it is, and I can deal with it.

[Garden Girl]

Hello USU78...

I'm so sorry... here I've known you on the board for several years and I had no idea you were facing this type of difficulty. We post on this board and never really know what lies behind the avatar. Bless you for being a caregiver... and I too pray the Lord will comfort you both and strengthen you.

You say the situation is "ultimately hopeless." Is there a more definite time frame here... I think that would impact your decision. While I do tend toward TSS's view, if there are several years ahead, you may want to continue with the "specialized nursing" explanation for a while. But, if not, then it may be best to go ahead and tell her because as you say she may already know. If it were me, I'd want to know... there could be certain things I wanted to do if able... letters to write, calls to make... maybe paint the great American masterpiece.

You know your wife best... what do you think she would really want? Prayer for guidance will help you decide I know.

Bless you... GG

[Bill “Papa” Lee]

After consulting with my home teacher (an anesthesiologist) and my wife's primary care guy, I made the decision to order hospice to help with "personal care" and pain management. It's the right decision after her suffering for nearly 17 years of RA and related maladies. She had a fall in January that broke one shoulder and injured her other rotator cuff and, worst of all, injured her back, putting her in a hospital bed and impinging on the sciatic nerve. She's already aged 10 years in the last year.

I've brought a few folks in the ward in on the decision, a brother and my older daughter . . . nobody else, not even my wife. She asked for better pain care (they'd already been dumping as much as DOPL will allow into her to little effect) and has been worrying about being too much of a burden (I've had to do the lion's share of care for years now). The problem is, how much do I let her know what's going on? To those who are in health care, insurance or have lived through such things, the implications of the decision are obvious. She may know already, but I'm not going to force the information on her. That will certainly unfold if she cares to pay attention.

I don't want her to give up, though the situation is ultimately hopeless. Should she choose to, G-d willing, she'll have some comfort as things wind down. Should she choose to fight on, at least she can do so without agony.

Do I let her in on the useful fiction that "special nursing services" equals end-of-life services?

My heart aches for you both…always tell her the truth if it concerns her, and when she has had enough, let her go. From the lines of a poem…

The righteous say, "we rise again".

The godless say, "this is the end".

The foolish say, "I do not know".

The dying say, "just let me go"!

As you know it is easier to be in pain than to what someone you love in pain.

[ttribe]

I had to make this same decision with my Dad when he was dying from pancreatic cancer. I feel so bad for you that you're now having to do this with your wife.

My suggestion - characterize the visits as "additional palliative care", which is what it is. I'd explain to her that this is a pain management treatment. She doesn't need to hear the word "hospice" and all the unmentioned meanings that go along with that.

Best wishes.

[USU78]

You say the situation is "ultimately hopeless." Is there a more definite time frame here... I think that would impact your decision.

In order to invoke hospice an MD must make a finding that, in his best professional judgment, she has less than a year to live.

An easy call to make in this instance.

But she's surprised us many times before.

[USU78]

"additional palliative care"

Is that what they guys give you who carry the casket?

USU "Galgenhumor" 78

[ttribe]

Is that what they guys give you who carry the casket?

USU "Galgenhumor" 78

That's morbid...but funny.

[MorningStar]

It depends on your wife's personality. If it were me, I wouldn't want people tiptoeing around me pretending I'm not dying. A friend of mine passed away recently and he was very appreciative of people who told him goodbye, not avoiding the reality of the situation. I don't know what the answer is, but you are in my prayers. I'm very sorry you have to make such a hard decision.

[USU78]

Thanks for the kind words, folks . . . I, however, ain't the issue here: her best interests are, and I'm not interested in discussions about poor l'il me.

USU "The Lord Above gave man an arm of iron . . . so's he could do his job and never shirk." 78

[rpn]

I guess I am in the minority. When I am dying and unable to care for myself, I will need to trust my caregivers. If they lie to me, I will not be able to do so. There is nothing wrong with telling her that you've asked hospice to help you do a better job with her pain management, and confirm that is alright with her. If you are uncomfortable with her dying, she will be uncomfortable to in an effort to spare you. But she is dying and deserves the courtesy of the opportunity to finish what she wants to finish. I'm gonig to be pretty danged ticked at my spouse when he joins me in heaven, if he does what you are suggesting you want to do.

[USU78]

I guess I am in the minority. When I am dying and unable to care for myself, I will need to trust my caregivers. If they lie to me, I will not be able to do so. There is nothing wrong with telling her that you've asked hospice to help you do a better job with her pain management, and confirm that is alright with her. If you are uncomfortable with her dying, she will be uncomfortable to in an effort to spare you. But she is dying and deserves the courtesy of the opportunity to finish what she wants to finish. I'm gonig to be pretty danged ticked at my spouse when he joins me in heaven, if he does what you are suggesting you want to do.

Thanks for your input.