Hospice Care/losing my mother

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My mother passed away on Feb 12, 2014 at the age of  93. She had end stage CHF and COPD. She was in the hospital for one week for fluid in her lungs and then was in CCU for her heart. Her EF went down to 30%. I had just seen her in Dec and she was fine.  She resides out of state with my sister. HER MD told us 'her heart was bad and lungs were weak". She would not be the same when she returned home. That is the truth. WE obtained hospice for her. It was a roller coaster ride for 5 weeks before she passed. She was lucid, eating, sitting ,up and then plummeted down to becoming bed bound  , not eating or drinking  ,confused, little output. IT was agonizing to  watch this. SHe was on MS IR, Ativan, and would not take her heart meds for one week before her passing. Her MD had told her she would not get better. I don't know if that was good to tell my mother that. She was so spirited and loved life. She was on 160 mg of Lasix, Toprol, Coumadin for Afib and many COPD meds. BUt up until this event she was ok. I miss her deeply and her last night her respirations increased, I called the hospice nurse to come and check her . Her eyes were not responding, and he felt she had an event?? He gave her .50 MS and she passed away two hrs later. DId this cause her demise?  Should we as a family done more?  We were all there with her, telling her we loved her.She had wanted to be resuscitated but we felt her condition had changed so much it would be more painful,and would it have changed her condition?  we now have guilt and unanswered questions. Hospice was good but we needed emotional support as a family and got none. SHe lived with CHf for many years along with COPD. We miss her.We are just second guessing ourselves about our decisions.

Answer
Dear Marilyn:

I am so sorry to hear of the loss of your mother, who it is obvious you all loved very, very much.  She sounds as though she was very ill for several years, with all those medications.  That was really a lot of meds--not to say she didn't need them or benefit from them, but they are an indicator of just how much was not working well any more.  You reach a point when there are no more meds to give, and to give more of what she is already taking is not going to help.

Let me answer your first and maybe most burning question: did the dose of morphine sulfate (MS) cause her death.  The answer is no.  It actually takes a lot of morphine to cause a death--just ask any addict.  If you think of the amount that addicts take regularly, you realize just how small the doses are that are given to the dying.  What the MS did do is, it made it easier for her to breathe, and it stopped her pain.  I never realized just how much morphine worked, or how smoothly, until I myself was in the ER with chest pain (turned out to be referred pain from bad discs in my neck), and I was treated as though I was having "an event" (a nurse-y or doctor-y term for a heart attack or heart pain--angina).  Treatment is "MONA" (morphine, oxygen, nitroglycerin and aspirin).  I can tell you the morphine was quite wonderful and very helpful.  I went from fairly severe pain to almost no pain.  So I can tell you, from personal experience, your mother literally felt no pain.  That is one of several wishes we all have for our loved ones who are dying: no pain.

Next question: should you have had her resuscitated.  No.  She was likely not a very solid woman any longer.  Bones get a little brittle as we age.  CPR breaks ribs even in much younger people.  The pain from a broken rib is really terrible (that I know from a husband who had a couple of broken ribs from an accident).  Sure there would have been morphine available, but still....  And then there is the risk of a broken rib puncturing a lung.  Also not impossible to imagine, and not a matter of malpractice.  It is a very common side effect of CPR.  Lastly--and I learned this recently when I got my certification in Advanced Cardiac LIfe Support (ACLS), only about 15 percent of people who need resuscitation actually survive very long afterward.  So along with all this good news about CPR, I also have to ask, at 93, having had a long and loving life, with good quality right up to the end, what would we have bought for her, had we tried to bring her back?

You say you spent those last days and hours telling her how much she was loved.  I have no doubt that she heard and understood and hopes you know how much she loved you too.  I doubt she was in much rush to leave you!  In fact (and I do not mean to suggest that you should believe one way or the other), I suspect her consolation in leaving was first in knowing you would be OK and next knowing that the separation would be temporary.  That one day you would be reunited.  Of course you don't have to wait until then to continue your relationship with her.  I know many who talk to their deceased parent (or friend or child or sibling), much like prayer, and feel a certain comfort there.  (I have, but as I said, my beliefs and values may not be yours, and I don't want to suggest that either of us is "right," only that there are some options which might be comforting!  For that matter, I'd encourage you to cry when you feel tears coming on--our bodies can actually comfort us when tears bring on the kind of biochemicals that make us feel better.)

Every family, especially those who don't run to the estate lawyers before the funeral (and yes, I've known a few of those as well), every family grieves at some point wondering whether they could have done something more or differently that would have been better than what they did.  From the sounds of it, for several years she had the loving and tender care of her family, not just the family she lived with, but the family that was "out of state."  What a fortunate woman she was!

I believe we all do the best with what we have.  (Even those families focused on the estate, though they tend to make me a bit ticked off, generally.)  It sounds to me as though your mother raised some wonderful children whose taking care of her and whose giving back to her wasn't just in a few decisions at the end, but with every day and every thought, probably starting well before she needed any help at all.  You all sound like exactly what every parent hopes their children will grow up to be.

I don't know that you will be soothed very much by this, though it would be my hope.  It's important to keep talking about (and to, if you are so inclined) your Mom.  Keep her things about you.  With others who loved her, recall the way she was, the things she liked, what she thought was funny, funny things she might have said or done....  The more you continue to experience your mother, particularly with others, recalling not her shortcomings (though that's OK too) or what you "should" have done, but just the color and rhythm of her life.  You'll be surprised that you feel a bit less sad, a bit less as if there is a vacancy in your heart--because you'll be filling your thoughts with memories of your mother.

I am so glad you wrote, Marilyn, and I hope that what I've said here is helpful to you.  Please do write again if you'd like, if you feel I can be helpful.  You are all in my thoughts and prayers tonight, along with a wish that we should all be so lucky to have children like your Mother had.

Christine

Hospice Care

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Christine Johnson

Expertise

I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.

Experience

I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

Organizations
HPNA (Hospice and Palliative Nurses Association)

Publications
none yet

Education/Credentials
Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

Awards and Honors
Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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