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Hospice Care/Need Info Confirmed

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QUESTION: I am the primary caregiver for my 91 year old grandmother. We have been accessing hospice services for 2 weeks after increasing debilitation. She is now completely bedridden, completely incontinent and only eating spoonfuls of food 2x a day. Her liquid intake is about 8-12 ounces a day and this includes her small cup of morning coffee- which she still enjoys with gusto :).
Her urine output is only 1x per day and sometimes (every 1-3 nights) 1x per night. No bowel movement, her stomach is soft and she does have belly sounds. This has been going on for 8 days.  
Our hospice team is telling us this will probably last 1-2 more weeks and her appetite, urination, etc... will continue to decrease.
Does this sound accurate? Her body is very weak. She hovers between complete clarity and active conversation and spending time with dead friends and relatives. She often tries to get us to interact with her special visitors.
Are we nearer the end than we think? Do we need to begin notifying family that is a distance away for a last visit?
Thank you!!
Tawnya

ANSWER: Dear Tawnya--

It does indeed sound as if the information your hospice providers are giving you is accurate.  It also sounds as though this is one of those very special hospice situations--your grandmother is enjoying as much of her life as she has left.  I'm so happy for her that she has you and the good hospice you have employed.

It sounds as though she is moving back and forth between this world and the next, doesn't it?  Many (if not most) who are near death experience communication with persons they have known and cared about, but who have already died.  There all kinds of explanations for this but I think the most important thing to realize is, this is comforting to the dying person.

Food and fluid should be offered but not pushed.  The dying will sometimes accept and consume food and fluid they do not want because they want to please the family member offering it, and are thus deprived of the body's natural processes which prepare the person for dying.  If she is still enjoying her cup of coffee, that is amazing and wonderful and terrific.  If she is not eating food, it makes sense that she would not have a bowel movement--nothing much in there to move!  She should have as much or as little as she wants of whatever it is that she wants.  She may want some kind of fruit out of season, do try to find it.  It is amazing the profound sadness we put ourselves through if we ignore such a request.  Be prepared, however, that the desired food may not be interesting by the time it arrives, or it may not taste the way the person expects.

Consider that dying is like being born--it takes time, it doesn't always follow the expected plan, most of the time it goes well and sometimes some intervention is required.  When I say intervention, I specifically mean management of unpleasant symptoms.  We never speed or or delay dying, but we endeavor to make dying painless and without anxiety.

You sound as if you are providing your grandmother with exactly that kind of death.  What a fortunate woman--

And yes, I think I'd put the word out that now is probably a very good time to come for a last visit.  She still has lucid moments but those will be fewer, shorter and further between.  This lovely lady deserves visits if they can possibly be managed.

Take care, and God bless--may you all find peace.
Christine

---------- FOLLOW-UP ----------

QUESTION: Do you have any suggestions on how to stop the "picking". She picks at her sheets, her gown, her skin, her hair...anything. We have tried distractions and putting things in her hands. No avail.

Answer
Hello again--thank you for the kind words in your comment in the rating.

The picking may be related to mild anxiety.  She is basically fidgeting.  You might ask the hospice nurse if she would consider increasing the anxiolytic a little bit.  At the very least, the hospice physician should be asked about it.

If she is hurting herself or seems disconcerted, that's very different than fidgety picking that does no damage but tends to upset or concern the family.  A good nursing assessment will indicate the circumstances that are generating the picking behavior and thus help determine the best approach to dealing with it.

Thank you for trusting me with your questions.

Christine  

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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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