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Hospice Care/Caring for Spouse

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Question
My wife is bedridden with cancer and is dying (possibly within the next few months, and I have advanced Parkinson's and Emphysema and am caring for her. How can I help her better and not have her worry about my debilitating condition?

Answer
Dear John:

Thank you so much for writing to me.  You both have a lot going on, and I am sure you are both blessings to each other.

I do not know how to keep a wife from worrying about her ill husband, even if (and maybe especially if) she is ill herself.

If your wife is not expected to live more than six months AND if she has decided to go for comfort and stop working toward cure (which, from what you write, sounds like it is not in the cards anyway), then she is eligible for hospice.  You do not indicate your ages, but if she is on Medicare, hospice is covered 100%.  Technically there is a copay but I have never, ever known a hospice to expect payment.  None that I ever worked with ever did.  So that would be my first suggestion, to talk with her about hospice (making sure she knows that hospice never speeds up or slows down the process, hospice simply makes every day as pleasant, pain-free and joyful as possible).  If she is in agreement, her doctor will need to write an order for hospice and may even know one he or she particularly likes.  Otherwise, you can simply contact a hospice, they have a medical director who can make a visit and write the order.  So the three things that are required are: interest in comfort but not cure, less than six months life expected if things progress like usual (although many hospice patients live longer, probably because of all the great care they get!), and a doctor's order.

Most hospices also have "homemakers," who can come in and do a little light housekeeping, run the occasional errand, and generally help out for a couple of hours.  There are aides who can come and help with bathing and bed changing and such.  Nurses will visit at least once or twice a week, more if needed, to monitor how she is feeling and to make sure she has as many of the benefits of hospice medication and physical care as possible.  And they have social workers who can help connect you with resources in the community to add to the quality of your lives together, for as long as you have left to be together.

You mention you have advanced Parkinson's and emphysema.  You may be eligible for hospice care also.  I have taken care of couples who were both ill and who chose to stay in their homes, usually with a relative, friend or adult child staying with them.  If not now, then later when the time comes.

Meantime, the only other thing I can think to suggest is to talk with your wife.  Tell her what you told me, that you don't want her to worry about you and your illness, and you want to help her as much as you can.  She might have some suggestions.  She may have thoughts, ideas and fears that she has wanted to talk with you about, but has not known quite how to bring up.  You will have to take cues from your relationship--how it is now and how it has been in the past--to decide how to work this part out.  If you have been tender and caring and drawn closer to each other as you faced trials in the past, then that's an approach you could use now.

In any case, dying is not a time to draw away, but a time to draw together even more than ever.  You may not find words, but words may not be necessary.  Pain and anxiety (both of which can be relieved with hospice medication and care) will tend to make either or both of you crabbier than you might otherwise be, so this may be a time to try to overlook those things that frustrated you in the past.  Time is short (as if I needed to tell you that!), and while it is important to be true to your thoughts and feelings, it is also a time for forgiving and forgetting, in favor of more tenderness, caring, for doing those things she has liked and wanted in the past, whatever that may be.

I hope I have helped at least somewhat.  I hope you will reach out to a hospice and whatever resources there might be in your community, within your family, among your friends, your church family, the local senior center.  Sometimes reaching out to that one person with energy and creativity can result in that person pulling together the resources to make your lives more secure, safe and enjoyable, for as long as you have together.

I am so glad you wrote to me.  I hope I have helped at least some.  Please write again if there is more I might be able to help with.

Take care--
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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