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Question
My hubbies 63 in the final stages yesterday he ate 2 meals witch was great but today he's slept 21hours  yet he'd slept a lot the day before I don't know if it's coz I'm boarding him as he's at home with me  or he needs more stimulation the Macmillan phone once a week to check on things but I don't like to bother them as things seem to happen more at night than in the day I put plenty of e 45  all over him so he don't get sore  but he just sleeps  I sit up at night Incase something happens  so he's not alone then cat nap in the day time plz is this the way it goes or is something wrong d n r is in place but I'm worried Incase it's something else wrong with him and not just the cancer sorry to babble on just so lost

Answer
Hello, Sharon--I am sorry to hear of your husband's illness but it sounds as though you are giving him excellent care.  I do not understand everything you have written, but I think I got enough to be able to help you out a bit.

Dying people have days when they are very interested in eating and drinking, and other days when they don't want it.  I encourage family to offer but don't push.  The dying person gets to do it all their way.  If they don't want something, don' force it.  If there was ever a time they should have everything the way they want it (within legal guidelines, of course--illegal drugs are not an option!), it is now.  When else, right?

I do not know what "the Macmillan" is.  Is this a hospice service?  You need someone in the home at least once a week, who will come when you need them.  A phone call a week is not enough.  He needs a hospice service--call them, call your husband's doctor, get someone who will take him on.  It doesn't sound as if this is going to be a long term case (this is something you already know, I'm sure), and hospices are required to donate a certain percentage of services to persons who may not be able to afford them but who need them.  Get this for your husband.  He and you deserve it!

When things happen at night, make the call you need to make.  This is their job!  They *want* to be available to you and your husband.  Call them!  Waiting means your husband's pain and symptoms continue.  He should always be comfortable, without anxiety, without pain.

I do not know what e45 is--can you write back and tell me more about that?  If it is something he likes and which makes him comfortable, I'm sure it is fine.  The hospice nurse needs to know what it is as well.

You must sleep more.  Is there someone who can come and sit with him so you can rest?  Everyone needs 8 hours or so every night--you cannot be there for him like you want to if you are overtired.  Also, you could sleep next to him, on a chair or cot or couch, during the night, and then if you hear him, you'll awaken and you can help him.  But you must rest.

You ask a very good question: is this the way it is supposed to go or is there more wrong.  You are worried that something is bothering or hurting him, and you do not know how to care for that problem.

What you describe sounds *exactly* like end of life.  And it also sounds like you are doing a wonderful job caring for him.  He is not bored!  His mind and body are doing what they need to do for him to move on.  You can talk to him, say loving things, tell him that you will miss him a lot but when it is time to go, you understand and it's OK.  Tell  him he was a good husband and that you love him.  Those kinds of comforting things are important to dying people.  He may also be worried about you, so tell him that while you will miss him, you wil be OK.

I think you are doing a wonderful job and he is fortunate to have someone like you to love him so much.

Please write to me again if I misunderstood anything you wrote, or if you have more questions.  I try to be online a lot--more often if I might hear from someone again who is taking care of someone dying right now.

Do call the hospice and get a nurse to come at least once a week.  There are other services available as well.  Call them.  You deserve good care, for yourself and your husband.

Peace to you and him, and to your family in this time.

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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