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Hospice Care/CHF 81 Year Old Dad

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My Dad had another heart attack 3 weeks ago, leaving his heart EF at 15%.  The Dr did a super dose of lasix, which he survived, but we were told there can do more for him.  He was asked if he wanted to go back to the CBRF on hospice or stay in hospital, he went back to his CBRF.  He is on oxygen, morphine and lorazapame.  He has not had a bowel movement in 11 days, they've tried stool softners and he had an enema yesterday.  They said all they could get our was dry stool.  I am so worried, I hope to have more time but by his breathing and water retaining, I am starting to panic.  He is extremely anxious and cranky. Is he near the end or will we have more time, I know he says he's ready to go but he's had CHF for so man years, I never thought this would be how it ends.  I just want no pain, and Hospice has been wonderful but what can we all expect?

Answer
Dear Mary:

First, let me apologize for the delay in answering you.  I saw this email while working, made a mental note to respond as soon as I could and promptly misplaced that mental note.

First things first: your Dad is anxious and cranky?  He needs more morphine and lorazepam.  Granted, they are probably at least partially responsible for his not having a bowel movement, but they are also important for pain management (probably causing the crankiness) and the anxiety management.  So I encourage you to contact your hospice nurse to ask them to rachet up those two drugs.

Next.  Three things are important to keep the bowel active (and regular bowel movements happening).  First, he must eat enough bulk and fiber that there is something to actually move along.  He sounds like he is pretty near the end (a couple of weeks, maybe) so he may not have much of an appetite.  That's OK--his body is doing things other than working to maintain his living.  His body is winding down.  And part of that is less appetite and less interest in fluids.  Offer food and fluid, particularly what he has enjoyed in the past or anything he asks for, but if he says no, then honor that.  He gets to veto everything at this point!

Second, there has to be enough moisture in his digestive tract to keep the material moist, soft and bulky.  Dry contents are smaller and harder, and are more difficult to move along.  Blockages can happen any where along the way.

Third, he has to have the nervous connections so that he can both feel the urge and honor it, so to speak.

If he is eating at all or drinking at all, you might want to add one of the bulker-uppers that dissolves so well it is like water.  It can help hold water in his digestive tract.

I cannot tell you how much time he might have.  My sense is, a couple of weeks, but I have seen enough to know that there is no real predicting.  People progress according to their own clocks, it seems, for the most part.  I would encourage you to spend time with your Dad, talk to him.  Share your feelings and fears, but also reassure him that you know the separation will only be temporary, and that although you will miss him so much, and would do anything to keep him with you if that was to be, you want him to know that you will be OK, and that when it is time for him to go, that will be OK too, even though you don't want that to happen.  Recall shared experiences together, laugh about the silly things you remember (because you will remember some silly things!), cry a bit about the losses, and above all make sure he knows what a wonderful Dad he was and is and will be, even when he lives in your heart, and thoughts and prayers and memories. I know what kind of Dad he is, because of the kind of daughter he raised.

Take care, write to me again if there are other things I might help with, and know that even people who do not know you (like me) keep you in our prayers and hope for the best in all things.

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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