Hospice Care/COPD and CHF

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Question
QUESTION: Hi Christine,
I wrote to you a while ago. I would like to share with you some concerns regarding my dad. He needs assistance for everything. Cannot eat or drink by himself. Cannot walk , or lie down on his bed. He is always in his lazy-boy, but complaining a lot about why he is like this. I am really concern regarding his appetite. He eats pretty well for a person in this stage of CHF. He talks a lot and wants everything that is impossible. He gets mad at everyone. He is on morphine and another sleeping pills Nosinan.
Please let me know what can I expect from this situation. he is very hard to live with. is putting him to sleep all the time is the solution to calm him down. Also he has no bowel movement by himself. He needs help every week. Thanks for getting back to me.

ANSWER: Hi, Sylvie, yes I remember you writing and have wondered how your Dad was doing.

He sounds pretty unhappy.

There are a couple of medications that can help his appetite, one in particular is used for people on hospice care when they are not yet to that point near the end where they no longer need to eat.  In the US it is called Megace, and it is on the $4 list of most of the pharmacies that use that pricing system.  The other medication is called Reglan, and it is more often used for nausea but the way it works is to help the stomach empty faster.  If stomachs empty, the food material has to go somewhere!  So one or the other of these might help him.

The lack of bowel movement could well be from at least two things.  One, the drug "Nosinan" is a major tranquilizer that is used for psychotic problems.  It sounds like the purpose for your Dad is its side effect of sedation.  The other drugs in this family of medications can sometimes cause bowel activity to slow down, and can also cause headaches and irritability as the blood levels of the drug go down (as his body is filtering it out of his system--which is exactly what is supposed to happen).  Have you considered asking the doctor to taper him off this drug and onto something else that might help him feel a little better but still achieve the purpose (which I will guess is to relieve his anxiety about feeling like he cannot breathe).

The other reason he may not be having bowel movements is that there isn't enough volume in his digestive system to stimulate activity (peristalsis) that would result in a movement.  If he eats more, that could help, particularly if he is willing to eat foods that are high in bulky fiber--this would be like whole grains, vegetables and fruit.  If not, it is sometimes helpful to have a glass of water with one of the newer bulking agents dissolved in it (or juice, or tea or whatever pleases him).  The newer ones dissolve so well you cannot tell they are there!

It occurs to me that if he is that medicated he might also not be drinking enough, and that can slow up bowel movements AND leave him feeling thirsty.  As for his grumpiness, it could be that his chronic constipation has an effect there--I never met a person with regularity problems that was consistently contented.  Going more often might sweeten his mood a little!

I hope this is helpful--please feel free to write back to let me know how things are going or to ask other questions.  I'm online a lot!

Take care,
Christine

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

QUESTION: My 82 year old dad is having bad exacerbation but still his oxygen is 90. He has fluid build up in his legs and feet and right arm.The doctor gave him only morphine and lorazepam, no antibiotics etc. Even with this exacerbation, he is still eating pretty well for his condition. He has been diagnosed with end stage Copd and heart failure. Why is he holding so long? it is very hard on the family to see the sufferings and at the same time fighting for his life and dying slowly. Please help me with some advise. I am the caregiver , how long will I be able to see this. Thank you.

Answer
Dear Sylvie--

It is indeed difficult to watch someone we love at the end of his life.  I do not know why he is still with you except that he just is.  It does sound like he is getting very good care, and it sounds as if he is comfortable.

That he is still eating says that he is not ready to go.  If he is still eating, then he is very likely quite aware of you and how you are feeling.  Talk with him about it.  Tell him how much you love him and how you worry about how he is feeling.  I think his answers might surprise you.

I remember when my father was dying, before there was hospice available (in 1985).  He had lung cancer that had spread to his liver, and, like your Dad, his arms and legs were swollen.  All you have to do is have one part of the circulation slowed up (like lungs or liver) and it backs up all over the place.  I remember feeling so bad for him, but he was comfortable.  I remember putting lotion on his arms and legs and how he lay back and closed his eyes and smiled a little bit.  I remember how we talked about how much we loved each other.  I miss him to this day.

I want to suggest that it might help if you can see this as having more time with him.  What I wouldn't give to have another hug, another touch, another word.

It may not be helpful to you, but it is the best I have to offer.  Whatever your father may want--a special food, to see a favorite movie, to be able to watch a sunset or a sunrise one more time out in the yard in a wheelchair, whatever it may be, try to give it to him.  Sit with him watching that movie and put your hand next to his, or hold his hand if it is not too uncomfortable.  He'll tell you!

Here is your chance to say (and maybe repeat) all the things you might want him to know.  How he was and is a great Dad.  How much you love him.  Try to remember crazy funny things and talk about those.  These are the things he will remember.

I know it is difficult.  See if you can get someone to stay with him for several hours a couple of times a week, and you go and do something special for yourself.  If you have a best friend, spend time with him or her.  Laugh--even if you have to work very hard to do that.  Be sure you are getting the best rest you can, and eat well.  Worry about a diet later (if that's something you tend to do).  The stronger you are, the more resilient you will be as you walk these last miles with your Dad.  He is a fortunate man to have a daughter like you--and you will be fortunate when your time comes, to have someone who loves you, as much as you love him.

I'm glad you wrote to me.  I wish I had more to offer you.  I will keep you in my thoughts and my prayers, for peace and calm and for your Dad to have a safe and peaceful passing when it's time.  Please write again as you feel the need--I'm always here!

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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