Topic: Just need to vent

So frustrated today -- the past week and a half, dad's been getting out of bed but he's so weak that he then goes down to the floor -- so last week, the hospice nurse strongly recommended that he get the long-acting morphine and haloperidol at 12 hour intervals -- she also said to give him a small dose of the short-acting morphine about half an hour before the nurse's aide comes to give him a bed bath.

However, my sister-in-law was reporting that dad didn't want the nurse's aide to touch him when he came and the night before last, he didn't sleep and kept them all up.  So when the hospice nurse asked today, I found out he's only been getting a morning dose of morphine and haloperidol and he hasn't been getting the morphine before the aide comes!  The nurse also checked and found a pressure sore and bruise on one buttock so that's probably causing him quite a bit of pain and he really should be getting the pain medication. 

I suspect my brother doesn't want to give him all the medication as it really sedates my dad and I think they are both afraid it will hurry his passing.  So, the hospice nurse again went over this all again with my brother.  The nurse also got in touch with the hospice social worker and she was able to come by today to again go over some options like respite care or a private caregiver.

My brother still does not want to do either -- perhaps doing so would admit that dad is really going to die.

Re: Just need to vent

Rose, I am sorry but it makes me frustrated too! Hospice is there to see to it that your dad stays peaceful and without pain. Your brother, though good intentioned, is fighting them and in the end it will be much harder to get your dad comfortable. He is NOT doing dad any favors. When you are on Morphine or any med like that, and you do not follow instructions from those that know, it will not work when it is supposed to.  I think you all need to sit and talk so that everyone is on the same page.
Is your dad using a hospital bed. It really helps. Also for the pressure sores a lamb skin works wonders. I hope you can get some results with your brother as there is enough stress involved without going against the pros. Best of luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Just need to vent

Thanks Lainy - I just had to leave when my brother finally admitted he hadn't been following the nurse's recommendations.  I was able to talk to both the nurse and social worker privately and asked each of them to stress the importance of following the medication recommendations.  I don't think my brother realized the seriousness of a pressure sore until he saw the nurse's and my faces when we saw it!   
We have a hospital bed and an air mattress.  Thanks for the advice about the lamb skin -- I have one so will wash it and take it over and see if my dad will  be OK with it.   I took over a foam "donut" today and they were going to try using that.  He's been pulling the sheet protectors from under him as well as throwing the pillows, sheets, etc. off the bed so we'll have to see if either works for him.
Thanks for listening -- it just got to be too much today!

Re: Just need to vent

Rose....I agree with Lainy.   Keeping your Dad comfortable and pain free is THE MOST IMPORTANT thing to do.  Although, the pain of loosing our loved ones is unbearable and stretches us beyond belief but,  patient care must come first. 
All my love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Just need to vent

Thanks Marion -

I was thinking about another post from the son whose father had just been diagnosed.  One of his comments was his worry whether he could also have the disease.

At first this bothered me but after mulling this over, I think dad's diagnosis and decline over the past few weeks just brings up my brother's fears about his own mortality.  (He has a chronic disease and over the past few years, it's been getting worse.) 

Well, hoping that today is better -- Mahalo

Re: Just need to vent

Rose....So many emotions to deal at a time like this.  Nothing is easy about it and although we believe to be prepared I don't think we truly ever are.   My heart goes out to you and your family and I am hoping for your Dad to find peace without suffering from pain.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Just need to vent

Marion --

I remember the resident coming into my mom's hospital room to pronounce her and finding us all crying.  He turned to the nurse and I heard him say "didn't the family know she was going?" before the nurse literally pulled him out of the room.  I always wondered if he decided to remain in medicine.

My mind knows that dad is going -- my heart no.

Re: Just need to vent

Rose.....At numerous conferences I have attended sessions focused on on improving interactions between physicians and patients.  Hopefully this particular physician signed up for it.
Hang in there.  Stay in touch with us.  We are in this together.
All my best,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER