The whole transition to hospice has been a nightmare. Everything that could go wrong has gone wrong. I pleaded with them last night after mom had two episodes of screaming for her mother and help me I can't breathe. I want the doctor to schedule her meds round the clock and not let them wear off, but all he would do is authorize one extra dose. I've called everyone I could think of, social worker, nurse, help line...I can't even bear to go sit with her. Yesterday I had to scream for 5 minutes in the car before I could even drive home. I'm exhausted, scared, desperate and I don't know what else to do.
Is your Mom ever conscious? Is she eating or drinking anything? Do they have her on IV fluids or nutrition? As I know with my Mom, they had to give her so much Morphine, that she was unconscious, but she has made that decision, before they gave her that level of pain comfort, and it happened over the 1st couple of days at the hospital. Then because she was actively dying, she was unable to tolerate even swallowing water, and any IV fluids were stopped. After that it was about 5 days. My Mom did not have the agitation as she was snowed under with the Morphine, but better that then the severe pain.
I understand how heartbreaking this is for you, and I hope you have other family to share innthe waiting process, but again I found it so hard to ever leave her, as did my 5 siblings and we spent a lot of time there together those final few days, and thank goodness there was a big sitting area in her room with a radio and TV. We found ourselves camped out, eating and drinking in her room there, and I hope that she was able to hear us, and found that comforting in some way.
Amicable, you must rest, and I do hope there is a comfortable chair for you relax in, while sitting in her room. You remember to eat and to rest. Another thing we all got was notes from the Hospice Dr, for our employers, so that we didn't lose or jobs, it was part of our Family Medical Leave. I know I missed an incredible amount of time from my job that year, but was able to retain my position, thank God! It is strange to think that when we lose a parent, our employers expect us backmto work after only a few days. That was when I needed the time to recover! I took 3 weeks no pay.
Be strong, we are able to take more than we understand, not that it brings you comfort at this time. Thanks for keeping us updated, as we do care about you! You take care now!
Today marked the beginning of her transition...family spent all day with her and she was less agitated than before...she's beginning to make her peace. Depending on which nurse you talk to, it'll be tonight, or maybe tomorrow...probably the next day or two at the very most. I'll be so glad when she can finally rest. I don't look forward to the aftermath, but that's my problem and I'll deal with it...just want her suffering to be done. I'm glad we had a day with her when she wasn't so restless.
That said, the nurse on duty was quite obviously devoid of any brain activity herself. Doses of meds were completely inconsistent, requests for new doctors orders thwarted or ignored, she could not interpret the instructions given her for adminstration of meds, nor explain them to me. At 4 pm yesterday, I requested a list of all meds, doses, and administration times. I didn't have it in my hand until 3 pm today. I did speak at length with the chaplain, and she is to have the manager call me. Yikes. I am just in total disbelief that I'm STILL having this much trouble after 9 days of hospice. Every possible thing that could have gone wrong has done just that. Thank heaven for the couple of decent aides. If I had the strength to fight this, I'd feel a truly big lawsuit coming on. However, they are so understaffed and underfunded as it is, that a lawsuit might do more harm than good.
What is your Mom's Diagnosis, whatnis the primary "end of life issue", that she is in for?
I know that with my Mom, the Cancer may well have spread to hdr brain, which can trigger unusual symptoms, mthat aren't necessarily pain, bjt a reaction of a different sort. If nessesary, ask them to increase her pain meds, even if it means, that she becomes very sedated, sleepy even, as the constant agitation isn't good for any of you! And if it is pain, well that Is unacceptable! Comfort should be the primary concern for her, in these final weeks and months! I'll be thinking and praying for good results TODAY! Remember, you know her best, and you are her advocate to great care!
I'm hoping this is a case of teething troubles until they can get her medication rebalanced again, is the thing. And meanwhile, for you, overlook the superficial callousness of this advice and take a leaf out of 'The House of God', where young doctors are told to remember: "the patient is the one with the disease."
Yes, you must be exhausted and desperate and scared, but the only way to know if there is something else that *might* be done is to be able to think straight - which you just can't do if you're identifying too closely with how your mother must be feeling. So step back and breathe (screaming does the trick!). Then you'll be better able to pinpoint who has to take responsibility in this situation, and fasten on to that person until something gets DONE.
Go for icy menace with anyone who's being needlessly obstructive - your mother is suffering and you are her advocate. Good luck, I hope you can find who needs kicking.
She was also on a strict schedule of the medication so she would have no break thru pain or anxiety.
Are her basic needs being taken care of? is she being left for long periods in an uncomfortable chair, not getting diapers change regularly. Getting sore because she is not cleaned properly, thirsty with a dry mouth because she can't get herself a drink. There is usually an Ombudsman you can contact.