Hello to all of you, I just can't express enough how much your thoughts and prayers have helped me. Your outpouring is very appreciated and I feel very blessed to have come upon this awesome community of Feds, past and present. You are a very caring group of people. Thank you so much!
I am doing good, and am planning to get a little more active on the website again. I really have missed reading the daily forum posts as much as I did before. So I'll try to not be a stranger.
Don't plan on talking much more about my mom's passing, but I did want to mention one thing in the hopes that it might help someone else now or in the future. I'm sure many of you already know this, and it makes sense, but nonetheless I had not fully thought this through. BT mention he hoped hospice was all I had expected.
Lessons Learned:
--Do not allow hospice in until you are ready to give up. They don't help you get better, nor do they try much. Strictly for comfort at end. They are good at monitoring and light pain management, until closer to the end. ( we learned that last year when a doctor suggested hospice way too early!-- they are not there to help you get better)
--Once a person starts to eat less than once a day, it is time to get them out of in- home hospice and into a In-patient hospice facility. Or if you recognize signs common with last two weeks of life. Reason: In-home may not be able to manage pain of loved one right at the end, or not be able to do it quickly enough.
--Must see these signs and make decision yourself. In-home hospice will try to keep your business until the end. Inpatient hospice is best especially so they can treat a quick acceleration in pain level.
--Morphine by mouth is not very effective at stopping pain, even when administered every hour once the body starts to shut down. Must get on IV morphine going straight into blood stream. At the end, body is very ineffective at absorbing it through the mouth.
--You can revoke inhome hospice at any time and go to an emergency room for treatment or immediate pain management, and then transfer to inpatient hospice facility...even if a different company from the one you used for inhome hospice. Fortunately, we knew this.
This is my personal opinion and surely does not speak to every situation or hospice agency. I must say the inhome providers we used these past couple months were awesome and very caring. But the hospice we used came highly recommended, and even so, in the end they were not able to manage pain which increased quickly 48 hours before my mom passed. We recognized this very quickly, revoked hospice, used EMS to get her to the nearest hospital and had her on IV morphine within 30 minutes...pain was then under control, and then transferred to inpatient hospice....we were very fortunate to act quickly so my mom died peacefully and without pain less than 24 hours later. Im fairly certain if we had not acted immediately, the outcome would not have been what she and we wanted for her.
Hopefully someone will benefit from this information. It was a surprise to me that after all the questioning of these workers, no one would dare say how long she had. A few would say weeks rather than months, but not until 48 hours before did the nurse say it was impending...24 hours or so. That information from nurse only came because the aide who came to bathe her mentioned this to me, saw the signs and called the nurse. Nurse asked for blood pressure and then made that call. But The aide knew!! Crazy as this sounds, when we got to the inpatient hospice facility, one nurse said she could live weeks. I knew that was not possible.
So bottom line, its almost like your on your own. Not sure if every death is painful at end, but I should think there is surely some....we always hear of cancer being painful. My dear aunt, who was a nurse died at age 55, of pancreatic cancer. She had the most peaceful death I'd ever seen with that disease. She stayed at hospital at end-stage for as long as they would keep her and then transferred to inpatient hospice and had aggressive IV morphine pain management so she was asleep her last week. She did it right! She knew what was coming.
Well...I thank God mom still had a "good" death but earlier to inpatient hospice by a day would have been better. But we enjoyed her being at home and family came to visit here. So overall, I think our inhome hospice met our expectations except during last 48 hours, when we had to take quick action. I can't imagine how many folks suffer at the end because hospice are not well prepared or forthcoming on what is needed at the end. Please pass this information on to as many people as you can.
Thanks and best wishes, DBAnnie