How did it go today, kdzgon?
It went badly (for our hearts) but better for our DD. It was a very long day.
It started out with a phone call from her live-in boyfriend - the visiting nurse told him she likely would only have two weeks left, and strongly recommended we try to get her admitted to the hospital. Of course we already knew this, but it was quite a shock to him.
We arrived at DD's house shortly after (~10 AM)- her appearance was shocking to say the least. She had some difficulty talking, and she was slightly confused as well. (The nurse had started her on oxygen, but she didn't want to use it and had already taken it off.) I got her settled with fresh water and ice, something for her severely chapped lips, cleaned up her area, etc. By time I was done, the visiting nurse stopped back, as she was very concerned that DD was alone (she didn't know we were on our way when she left).
We discussed DD's condition as well as the fact that it appeared DD really had no clue just how little time she has left. She had deteriorated quite a bit in the 24 hrs since the nurse had seen her, and some confusion was setting in, most likely due to the lack of oxygen. Based on the rate her numbers have been falling, her hemoglobin is probably somewhere ~4 or so (even her mucous membranes are drained of color, and her teeth are stained with the sloughing cells, etc.) The nurse also recommended she be transported by ambulance - even without seeing her, I would have agreed - I had already spent the night before on the internet searching for transportation options.
DD was NOT happy about either the suggestion to be admitted or the ambulance. She did agree that IF the doctor recommended it at the appt, she would go in to the hospital.
Lots of phone calls ensued - to her insurance co, more than 15 ambulance providers, several to the doctor, the county human services dept, etc. No ambulance would transport her to the hospital where she has been treated, with several refusing to transport her due to low blood O2 levels. I then called the doctor back - who, BTW, is a covering doctor, and absolutely wonderful. (Had her regular dr been available, I would have pushed to have her transported to the nearest hospital, which also happens to be connected to one of the best cancer hospitals in the country.) I told him we had two choices - go by ambulance to the closest hospital, or come to his hospital via our private vehicle, where the dr had already arranged to have a special nurse available to meet her upon arrival. We spoke at length about her condition, her knowledge of her disease progression and the family's knowledge, and the reality that there was nothing more that can be done to fight the cancer. He then offered a third option: we take her - by ambulance if possible, car otherwise - directly to the hospice facility run by the hospital. It has only 12 beds, is peaceful and quiet, she would be admitted and placed in a room immediately (our avg emergency rm wait at the hospital has ranged from 10 - 18
hrs before admittance and rm placement), they would care for her properly as well as make her as comfortable as possible etc.; he would make all the preliminary arrangements for us. She would then be evaluated and meds adjusted as needed. Once there, he would also help transition her (and remaining "clueless" family members) to the realities of her condition. We would have to sign a DNR, but she could always choose at any time to transfer to the hospital if she decided she wanted to continue the fight.
I absolutely agreed this was the best option and asked him to make the arrangements. I then discussed it with DH, who agreed it would be a good option. I contacted the nursing station at Hospice, and they took a bunch of information incl her pain meds, as they needed to order them and have them on hand before she could be admitted. They switched her oxycontin to a patch and her other pain med to a liquid as they said she would soon be unable to swallow the pills. As the pain meds would not be there until 6 PM or so, we had to wait until then to bring her in. The social worker then called me, and we reviewed more info, and I told her of the problem I was having getting an ambulance. She said she had one more to try, and would get back to me. She called me back in a short while, and had an ambulance willing to transport her. It was a company that had turned us down earlier - apparently the difference was we were now going to Hospice and not the emergency room, so their parameters are different.
The next step was harder - breaking the news to DD. We committed a lie of omission, and did not tell her there was a choice. We told her this is where the doctor wanted her to go as admission would be easier for her, it was quiet and peaceful, family can stay overnight with her, she would then be evaluated and could always choose to transfer to the hospital. (All true, even if not all the truth.)
I was on the phone with the social worker when DH came running in a panic - DD needed to go to the bathroom, but was unable to walk the 6' or so - in fact, she was unable to take a single step forward. Problem was, there is no bedpan, and DD is up around 280 - 290 lbs right now. I managed to fashion one out of the raised toilet seat, a bowl and use of the lift chair. DH helped her stand again while I got her bandages in place and her clothes on, and we got her seated again. I relate this story because not a half hour later, DD is complaining about "do we really need to use an ambulance?".
The ambulance arrived around 5 pm, and they were great with her and extremely efficient. It's a good thing I had my gps, though because they were gone in a flash. I met up with DH and DD at hospice - by time I got there, they already had her in a room, pain meds administered and all set up with ice chips, call button, tv remote, etc. She refused the O2 when she first arrived but agreed to put it on just as I walked in. The staff at this Hospice is absolutely wonderful - I just cannot describe how great they were. They are all aware of DD's apparent fragile remaining grasp of hope and our method of gaining her admittance there and just operate around it. They say they will continue to take their cues from her as their only goal is to make sure she is as comfortable as possible. She also has no advanced directive, no will, no living will and is now to medicated to legally sign any docs. DH signed the admission forms and signed the DNR on condition they not reveal that fact to DD until after the doctor has had time to transition her as to her prognosis.
So, it was a wonderful day in that it is a 180 change from the treatment she has been receiving (visiting nurses excluded - they have been great) and we know she is in a good place for where she is in her life right now. I know DH had to finally truly accept what is to come but is much more at peace with the inevitable now that she is where she is. It was a terrible day because there is simply no hiding from the fact that she needs to be here, and she will continue to deteriorate, most likely at a rapid pace. I will be surprised if she makes the weekend, a sentiment when expressed not challenged by either the visiting nurse or the hospice staff.
Thank you so much for sticking with me these last days - the burden of knowing what was happening was simply too much to carry alone any longer so I appreciate the extra hands and shoulders you so willingly extended.