Maggie passed the point of no return yesterday

Around 11 am yesterday, shortly after I got off the phone with Maggie’s sister, who is staying with her 24/7 along with her brother, Maggie’s behavior shifted dramatically from a determination to live to an urgent desire to get up and go. This is NOT the same as a desire for suicide. Restlessness is a common experience at the very end of life. To people like me who believe our souls are immortal and eternal, it looks like the soul begins to experience itself as a separate thing from the body and is trying to get itself free. Sometimes it seems like it’s wild to get out.

When you are attending someone experiencing this type of dying process, you really have to pay attention to them to figure out what they want and what they need in order to keep them feeling as safe, loved, calm and empowered as possible. Even so, they may need anti-psychotic medications. No matter how many death scenes you’ve seen on TV or in films, you’ve never seen this.

So, yesterday Maggie began to pick at the covers and make gestures of doing various tasks. She’s talked about getting out of a basement and down from scary heights. She said her mommy and daddy were there and mad at her — that everyone was mad at her. After getting anti-psychotic medication at bedtime, she had a fairly quiet night and got some sleep. But this morning she was so determined to get up and get going that she had torn out her medication port and IVs before her sister and the nurse could stop her.

When Maggie’s sister tried to comfort her that everybody loves her and no one is mad at her, Maggie couldn’t believe it and remained stuck in her fear and shame. You can’t easily get people to shift to a new position by resisting them — they’ll just dig in deeper. But they WILL move if they see a better place to go and a plausible way to get there. So I made some suggestions drawn from the books of Unity Church minister, Dr. Catherine Ponder. I suggested telling Maggie that the Angel of Forgiveness and the Angel of Love were there healing all the anger and replacing it with forgiveness and love in ways that were for the highest good of Maggie and everyone else involved. I suggested that when Maggie was afraid that they tell her that her Guardian Angel was with her to protect her. And, finally, I suggested they tell Maggie that Jesus is with her all the time now, making her safe, and that Jesus and the angels will take her to heaven when it is her time so she won’t be alone.

The report this morning is that this is working. It just has to be repeated like it’s brand new because the dying process affects the memory, so Maggie forgets after about five minutes. But for a few minutes, she relaxes and feels safe.

Republican primary victor Mattie Fein rips the Republican Party old boy playbook

Mattie Fein has a guest op-ed at The Other McCain that is worth reading. I haven’t seen the video, but I gather Karl Rove was annoyed by Christine O’Donnell’s primary victory in Delaware and she has some thoughts for him. For some reason, the women candidates in the Republican Party seem absolutely determined to win their elections even when the fragging they get from the GOP is worse than any punishment the Democrats dish out:

I won a challenged primary in a field of two other candidates. I am the Republican candidate. One would naturally think that my campaign would receive some support from the RNC, the GOP, or the NRCC.

Au contraire. Let me count just a few ways I have experienced rebuffs and undermining ….

In a week the new film from Citizens United on the huge role the leadership of women is playing in the Tea Party and Republican Party will debut and it will provide a larger context to Mattie’s indictment of the GOP’s old way of practicing politics. (It was screened for a group of women bloggers at Blogcon but I just Googled the title and it’s the same as a Leftist documentary, so I’m hoping it will be changed.)

‘Love is watching someone die’

Click for a profound and touching video correlating the lyrics of “What Sarah Said” by the indie rock group, Death Cab for Cutie, with the experience of a person at the very end of life made by a palliative care doctor. It will make you a better, stronger and more courageous person.

Love is the main job you do for someone in the last days of their life — just being at their side, lifting pain and fear, meeting the needs of the moment so your loved one remains empowered, radiating love, creating safety. It doesn’t feel like you are doing anything, and yet you are doing everything.

THIS is why gay people believe we comprise WAY more than two percent of the population

From my beloved friend, The Bloggess, for those of you who click #9, “Oh, Craigslist, you never stop amazing me,” and wonder if this is real and/or common, the answer is YES!!!!! The number of creeps preying on the gay community in a state of delusional full denial is legion. Just ask Ken Mehlman.

P.S.

The link is not really safe for work and definitely do NOT eat or drink while reading.

I just spoke with Maggie

Yesterday Maggie had trouble breathing so she was put on oxygen — not a mask, the tubes around the ears and a cannula in her nose. She also began to hallucinate and talked about cleaning gutters — a job I never saw her do. Her sister just told me that Maggie didn’t sleep all night, due to her hallucinations. She cleaned gutters, cooked and saw a man who frightened her. Yesterday and today the doctors said her test results look good and they seemed optimistic. They dismissed the hallucinations as a side effect of Maggie’s chemotherapy.

My mother’s dying process took place in our home under hospice care — hospice is a type of care, not a type of building. Five days before she died I noticed she seemed frightened and was laboring a bit to breathe. I called the hospice nurse and the palliative care doctor ordered oxygen like Maggie is having now. It greatly reduced her fear and strain to breathe. My mother’s hallucinations began a few weeks before she died. My father and Maggie and I were taking her to the urologist and suddenly she piped up in a cheerful, energetic voice, “I wonder if Mommy has the quilt finished.” My mother was 82 and her mother had been dead about 30 years.

When we got back to the house, Mother got settled in her spot on the sofa in the den under a heap of blankets and began to talk about going home. Maggie tried to orient her and tell her she WAS home. I tried to get Maggie to play along, the way I did. I asked my mother to describe the home she was talking about and the people she needed to meet there. It was the farm house she grew up in and her dead brothers and sisters. Of the 12 that survived childhood, she was one of only three still alive. Because I was curious and it made her happy, I asked her to describe the things she saw from her childhood — these were mental images or hallucinations, she’d lost her central vision to macular degeneration about 10 years earlier. I mentioned memories from her youth I knew were happy ones to cheer her up. When she got anxious and asked for a brother or sister by name, I told her they were in the next room, or out doing an errand or a chore, but would be with her soon. This seemed reasonable and reassured her, so she would relax. In five minutes or so she would forget, and we would have the same conversation. I always replied like it was the first time she had asked, since, for her, it really was.

I got to speak to Maggie for a few minutes just now. Her voice is weak and scratchy — her mouth and lips still have lesions, although they are improving. But I was glad to hear her having the clarity and energy to speak at all. I just told her I love her and listed by name all the people and kitties who love her. I also told her that her guardian angel and angels of healing and divine love were with her. She especially loved hearing about the angels that were with her.

My impression is that Maggie’s siblings who live three and four hours away from the hospital are being lulled into a false hope by the doctors’ optimism, so they are postponing the long drive. The sister and brother that are with Maggie see the symptoms of dying, but can’t talk with Maggie or the doctors about them because the doctors are only admitting in an ass-covering way that Maggie could go any time. The goal seems to be to be able to say, “We did everything we could.” The tragedy is that in our current healthcare system, you are not allowed to admit you could be dying AND do everything at the same time so you really aren’t. So I suspect that more often than not, instead of feeling vindicated by doing everything, instead no one gets to really talk about what’s happening — the dying process — and people feel hurt, angry and guilty because they didn’t get to say and do all the things they would have if they had known how nigh the end really was.

Another consideration is that acute care doctors do not know how to make a patient as comfortable with end-of-life symptoms as palliative care doctors do. Even when the medications are known to them, the doses are not only different but also a moving target. I am skeptical that Maggie’s pain, air hunger, anxiety and hallucinations are getting treated as well as they would in hospice. But I do admit that I wouldn’t be able to do better for her if I were there or she were here — even with my super ninja patient advocacy skills — because I would have to see that Maggie gets the care that SHE wants, which is acute care. Her sister told me the Markey Cancer Center doctors say that Maggie will be treated there for several more days. I think they really do know the end is near, they are just open to having Maggie surprise them. Just to be clear, I’m pointing out how the acute care system doesn’t address the end-of-life as well as the hospice care system does. My impression of the Markey Cancer Center is that it is easily one of the best in the world and that Maggie is extremely fortunate to be there, given that she wants to stay in the acute care system all the way to the end.

Maggie is back at the Markey Cancer Center

Awesome Nephew called me late Friday afternoon to relay a message from Maggie’s sister that she had gotten a good report on the results of her chemo and was on her way back to her brother’s home. However, shortly after I got home from the FreedomWorks 9/12 March and Rally in Washington, D.C., this evening, I received a call from Maggie’s sister that Maggie’s condition has deteriorated and she is back in Lexington, KY, at the Markey Cancer Center.

After Maggie was discharged from hospital in Lexington on Friday and left with her brother and sister, someone reviewed Maggie’s blood tests and  discovered her platelets were very low. They called her and told her to come back to the ER before she made it to the edge of town. The three of them spent all night at the ER so they could get the platelet situation improved and Maggie was discharged on Saturday. Maggie was at her brother’s home early Sunday morning when she began to vomit blood again. From the local hospital’s ER, Maggie was transported back to the Markey Cancer Center in Lexington. Her brother and sister are with her. Maggie is unconscious.

Maggie’s brother and sister are scheduled to talk with a social worker tomorrow about Maggie’s end-of-life care decisions. A social worker is not licensed to practice medicine and therefore is extremely unlikely to explain the implications of any of the decisions, such as CPR, ventilation (intubation and connection to a breathing machine), feeding tube or antibiotics. Maggie has not been eating or drinking for some time, judging from how thin she is. Her sister says they cannot get Maggie to eat or drink. I’ve explained that as the body is shutting down in the end-of-life process, it can’t handle much food or drink. I also told her that CPR will break Maggie’s ribs, but restoring her heart rhythm is not going to cure her or give her much more time. Also, when someone is dying and intubation for ventilation is not a bridge back to health, it can be difficult to end.

Everyone is fighting in accordance with Maggie’s wishes for her to have every moment of life we can get for her. But my observation in providing end-of-life care for my late life partner and other loved ones is that when Death means business, he comes from several directions. I don’t think Maggie will make it home for me to care for her. Right now we don’t feel sure she will regain consciousness. I appreciate all prayers and good thoughts for her.

(Disclaimer: I’m not a doctor and I’m not giving medical advice. Please consult a licensed medical professional for advice specific to your situation.)

Judge rules ‘don’t ask, don’t tell’ military ban on gays unconstitutional

Log Cabin Republicans, a 19,000-member gay and lesbian organization, won an important victory for lesbian and gay equality yesterday when a California judge ruled the military’s ban on gays serving in the military known as “don’t ask, don’t tell” is unconstitutional.

The Associated Press reports:

RIVERSIDE, Calif. — A federal judge in Southern California has declared the U.S. military’s ban on openly gay service members unconstitutional.

U.S. District Judge Virginia Phillips on Thursday granted a request for an injunction halting the government’s “don’t ask, don’t tell” policy for gays in the military.

Phillips says the policy doesn’t help military readiness and instead has a “direct and deleterious effect” on the armed services.

Allahpundit carps a bit that this as judicial overreach, despite the fact that defending minorities from the majority is EXACTLY what judges are supposed to do, and deftly summarizes the issues:

There are two claims: First, that DADT violates gay service members’ due process right of “intimate conduct” — a direct result of Kennedy’s opinion striking down sodomy laws in Lawrence v. Texas — and second, that it infringes on their right to free speech by forbidding them from talking about all sorts of subjects in the interest of keeping them closeted. The military can, of course, force its members to keep silent about various things and it can also restrict their “intimate conduct” — but it needs a compelling reason to do so, and according to the court, based on the evidence there’s simply no compelling reason to do that vis-a-vis orientation. (Military personnel from various U.S. allies who already allow gays in their armies say the same thing.) There’s no equal protection ruling here as there was in the Prop 8 case, but otherwise the reasoning is very much the same. Since the government is either unwilling or unable to provide a convincing argument for discriminating based on sexuality, they can’t discriminate based on sexuality. Simple as that.

Yes.

By the way, if you think it’s easy to keep silent about your sexual orientation and that it’s not a free speech issue, then YOU try hiding EVERY aspect of your sexual orientation in ALL of your conversations 24/7 for at least a week. Try this helpful — and very realistic — visualization: imagine that if you slip, you will lose your career, your retirement, your friends,  your home and everything you ever worked for.

A Conservative Lesbian blegs for donations to attend Blogcon and the 9/12 March

I hope some of my dear gentle readers will be willing and able to donate a total of at least $400 to assist me with my expenses to attend Blogcon in Washington, D.C., from today through Sept. 11 and the 9/12 March on Sunday. I’m really only asking for help with paying Awesome Nephew for working 24/7 to care for Dad while I’m away. I know some readers think he should work for free, but he’s got to trade his time for money while he’s working his way through college so I am competing for his time. He does the most work and the best job for the least money. He’s also agreed to my IOU, so please donate even though Blogcon starts today. My other expenses will be $80 to $110 for parking at the hotel, Metro fares (about $30), meals ($60) and gas and tolls ($30). So the real total I have to cover is about $630. FreedomWorks is paying for my hotel room. If I raise more than $630, I will apply the money to attending Homocon in New York City on Sept. 25 to hear Ann Coulter speak.

I appreciate the generosity of my dear gentle readers. I am working to make enough money from my writing so that I will not constantly be making these appeals.

Update, 9/9/10, Thurs.: I forgot to add the PayPal button:

Update, almost 1 am, 9/10/10, Fri.: Dear Stacy McCain is here at Blogcon and features a photo of me with CPAC Director Lisa De Pasquale, who is not a lesbian, even if she IS attending Homocon to hear her friend, Ann Coulter. I had a wonderful chat with Lisa Thursday evening and promised to vouch for her, not-being-a-lesbian-wise, what with me being an authority on the subject and all.