I have a lot of thoughts that are combating the issue of palliative care regarding in-the-home versus in nursing homes. In the early-ish part of the summer we received the news that a nursing care home finally had an opening for both of my grandparents. I should clarify that the “finally” part is really due to the fact that it took a long time for them… well, I should clarify that “them” is really my grandfather agreed to the move and my grandmother threw the mother of all tantrums, but relented. Once my father and uncles made the decision for my grandparents, and once they informed my grandparents, it only took a month or so for a health care facility to open up space for them.

There was relief in this. A lot of relief, actually. The fact that they would have on-site 24-hour nursing care and a doctor on staff. Their doctor would be on call. Emergency care would be available instantly as needed. There are a couple of hospitals within minutes from the nursing home, if needed.

As soon as they moved in, my grandfather felt relief. He could see that he really wasn’t able to take care of her any longer. That was hard for him. Not being able to pick her up when she fell was something that had been normal for a long time, but the emergency paramedics finally told them that unless she agreed (or he forced her) to go to the hospital when they called 9-1-1 and she was clearly injured (she was) then they were going to stop coming to the house for her. Whenever he fell, he knew enough to go to the hospital. So that was the tipping point.

I spent my summer with the girls, off work and visiting my grandparents as they adjusted and took turns with one being upset at being there and the other saying how wonderful it was. Yeah. Being in your 90’s and married for 70 years can be like that.

A week ago we held a party for my grandparents at the nursing home for their 70th wedding anniversary, and it was beautiful. My grandmother looked beautiful. She held her rosary the whole time. As I was growing up, and let’s face it her entire life and mine since at 40-something I still feel as if I’m growing up, she always put herself last. She always put all of her focus on the person who was in front of her. She made everyone in that room feel special, and so when they came for her and my grandfather’s anniversary, they made sure that she felt special.

She wasn’t quite herself, and I could see that. The entire week prior, she’d been declining. Her mood shifted. She started seeing hallucinations. Night time was the worst. She hadn’t slept for two or three nights, and so the day before the party, when I visited, they made sure she slept. She was in a great mood for the party, but something had changed. She knew who we all were and why we were there but she heard music that we couldn’t. She asked and talked about odd things, for her.

And then this past week things got worse. My grandfather and uncle swore to me yesterday that she wouldn’t recognize me, but she did. She couldn’t move much, but when I held her hand she held it back as much as she was able, and even lifted it to point at my youngest daughter when she wanted to see her. She would pucker her mouth and move towards us when she wanted kisses. The whole time since being in the nursing home, that’s all she’s wanted, is kisses.

They swore she wouldn’t understand anything we said to her, but she did. She tried to talk to me, so I told her about my girls and my husband, how school and work were for them and how much I’m enjoying being a stay at home mom again. I knew she wanted to know about my pain levels too, but I avoided that topic. I told her that I finally prayed for what she had asked me to pay for, for her and that I’d done so at Church yesterday morning right before coming. She blinked a few tears and tried to nod, leaned for kiss, and I cried. I told her that I prayed for it even though I didn’t want it, because I know she needs it and she’s ready, and because I love her. I told her that I love her no matter what, and that I’ll be okay, that the entire family will be okay and she can let go.

We stayed, Darling Girl and I, for hours with her. It was very difficult to leave. We let the nurses know we were leaving, and then we saw my grandfather coming down the hall from his room with a priest trailing behind him. He told me that the priest just got there, and could I please stay. This was their parish priest. He was there for Last Rites.

So of course I stayed. We stayed. I held her hand. When she saw her priest, she gasped and said his name after not being able to speak for a few days. My grandfather was shocked because he had been 100% sure that she didn’t… couldn’t recognize anyone and nor could she understand what anyone said. It was beautiful from start to finish, and I never thought it could be. Maybe it was beautiful because it’s what she wanted.

Now it’s Monday morning, and my Darling Girl is sad. This is making her think about when my husband’s father passed away four or five years ago. It’s very similar, but she didn’t understand what was happening then. She told me this morning on the way to school that she’s remembering what happened to her Nonnu, but with a new understanding and so she’s feeling the experience of his death all over again as her great-grandmother is dying.

What she’s having trouble understanding is how my grandmother could be choosing to refuse to accept her medications, even the pain meds; how she could be choosing to refuse to accept any food or water. At 12 1/2 years old she knows how long a person can without food, and without water. I don’t know how to explain that to her, how a lifelong devout Catholic could choose, in her mid-90’s, to stop it all and to leave directions for the nurses, doctors, and family to refrain from any extreme lifesaving measures. It’s not rational to my daughter. I told her that as much pain as her great-grandmother is in from her illnesses, she’s in far more pain when she eats and drinks because her insides don’t work as well any longer, and she wants the pain to end. That didn’t satisfy her, and I know that nothing will. It sounds weak in my ears too.

Also this morning, Sweet Girl was having a really difficult time. She asked me last night to explain what was going on. She was more angry about getting up than usual, and complaining about everything that’s ever made her angry. I nearly lost my temper with her, and when I realized that my temper was shorter than usual I knew it was because of my sadness and the anxiety of the vigil. I realized my mistake, shifted gears and told her I recognized how sad she must be, and she could visit with me after school but that I won’t force her. She finally managed to cry, sad crying, and it seemed a relief to her to be able to identify with words what was wrong.

Dearest Girl, my eldest, turned 17 yesterday. She was amazing about me spending the day with my grandmother. She seems to be holding up well on the outside. In that way, she’s a lot like me. Being the eldest, like me, it’s natural. I know that she knows she can talk to me; she will when she needs to talk.

I don’t know how to do this. It just feels as if I’m doing it all wrong.

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Hello, Loves! If you subscribe to my blog and received an e-mail notification earlier today ie. dated 7/18/2017,  with a link in it, please delete it and please don’t click on that link. My account was hacked. I’ve reset passwords, and the previous “entry” from today has been deleted. Talk to you soon! I have a lot in the works.


That moment when, even though you feel guilty for multiple reasons, you do something that changes your entire life.

I turned in my resignation. I did it. I did it with a letter. This time, my boss didn’t try to convince me to stay after our long discussion. This time, she understood. 15 months ago, she convinced me to stay, “just until the annual meeting,” and I promised that I would. I guaranteed her those three months, and then, “we’d talk again.”

This time, when I turned in my resignation, she had already announced her own retirement.

I have five days left, including today, and I promised I would finish up my notes for my files. I hope that I can. I promised I’d stay an extra day or two if I couldn’t finish up by my last day. I’m a sucker. I really am. I don’t know why I didn’t just keep up with my notes as I went along.

Yes I do, that’s a lie. It’s because there’s been so much work piled up with my consumers and at some point, it was the paperwork that took the hit. Now I’m paying for it. It’s okay, I’m not taking new people on. I’m wrapping up and passing my people on to coworkers because that’s the way it goes here.

So today, there’s a Board Meeting. It’s a mostly-new board with a brand new Board Chairman and he’s pretty awesome. He’s got a lot of energy and brings a lot to the table. I forget how it came about, but at the annual meeting he ended up offering to buy me a cup of iced coffee as an apology for something, and I forgot today was the board meeting so he chastised me for not e-mailing him with my favored coffee flavor. I told him, then hedged, and told him that Friday is my last day because he offered to bring the coffee next week. He seemed genuinely bothered, so I explained about my health and current family concerns, but how much I love the agency and the people I work with. He asked if there was anything the board could do to keep me here and stated that if I change my mind after a period of time I’d be welcome back any time. I told him that meant a lot to me and I’d keep it in mind.

That was kind of awesome.

Now I only have to worry about getting my SSDI application completed, and waiting three months or so for them to respond with an approval. But I have to actually stop working first. I’m nervous. I’m really nervous. This whole thing is a huge life decision. It changes my life, my husband’s life, and that of my children. I realize that it also affects the work place that I’m leaving.

I have to be selfish this one time. I have to listen to my body and my family. I can even take this as a chance to talk to my daughters about how this choice still fits in with being a feminist.

It’s time to do this. The rest of my life is about to begin.

 


This is an excellent article. I hope that if you’ve stumbled upon my blog and have a negative view of disabilities, any disabilities, that you’ll read this article below.

 

It’s not generally acceptable in my segment of the disability community to harp on our defenselessness. Rather, the idea is to assert core competencies, to distance ourselves from the Jerry’s Kids’ model and anything else remotely pitiful. We seek fair treatment, rightful access to everything in society — jobs, romantic prospects, and so on. Highlighting the downside of disabilities seems counterproductive and self-pitying.

But the truth is, to live with a disability is to know an abiding sense of fragility. That isn’t always easy, but it’s not necessarily all bad either.

Source: A Disabled Life Is a Life Worth Living – The New York Times

 

Now this is me, not the article. 🙂

The fact that those of us who have disabilities have to explicitly state that our lives are worth living is a statement on the problems we face in society. We shouldn’t have to argue our right to life or argue our value to society in order to prove that we are not burdens. People are not burdens.

Let me repeat that. It bears repeating.

People are not burdens.

Having chronic illnesses and disabilities does not devalue a life.

Let me repeat that.

Having chronic illnesses and disabilities does not devalue a life.

Nor does someone who is chronically ill or disabled constantly wishing they weren’t disabled.

Every single life, disabled or not, has something of value to offer.

No one life is more important than any other life.

A non-disabled life is no more important than one who has chronic illnesses or disabilities.

Every life is valuable.

Every.

Single.

Life.

Is.

Valuable.

 

When we choose to believe that there are varying levels of value that we can apply to people based on arbitrary sets of data, stereotypes, physical or intellectual attributes, belief systems, etc. then we’re betraying our very morals and ethic responsibilities. We ought to shed any pretense ethical superiority over anyone else.

I want everyone to purge the thought that disabled and chronically ill people are to blame for their disabilities because they’re doing or did something wrong; or because there’s something they need to do or haven’t tried. We’re a society that loves to blame its victims. We’re a society that loves to see it’s chronically ill and disabled population as perpetual victims who are helpless, are intellectually disabled, and completely unable to contribute anything to society or even our households.

I want everyone to extinguish the idea that God uses illness and disability as a weapon. I want people to stop telling disabled individuals that they’re being punished by God or that they’re not praying hard enough. I don’t believe God would do such a thing, not when Jesus performed healing miracles to stop people’s pain and disabilities with his touch. I believe that the miracles Jesus performed on the disabled and sick had multiple meaning for us:

  1. Those lives are equally as valuable and worthy of love as lives unaffected by illness and disability
  2. Those lives are equally worthy of treatment and care
  3. Those lives are equally loved by him as his love for anyone else
  4. His message was always that to enter the Kingdom of Heaven, we only had to go through him; we could heal and soothe our souls by believing in him and his sacrifice for us. The healing of the sick, infirm, and disabled was a visual “prop” to demonstrate that message.
  5. If he could heal our physical bodies, imagine what he could do for the soul

Okay, now I’ve veered off a bit so I need to come back to point. 🙂  It happens. I meander.

We live in a society where it’s an outrage for a parent to murder a child, but in that same society there are apologists who can empathize and sympathize with the parent who murders their disabled child. There’s a statement of value of life placed there, and it’s never more obvious as then.

There’s never another time except in the intersectionality of Disability and other protected classes that we must defend our very existence let alone being deserving of healthcare and the insurance coverage.

There are people who have made healthcare coverage a privilege rather than a right. In a country like America, how can that be possible? I’ll tell you how. We have Republican legislators publicly stating that they believe disabled people are a drain on society. That is a complete devaluation of an entire protected class of Americans. Human beings. That’s not just a lessening of importance, but a complete devaluation. It’s appalling.

It makes it easy to see how the GOP, while conducting secret meetings that the Democrats aren’t allowed into, are trying to create bills that effectively kill Medicaid and life-saving coverage in healthcare. They won’t publicize the bills to see how the public feels about it. That’s how much they value life other than their own.

That’s not making America great. It’s dragging America down. It’s not ideal, but dangerous. It’s cruel and selfish. It’s not saving money. It’s costly and will not only cost more money, but will cost thousands upon thousands of lives. When a job becomes a means to pay for healthcare versus supporting the family, that’s not something great in the way the Trumpster Dumpster Fire means it.

It’s a Great Failure. It’s a Great Crisis. It’s a Great Tragedy. It’s unConstitutional, making it a Great Crime.

I’ve had friends who are in the nursing field speak negatively about the value and quality of life of people that are chronically, permanently sick and/or disabled. Some of them honestly believe that life isn’t worth living, and it’s too much of a burden for family members. They believe that the resources and space used are too costly for family and medical services, which could be used elsewhere for people that have a better chance of living a good quality and higher productivity of life without being a burden or using up so many resources.

Do you know what that argument is? It’s eugenics.

Disability doesn’t mean we’re completely incapable of living complete or meaningful lives. I’ve heard the argument that disabilities, diseases, disorders, and illnesses decrease the quality of life and thus the meaning of someone’s life. That without a stereotypically perfect body, brain, beauty, intelligence, health a person can’t possibly live a happy, quality life.

Every single human being has worth and value. Quality of life is subjective. Disabilities from birth or acquired don’t give other people any right to determine the value of that individual’s life. The only person who can determine the quality and value of life is the individual living it. If they have a cracked mirror, however, and they’re viewing themselves through the cracked mirrors of other people then it’s likely that their self-value will mirror back something broken and cracked.

I don’t know when our culture started to decide that our lives as disabled individuals were less valued, less meaningful, and lesser quality simply for being disabled. I don’t know when our culture decided to make how much money on our paycheck indicates our worth as a human being.

People are shocked when they discover that yes, disabled people have brains in their heads even if they have a cognitive disability or intellectual disability. And guess what else? People that use wheelchairs can think for themselves too! And we can work jobs! Real jobs! Did you know that if you have a job… any job… you’re likely working next to people who have some type of disability? It may be a physical disability, such as chronic pain or hearing loss. It could be a mental health disability such as depression disorder with anxiety or bipolar disorder. But you don’t know it. Because you don’t need to know it. Your coworkers are managing their disabilities and working and it’s none of your business.

They may not need any accommodations and haven’t even had a need to tell your employer. Or maybe they do need an accommodation but they’re afraid to tell your employer. Can you guess why? Even though it’s against Federal and State laws employers still discriminate against hiring people with disabilities. They pay disabled people less than their peers. They give disabled people fewer hours. They tend to fire disabled people after finding out about disabilities more often than not.

And even still, disabled people can make just as much money as non-disabled people. The problem is that non-disabled people, or at least people who don’t think of themselves as disabled, seem to think that they get to decide who has value, who doesn’t, and who gets to work, and who doesn’t, and what exactly makes someone who has disabilities capable. They think that even if we do the same exact job, even if our quality of work is better and we produce more, the fact of being disabled means they’re somehow “liable” and responsible for us and/or we don’t deserve an equal or better paycheck than our peers. We can’t possibly know what’s best for ourselves, or make our own decisions. We’re not capable of rational thought. We’re not deserving. We’re less than. We are Other.

And now, with this new administration in office, it’s becoming socially acceptable again to be open about this discrimination and eugenic belief systems. It’s setting the Independent Living Movement back by decades. It’s setting the Civil Rights Movement back by decades.

There ought to be more people outraged by this. It’s not manufactured outrage or fear. This is real. This is what can ruin the lives of millions of Americans. This is worth fighting against. It’s worth fighting to maintain our rights.

Why are people so willing to allow the GOP to dissolve anyone’s rights?


Equality. When women and other protected classes fight for equal rights to be recognized legally and for discriminatory practices to be made illegal, we are not infringing on the rights of others.

We are not diminishing the value or equality of others.

We are maintaining that others hold no superiority over us.

We are asserting our rights to make choices for ourselves in all things, as intelligent, empowered, sentient, educated people.

We are advocating for those who may not have as big of a voice as we do, who may not have as much education, but still deserve all of the protections and rights as we do.

We may make mistakes along the way, as all movements do, but we have momentum and we have justice on our side.

I get to parent three incredible daughters. My daughters and I have conversations about important things. I teach them by example. My hope is to raise them into strong, caring, loving, and generous women with high self-esteem and a good education.

I want them to be confident in their talents. I want them to continue to be self-advocates and to advocate for others. I want them to continue to choose good, supportive, and positive people to help raise them up. I want them to continue to value their family and friends. I want them to know that they have choices, and they have these choices at any stage in their adult live; that it’s never too late to create a dream and work towards it. 

Being a feminist means recognizing that the world is open to us with unlimited choices, and moving forward to remove boundaries in society.

It’s a daily fight in legislature, a daily prayer, daily action, and daily modeling of behavior.


Dear Kathy Griffin,

I hope today finds you, well, I hope it finds you well. I’m assuming that today, likely now to be known as Two Days After That Execution Video & Photo Shoot, you’re having some internal dialogue as you and your publicist continue with damage control. I’m not going to assume too much about your state of mind prior to that stunt; I’m not going to assume too much about your current state of mind either.  

I’m not interested in being part of your character assassination. I’m not going to flame you or try to hurt your feelings. My intent here is to try to bring you back down to Earth where the little people are. I’ve peripherally noticed your career, since I’m not a fan of your brand of comedy.  I do appreciate your activism and find your serious acting roles interesting.

So when Wednesday I only peripherally noticed your name in one or two vague Facebook statuses late in the evening, I assumed that you had simply pushed a sensitive political button for Republicans. I went to bed blissfully unaware. I had a nice balance of polite dislike-sometimes-like and respect.

Thursday morning (yesterday), the morning news and radio were kind enough to share all of the gory details of the “Execution Video” showing you holding the decapitated head of Donald Trump. They shared your interview about the video you made with Tyler Shields behind the camera. I saw the video with the blurred out “head.” Thanks to the internet, later on, I saw the more graphic images ie. no blurring. It drove the point home that the intended “joke” and the edginess, provocativeness of the juxtaposition between yourself and Trump and an ISIS terrorist and a hostage. They talked about your apologies, and mentioned how they’re not being accepted by organizations such a the VFW. They talked about CNN canceling your future job engagements with them.

It took a me a whole day to process what I had seen and heard. I’m appalled and disappointed. I’m sure you wish you had thought things through and considered that the only approving audience might actually be ISIS. I’m writing this because I’m not entirely sure that you understand why your apologies haven’t been accepted, and why many people won’t forgive you for a long time, if ever. Just think about the Dixie Chicks.

You’ve owned that what happened was wrong, yes. You say that you know it was wrong and won’t do it again. The tricky part here is that people aren’t convinced that you know why it wrong. I don’t think people are convinced that you know why people of all political persuasions and regardless of their opinions on Mr. Trump are as equally appalled. 

We’re already in a very precarious political situation. I know that I’m not saying anything new. It’s not a secret or anything even profound. It’s well known as a fact that it’s been a nonstop fiasco since this dumpster fire of a president announced his intent to campaign. I share the embarrassment over the fact that this man is sitting in the Oval Office. I share in the feeling of moral disgust and automatically-triggered rage and anxiety by simply looking at that man’s face.

We all want to have the balance of power restored. We all want to feel empowered in our lives, and to help others find that which makes them feel empowered.

This video didn’t come from a place of power or empowerment, and it doesn’t evoke those feelings in most Americans. There’s a shared shock, mortification, disgust, and genuine outrage across all party lines, and it’s one of the few things uniting those who support Trump and those who vehemently oppose him .

It doesn’t matter that he’s the most hated president in our history; that he’s made history by having the lowest approval ratings not only in his first 100 days, but of any president; He may be the biggest embarrassment in the international stage of leaders; He may be the most corrupt not-politician that ever politicked and the most corrupt individual to ever sit in that chair in the Oval Office; but none of that matters.

The problem is that what you decapitated wasn’t really Donald Trump. You didn’t figuratively cut off the head of the snake and speak out against his policies, ethics, morals, authority, or even his goings on in his personal life. Take Trump out of it. The decapitated head you held was not viewed as a symbol of removing Trump and his power and control. Those of us who are appalled could look at that head and blur out the features, and in our minds imagine any President in its face. We can imagine every President, past and future, in its place.

Because it’s not the current president whose head you decapitated.

It was the very notion of The President of the United States that you decapitated. You decapitated the very rich, full history, the respect, and honor of the Office of the President, and every other office. You decapitated the American People in a manner that was visually and morally repugnant; in a manner that was hateful, chilling, threatening, and violent. You decapitated the privilege, power, influence, giving the incredible potential and opportunity to do GOOD in that office, which is our right as The People under the Constitution.

We have problems in our nation, no doubt. That’s not news. Our country shares many of the same social issues and political issues as other countries. There’s corruption, racism, classism, ableism, and every anti-something you can think of. We have people that are anarchists and hate the government and authority. We have things to be embarrassed about and to apologize over.

But we are also a nation of advocates, allies, lobbyists, writers, artists, journalists, actors, parents, self-advocates, people that care and can make noise when our elected officials do and say things we dislike. We can speak out with our votes; writing letters; attending peaceful, non-violent protests; making phone calls; and anything else that’s protected by the Constitution regarding free speech. We want our messages to come from a true place of power, empowerment, peace, dedication, passion, advocacy, activism, patriotism, and non-violence as is our Constitutional right. This is what we take pride in, and what retains and maintains our Freedoms and our Civil Rights.

This is what Americans do.. we advocate, not decapitate.

I know it’s unlikely that you’ll stumble upon this entry, but if you do read it Ms. Griffin, I hope you read it with an open mind.

Sincerely,

Jessica

 

After The Press  Conference

EDITED TO ADD because I listened to that disaster of a news conference:

Back up the truck.

Kathy Griffin, you made a horrible mistake holding this press conference today. Justifying your actions and going on the attack and listing all of the horrible, disgusting things Trump has said and done as your excuse simply proves that you don’t understand why what you did was wrong. I’m no fan of Trump. I’m no supporter of the suppression of women’s rights. That doesn’t mean I can’t be appalled at that press conference.

It’s not appropriate to tell people to stop being angry because your feelings are hurt that no one “got” your joke and no one appreciated the art.

It’s not appropriate to accuse people of trying to suppress your right to free speech or violate your 1st Amendment Rights. You took offensive photos, and people are reacting. The nation is reacting. You say you don’t have a network behind you, you’re losing jobs. That’s not silencing you. It’s a business decision for them. It’s a consequence for you. People, men and women, have been fired for far, far less than what you did.

You have the right to free speech as long as it’s not hate speech; incites violence; can be considered a death threat or threat of violence upon someone else especially the president. You forget that people have a right to react to your free speech and what you believe is art.

I’m disappointed that you turned this into an equal rights issue for women. It would have been just as horrifying coming from a male comedian. It would have been considered just as inappropriate. This is what rich old white men say when they accuse us of “playing the woman card.” Turning on the tears and pointing out how you’re such a small frail woman doesn’t do any favors for you or for women. Your behavior in that news conference perpetuated every negative female stereotype, and as much as you want to claim Girl Power and pretend that this is about you being a woman, and there are some big bad good ole’ boy men silencing you poor little tiny female, you stomped feminism under your precious little feet.

There’s this thing where you tell a joke, and people laugh, and you know it’s funny. There’s this other thing where you tell a joke and no one laughs and you know it’s not funny. Then there’s this final thing when you tell what you think is a joke and literally everyone is angry and appropriately outraged, and you have to accept that maybe the problem isn’t everyone else.

Chastising others wasn’t the way to go. Humility was. Laying low and refraining from having a press conference where you said all of these things that you should have kept to yourself until you gained more perspective was the way to go.

You’ve only made it worse.

People don’t tolerate sorry-not-sorry nonpologies.


A friend shared this article from The Atlantic. The timeline of the Trump dumpster fire of the prior ten days is nicely laid out in a way that doesn’t make my  head all ‘splodey.

Well… except for the fact that it’s not even taking today’s news cycle into account. It’s not even 2:00 p.m. yet and we’re having a hell of a day.

 

After an extraordinary 10 days, the tenure of the chief executive may have deteriorated beyond his ability to repair it.

Source: The Trump Presidency Falls Apart – The Atlantic

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