Help for Healing

Bitter & Sweet, living daily with grief


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Computers: Friend or Foe?

When it comes to phones, home repairs, or computers, those who know me well often say things like this to me: “Gee, you seem to have a lot more problems than anyone else I know.” This is validating, but also adds to my madness. I try to do everything the way I’m supposed to but I still end up pulling my hair out.

Since I’ve had so damn many computer issues, I have a really great friend who is my IT guy. Most of the time he accepts pool and hot tub usage in exchange, but I think he gets the short end of the stick. We have everything set up to be fool-proof. I have a program that backs up my data every single night to an external drive. That way if something happens to my computer, the data won’t be compromised. Then I went the extra mile. I bought another external drive to back up the back up. Two copies of everything. Fool-proof, right?

Wrong.

One of the things I hate on my computer and phone is that “they” can update things without your permission. Makes me crazy. I mean, we pay for the stuff. Why should they be able to have control over the devices? Half the time, it seems to me that the updates are “down” dates. They “fix” things that aren’t broken and create new issues. The last two weeks I have been struggling with Windows 10 and the updates that happen whether you want them to or not.

All of a sudden, I can’t use my computer. I’m not exaggerating. One letter on the keyboard and the thing would spin for almost 10 minutes. I can’t work like that! Turns out, that is the problem was with the new update. You can take it off, but it just keeps putting it back on. My computer eventually started restarting itself over and over, rendering itself completely useless. Guess what happened? My hard drive crashed.

Son of a bitch!

All of the work I have done for the last couple of weeks were saved and showing up daily as current. But apparently, the drive was getting ready to crash so when it backed up every night, it wasn’t backing up my work. The documents I have do not show any of the current work I was doing. That is fun when you go to balance your checkbook (and your dad’s) and realize none of the bills you paid were saved. The rest of the stuff I lost was literally hours of reading and research that has to be redone now.

The highlight of the week was yesterday when I thought I was calling Microsoft. After 45 minutes with this guy, I realized he wasn’t helping me at all. He just kept trying to get me to buy stuff. I tell him to disconnect from my computer but he ignores me. I can’t get to the button to disconnect him because he is controlling my mouse. I was literally insane. I was screaming at the very top of my lungs, calling him every profanity I could think of and he just kept deleting crap on my computer. Turns out the number I called was not legitimate. That was great, because losing all my work and being unable to do any current work wasn’t stressful or dramatic enough.

HA!

Anyhow, slowly piecing things back together but I’m sure it will take a lot of time to get things operating normally again. Love the technology most of the time, but man, sometimes I want to literally throw it out the window. Am I the only one?

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When Sense Goes to Cents

This has got to be one of my most clever titles ever. It references what I consider to be one of the biggest problems our medical system has, the change from service to business. The almighty buck is the bottom line. Thus, common “sense” in practice has gone to worrying about “cents” instead.

If you follow Grey’s Anatomy, last week’s episode got me in a snit. It centered around a surgeon who knew she was having a heart attack but couldn’t get the doctors to listen to her because they were following their “protocol” and discounting the actual patient. Of course she ended up having the heart attack and almost dying because of it and I just sit there with my whole body tensed up knowing this isn’t just drama, it’s what really happens.

Last week I took Dad to his appointment with the cardiologist. The nurse had to check his pacemaker. She and I started chatting. Poor Dad. He must think to himself, “Oh God, here we go again.” I explained to her that Dad had switched to palliative care and that I found myself having to explain what to means to medical professionals, even those that work primarily with the elderly. Palliative does not necessarily mean a person is in the active stages of dying.

She told me that she was having the opposite problem in her family. I asked her to explain what she meant. She said while I was trying to get unnecessary services for Dad decreased, she finds herself fighting for services for her sister. Her story was appalling. I was so grateful she shared it with me because it gave me an entirely different perspective. It’s the same problem of having to fight a giant, broken system, but she was coming from the other side of the fence. It stretched my mind and further ignited my passion to try to change the ridiculous way things are run these days.

Her sister is relatively young, in her fifties. She has a degenerative, incurable disease and is now in as assisted living place where she gets medical care 24/7. At this point, her symptoms are similar to that of a quadriplegic as she has no use of any of her limbs. Like Dad, she has a swallowing issue. She was evaluated (like Dad has been a million times) and it was determined she requires thickened liquids. What often happens at this point, is that dehydration becomes an issue. It’s hard to keep drinking when you are on thickened liquids. Dad made me taste his thickened water at his last rehab stay. It was gross. Dad has decided he’d rather take the risk of choking than live the rest of his life drinking that stuff. I don’t blame him.

This woman is in a different place though. She is much younger than Dad and her brain is sharp. Her body just isn’t cooperating. Her sister noticed on one of her many visits that a little bit of regular water was helping immensely. She could communicate with others and would feel much better for a brief time. Dad’s nurse said that she even showed the medical team what a difference the water made and they agreed it made quite an impact.

Now is when the madness starts. Because she has been medically tagged “thickened liquids,” the staff is unable to give her even a sip of water. They can’t stop a family member from giving her some, but they can’t officially do so. Once she is labeled, there is no room for any exception, even when it is clearly medically indicated.

Upon inquiring further into this insanity, she was told they could indeed give her water if her status was changed to “comfort” care – i.e. palliative care. However, if they did that, she would no longer receive physical therapy or any other services she was currently given. Is it just me or is that ridiculous? It seems particularly cruel to do to a woman who can’t move her own arms to get herself a damn sip of water.

It’s about billing and regulations. I certainly understand the need for regulations, but why should you have to stop using common sense? Is there absolutely no room for even the tiniest piece of individual need? Not if you want insurance to pay for it.

My blood boils when I hear this stuff.  To Dad’s nurse- I don’t know if you are reading this, but if you are, thank you for sharing your story. I have no idea how it will take shape, but I am working to try to effect change for people like you and your sister. It’s an uphill battle with little success, but I’m not going to stop trying. Let’s try and bring compassion back to patient care.

Isn’t that just common sense?


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Pit Bulls and Hockey Moms

I have a sign in my basement that says, “The only difference between a pit bull and a hockey mom is lipstick.” It reminds me of that NHL commercial that used to be on. Two men get on an elevator wearing rival team jerseys. The next time the door opens they both come out looking beaten up. The line is something like, “hockey fans are a different breed” or some similar sentiment.

I get it, but I have to admit I haven’t fully acclimated and I probably never will. Frankie got into his first real hockey fight last weekend and ended up suspended for three games. People of all ages and genders congratulated him for a defense man’s job well done. Even my counselor said that it was good that he was such a tough player. It’s needed in a sport like that.

I repeat, I get it. But I had a stomach ache driving home from that game. While I can mentally wrap around it, every time he checks hard or looks like he might scrap, I stand on the bench, frozen with my hand over my mouth. I will never get used to watching my son in those situations. I figure everyone else can high-five him, but I just can’t. I wouldn’t scold him, but I just can’t bring myself to cheer him on. I worry to death about him.

At another game this week, I was hanging out with a bunch of parents. Frankie had told me they were playing a team that hadn’t won all season. I felt bad for them before I even got there. I remember the year Frankie was on a team like that. It was torture to go to the games. This night, the opposing team was short players too which meant the kids on the ice were utterly exhausted. I kept watching the goalie and seeing his head hang low every time our team scored against him.

Finally, I couldn’t help myself and just blurted out how sad the goalie looked. The parents started to chuckle and one of them turned and said, “Spoken like a true counselor.” That did it. Everyone cracked up, even me. I really am the social work type without even thinking about it. The jokes just piled on after that. They suggested I go over to the glass and try to talk to the poor kid. Maybe I could offer him my card and a free session. I could say things about his self-worth. You get the gist of it. It was all in good fun and I had to laugh with them and even played along with it.

Yep, I’m not a true hockey mom. I just don’t have enough pit bull instinct.

Actually, I have to admit, I’m more than okay with that. In fact, I hope that part of me never changes. (But let’s not tell Frankie!)


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Proper Priorities

I have recently become a contributing writer to Totally Buffalo. I will be blogging every 3 weeks or so on this site. I am cheating and posting a link here on those weeks so welcome to my first official post! It’s entitled “Your Relationship is the Priority, Higher Than Any One Person’s Individual Needs.”

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Janet

My sister Janet is eight years older than me. I have some memories of her as a kid, but mostly there was a big enough age difference that we didn’t steal each other’s clothes or boyfriends so there wasn’t a lot of conflict.

She is the middle child, but for years we also called her the Perfect Child. As adults, I found out that she always hated that so I stopped saying it. I also call her Dad’s favorite daughter and I haven’t stopped saying that. I joke around about it, but it doesn’t seriously bother me because she is truly one of the kindest women I’ve ever known in my life.

I was just talking with a client yesterday who has a family member with cancer news. I remembered when we starting testing Tim and suspected it might be cancer. Janet lived near Rochester so she was an hour-and-twenty-minute drive away. I was on the phone with her when she said, “No matter what happens Darcy, you won’t be alone. We will be there every step of the way.” And she was.

Twice during Tim’s five months of illness, she took an unpaid leave of absence to come and help. I never forgot that because there were other relatives/friends that lived closer and were more close to Tim than she was, but she was the one that didn’t bat an eye. She just took the financial hit and came.

One memory that particularly stands out was when the decision was made for Tim to go to Hospice to try to get his sleep regulated. I called her to tell her and she made all that distance and got here before the transport car came. She and I took Tim around the property in a wheelchair to give him a chance to look at everything, reminisce, and ultimately say goodbye.

She has been here again, this time for Dad. She arrived the day before New Year’s Eve from Tennessee. And she is still here. She leaves Saturday which means she was here a full three weeks. Dad required 24 hour supervision until this week so she literally spent the whole time with him in his assisted living apartment.  I can’t even begin to express what a massive relief that was to me.  I know Dad is going to miss her terribly, as will I.

I enjoy her company immensely, but I was in a catch-22. She was here to take care of Dad, which was my chance to get a break. I wanted to visit with her, but I needed some distance from the situation at the same time. Thank goodness she completely understood that.

Even though she lives in Tennessee now, she still had a job where she had to take an unpaid leave of absence to be here. To take a three-week cut in pay when you live paycheck to paycheck is an incredible sacrifice. She makes it without blinking an eye, without a question. If I asked her to stay even longer she would.

Her husband supports her being here, even though I’m sure he misses her. Her daughter supports her being here, even though Janet misses her little grandson so much I’m sure her heart aches. So thank you to all of her family who let us borrow her capable hands and her ever-giving heart.

And how do I thank Janet? I couldn’t possibly. But deep down, I know she knows. She loves me too, and came to support to me. Mostly though, she did it for the deep love she has for our dad. He’s not an expressive man, but I know he appreciates her as much as I do.

IMG_20180109_101722452_HDRThank you dear Janet. You truly are perfect!


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Put Your Money Where Your Mouth Is

I have been lecturing on death/dying/end of life planning for four years now. As my dad has been going through medical issues, I find myself on the other end of that conversation. I hear doctors and nurses say things almost verbatim to the things I have said myself many times over. But it has been a good wake-up lesson for me to have it be so personal again. It’s been a while since the information has been so relevant and in my face.

A few weeks ago when Dad was in the hospital, we had to make some decisions. I have been anticipating this moment for at least a year, maybe longer. Yet somehow, I felt shock, blind-sided, unprepared. It was strongly reminiscent of what I felt when Tim passed. I had been at his side for months, thinking I was ready for the moment when he would go. But when they announced his death, I felt my knees literally buckle underneath me. I was shocked. How was that possible? Yet it was the definite reality I lived.

Dad made a decision to go palliative a few weeks ago. It totally makes sense. It’s a rational, reasonable decision. He has Parkinson’s, a degenerative disease that only gets worse. There is no getting better. After seven hospitalizations in 14 months, there will be no more tests, procedures, labs, hospitals, etc.. The decision was made through a very teary-eyed conversation between myself, my sister, and the nurse practitioner. She did an excellent job, just like I would have done in that position. She told us that Dad had spared us making tough decisions but clearly making his wishes known in his MOLST form. It was end of life planning working exactly the way it was supposed to.

Then why the hell is it so hard?

Now don’t get me wrong. Dad does not appear to be in the active stages of dying. But he is ready to when the time comes and wants quality of life until then. He could be around for a long time, no one knows.

My sister and I took him to see his dermatologist yesterday. We updated her on what has been happening. When we were ready to leave, she cried. She apologized if she was upsetting us but I told her it always feels good to know other people love Dad too.  He has a great team of doctors that have taken years to gather together.

Again, my point is just this. While I talk about this “stuff” quite frequently, it is still hard to face when it isn’t just concepts we are talking about, but someone I love dearly. It renews my passion again to help people think about these concepts before they are in the middle of crisis. It’s hard enough to do with preparation! I’m starting the process of figuring out my next career move but I know it is going to have something to do with helping people on this journey.


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Reflections

As January settles in, I have started my annual task of going through my filing cabinet. This not only accomplishes purging, but I also prepare for my taxes as I go along. It usually takes most of the month. This year, there is an added element to it. I am trying to go paperless as much as possible. That means do a lot of scanning, which can be time-consuming.

Today, I came across a folder that I basically forget about until January every year, the divorce papers from my first marriage. I have no contact with my first husband, but there are no ill feelings between us. I was thinking about him this year more than usual because I am dating someone whose middle name is the same as my first husband’s last name. Back in my twenties, I changed my name to his so I bore that name for six years as well.

It was a 16 page document, which is crazy because we had the simplest divorce ever. No property, no money, no kids, yet it still required 16 pages of legal jargon. I scanned all of it and shredded it. New years are always a time for reflection so this morning was no different. Never in a million years did I think I would ever be divorced, but then probably no one ever gets married thinking that it won’t last forever. It made me terribly sad. Not bitter, just solemn.

Of course that led my thoughts to my second marriage. Never in a million years did I think I would ever be a widow. That is irrational, because if we had lived together until old age, there was a 50% chance that I would be a widow at some point, unless I died first or we both died at the same time for some crazy reason. Yet it never occurred to me. I suspect most people don’t think about that much when they get married. But I certainly didn’t think I would be a widow in my forties.

I mentioned in a previous blog about being at Emily’s last month with her now eight kids and thinking about how when I married the first time, we planned on six kids. We had zero. But in my marriage to Tim, I had one biological child but gained three step-kids. Four is a lot closer to what I thought my life would look like. If I marry again to someone who has two kids, that would make the six I originally thought I would have.

Life is like that lots of times. Maybe even most times. I think if we polled a bunch of people in their fifties, the majority would say their life doesn’t look the way they thought it would. What’s that famous saying? Life is what happens when you are busy making other plans. I keep thinking about Jennifer Aniston in the movie Marley and Me. Her husband is lamenting this very thing and she comes back with a confident statement about how much better their lives are than anything they ever could have imagined.

Makes me wonder what the future holds for me. What will life bring in the next chapter? What will 2018 hold for me? And will I lament or celebrate how differently it all came out? I vote for the latter!