Help for Healing

Bitter & Sweet, living daily with grief


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Weight Management

If you’ve known me for a while, you know I’ve struggled with my weight most of my life. I look back now at pictures when I was younger and I think, what was I worried about back then for? The last decade or so, I’ve figured out what the biggest problem actually is. Sugar addiction. Really bad sugar addiction.

Once in my life, I met with a dietician and actually lost 25 pounds. First and last time I ever really had a big success to brag about. Since then, it’s just been that roller coaster thing.

I know when I’ve lost control again. The clue is when you are at your friend’s party and her aunt is waiting in line for the bathroom with you and asks you if this is your first pregnancy. I used to have a rule where anytime I am asked that, I have to get rid of the outfit I was wearing. After all, it must not flatter me, right? That rule didn’t last long when I didn’t have any clothes left. Luckily, that night I was with my super great boyfriend. He told me that in a few hours when we were alone, he would be able to reassure me that I was very attractive. We spent the night joking about “the baby being hungry” and other such lines to make a joke out of it.

The next weekend we were out late and ended up ordering dinner about 11 pm. I ate an entire fish fry and then was still a bit hungry. I joked about the baby being hungry again and I watched his face turn white. He stuttered, “Are you trying to tell me something?” and then I reminded him of the joke. It was hilarious. For me, that is. Poor guy.

Today I was with my dad and sister at the doctor’s. I offered to help this sweet elderly lady ride up the elevator. She didn’t want to go by herself. I was feeling pretty good about myself because she and the staff thought I was so sweet. After the doors closed, she looked at me in her kind voice and asked, “How many months are you?”  Sigh. Definitely time to concentrate on losing weight.

We went out to lunch after the doctor’s. Old Country Buffet. Gorge festival. You know the kind of places. You eat  until it is painful. My favorites filled my plate (more than once). Carb city. Mashed potatoes, french fries, rolls, mac and cheese.

I WILL concentrate on being more healthy.

Tomorrow I guess.


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Being Mortal

One of the big books on death/dying is “Being Mortal” by Atul Gawande. Recently, Hospice sponsored a viewing of a PBS show Frontline that interviewed this doctor and several other “specialists.” It was produced only a few years ago. (It is available online for viewing at pbs.com if you are interested. I will have a link at the end of the blog.)

I don’t usually get emotional much at these events because I am so consistently immersed in the topic, but this one got to me. There was a video of a man who they were discussing Bilirubin levels with. He was strikingly yellow from jaundice. It all came back to me with a rush. All the same lingo, walking in and seeing Tim’s face and body in strikingly yellow color. That was it, I was done for.

This is not meant to be criticism, just observation and it was fascinating to me. Here was this documentary with doctors, some actually oncology doctors. One was considered a “palliative care expert.” Their ability to handle medical information and dying patients was a bit abysmal. Most of them deal with it day after day, and yet that had no grasp on how to handle the dying with dignity. In fact, usually the patients were much more comfortable than the medical teams working with them.

The author and narrator said it himself. Three doctors in his own family. When terminal illness struck, not one of them knew what to do. Wow.

One of the things I walked away with though, is what I’ve heard over and over again. Doctors feel like anything less than cure is a failure. Of course everyone knows we eventually die, yet somehow they expect themselves to do the impossible. What’s worse yet, is that living forever (in any condition) isn’t even desirable for most. What a mountain of a problem.

Yet I felt hopeful. Here is a doctor that has put his failures on TV for the world to see. That is extremely rare in our culture. In fact, the scene opens with a family who has lost someone relatively young. He tells the widower that he outright lied to his wife. He gave her hope to live when there was none. He couldn’t tell her the truth. Being willing to admit all of that in hindsight though, is incredibly brave in my opinion. And it leaves the door wide open for change and improvement.

The biggest lesson from the documentary, was that the conversations all were happening much, much too late in the game. By the time the doctors faced the truth, it left little or no time for people to attack their bucket lists, say goodbye, get their affairs in order.

The other thing I took away, was how incredibly blessed and lucky Tim and I were. Somehow, we knew to always ask about prognosis. We were able to make the most possible out of the five months we had. We had lots of docs and medical peeps who were honest and open with us. At the very end, our Hospice nurse Patty was beyond outstanding when Tim was grappling with the truth of the end of his mortal life. She didn’t stumble, not even a tiny bit. She was strong and steadfast and honest.

One of the closing comments was short but profound. We need to treat persons, not patients. Period.

My last observation was this: Someone needs to design those damn hospital beds for the end of life that are double in size. It is beyond heartbreaking to admit the reality and not be able to climb in next to your loved one at such a sacred time. Footage after footage showed people in their dying hours with their loving support next to them, but not near enough. If someone wants to market that little nugget, please feel free but mention me when you make your millions.

Thanks Dr. Gawande for making such a courageous documentary.

Link: http://www.pbs.org/video/2365422384/


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Care Calendar

There ought to be a name for people who are elderly, but not in need of a nursing home. My dad fits right in that in-between category. He is able to live on his own, but not without some assistance. He needs more than nothing, but doesn’t need to be in full-time care.

He and I recently had a talk again about where he lives. He is in a one-bedroom apartment. He isn’t quite ready to move in with me and my family, and he doesn’t want to live in an assisted living home. Frankly, they can be a bit pricey. The next thing you know, your life savings is gone. (I mean your LIFE savings… a person’s entire work life savings.)

I asked him if it would help if his family/friends set-up a calendar so he had some things to look forward to. He thought that was  a good idea so I was glad. I was also overwhelmed though. I knew that I would have to be a lot of phone calls and also figure out a way to keep everyone informed. I felt the stress radiate through  my shoulders. Then it hit me.

Care Calendar! When Tim was sick, our friend from church was kind enough to be the administrator for our Care Calendar site. For those of you who haven’t heard of it, take note because it is an amazing site. You can find it on carecalendar.org and it is free. They encourage you to make a donation if you want, but it is free to utilize.

I spent the afternoon setting up a page for Dad. It was well worth the time investment. It is literally just what it says, a calendar. On that calendar, you can put as many “needs” as you would like. I set up meals, grocery shopping, transportation, apartment cleaning. and visiting. People (“helpers”) can then visit the site if given a code, and sign-up to take care of any of the needs listed. There is even a separate code for more sensitive/personal items that you wouldn’t want the general public to see.

When a person signs up, they give their name and email address. When it is time, they will receive a reminder email that says, “Don’t forget, you are bringing Joe Schmo dinner today.” As the coordinator, I also get an email that says, “So and so is bring Joe Schmo dinner today.” It’s an excellent system.

With the meal example, it will also show relevant information. For example, I set it up to tell people what Dad’s diet restrictions are. Currently, he is on a “mechanical soft” diet, which I define for them and also give examples of things that would be good for him to eat. The calendar can show what the person plans to bring him too so others will know and he won’t get the same type of food every day.

It really is an amazing tool and I can personally attest to the remarkable difference it made for Tim and I when he was sick. We were able to concentrate on him because our basic needs were totally cared for. I have such fond (and humbling!) memories of that part of our journey. People’s kindness was overwhelming. I am hoping that this works well for Dad too, although his needs are minimal compared to someone with a terminal illness.

Thank you to the family that started this brilliant site. And we will definitely be making a donation in the future 🙂 !


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Cinnamon Toast Crunch

Well, nobody is perfect.

I said to Frankie, “Hey, remember when you were younger and I asked you to write my blog and you did?”

“Yeah, but I’m not writing it again.”

“Come on! I’m looking at a blank screen.”

“Well, think of something.”

“Frankie! At least give me an idea.”

“Fine, Mom. Write about how you ate all of the Cinnamon Toast Crunch this week.”

Last week I blogged about my attempts to eat and sleep better. I am happy to report that I did follow through with what I said I would. I set up an alarm appointment that reminded me to go to bed at 11 pm. Last night was my first night at 10:45. Unfortunately, I couldn’t fall asleep for anything.

I also set an alarm for 8 am to drink a protein shake. I am happy to say I either did that or ate bran flakes every morning to start off the day correctly. I haven’t felt like it is habit yet though, but soon I am hoping to add “no eating after 9 pm” then gradually work back to 7 pm.

I try. I really do. I have no idea if I’ve lost weight or not, but I try not to focus too much on pounds anyway. The goal is to be healthier. I don’t think that is just rhetoric, I really believe it’s an important dynamic to success.

But I still fail miserably sometimes. I might eat well all day, but at 10 pm I will eat something I shouldn’t. Thus the Cinnamon Toast Crunch. I knocked off a box the other night, which consisted of two really full bowls plus another half.  Frankie informed me he doesn’t eat it anymore anyway, so I told him I won’t buy it. He said I buy it for me because I want it, and I told him that of course I WANT it, but I try not to eat sugar cereals so I really WON’T buy it anymore if he isn’t going to eat it.

He’s such a tattle tale. When he was really little, we went across the street to a neighbor’s party. I walked into the living room after visiting outside for a while to find a room of laughing adults. Frankie was in the center. He was telling them all about his mom’s Wii-Fit program. It has my weight down to a tenth of a gram. Also my BMI. He also delighted in showing the crowd several of my non-sexy exercise poses.

Traitor.

I went to a birthday party last weekend where we had a homemade cake from scratch with dark chocolate ice cream on the side. My “always eats healthy” friend mentioned a cake recipe that replaces sugar with beets. I could have died. I yelled out to the guests, “Anyone interested in a cake made with beets instead of sugar?” He almost slugged me. Definitely not me.

I will never be good at this weight and eating stuff. Never. But I also probably won’t ever stop trying to at least move in the right direction.  As they say in Alanon, “Progress, not perfection!” Amen, sister.


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Back to Basics

When I lecture on death/dying, I often talk about how even with all our modern marvels of medicine, human life always comes back to two basic needs- eating and sleeping. When a person is undergoing treatment, neither eating or sleeping is easy to come by. Palliative/comfort care often restores exactly that- the ability to eat and sleep more easily. That is why research shows that people often live longer with palliative care than they do with curative care (chemo, radiation, etc.).

I’ve been thinking about how recently my eating and sleeping have been not been doing so well. Honestly, not eating well has been a lifelong problem. It has been the exception when I have been able to get a handle on eating properly. I’ve actually been successful, but only for brief periods of time. Every day I wake up and attempt to do so again, but usually by 2:00 pm I’ve sunk again. I have all the education I need, I just don’t have the motivation or willpower to follow through. Or something.

I tried to think of a baby step I could take and I came up with setting up a task in my calendar that comes with an alarm. At 8 am every day, I want to have a protein shake. That will start my day correctly and maybe if it is an actual task that needs to be checked off, I can put my OCD to good use. If I can get that to be habitual, my next goal will be to set a reminder up at 9 pm that says, “No more eating” and eventually decrease the time until 7 pm.

Sleeping is another lifelong battle. Even my baby books talk about the problems I had. I’m sure I had night terrors, they just hadn’t been named yet. I’ve done sleep tests at different ages. I’ve tried all the different medicines there are. But lately, I’ve just gotten in a bad habit of watching Netflix until 1 in the morning. Then I don’t want to (or can’t sometimes) get up when I used to. After waking Frankie for school, I go back to sleep. By mid-afternoon I need a nap in order to get through my activities. Vicious cycle. Once I nap, then I’m up at night again.

My baby step was again to add a daily task set up with an alarm. My goal for the first few days is to go to bed at 11 pm, WITHOUT Netflix or anything else. Even if I just lay there, it will help break the habit. Then I can lower the time by 30 minutes until I get to bed at a more decent time for me.

So simple, but sometimes I just have to hit myself over the head. Your eating and sleeping is off, Darcy so it is effecting everything else. You need to fix it.

Tiny, elementary steps that I feel like I shouldn’t need to still be making at 50 years old, but yet here I am. Small, incremental steps are the only way that I know of though, to make changes that won’t make me want to jump off a cliff.

Sigh.

I love the ‘ol AA slogan: One day at a time. It’s better than not trying at all, right?


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Fun with Ultrasound

You know my theory. Face the glass half-empty and then from that space, find the half-full. Caring for an aging parent can definitely be a taxing experience. But I have found some fun things that are happening because of caring for Dad. One big thing, is I’m spending a lot more time with my brother than I ever used to.

Dad had his follow-up ultrasound today so my brother Alex drove him out. Dad still drives, but only short distances. We drive over to the radiology center and who knew an ultrasound could lead to so many laughs? Dad and I sit down while Alex parks the truck. I go over to get a cup of tea and ask Dad if he wants some coffee. Now, Alex and I are actually pretty evil when it comes to being children. I know Dad likes his coffee, but I know he can’t have any until after his ultrasound. Alex comes in and he gets some coffee. We all sit down and Alex offers Dad a sip of his coffee. Like I said, we are equally pretty evil.

We get called back to register but there is only one seat. I would normally do Dad’s paperwork but they need his signature. I sit on Dad’s lap, but I know I will crush him. The nurse laughs and the rest of the paperwork is simple. Back to the waiting room. Dad hands me his phone. I look at Alex and hand it to him. I kind of like not being the number one person anymore. Alex is the one that spends more time with him and is taking him home. Alex pockets the phone and then says to Dad, “What about your wallet?” Evil. Entertaining for the people in the waiting room though.

After Dad goes back to the actual ultrasound, Alex and I decide to tell him when he gets out that we got bored waiting and went to breakfast without him. Not to worry. We let him know we were happy to go through a McDonald’s drive-thru for him.

Denny’s is our new favorite hang-out after medical appointments so off we went. Dad wants to sit in a booth so we get planted in the middle of “old person camp.” I tell him I am going to say hi to some friends I see and Alex says,”You have friends?” with great surprise in his voice.

Sitting next to Alex, I am dying because the old man behind me is blowing his nose so loudly it is turning my stomach. For whatever reason, Alex can’t even hear it which I find astounding. About five minutes later, the old man across from us starts blowing his nose. I look at Alex and we crack up. Shortly after that, Alex knocks my elbow off the table. I look at him and he nods at Dad. Sure enough, Dad pulls out his hanky and blows his nose. Alex and I are rolling on the floor by now.

Until Dad gets his bladder procedure done, the poor guy has to go to the bathroom every 10-15 minutes. The joke is old as dirt but after trip number one, I ask him, “Did everything come out ok?” The answer is yes with a slight smile. After trip number two, I ask, “Did you find it ok?” And the joke is on me this time. Dad looks at me without a pause and replies, “Yes, I have a string tied around it.” Now all three of us are rolling on the ground. My sister ended up calling right after that. We put her on speaker phone which livened things up even more.

Dad had a gift card and Alex picked up the rest of the tab and the tip. On the way home, I tell him I understand now why Dad prefers my brother drive. He always picks up the tab. When I’m with Dad, I always let him pick up the tab. I did say that I offer to pay on occasion, but I know he will say no and I only offer once. Either way, now that there is three of us, I’m about 99% guaranteed I am getting a free meal out of the gig.

Next week we go the cute surgeon’s again. Alex will be with us this time. God only knows what will happen.


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Millard Suburban

Part of my new career is talking about death/dying and grief/loss, and part of the goal is to help improve the medical system. I admit, I am hard to please when it comes to hospitals and doctors. It’s not because I’m cynical and picky, but I do honestly believe that our system is very, very broken.

When I went to Punta Cana for four days, so many people told me I needed to go for a whole week. Boy, would I love that. You barely get time to drop your guards down and it’s time to return. But I’m a single mom, a therapist, and I help take care of my dad. I just feel like I can’t be gone longer than that. And sure enough, there was one client emergency and my dad ended up in the hospital. Sigh.

Anyhow, I have to say, I love Millard Suburban Hospital. Dad has been there three times since April. Of course no person or entity is perfect, but I really like these guys. When I got the text about Dad, I started in right away. First I had to handle a situation for Frankie because obviously Dad wouldn’t be staying with him if he was in the hospital. Next was sorting out what was actually going on. Dad does his best to understand the medical stuff, but sometimes things get mixed-up. Everyone who was local was visiting him and trying to talk to doctors, but there was some confusion.

I called the hospital and explained my dilemma of being Dad’s medical advocate (as well as legal and financial) but that I was out of the country. I got a call back from the nurse practitioner. She remembered me and Dad from October’s stay. I immediately felt better. She did her best to explain what was going on. She also said he was stable and I didn’t need to get on a plane and come home. She also said she would call every day and let me know if there was any change.

She did exactly that. She even remembered to say “Happy Birthday” in her message on the day of my actual birthday. (She is turning 50 this year too!) She also had the surgeon call me directly. He explained things to me even further. He was able to clarify some of the more confusing aspects of what was happening, which turned out really just to be a clarification of terms. I told him that I was returning home Tuesday night but not until midnight. I asked if there was any way to keep Dad there until Wednesday so he was not released to his apartment where he lives alone. No problem.

He did exactly that.

I really appreciate this hospital. I figure I do enough complaining about all the bad stuff that happens, I wanted to acknowledge the good stuff that happens. I think I would like to go there if I ever have the need to be in a hospital. Thank you to all the staff who took such good care of a man who all of his family love very much. And thank you for bothering to care about a 50-year-old who was on a much-needed break. You put my mind at ease, which all the beautiful paradise-like sun in the world couldn’t have done if I was worried about my father. Kudos!

(P.S. For those of you that follow me on Facebook, yes! This is the same surgeon that I met in person when I got home and could barely concentrate because he was so handsome… Just another perk of the hospital!)