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Tag Archives: worry

New Medication – Take Two


The decision to take Robert off of Trileptal (Oxcarbazepine) was very difficult. It felt as if I was saying, “Why no, Robert, you can NOT have seizure control.” Robert has tried his entire life to achieve seizure control. Our parents did what they could in order to reach that goal when he was a child. When Robert lived on his own, he signed up for any and all drug trials possible (by this time, against ... Read More »

Tell Us: Is It Okay to Pass on Fun?


Scott cares for his wife, Beth. He does what he can to make time for himself, to take breaks as he can. The past few months, though, have been particularly tough. He feels like he’s fighting a battle just to maintain the status quo, to keep Beth out of the hospital, to help her regain her strength. He feels for Beth, who tries so hard to stay positive but really struggles to keep her smile. ... Read More »

Three Pounds Overnight Or Six Pounds in a Week


Water everywhere and not a drop to drink is an appropriate title for this blog. I had coffee with my mother who suffers from heart issues (COPD), edema (excess fluid in the body) and several other medical issues. During our get-together she mentioned that during the past several days she added four pounds to her weight. Just before her double heart valve replacement surgery, Mom’s excess fluid pressed on the bottom of her lungs and ... Read More »

The Storm Before the Calm, I Hope


If I’m getting this right, we are at the, “Storm Before the Calm, I Hope.” In the past few months, Robert’s coughing, wheezing and seizures have seem to be getting out of control. Not saying we can’t control it. Most of you know mine and Trish’s attitude toward control. There is nothing I can think of that between us over the seventeen years that we have been unable to control. Things may get out of ... Read More »

Webinar Follow-Up: What’s a Strategy You’ll Use During Your Next Crisis?


In yesterday’s webinar, “Strategies to Help Manage a Caregiving Crisis,” I shared suggested strategies you can use to manage your next caregiving crisis. Because, in caregiving, it can see the only constant is crisis. (Please note: Our archive is available for everyone today (February 27) and to only our members beginning February 28.) I’d love to know: What strategy will you use to help you through the next crisis? Tell us about the strategy in ... Read More »

Do You Feel You Must Explain?


Last night during our Story-Telling Sunday, Michelle Seitzer shared an interesting insight about caring for her daughter, who has cerebral palsy. Michelle finds herself explaining to everyone, including strangers, about her daughter’s disorder. I found that really interesting. I wonder if we feel we must explain what makes us different. So, I’m curious: Do you explain your caree’s disability or disease to others? Do you find yourself explaining in certain situations or to everyone? Can ... Read More »

What’s Your Worry? Mine? That I’ll Be Mean


We try to find the silver lining, to focus on the positive, to keep a perspective that keeps us going. I do my best but honestly, when I think about a future of caring for my parents, I worry that I will be mean. That I’ll blow my top over something silly. That I’ll say something that I’ll regret. I worry that I will be short on patience and compassion and full of snarkiness and ... Read More »

Not Jeannie or a Genie


I am not Jeannie, as in I Dream of Jeannie, nor am I a genie. I do not grant wishes, I don’t look like Barbara Eden, I don’t live in a bottle or a lamp, and I don’t have a master. I think I’ve given the wrong impression that I might be a genie, though. Either that, or my husband thinks he is Captain Picard from Star Trek: The Next Generation. Many times during the ... Read More »

The Caregiving Yo-Yo


You can never plan the future by the past. ~ Edmund Burke How many of you liked to play with a yo-yo when you were a kid? I would guess that just about everyone has taken their turn, spinning their yo-yo up and down, controlling the string, holding steady, flipping the device backward to impress. As I have thought about how our caregiving journey has begun in 2014, I see a resemblance to that of a ... Read More »

A Very Frustrating Couple of Days!


Thursday: I receive a message today from the clinic that the online charting site that we have been using is going down as of February 15th. This charting service was operated by the clinic and was made part of their clinic medical record. Their reason for discontinuing is due to increasing costs for software licensing and increased security concerns. Does anyone have any online charting sites that the use that are free or very low ... Read More »

Update: It’s Been Rough


I have been having a rough couple of weeks. Actually, I’ve been having a rough couple of months. Marc has been doing really well with his recovery until I got sick. If I am not cooking and making sure he is eating every day and drinking fluids regularly then it doesn’t get done. In the span of the two weeks I’ve been down from severe migraines and being lightheaded, he’s become dehydrated and started having ... Read More »

In Six Words, While You Wait, What’s the Doctor Doing?


This morning, I’m a WAIT Buddy for one of our members, who finds herself waiting for the surgeon. What in the world do these doctors and surgeons do that make us wait, I wondered? So, let’s create six-word stories that explain what a doctor does during our waits. A six-word story could be: He’s folding laundry for his wife He’s finishing a bacon-and-egg breakfast She’s heading toward the ninth hole What’s yours? Share your six-word ... Read More »

In Six Words, What’s Your Happy Ending?


I recently read a great article on NPR, Editing Your Life’s Stories Can Create Happier Endings. The article offers great tips to help you through the leftover shame or bitterness or grief of your life’s traumatic events. By working through the experiences of your past, you can give yourself a better ending; rather than succumbing to a situation, you can now find the perspective that helps you overcome it. Fascinating. Let’s give ourselves a happier ... Read More »

Podcast: Table Talk with G-J


@G-J joined Denise yesterday on Table Talk to discuss how she is now living in her future, four years after her husband’s diagnosis. What an awesome show. I can so totally relate to how G.J. feels. It will be four years this month since Nicole was diagnosed and I never ever thought my future would look like it does. Congratulations G.J. on all your accomplishments that you have achieved in 2013. I really need to ... Read More »

It’s Officially 2014


It’s officially 2014 and it doesn’t feel like much to me. Holidays, birthdays, and all other special occasions have pretty much been lost on me for a few years now. I celebrate them for the sake of others but inside, I’m always wondering, “Who really cares?” Yes, it is a very cynical way to be, I suppose. Or you can call it an extreme realist view. However you want to see it, all I know ... Read More »

Podcast: Table Talk with Chris


Denise talked with Chris, @thpurplejacket, who cares for his partner, about how things are going with “the little one” after finding tumors on his spine and his round of chemotherapy. It was a wonderful show and I can so relate to the guilt and anxiety about leaving our carees home alone and worrying about something happening while your not there. I know I get very anxious if I can’t get ahold of Nicole either by ... Read More »



Things have been going very well here since Steve moved to a lower dose of one of his medications. He has been reading, his spirits are better, he seems to be remembering things, he’s napping less and he planned ahead and purchased a Christmas card and gifts. In the past when this has happened, I have wondered, Is he better? Has it really been something other than MCI all along? Yeah, I know, wondering if ... Read More »

The Energy Crisis


Steve lives with an energy crisis – his own. If he does too much one day, he isn’t able to do much the next. The catch is what defines “too much” and how and when it will impact him. Sometimes it’s obvious when Steve’s done too much. Last week, Steve attended a meeting at his former employer’s. After the meeting he visited with people for a couple of hours. He told me he knew he ... Read More »

The Riot Act


Outside the church where our MS support group meetings are held, my partner and I were met today by the group facilitator and a witness. They handed my partner a written warning that included this: We talked outside the church for the next 2-1/2 hours, during which time my partner went to the bathroom twice. That gave me a chance to speak privately with the facilitator and witness — because I agree with everything that ... Read More »

Unexpected Changes


In my last posts I was speaking about how we thought Smokey was getting better, in pain, but getting better. After a routine MRI to check to see how much the area had healed, we get a call the next day to get to the ER Immediately. And so we have been here since Friday. But nothing much has happened that we could not have done at home, except, of course the slew of tests ... Read More »


source: wikipedia

“My goal is to live until our son turns 18.” “13 months from now? Is there something you’re not telling me?” “Well, I didn’t expect to be on disability at 55, and I think it’s important for a child to have their parents until they are 18, don’t you?” I was quite a sight with my mouth open like a fish’s and tears spilling out of my eyes. “Frankly, I’m speechless. My goal is to ... Read More »

To Be Frozen or Not to Be Frozen…What Shall I Do?


Good Morning, everyone. There is always a lapse in time between my posts, but as I am sure everyone here knows, time can run and pass and before you know it, it’s been a month, or two…. Smokey is okay. Still on IV’s and peg feedings although we have been trying to transition to liquid food. I bought a Nutribullet, well, I charged it, and I do not like to charge anything unless I believe ... Read More »