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Tag Archives: difficult decisions

Decisions, Part 2

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(Editor’s Note: You can view Decisions, Part 1 here ( I always knew that I wanted to get married and have children someday. However, now there was the very real possibility that I would someday be responsible for my disabled brother, and did I want to bring innocent children and a husband in to that picture? Could I adequately give everyone the attention they deserved? Was that arrangement fair to them? I first focused solely ... Read More »

Decisions, Part 1


In the months after Dave’s accident, as he went from an ICU to eventually a skilled nursing facility all the while lying in a persistent vegetative state, it became clear that there wasn’t going to be a miracle recovery. We slowly began to realize and accept that the Dave we knew and loved from before was gone. He was never coming back. We had to learn to live with our new reality of caring for ... Read More »

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 »

Changing Medication: At What Cost?


Every now and then Robert’s neurologist wants to try a new medication. Robert is on a litany of drugs right now yet his seizures remain uncontrolled. Over the past few months, Robert’s seizures have been coming in clusters and have been more frequent.  I have not been a fan of changing his medications even though his seizures are uncontrolled. That may sound terrible and irresponsible but medication changes have caused horrific problems for him in ... Read More »

Tell Us: When Have You Deferred on a Doctor’s Recommendation?


Recently, during one of our member chats, we discussed a doctor’s recommendation that you knew was not right for your caree. You may have understood the reason for the doctor’s recommendation and you knew you had a better solution. Which leads to quandary: Follow the doctor’s advice or follow your gut. So, I’m curious: When has a doctor made a recommendation that you knew wouldn’t work but you followed anyway? Or, when did a doctor ... Read More »

Guidelines Help with Difficult Medical Decisions


I often talk with family caregivers about difficult decisions they face as their family member declines because of a chronic illness or disability. A physician or medical team presents the family caregiver and other family members with treatment recommendations, leaving the family caregiver to wonder: “How in the world do I know which option is the right option?” Now, family caregivers have a go-to resource which offers insights about the appropriateness of treatments and tests: ... Read More »

Hot Topics: When the Doctor Drops Your Caree as a Patient


Denise asked this question to Richard (@kreisler) and myself after my daughter’s cardiologist dropped her as his patient.  It was a great discussion and I appreciate Denise using this as a topic. Click on the player below to listen to the show and as always leave your comments below. Hugs:o) Jane ~ The Roving Reporter Check Out Caregiving Podcasts at Blog Talk Radio with Denise Brown on BlogTalkRadio Related articles Dating During Caregiving… ( Your ... Read More »

Why Did You Put Me Here?


Amy cared her mom, Edith, at home until, well, her life fell apart. First, Amy lost her job. Then, she lost her home to foreclosure. She knew she could live temporarily with a friend. Obviously, her mom, with her care needs, couldn’t move in with Amy’s friend. So, Amy and Edith looked at skilled nursing facilities together and selected one they both felt could meet Edith’s needs. To say it’s been a difficult transition would ... Read More »

Mom and Her Secret

Mom in DisneyLand

I received a call from my Aunt Susie on Saturday regarding my mom and some medical issues she is having and has yet to tell me or my brothers about. In the past she had both knees replaced. The right one was replaced twice because she did a lot of damage to it when she twisted it stepping up onto a curb six months after the first replacement. We know that over the past 18 ... Read More »

Can We Discuss Something?


I am getting more brave about negotiating the health issue discussions with my grandma, Elly. Up until now, we just chat about the basics, sleeping, blood pressure, headache or back ache. She doesn’t really want to share anything and there is background to that. Elly’s mother was a “hypochondriac” – according to Elly, the oldest child. My great-grandmother went to the doctor and got pills and then more pills. This has been told to me ... 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 »

World Alzheimer’s Month 2013


I wrote a letter to the editor of our community paper about World Alzheimer’s Month. They published it Friday. Here it is for you to read. September is World Alzheimer’s Month, making this a good time to talk about the stigma of Alzheimer’s and all dementias. First, to clarify, according to the 2012 World Alzheimer Report 2012, “Dementia is a syndrome that can be caused by a number of progressive illnesses that affect memory, thinking, ... Read More »

Seven Ways to Manage Stress


During one of her appearances on Your Caregiving Journey, Dr. Elizabeth Lombardo, author of A Happy You, Your Ultimate Prescription for Happiness, explained that, when we reach a level of stress that’s too high, we can’t think straight. Picture rating your stress along a scale of 1 to 10, with a 10 being the highest stress level. When you hit a 7 or higher on the scale, you reach irrational thinking. Think about it. Remember ... Read More »

Ask Denise: What About My Sister?


(Editor’s Note: As you know, we celebrated the 17th birthday of earlier this month. In looking back at how the website has changed over the years, I uncovered many past Ask Denise columns. I’ll re-run these columns regularly as I think you’ll enjoy them. This column originally appeared on on April 3, 2000.) Dear Denise, My Mom (74 years old) has had M.S. for many years. For the last 20 years or so ... Read More »

Tell Us: Do You Make Controversial Decisions?


I retweeted an article today published a few days ago on Huffington Post. The article’s headline grabbed me: “The 5 Most Controversial Decisions Alzheimer’s Caregivers Will Ever Face.” The author, Marie Marley, lists these decisions as controversial: 1. Should your caree stop driving? 2. Should your caree be placed in a long-term care facility? 3. Is it okay to stop visiting when your caree no longer recognizes you? 4. Is it okay to divorce your ... Read More »

“The More I Think About This…


…the more I think I should just stay here,” Lois tells her wide-eyed daughter, Mary. Mary wants to scream. Instead, she gets up and walks into the kitchen, praying for patience. Lois is scheduled to move into an assisted living facility in a week. It’s taken Mary almost two years to get her mom to this day in time–almost there. Two years ago, a midnight fall resulted in a broken ankle. Lois went from hospital ... Read More »

A Promise that Can’t Break


My mom has already said, “My daughter will care for me. I won’t be in a nursing home.” And, certainly, my goal would be to keep my parents home (in theirs or mine) for the remainder of their lives. I don’t have a magic ball, though. So, my intent today can’t determine my decisions of tomorrow. Care at home could become too much—because of its intensity, its costs or its requirements. It could become impossible ... Read More »

How Do You Know When It’s Time?

Beth began caring for her mom in 2002, after mother’s stroke. Over the years, a few family members regularly warned Beth that she must be careful the situation doesn’t become too much for her, her husband and their three children. The warnings created huge worries for Beth. How do I know when it’s too much for me?, she asked me. How do I know when it’s time for my mom to go to a nursing ... Read More »

Tackling the Driving Dilemma


Several years ago, I attended a conference sponsored by a local university which researches Alzheimer’s disease. The conference included a panel discussion with individuals diagnosed with early-onset Alzheimer’s disease. The panelists answered questions about their disease process, their day and their perspectives. I still remember one particular panelist. She spoke about her family’s support and then said, “There’s that situation with the car. They won’t let me drive.” She talked about leaving her job and ... Read More »

Dead or Alive


As an observant Jew, life is most precious. Even Jewish laws are allowed to be broken  if it has the potential to save a life. So as one who struggles with depression and with the caregiving of my Dad, I often ponder about the quality of life. My dad wants to die. He has openly expressed that and repeats it often. He makes his choices on how to live his life and I can understand ... Read More »

Video Chat: Worried About End-of-Life Decisions


Our weekly video chat takes place today at 3 p.m. ET (2 p.m. CT, Noon PT). Today, we’re talking with four family caregivers about their worries around end-of-life decisions they may have to make on behalf of their carees. Joining me today will be four members: –@jbones1961, who cares for her daughter, Nicole; –@kreisler, who cares for his mom and brother-in-law; –@thpurplejacket, who cares for his partner. During the discussion, we mention a list ... Read More »