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Journals and Blogs

Use this Journal (also called a Blog) to share your ongoing caregiving stories and updates with others. Your online journal or blog will help readers benefit from your experiences and life lessons. Tell us about your challenges, your insights, the tears, and the special moments.


It's easy. Just click on the "Create My Blog" button on the right, and the website will guide you through the process.

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Most Recent Blog Entries
Title of Entry: Today is Chemo so it must be Monday
A New Life Adventure
By Shamar on 6/30/2008 8:35 AM
Every other week I drive Bob to the cancer center for treatment. Everyone is pleasant and happy, except of course the patients that are throwing up. Sometimes I feel like I'm in the twlight zone with IV's, bald people, nausea and everyone walking very slowly. Four months ago Bob was fine now he is in stage four colon cancer. That's a big jump in a very short time.
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Title of Entry: One more thing to do
A New Life Adventure
By Shamar on 6/28/2008 8:42 PM
Friends think I need a support group to deal with this situation. I know I'm doing fine. They want me to make it better and be the leader on how to deal with cancer, but I'm in the middle and just treading water. This isn't a happy time and I can't make it happy and wonderful for anyone. Sometimes I'm angry, sad or just want to be alone. I know that is ok and part of the process, but the additional pressure from well wishers is trying and now I am making an effort in an already full day to appease their demands.
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Title of Entry: Continued Stability for Mom
Caring for my Mom Yvonne
By Roger de Lusignan on 6/26/2008 8:13 AM
Continued Stability for Mom
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Title of Entry: Care Blog
Care Blog
By manikandan on 6/19/2008 10:19 PM
Care Blog
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Title of Entry: Beautiful, Raw, Real-life Stories
CARE TALK
By Community Manager on 6/10/2008 7:19 AM

I want to recommend a fantastic book about caregiving called An Uncertain Inheritance, a collection of personal essays, edited by Nell Casey. It’s not a how-to book or filled with many straight-forward tips. But this collection offers great solace and guidance to anyone who has ever cared for a sick or disabled loved one.

Eleanor Cooney writes about caring for a formerly “hip” mother with Alzheimer’s. She tells us how she clung to “optimistic visions” – ordering special brain nutrients off the internet, and dutifully laying out vitamins – while her mother declined in painful incremental ways.  

The self-proclaimed “baby of the family,” Anne Landsman, writes about a ...
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Title of Entry: Altars and Rituals
CARE TALK
By Community Manager on 5/27/2008 11:10 AM

Thank you everyone who responded to my question about what to say and not say to a grieving friend. Your advice was extremely helpful—especially the reminder to be real and just be yourself. Please continue to add your comments and advice to that entry.

Before I move onto other caregiving topics, I wanted to hear your thoughts about creating grief rituals and altars.
 
I recently visited Four Seasons Oasis—an unusual store in Seattle that focuses solely on grief, illness, loss, and transition. The owners are particularly interested in supporting caregivers through the many stages of a loved one’s life-threatening illness. Here’s their website: http://www.fourseasonsoasis.com.

Their “oasis” is indeed a sanctuary—filled with soft lights, lots of cushioned places to sit, flickering ...
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Title of Entry: A Grieving Friend. What to Say? What Not to Say?
CARE TALK
By Community Manager on 4/28/2008 5:16 PM
I would like to hear from the community about this. I recently had a friend over for dinner whose husband died a few months ago. Before she arrived I felt nervous; uncertain about whether to mention her husband, his death, and how much I missed him. I wondered if there were things I should say or not say.
 
This stuck me as ironic. I am the Community Manager of a website that directly discusses illness and death, and yet there I was feeling uncertain about directly discussing death in a personal situation. Of course once my friend came over I realized that I could mention her husband and ask her how she was doing. She didn’t have to divulge more than she wanted, and she seemed relieved that I asked.
 
Even so, I still had moments when I felt awkward and inadequate during the course of the evening. I kept forgetting that I ...
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Title of Entry: Peace of Mind - Advance Planning
CARE TALK
By Community Manager on 3/7/2008 10:31 AM
 
 
I was excited to read about the launch of a new campaign The National Healthcare Decisions Day (NHDD) on April 16, 2008.
  
As hard as it is to get started on advance planning, it’s better for everyone’s peace of mind (caregivers as well as the people they are caring for) if you talk about quality of life values, healthcare wishes, funeral planning, and prepare the necessary legal documents.
 
Most of us know how important this is, but few of us have exercised our legal right to advance planning. According to the Pew Research Center’s study i ...
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Title of Entry: How We Can Help
CARE TALK
By Community Manager on 3/4/2008 9:21 AM
 
Welcome to CareCommunity.
 
When we began to build this website, one of the first things we did was meet with caregivers. We wanted to know your needs, your feelings, your concerns, so we could figure out the best way to alleviate your stress. We also researched studies and spoke with experts on family caregiving.
 
Here are some of the things we discovered.
 
  • Caregivers' stress level goes down when they learn how to do a better job as caregivers. Let’s face it—many caregivers are unprepared for all the responsibilities and specific duties of caregiving. Suddenly you are administering a complicated schedule of daily medications, or learning to lift a fragile loved one out of wheelchair, or awkwardly fu ...
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Title of Entry: A new year
Caring for my Mom Yvonne
By Roger de Lusignan on 2/10/2008 9:03 AM
Hard to believe it is already 2008.   In January the 1st year anniversary of my Dad's death occurred.  They say that the 1st year is always the hardest.   I thought I had finished grieving, but Christmas was hard.  We were setting up the tree and I pulled out a box with writing in my Dad's hand and it just brought an unexpected wave of great sadness.
 
I organized a dinner on the anniversary of his death for my mom to get out of her care home and my cousins and aunt to come for dinner.  Unfortunately in was not meant to be.  My aunt was sick, my mom was sick and I was sick.  I hope to reschedule soon.
 
My mom still continues to battle periodic infections, she had to have an IV in January and now she is back on orals due to a recurring UTI.
 
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© Copyright 2008 Enclara Health, LLC
This project was supported by grant number 5R44CA097592-03 from NIH (National Cancer Institute). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH (National Cancer Institute).