Two Great Sites For Sharing Info on the Condition of a Loved One
On August 31, 2009, I posted information on a website called CarePages. CarePages is a fantastic resource for:
- patients and their families to keep loved ones up to date on a patient’s progress
- loved ones to send a patient messages of encouragement
This morning, Richard Liechty, a co-worker, shared a similar site with me called CaringBridge. In recent months, he has been staying abreast on the conditions of a couple of loved ones via CaringBridge.
According to their website, Caring Bridge was started in 1997 when “founder Sona Mehring’s close friend suffered a life-threatening pregnancy. To keep family and friends informed about the critical situation, Sona and friends created a website.
Baby Brighid was born almost three months premature. With her mother in critical condition, the one-pound preemie was quickly rushed to the Newborn Intensive Care Unit at Children’s Hospital in St. Paul Minnesota. The family posted daily news about mom and Brighid on the website. An accompanying online guestbook enabled visitors to send the family messages of love and encouragement. Sadly, Brighid’s story does not have a happy ending. After a nine-day struggle against tremendous odds, she died in surgery.
The website allowed the family to convey the saddest of news without the painful burden of several emotional phone calls. The parents also had a place to post a final message to honor Brighid and their supportive online community.
Brighid’s death prompted an outpouring of loving messages to the family. They immediately understood that other patients dealing with the birth of a premature baby, childhood cancer or other critical illness would benefit from the same web resources.
And CaringBridge was born.”
A special “thank you” to Richard Liechty for sharing his experience with CaringBridge.com with me. Richard can be followed on Twitter @RichardLiechty.
iPhone App Saves Life in Haiti
On July 7, 2009, we posted an article on the benefits of the American Heart Association’s iPhone Application. At the time we knew that it was just a matter of time before we heard about it saving lives.
Well, an incredibly heartwarming story has come out of all of the heartbreak in Haiti. According to a NBC’s Today Show online article, an American Dad was working for a mission organization in Haity “making a film about the impact of poverty on the people of Haiti. He and a colleague… had just returned to the Hotel Montana in Port-au-Prince” when the earthquake hit.
The online article explains that “thanks to the iPhone first-aid app he’d downloaded, he knew how to fashion a bandage and tourniquet for his leg and to stop the bleeding from his head wound. The app also warned him not to fall asleep if he felt he was going into shock, so he set his cell phone’s alarm clock to go off every 20 minutes. And then for 65 hours, he waited for whatever fate had in store for him.”
An AdAge article today reports that the American Heart Association has reaped the benefits of this amazing story. Sales of their app have skyrocketed in recent days.
How to Plan for a Disaster with Someone Who Has Dementia
Caregivers often have their hands full with their day-to-day responsibilities. Planning for a tornado, hurricane, wildfire, earthquake, flood or other natural disaster often isn’t on the radar. Happily The Hartford has developed a 44-page guide, called The Calm Before the Storm to help a caregiver to someone with Alzheimer’s, Parkinson’s, or some other form of dementia. The document was prepared by the MIT AgeLab and The Hartford Advance 50 Team which is an in-house team at Hartford that studies issues on aging.
The brochure does a pretty thorough walk through the steps that you need to take to prepare you and your loved one for a natural disaster. The major parts include:
- The Calm Before the Storm
- When to Start Planning? Long Before Disaster Strikes!
- Start with Conversations
- Then, Take Action
- A Disaster Is Imminent – What Should You Do?
- Can You Stay – or Should You Go?
- Getting Out of Harm’s Way
- Your Time Away
- The Return Home
- Planning Makes a Difference
- Checklists
- Resource
The checklist section alone is worth the trip. Check it out.
Finding Meaning in Alzheimer’s, Parkinson’s and Memory Loss
It’s easy to get caught up in the day-to-day challenges of caregiving and lose sight of the important things in life. This is true for just about anyone, anytime, but particularly true when working through the challenges of a progressive disease like Alzheimer’s, or Parkinson’s.
Much is said about caregivers and their need for respite time away. But what if you could make your time as a caregiver more rewarding, more fulfilling…something that you looked forward to.
No one is saying that caregiving will ever be easy, but being able to look beyond the difficulties and seeing the beauty in people despite what afflicts them is exactly what Phillip Toledano and Judith Fox have done.
Phillip Toledano’s Days with My Father is an amazing site that received a lot of recognition earlier this year and will be a book by the same name that will be out June of 2010. It’s hard to look at the site and not be moved. Toledano is clearly a talented photographer and has two other gorgeous photo books in print: Phonesex and Bankrupt which remarkably wasn’t done recently, but in 2004.
I heard Judith Fox interviewed on Fresh Air the other day and was taken by her energy and compassion. Judith married her husband just three years before he was diagnosed with Alzheimer’s. 
As Fresh Air puts it, “In an attempt to remove the sense of isolation that so many feel, Fox attempted to capture images of the soul of the man she still loves.” Ultimately she was encouraged to publish a book with her photographs. There’s a five-minute video that talks about the thinking that went into the photos and the book called, I Still Do: Loving and Living With Alzheimer’s.
An Easier Way to Capture Information in Critical Appointments….
Anything that won’t sell, I don’t want to invent. Its sale is proof of utility, and utility is success. — Thomas A. Edison
I am currently singing the praises of the Livescribe Pulse Smartpen. I have been using it for a couple of weeks now. It ranks right up there with my iPhone, mino HD Flip videocamera, and TechSmith’s Morae software …. in making my life simpler; yet, significantly more productive.
This pen is a fantastic tool for any caregiver! My experience with the smartpen has been nothing short of exceptional! If you aren’t familiar with it, you really ought to take a few minutes to check it out online. You can see a full demo of its capabilities at www.livescribe.com.
Key features of the pen include but are not limited to the following:
- Capturing what is written in a Livescribe specific journal via an infrared camera
- Capturing audio via a speaker
- Allowing users to upload their notes to a desktop application via a usb cradle
- Giving users the ability to review their notes and the corresponding audio post-session
- Providing users with a friendly approach to sharing session notes (pdf) and/or the corresponding audio publicly or privately
- Providing uploading capabilities for users to share their session with their Facebook friends
Better Caregiving
Physicians’ Appointments. It allows me, with the preapproval of my Mom’s physicians (critical point), to record appointments with specialists that my mother sees for some chronic health issues. As her caretaker and legal guardian, these visits can be stressful and prior to now I was always worried that we might not have caught everything the doctor had to say – compromising her care in some way.
Radio Programs. At lunch today, I heard a great program on Sirius radio about happiness. I took notes in my Livescribe notebook and was then able to load the audio onto my computer when I returned to the office so that I can hear the program again, at a later time. I would love to share it with my Mom later to help her when she struggles with the frustrations of her compromised health.
Misc. I am hoping to also use it for: recording meetings with her attorneys, assisted living caregivers, physical therapists, etc. For more details on how I have used the pen in my work life, visit my blog post at www.threeminds.com.
So far, my only regret is that I didn’t purchase the 4GB version.
I can’t wait to see what they come up with for future versions….
Notes: I would like to send a special “thanks” to David Berney who familiarized me with the Smartpen at Forrester’s Consumer Forum. You can follow him on Twitter @dberney.
To protect the privacy of others I get preapproval of anyone that might be heard on the audio prior to beginning any taping session.
The Benefits of a Transport Chair
When my mother first began to need a wheelchair, I was more than a little frustrated! Prior to being released from the nursing home, she was issued a standard medicare funded wheelchair.
Once I got her into my car (not an easy task), I took the wheelchair around to the back of my car and tried to put the chair into the trunk of my car. That’s when things got really rough!
- I had a difficult time lifting the chair high enough to get it into the trunk (It weighs a ton!).
- Once I did get it into the trunk, I struggled to maneuver it around in the trunk so that I could get the lid of the trunk closed.
Not long after this “incident,” I learned about transport chairs. I ran out and purchased one a.s.a.p. and it has been a lifesaver!!
The many benefits of the transport chair far outweigh the cons. Some of the many benefits are as follows:
- The chair is fairly lightweight. I am only 5′2″ and weigh about 120 pounds. I find the chair easy to maneuver and easy to lift. They are under 25 pounds.
- It fits in the trunk of my car (Chrysler Sebring) without any problems. An elderly couple I met awhile back said that they keep theirs on the floor of the back seat of their Chevrolet Cavalier.
- They come in some nice colors – - more than just the “chrome” of standard wheelchairs.
- They are fairly comfortable. I have not sat in my Mom’s for an extended period of time but she has said that it isn’t bad.
As is the case with most everything, there are a few downsides to these chairs.
- Medicare does not cover the cost of transport chairs. They see them as a benefit for the caregiver, not the patient. I beg to differ….. Regardless, I found the approximately $100 pricetag well worth the money.
- Because the wheels are considerably smaller than those of a standard wheelchair, the patient is unable to move themselves around in the chair. Users will need the help of a responsible adult to push them in the chair.
- The wheels on these chairs are not as tough as those on standard wheelchairs. Wheels on transport chairs wear out more quickly if they are used daily and/or on uneven surfaces such, as gravel.
Please keep in mind, these chairs are meant for short trips. They are not meant to replace the use of a standard wheelchair.
I purchased my Mom’s from a local medical supply company. However, they are available online at Amazon.
A Tree of Her Own: Hints for Assisted Living
krisdecurtis on Flickr
My mother has been in assisted living for the past few years. Keeping her place homey and safe without appearing cluttered has been a challenge.
The facility she lives in is beautiful and they do a lovely job decorating for the holidays. However, it just wouldn’t be Christmas for my Mom if she didn’t have her own tree. Over her lifetime, she put a great deal of care into collecting Christmas ornaments that meant something to her and to our family. She purchased ornaments on vacations. She purchased ornaments that represented our favorite things: sailboats, skiing, ice skating, lighthouses, dogs, etc. She saved ornaments that had adorned the trees of my grandparents. She even saved the silly ornaments I made with coffee can tops and sequins in kindergarten.
So, simply enjoying the tree in the lobby of her assisted living facility was not an option. I decided that I would decorate her room myself and then store the decorations in my home to keep her place from becoming too cluttered the rest of the year.
Decorating in her room has become much easier with my now fine-tuned, well-organized approach. I have purchased decorations that are easy to store at my home and are easy to transport to/from my Mom’s place.
Here are a few utilitarian and beautiful items that have made Christmas decorating a breeze! There are frequently some great cost-savings by purchasing holidays items “off-season.”
Four Foot Pre-lit Christmas Tree: I chose a four foot artificial tree. It is a large enough tree for her to display her favorite ornaments. It is small enough that it doesn’t take up all that much space in her room. It is also small enough that it fits inside the trunk of my car without a struggle. Purchasing the pre-lit version kept me from having to struggle with detangling lights each year.
Snapware Three-tier Christmas ornament boxes: The three-tiered Snapware boxes are great because they allow me to transport her ornaments in just a couple of boxes. The fewer trips to/from the car the better! The boxes have sturdy handles on the top that make them easy to carry, even when wearing my mittens. The clear plastic makes it easy for me to determine which boxes were my Mom’s and which ones were mine in my basement.
Bubble Wrap: I take a fresh roll of bubble wrap with me when I pack the ornaments up each year. It ensures that I am using wrap that is in good condition to prevent the ornaments from breaking in transport to/from my home.
Packaging Tape: Clear packaging tape is great for securing bubble wrap around fragile ornaments. It stays well secured all year long. You might even want to label the ornament under the clear tape if you want to be able to identify ornaments before unwrapping them.
Artificial Christmas Tree bag: The box that the tree came in eventually ripped making it difficult to close and to transport. The Christmas tree bag made transporting the tree much easier. It also keeps it clean throughout the year.
Extension Cord: You may need an extension cord if there isn’t an electrical outlet close to where the tree will be placed.
Live Wreath. Over the past few years, I have purchased live evergreen wreaths from the boy scouts for my Mom. It has scented her room with the smell of evergreen without the mess and challenge of bringing a live tree into her space.
Here is a list of links to where you can purchase the recommendations found above:
Note: the links take you to Amazon. I cannot guarantee that the suppliers who are now selling the products on Amazon are those that I purchased from.
Medicare 101
For our local followers, the Community House of Birmingham, Michigan is offering a complimentary presentation on the ins and outs of Medicare at 9:30 a.m. on Tuesday, October 27th.
Below you will find the official course overview…..
Are the changes in Medicare causing you confusion? Are you navigating through the Medicare process or are you helping a parent or loved one navigate through the process? Do you have questions and need answers? If you can answer yes to any of these questions, or if you just want to be reassured that you are making the right choices when it comes to Medicare, please join us for an informative meeting about the rule changes for Medicare. Learn from unbiased industry experts how to match your health care needs with the appropriate insurance provider.
Presenters are Ruth LoPrete, The Area Agency on Aging 1B and Steve Hornacek, The Benefits Group.
RSVP requested, 248-644-5832. To enroll online click here.
How to Lend a Hand at Halloween
Boo! Halloween is just around the corner.
- If your favorite senior is no longer driving, volunteer to purchase candy for him/her to distribute to children who come to the door on Halloween night.
- If the senior is still in their own home, volunteer to distribute the candy. Many seniors find it difficult to get to the door quickly and also find bending down to distribute candy challenging.
- Help the senior “Trick-or-Treat” proof their home (e.g., make sure objects that children could trip over are picked up and/or well marked, make sure all outdoor lighting is working, etc.)
- Place a reminder call on Halloween afternoon to seniors who may have forgotten about the impending arrival of trick-or-treaters at their door.
- Invite the senior to your home if s/he is not living in their own home. They might enjoy seeing all of the little ghosts and goblins arriving at your door.
Influenza Shots: A Must for Seniors
It is that time of year again. Yep, cold and flu season. Which means, it is also time for you to get your annual flu shot.
According to the Centers for Disease Control and Prevention in an online article entitled, Immunizations for Adults, “the most common causes of death, pneumonia and influenza remain among the top ten causes of death for older adults. In 2000, pneumonia and influenza were responsible for 3.3% or 58,557 deaths among people 65 years of age and older.”
According to NBC’s Today Show, “The single best way to protect yourself and your loved ones against the flu is to get vaccinated.” The online report also explains that, “more than 110 million doses of vaccine against regular winter flu are expected this year, according to a new estimate from the Centers for Disease Control and Prevention.”
People who fall into the following groups should ensure they are vaccinated:
- Adults 50 and older.
- All children ages 6 months to 18 years.
- Pregnant women.
- People of any age with chronic health problems like asthma, heart disease or a weakened immune system.
- Health workers.
- Caregivers of the high-risk
The CDC online article, also explains, that “among person [sic] aged 65 years and older, influenza vaccination levels have increased from 33% in 1989 to 66% in 1999, surpassing the Healthy People 2000 goal of 60%. “