I have to start off by telling you about my birthday! It started out with my getting a very nice email on Friday night from Leeza Gibbons wishing me a happy one. Talking about grinning from ear to ear! I was so delighted and printed it out and showed everyone.
On Saturday evening LindaPhoto called to tell me all about her attendance at the Fearless Caregiver conference. She got to meet up with Leeza and she gave me a tremendous gift of taking pictures of Leeza and herself holding up a Happy Birthday Jamie sign. (Thank goodness for digital cameras....Linda downloaded them and sent me copies to print out.)
On Sunday, the actual day, I was at work and shared the day with a very nice patient. It is so rare to run into someone who shares my birthday that I was all excited. She wasn't as thrilled because she was in the hospital for one and the fact that she is a little older than me. I do think she enjoyed herself though. I'd have to say that Leeza's energy combined with my energy helped raise the energy of all my patients!
The kitchen staff at Nashville Rehab made 2 signs, one for the patient and one for me. They had almost everyone that worked that day sign them. They also made a bunch of chocolate with Reeses Pieces cookies and brought up a box of individual serving size Orange Sherbet. I thought that was such a kind and sweet thing for them to do.
Jane, our Activities Director brought a cake and informed us that 2 days before it had been another patient's birthday so we all celebrated together. Jane gave each of us a little gift bag with goodies in it. In mine was my first pair of medical scissors, a pair of socks with a teddy bear nurse on them, and a framed picture of me and Jane in front of Mrs. Rogers 4th Grade Class bulletin board. This is a copy of the one that the class is getting.
When I came home, expecting to have to cook I got another surprise. My sons and Nick had gone to the store and they were grilling my favorite!!! Real fajitas!!! Believe me folks, it ain't what you get in the restaurants. They also had refried beans, Rotel Cheese dip, chips and tortillas. That was a super gift!!!
I'd have to say...it was a great birthday and I can't wait until next year...no anniversary...just the plain big 50 and I plan to enjoy every minute of it!!!
The Fearless Caregiver Conference
Wow! That is pretty much all I can say! What a wonderful weekend! So wonderful, where do I start?
Give Yourself A Gift For Valentines Day: Explore The Benefits Of Joining A Support Group
by Risa Levovsky
Author of Alzheimer's Tips Revealed: Successful Caregiving in the 21st Century
For many caregivers, Valentines Day may be one of those "difficult days." It is healthy to reflect upon a loved one and to remember the precious moments of years past. This process is a natural part of accepting the fact that a loved one suffers from Alzheimer's disease or another form of memory loss.
You are not alone in this journey and do not have to face day-to-day challenges on your own!
A caregiver speaks out about the benefits of joining a support group:
All of our friends tried to be supportive when my husband Jake was diagnosed with Alzheimer's disease. They call me regularly and ask how he was doing. I can only say, "He's managing as well as could be expected."
Although I appreciated their calls, I really needed to talk to people who understood what I was going through as a caregiver. I was tired of crying alone. I needed someone to ask how I was doing. My minister recommended that I attend a support group. I was hesitant but agreed to give it a try as I valued his opinion.
The Help line at the Georgia Chapter of The Alzheimer's Association provided me with a list of support groups in my area. At the first meeting, I met some wonderful people. They were sons, daughters, children, partners, husbands and wives of people with Alzheimer's disease and other forms of memory loss. I left feeling hopeful rather than hopeless when I realized that I was no longer going to suffer alone. I was amazed that there were other people in my situation who were willing to listen and offer their own remedies.
I've been going to my support group for six months. We've laughed, cried and shared our deepest emotions. This outlet has enabled me to cope with and accept this situation. I have also found an extended family. Between meetings we get together for lunch or dinner with our loved ones. We also care share, in emergency situations. The members of my support group are the only people who can really relate to the struggles I face as a caregiver. Since I no longer drive, they will come and pick me up, then drop me off after we finish our meeting.
For more information about the support groups in your area, contact The Alzheimer's Association(Link: http://www.alz.org ) at www.alz.org.
To learn more about Alzheimer's disease, please visit www.alzheimers-tips.com(Link: http://www.alzheimers-tips.com ).
Family Caregiver Internet Study Results
Below is a summary of the findings from the study you helped me complete. If you have any questions or comments about the study, please feel free to contact me. There are phone and e-mail contacts at the end of the summary. This sample wasn't large enough to determine if there were differences in certain kinds of health conditions but that is one of the things I want to look at in future studies.
Summary of Findings from the Family Caregiver Internet Experiences Study
Goals of the study were to:
A brief message about the study was posted on sites that had material or services for family caregivers. The posting included a link to the study web site. The study involved collecting data in two phases. The first phase used an online survey to collect information about the caregivers.
Seventy two caregivers completed the survey. Most of them were women (91%) and white (89%). Caregivers who filled out the survey ranged in age from 24 to 79. The average age was 50. They were caring for at least one family member. Some caregivers were caring for multiple family members. Caring for a parent/stepparent (54.2%) or spouse/partner (30.6%) were the most common relationships. Other kinds of relationships included children, grandchildren, grandparents, aunts/uncles, and so on.
The caregivers had a variety of education levels although most had at least some college. Caregivers had a range of experience using the Internet. Most were confident of their ability to find information and support online but less confident of handling technical problems such as troubleshooting Internet hardware problems. Caregivers accessed the Internet from an average of two places, usually work or home, for their caregiving needs.
There were 9 categories of tasks listed on the survey. On average, the caregivers were doing almost 6 of the 9 task categories. Managing and Monitoring their ill family member's health was the most common task (90.3%) while Managing Equipment was the least common (20.8%) task.
The second phase of the study involved telephone interviews with a smaller group of caregivers. This group was similar in terms of age, gender and education to the larger group. Fifteen caregivers were interviewed. From those interviews, several themes emerged. Caregivers usually started going online looking for information. Information about the disease, it's treatment and most often, practical information was useful to the caregivers. Practical information included information that helped them solve problems, caregiving tips, specific skills they needed, information about signs and symptoms, what to expect, and information about services (e.g. legal, insurance, placement or financial advice).
Caregivers could all describe ways they decided whether the information online was credible or not. Attribution of information, an authoritative source for the information, sites with consistently reliable content and findings they could doublecheck elsewhere were all seen as more credible. Less credible were commercial sites, or unfamiliar sites, unattributed information.
To varying degrees for the caregivers interviewed, the Internet was a place where they could find emotional and social support for them as caregivers. They could compare their own situation to others, feel it was possible to get through whatever was happening and talk with others who really understood what they were going through. Caregivers were able to connect with others all around the world who were in similar situations. Caregivers became more knowledgeable consumers and used what they found online to advocate for their ill family member (e.g. with the doctors or insurance companies).
The round the clock availability of the Internet was helpful to them. It did take time to learn to use the Internet or to find specific information they needed but the Internet could also save them time. They were able to contact people or locate information more quickly and with less effort. The amount of information could get overwhelming at times as could the emotional cost of feeling so connected with others online. Caregivers would take breaks sometimes.
In terms of web site design, caregivers wanted sites with easy navigation and clear labeling of content. Information that was categorized (e.g. by disease stage, treatment, caregiving tips, message board) was helpful. It saved time and caregivers didn't have to hunt so much for what they were looking for. Information summaries with links to the full text were valued. Links were valuable as the caregiver could chose to go deeper into a topic area but caregivers wanted links that were current and functional. Caregivers weren't interested in a lot of special effects online. That was distracting and took too much time.
Definitions of medical terms and guides to how to pronounce them helped the caregivers feel more confident when talking with medical professionals and helped them understand what they were reading.
My thanks to the sponsors of the study,
for their support. I'd also like to thank those who agreed to post the information about my study and the caregivers who participated. I hope this information proves beneficial. I will be presenting the information at a regional conference in April and have several articles planned so the information will get out to the professional community as well.
Danita Lee Ewing PhD, RN
From Rench@aol.com (Rench)
My fellow caregivers at The Gathering Place have suggested that we have the shoulder done but to wait on the colonoscopy. We are praying hard for answers and after talking to the two doctors we will try to make our decision.
Ug. So hard on them. I can't stand not answering tho. I have lost 2 nieces to colon cancer and have a hubby who has polyps removed yearly before they become cancerous. Colon cancer can be avoided if it is caught early. I would wait on just about anything but the colonoscopy, but you can see where I am coming from!
We did exactly that....Jamie
From firstname.lastname@example.org (Renaud)
re: Volume 8, Issue 2
If your newsletters are always this depressing, please take me off your mailing list. My life is depressing enough without reading this!!
From Merilop@aol.com (Merium)
you for the ribbon!!! It is so nice of you to compile it for all
of us. My mom has some sort of dementia and I take care of her
24/7. It makes me tired but she would do the same for me if she
was able.I thank God I am able to take care of her.
Hugs and Peace,