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The Ribbon - Care for Caregivers
Volume 8, Issue 3
February 7, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

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!!!

Jamie


The Fearless Caregiver Conference

Wow! That is pretty much all I can say! What a wonderful weekend! So wonderful, where do I start?

My friend, Loraine, and I attended The Fearless Caregiver Conference in Los Angeles at UCLA on January 31, 2004. What a wonderful and touching event. The morning session was a question and answer forum with four panel members from the Los Angeles area who are professionals involved with different aspects of Alzheimer's. It was so refreshing to hear Dr. Cummings, Director of the UCLA Alzheimer's Disease Center, state that he learns something each time he is with a caregiver!

Gary Barg, from Caregiver.com, host/moderator, indicated there is a new professional caregiver -- The Fearless Caregiver -- which is YOU and you are in charge of your caregiving "team!" Gary really stressed the need for the caregiver to take care of themselves. As he pointed out, if the caregiver should become ill, who will take care of the loved one?

A representative from the LA office of The Alzheimer's Association indicated they would be working more with early onset folks, incorporating activities with the caregiver. The 24 hour help line telephone number for the Alzheimer's Association was shared -- 1-800-660-1993. In addition to the Alzheimer's Association, the Department of Aging was present as another valuable resource.

It was suggested that families not rely on just one caregiver. Involve two caregivers, giving each equal power. The idea being not to let one caregiver play against the other for more control of the loved one. It was also suggested to make the family unit as involved as possible. It was stated to believe the loved one when they say something is going on with a caregiver. It was suggested to make unexpected stops at home, just as you would at a nursing home, to insure proper care. And to also inform the caregiver the neighbor will also be checking in from time to time (well, after you have involved the neighbor that is).

It was revealed that law enforcement agencies will often times have records indicating problems with nursing homes -- abuse, escape history, etc. It would be wise to check with them also when considering where to place your loved one.

It was asked where to find online support. Mr. Barg was happy to share that folks could turn to Caregiver.com and LeezasPlace.org. I quite happily informed the audience of The Gathering Place @ TheRibbon.com for online chat support, TheRibbon Online Newsletter, and TheRibbon.com website!

It was stated to also never take NO for an answer if you are not happy with an answer involving your loved one's care. Keep knocking on doors and seek the answer that will best solve your situation.

A sad revelation was made involving abuse of our loved ones. Statistics are coming to the forefront regarding patients who have been married more than once. The second or succeeding spouse/caregiver can often be the abusive party.

It was stated that health care professionals need to take care in dealing with patients, because often times they may also be a caregiver. David was a wonderful example of this. David explained that with his wife having Multiple Sclerosis, he has to point out to the health care professionals the medical alert bracelet that indicates he has Alzheimer's. David went on to say that often times medical staff, when they see he is functioning well, have a hard time processing the fact he has Alzheimer's. And in this same line, it was suggested that caregivers also get a medical alert bracelet identifying them as a caregiver. If something should happen to the caregiver; there can be a secondary number on the bracelet to alert someone to check on the person they are caring for.

Ms. Gibbons' portion of the conference was phenomenal. Her opening video, which depicted many difficult family moments during her mother's journey with Alzheimer's, was very touching, moving the audience to tears. Leeza introduced herself as a long-distance caregiver who sometimes experiences more self-doubt about her involvement in her mother's care, than family members who are involved on a day-to-day basis (something that I could really identify with). She involved the audience during her presentation, adding much laughter and humor in her discussion. I was extremely moved during a clip Leeza played of her mother. From where I was seated; I could see Leeza fighting for composure, the tears welling in her eyes, as her mother eloquently urged those newly diagnosed with Alzheimer's to share with others. The adoration on Leeza's face as she lovingly viewed the clip spoke volumes. After the conference, Ms. Gibbons took time with each and every person. I could see her genuine interest, pausing to make notes after a particular item caught her attention. I was able to spend a brief amount of time with Leeza. We discussed everything from The Forgetting, my working at the prison, The Gathering Place and TheRibbon.com, the 2003 Gathering of Friends, and so much more! What a generous, warm, and very gentle-spirited lady!

There were other stars at this conference, their light shining as bright as Ms. Gibbons'. There were wonderful caregivers all with genuine souls. During the Q/A session in the morning, Benjamin touched everyone's heart by sharing how he traveled on a bus 4.5 hours each way to see his father who was quite an escape artist from facilities. Benjamin broke down as he shared all the problems he encountered. As Benjamin spoke, the room came to an incredible silence, the audience hanging on each word. Everyone marveled at his strength and unwavering dedication. Later Benjamin beamed with pride as he showed off pictures of the two loves of his life -- his beautiful golden retriever, Ruby, and his father who proudly poses on the end of the bed when he sees a camera.

Dixie is a lady who's daughter introduced herself as the caregiver for her mother who is caring for her mother. Dixie was having problems with her sister not asking about how her mother was when the sister would call. Dixie sadly realized that family situations are never easy. Tears of pride did come to Dixie's eyes as she realized how special it was she could give this huge gift of loving care to her mother.

There was Billie who just didn't have time to read these days. Billie has given care to many in her family (all with Alzheimer's) and is now taking care of her mother. Billie bluntly stated she was tired and fearful that maybe this might be a fate of hers as well. Billie proudly shared this was her mother's first time at day care, yet she was feeling tremendously guilty for coming to the conference. Billie was quickly assured this was a huge present to herself and to her mother.

Herbert was such a prince. He sat with us at our table; surprised and touched that we held his place for him after each break. He shared that his wife has Parkinson's, diagnosed for 24 years. He quipped that this was their wedding present as his wife was diagnosed not long after they were married. It was sweet to watch his face as he talked about his wife, describing the events of her illness. It was sad to see the tears as he said dealing with the illness was one thing, but he certainly was not ready for the dementia involved with it.

Martin was a gentle man who befriended Benjamin. It was obvious they became great pals as Martin intently listened as Benjamin was receiving some advice about his father's need to go home. Martin wanted to know how he should deal with his wife who is now becoming aggressive -- pretty much verbally. You could tell by Martin's face how much it hurt to have the love of his life responding in such a manner. Martin even relented that no matter how much you steady yourself, it is not easy to go through.

My personal favorite was Diane and her cousin, Joan. Diane took the lead for her cousin asking questions on how to help her cousin's mother (who has Alzheimer's) and father (who is in extreme denial). It was sweet to see that Diane was just as affected by her aunt's illness as her cousin. It was so heart-warming to watch Diane boldly asking for help on both of their behalves. Joan joined in the conversation and many ideas were shared on how to engage mom in activities with the caregiver to help keep her mom active. But what was so cool... later I found out Joan works in Spokane at a hospital where my adopted soul twin, Mary, delivers flowers! How cool is that? Joan promised to be on the lookout for Mary and to deliver live hugs for me. Isn't that even way more cool?

Since I began this long-distance caregiving journey, I have come to know that caregivers are amazing people. The conference has only confirmed this thought. The ultimate thought gained from the conference: regardless whether you are a television personality, a long distance caregiver, a caregiver in the trenches or the patient living through the disease and giving care, each have had the feeling, at one time or another, they were in this alone with nowhere to turn. Everyone in attendance was touched by the other, whether they knew it or not. They unknowingly gathered the education and the energy to become empowered as "The Fearless Caregiver." It was an especially touching experience with many "Unforgettable" memories!

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/

Linda@theribbon.com


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
Journalist-Caregiver-Advocate For Successful Aging
www.alzheimers-tips.com

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 at www.alz.org.

To learn more about Alzheimer's disease, please visit 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:

  1. describe characteristics of family caregivers who use family caregiving Internet sites,
  2. identify purposes for which family caregivers use the Internet,
  3. identify perceived benefits and limitations of Internet use byfamily caregivers, and
  4. describe family caregivers' perceptions of the effects of Internet use on their caregiving.

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,

  • National Research Service Award T32
  • Sigma Theta Tau, Beta Psi Chapter
  • Frances DeZeeuw Memorial Scholarship Award

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.

Warmest regards,
Danita

Danita Lee Ewing PhD, RN
Assistant Professor
School of Nursing
OHSU Simulation & Clinical Learning Center
Email: ewingd@ohsu.edu
Work Phone: 503-418-1276
FAX: 503-494-9561
3181 SW Sam Jackson Park Road
Mailcode: AD100
Portland, OR 97239


Email Bag

From Rench@aol.com

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 renaudleslie@hotmail.com

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

thank 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.

May God bless you

Merium


Hugs and Peace,

Karen and Jamie

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