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The Ribbon - Care for Caregivers
Volume 8, Issue 14
December 9, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

As I write to you tonight I am grieving. This is the first year that "Mama's Christmas" will be held in GA again. We, the siblings, have been carrying on the tradition but it has been up here at my house. Tomorrow I go back to GA and it has me thinking so much of going to see Mama for Christmas. It's times like this that I miss her so much. It has me thinking of my grandparents and especially of Nick. I'm wondering how many more will he know? It is all breaking my heart tonight.

I know some of this has been brought on by normal grief but I've also been stressed to the max and suffering from depression also. Nick has been in the hospital a couple of times. He was very depressed and suicidal..he had a loaded pistol and wouldn't tell us where it was. His kidneys aren't doing so well because of his diabetes. The meds he is on for the diabetes also do a number on his kidneys...it's a vicious circle. Now he's off the meds but his sugar is going way up. I guess he will be going on insulin and that's not going to be easy for him to handle.

My son James proposed to his girlfriend and they've set a wedding date of April 30th. Now I know these two really love each other but he is only 20 and she is 18. I feel they are way too young to get married but my son told me that he wants to marry Melinda while his dad still knows what is going on. I can't argue that point too much but it just breaks my heart. James has quit his job to be here and care for his dad so that I can work since I make more money than he does. I love him for doing it but he is just so young to have to do this. He and Melinda have discussed all this and they will be living with us and she will continue working while he is at home. I am so angry at Dementia that all this has to be on two such loving people. I want a cure found NOW!!!!

I'm sorry I sound so down...I do still try to stay positive and look for a blessing each day but y'all know, my life is an open book with you and I just have to tell you how I'm feeling.

Hugs,

Jamie


The articles here are repeats but are very much a needed reminder each holiday!


New Holiday Shopping Ideas

Visit TheRibbon.com Caregiver's Store to see a whole new line of products and designs. We now feature The Ribbon, Gathering Place and Recipe Corner logos, as well as other caregiving designs. Choose a patriotic design, or maybe something warm-hearted, or whimsical! A great way to remind someone how special caregivers are. A small percentage of the sales go to TheRibbon.com to help defray costs of running the website and publishing our newsletter.

Let us know what you think of the new store. All designs were submitted by Ribbon readers. If you have an idea for a new slogan or design, please send it to designs@theribbon.com.

Are you doing any shopping online? If so, please use this link to get to Amazon.com, then do your shopping as usual. Again, a small percentage of the sales will go to TheRibbon.com, without increasing your purchase price. TheRibbon.com staff appreciates your support!


Prepping for the Holidays

For most families, holidays are filled with opportunities for togetherness, sharing, laughter and memories. But for families coping with Alzheimer's disease, holidays also can be filled with stress, disappointment and sadness.

One of the first things you should do is to realize that the holidays may not be the same as in the past and adjust your expectations accordingly. No one, including yourself, should expect you to maintain every family tradition or event. Give yourself permission to do only what you can reasonably manage. If you've always invited fifteen people to your home for a seven-course dinner, consider inviting five people for a more simple meal. Ask others to bring "potluck" dishes or host the meal at their home. Those close to you and your loved one may welcome this opportunity to help.

To avoid unpleasant surprises or hurt feelings, you may want to discuss holiday celebrations with relatives and close friends ahead of time. Make sure that all family members understand the situation and have realistic expectations for their visit. You may wish to familiarize them with the situation in advance by calling or sending a letter that makes these points:

"While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive. Because Mom sometimes has problems remembering and thinking clearly, her behavior is a little unpredictable. Please understand that she may repeat conversations and may not remember who you are or confuse you with someone else. Please don't feel offended by this. She appreciates your company and so do I."

Enjoy the moments when meaningful communication and interaction occur, however short and infrequent they may be. If your loved one can engage in conversation with a grandchild for only two minutes, treasure those two minutes rather than measuring it against the entire four-hour holiday gathering. Involve the person with Alzheimer's disease throughout all stages of holiday preparation. Pick manageable activities: wrapping gifts, setting the table, or preparing simple foods such as appetizers. Avoid more complicated and potentially frightening activities such as lighting a menorah or hanging blinking lights.

"A holiday is still a holiday whether it is celebrated with your loved one at home or in a residential care facility," says Anna Ortigara, vice president of program development for Life Services Network which operates residential care facilities. "The most important thing is to spend time together, enjoying the moment for what it is."

Families should carefully evaluate whether persons with Alzheimer's disease should spend the holiday in their usual environment or elsewhere. Some people do not deal with change very well, and spending the holiday away from home or their facility may not be pleasurable for them. If the person with Alzheimer's disease must stay at a residential care facility, think of ways to celebrate the holiday together. Visiting a loved one in a residential care facility can be a wonderful experience for everyone. Bring a favorite holiday food or sing holiday songs with other residents to make the day comfortable and special.

Other ways you can make the holidays enjoyable:

Maintain your loved one's normal routine as much as possible in order to limit disruption and confusion. For example, if the person goes on a daily walk try to continue that practice even on the holiday. Build on past traditions and memories and experiment with new holiday traditions such as renting seasonal videos that the less active person may enjoy. Sign your loved one's name to some of the presents you give. This will help the person contribute to the holiday celebration. During the holiday gathering be alert for signs of agitation and frustration in your loved one. Do not seat him or her in the middle of a noisy room as it may result in over-stimulation and agitation. Give yourself a gift:

Caregiving is a labor of love. Those who provide care to others often overlook their own needs believing that they must take a backseat to their loved ones. They can grow depressed, lonely, and frustrated particularly around the holidays. Do you get enough exercise, watch your own nutrition, or get enough sleep? You will be a better, stronger caregiver if you don't neglect your own needs. When friends or family members ask you what you want for a gift suggest a gift certificate for a local restaurant, dry cleaner, laundromat, or cleaning service. If you don't receive what you'd like for the holidays, treat yourself to whatever you'd like.

Ask for help and support. Develop a list of tasks that need to be done so that when someone asks, "What can I do to help?" you can respond with a specific idea. Close friends and family will appreciate the opportunity to help you in this difficult situation.

Adapted from The Alzheimer's Association Newsletter Advances, Vol. 20 No.4 Winter 2001

Intergenerations: Prepping for the Holidays


Enhancing Life For the Older Adult with Alzheimer's Disease or Other Dementias

Some Gift Ideas

by Stephanie Zeman RN MSN

Most people with AD are fairly mobile and able to participate in some kind of activity for at least a few years. Gifts which promote activities have the potential to improve the person's quality of life, provided that are carefully selected to match the functional level of the person with AD.

The following suggestion have been divided into gifts for early stage dementia, the moderately impaired, and the severely impaired. These are only a handful of ideas from which to choose.

Early Alzheimer's and Related Dementia

Most individuals at this stage are: able to communicate fairly well, quite active and need to be engaged in some activity 60% of the day. They are aware of their condition and struggle to remain independent. Gifts that enhance independence or encourage activity are excellent choices.

Games: Simple, but familiar games, such as dominos, large numbered cards, an invitation to a Bingo game (be prepared to watch over your guest's card). Low priced items, but they have potential for quite a bit of enjoyment.

Tickets to a concert, musical, circus. Ball games can also be excellent choices. Any event without a plot to follow is a good choice. For safety either take the person or send along a companion

Taxi charge account for transportation to visit friends (coordinate plans on both sides of the trip). This gives the person a sense of freedom and independence when they can no longer drive.

Old family photographs highlighting the major events in the person's life. Useful and enjoyable throughout the course of dementia.

Fruit basket or flowers are always a welcome gift.

For the Moderately Impaired

Persons with moderate stage AD will have some difficulty communicating, will need help dressing, and be unable to manage most daily activities without supervision or help. Wandering is often seen in this group. Exercise is important but attention spans varies so activities are best limited to fifteen minutes.

Simple to manage clothing. Tube socks are easy to put on correctly. Shoes are available with Velcro closures since shoelaces can be a problem. Jumpsuits with back closures for those with incontinence problems are very good choices.

Materials to sort. Sorting is an activity that most people with AD can enjoy. Try pennies and penny folders, a bag of buttons, or large beads.

Music. Especially the old songs often can bring back wonderful memories. Try to locate stores that have remakes of old albums. Also religious music or music of their country of birth can bring great pleasure.

Tape Church or religious services. Many people with dementia can no longer attend religious services. This can bring a great source of comfort.

Short car trips. See Christmas lights, flowers, seasonal changes.

The Severely Impaired

At this level the person has almost no understanding of the spoken word and is unable to speak coherently. Attention span is very short. In this stage of the disease people do not have the capacity to deal with anything but the simplest of tasks. Often times their long term memory takes them into the back and they may believe they are living in the home or community of their younger years.

Photo albums, family pictures, memory books. A gather of pictures from the persons past can help if any memory is still intact.

Pet visits. Most people with late dementia still enjoy the visits of dogs, cats, and other small animal.

Recordings of old music.

Cuddle animals or even a lifelike cuddly baby doll.

Video tapes with pleasant sights such as garden, fish tanks and sounds can be soothing.

Hand/body lotions: Most people with late stage Ad still derive comfort from touch. Try giving a hand or body massage. ( Do not massage legs, as blood clots can form in this population.

These are just a few ideas that may bring pleasure to those with AD during the holidays and on special occasions.


Stephanie Zeman has a Masters in Nursing, specializing in long term care and gerontology in since 1961. She has developed Geriatric Education Resources in 1987 to provide educational workshops consultations and support for family caregivers. This article in an excerpt from her book: Gift Givers Guide. For more information about this guide she can be reached at Geriatric Resources PO Box 7144 Fairfax Station 22039-7144


Holiday Gift Ideas!

For Patients and Caregivers

For the Patient

  • Hugs, hugs, hugs
  • Clothing -- velcro-closing sneakers, sweats, slacks with elastic waist, shirts that open in front or back, clothing with large zipper pulls
  • Memory aids -- wipe-off message board with pen, bulletin board, calendar, large clock, frame with labeled photos, scrapbook or album of life memories and achievements
  • Music -- favorite cassette or CD, music box, live entertainment at nursing home
  • Short visits
  • Books with large pictures and few words, poetry, story books
  • Soft pillows or stuffed animals
  • Fresh fruit, such as bananas
  • Soft lighting -- dimmer switch, night lights
  • Adaptive equipment for the home -- hand-held shower, tub rails, locks/door alarm, child-proof doorknobs, curtains for mirrors or reflective surfaces, safety knobs for stove
  • Scents -- hand lotion, linen spray, soap, shower gel, bubble bath
  • Grooming items
  • Gift certificates -- manicure, pedicure, dentist, beauty shop
  • Short car trip
  • Games -- large piece jigsaw puzzles, word or number games, games with Bible themes, bingo games with pictures, matching memory games
  • Birdfeeder or aquarium
  • Flowers
  • Safe Return bracelet

For the Caregiver

  • Hugs, hugs, hugs
  • The gift of listening
  • Time! Anything to give the caregiver time
  • Shopping spree
  • Ticket to a show (respite care offered)
  • Gift certificates -- spa, restaurant, clothing store, movie theatre
  • Walk in the park or recreational activity
  • Selection of cards and stamped envelopes
  • Fish bowl full of "favor coupons" to draw from -- wash car, vacuum, grocery shopping, laundry
  • Care package with necessities -- paper towels, dish soap, laundry detergent, toothpaste, etc.
  • Relaxation tapes, quiet music
  • Ready-made meal -- frozen casserole or hot dish
  • Offer to drive to appointments
  • Safe Return registration
  • Respite care -- stay with the person with Alzheimer's, give a check or certificate for overnight respite, arrange for respite care for the caregiver, inquire about respite reimbursement with the Mid-Missouri Chapter
  • Order a free Caregiver Gift Pack from the Mid-Missouri Chapter -- contains a newsletter subscription, caregiver card, 24- hour Help Line numbers, a variety of informational brochures, lending library resource list, Safe Return application, respite reimbursement information, support group list and Internet resources.

People with Dementia and their Caregivers Need Special Consideration During Holidays

For most families, holidays are filled with opportunities for togetherness, sharing, laughter, and memories. Holidays can also be filled with stress, disappointment and sadness. If you know someone with Alzheimer's or another form of dementia, you should consider the following:

  1. Adjust expectations and make sure everyone understands the situation.  Caregivers can send a short letter before visits begin.
  2. Consider keeping celebrations to a small number of people for a short amount of time.
  3. Primary caregivers should give themselves permission to do only what they can reasonably manage.
  4. For the person with Alzheimer's, maintain the person's normal daily routine so that the living situation is not disrupted or confusing.
  5. Use past traditions and memories to make an enjoyable experience for the person with Alzheimer's.
  6. Encourage useful gifts and discourage difficult or unsafe gifts.
  7. The primary caregiver should not neglect their own needs and other family members can encourage them to do so.
  8. Above all, be flexible.

For more helpful information about the Holidays, Alzheimer's disease, dementia, or caregiving, go to AlzMidSouth.org or call the Alzheimer's Association at 1.866.463.6423 toll free.


A New Study

A NEW STUDY TO TRACT ALZHEIMER'S (Source: NIH/National Institute on Aging) The National Institute on Aging (NIA) with other Federal agencies, private companies and organizations launched the Alzheimer's Disease Neuroimaging Initiative.

The $60 million, five year study will test the effectiveness of serial magnetic resonance imaging (MRI) positron emission tomography (PET) other biological markers, and clinical and neuropsychological assessment to measure the progression of mild cognitive impairment (MCI) and early Alzheimer's Disease (AD).

The study will take place at approximately 50 sites across the United States and Canada. In April, 2005 investigators will start recruiting about 800 adults, 55 to 90 years of age, to take part in the research. Approximately 200 cognitively normal older individuals to be followed for 3 years, 400 with MCI to be followed for three years, 200 with early Alzheimer's disease will be followed for two years.

The study will not begin until Spring, 2005. People interested can contact NIA's Alzheimer's Disease Education and Referral (ADEAR) center at 1-800-438-4380 for additional information. For full story go to EurekAlert.org (Source agelessd@aol.com)


Book for Alzheimer's Caregivers Wins Royal Palm Award During National Alzheimer's Disease Awareness Month

ST PETERSBURG, FL - President Bush proclaimed November as National Alzheimer's Disease Awareness Month on November 4, 2004. Two days later, author Karen Favo Walsh increased awareness when ALZHEIMER'S STORIES. A CAREGIVERS GUIDE TO MISMATCHED OUTFITS, GOOFY HAIR AND BEER FOR BREAKFAST won first place for adult nonfiction in the Florida Writers Association (FWA) book competition.

"The timing is perfect," Walsh said, "this can bring attention to the 4.5 million Americans who suffer from Alzheimer's. Many people don't understand the disease or how it affects families, friends and caregivers. Awarenessis vital for better care and a cure."

ALZHEIMER'S STORIES is an honest, intimate depiction of the reality of Alzheimer's. The book describes Walsh's experience as caregiver to her mother-in-law.

The Royal Palm Awards were announced at the annual FWA conference in Altamonte Springs on November 6, 2004. Teachers and professors from Florida Community College of Jacksonville judged entries on editorial excellence, depth of detail, proof of thesis, and author presentation.

One judge described Walsh's book as, "Very well written - a must for anyone involved in the life of someone living with Alzheimer's. The author even found a little humor."

"The sources, tips and warning signs in the book were very helpful in understanding the disease better," wrote another judge. "I wanted more, but I guess the ending documented the reality of the situation."

Walsh spoke on November 4 at the Alzheimer's Association Candlelight Vigil in Lakeland, Florida. She suggested, "National Alzheimer's Awareness Month is our chance to remember, educate and share what we know about Alzheimer's disease. Soon everyone will know someone, or care for someone with Alzheimer's." Walsh encouraged caregivers to "ask for help BEFOREyou're exhausted and overwhelmed."

Alzheimer's disease is a progressive, degenerative disorder of the brain. The Alzheimer's Association estimates 25 million Americans have a family member with the disease. In his proclamation, President Bush asked the people of the United States to observe this month with appropriate programs and activities to increase understanding and awareness of Alzheimer's disease. In 1982, President Ronald Reagan proclaimed the first Alzheimer's Awareness Week. That designation began a revolution in advocacy, awareness and understanding of the disease. In the following years, Alzheimer's Awareness Week grew into Alzheimer's Awareness Month, a significant representation of the importance of making everyone aware.


Karen Favo Walsh publishes a monthly newsletter to provide comfort and information to Alzheimer's caregivers. It is available online at http://health.groups.yahoo.com/group/Alzheimers_Stories/.

Contact Karen through this website, or by e-mail at Alzheimerstories@aol.com.

Alzheimer's Stories: A Caregiver's Guide to Mismatched Outfits, Goofy Hair and Beer for Breakfast (ISBN 1-59113-418-8) is available online at BookLocker.com, or where books are sold.

For more information visit Alzheimer's Stories Newsletter on Blogspot.
Florida Writers Association.
The Alzheimer's Association


Links

Researchers in California say an image of the brain may be the answer to identifying Alzheimer's disease before the symptoms show.

Medical Breakthroughs - Get the Facts on Alzheimer's Disease


If you are taking care of a spouse or family member at home, you are at greatest risk for back pain.

AAOS Online Service Fact Sheet: Lifting Techniques for Home Caregivers


HAPPY HOLIDAYS FROM THE RIBBON STAFF

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