Volume 2, Issue 16 - The Ribbon Newsletter

Volume 2, Issue 16
August 20, 1999

I want to start off by saying "Thank You" to Karen. She pulled through for me by putting together and emailing out the last issue. I don't know what we'd all do without her.
I was in Georgia with my Mom as she was getting her pacemaker. She had an episode of heart block which made the pacemaker necessary. Thank heavens my husband was good enough to watch over and grocery shop for my grandparents so I could help with my mom without the added worry. I'm also thankful to my brother, Andy, for being the primary caregiver for my mom. Hugs, Jamie

Visiting in the Adult or Nursing Home

Once a family member moves to an adult or nursing home, family and friends may find it difficult and uncomfortable to visit. The resident needs your visit because it provides crucial emotional contact with his or her family; you need to continue to participate in the person's care.

Conversation on nursing home visits may be strained. You may not know what to say or do. If the resident is still able to communicate, start a conversation and then listen. Give the patient your full attention and listen with your heart as well as your mind. Watch the body language and be alert to the feelings that may be expressed beneath the words. Complaints may be an indication of loneliness.

If the resident is withdrawn or resists talking, try doing an activity together, such as arranging flowers or assembling a photo album. This may help stimulate conversation.

There are a number of physical activities that can be stimulating for both patient and visitor and can make visits a positive experience.

Give your loved one a backrub or gentle arm and leg massage. These can relieve discomfort caused by immobility and lack of exercise. Just rubbing the skin with body lotion is very soothing. Alzheimer's patients are good at reciprocating with a backrub.
Give the patient a manicure or pedicure. Bring a file, clippers, lotion, and a pan for soaking the feet. Women especially enjoy having their nails polished.
Many nursing home residents spend a great deal of time in bed or wheelchairs. A staff member can demonstrate how to help the patient with arm or leg exercises to maintain flexibility and function. If possible, take the resident for walk up and down the halls or around the grounds.
To stimulate the patient's sense of sight, bright colors and bold forms are best. Bring large, clear family photos, a large calendar, posters, mementos, and picture books with animals, flowers, or birds. If there is no problem with the resident eating flowers, bring them. Bring children’s drawings or craft projects.
To stimulate hearing, bring in a tape player and listen to music together, or bring a tape of children and grandchildren talking and singing. You might record descriptions and impressions of a trip, messages from distant relatives and friends, or movie soundtracks. Tell jokes, read poetry aloud, listen to birds singing. You might even make a long distance call to a friend while you're visiting. Many residents can no longer write letters but do wish to keep in touch with old friends. When visiting, you can also help write letters and prepare general cards as well as birthday or holiday cards.
Touch becomes a very important part of the Alzheimer's patients life. Hugs are most welcome, as are kisses and hand holding. Be sure to give lots of them! Bring in pebbles, wooden objects, and stones when you visit. Bring or wear garments with different textures--bulky, plush, crisp, and smooth, for example. Bring swatches of different textured fabrics, or make a small quilt of them, to leave with the resident. Provide bed sheets with different sensations, such as smooth, cool satin; soft, warm flannel; or crisp percale. To encourage memory, bring sea shells, driftwood, candles, or patch work, as well as knitted, crocheted, woven, and embossed items.
Stimulating the taste buds can be another good visiting pastime. As long as there is no violation of diet restrictions, bring favorite foods or beverages. Share vegetables from your garden for a special treat. Contrast crunchy foods like peanuts, popcorn, chips, and carrots with smooth foods like avocados, and milkshakes. For chewy items, choose steak, caramels, and brownies. You might also try sweet, sour, spicy, hot, cool, and mellow foods. Find a favorite!
Residents always appreciate fresh fruit and most persons with Alzheimer's disease love sweets. Possibly your loved one would enjoy a glass of wine or beer. Check with the staff to make sure there are no medical contraindications and whether a doctor's order is required before offering any alcoholic beverage.
Having a meal together is a wonderful visiting activity. Arrangements can be made with the staff for family members to eat a meal with the resident in the dining room or take him or her out to eat. If the diagnosed person enjoys cooking but the facility kitchen is off-limits, the visitors may be able to use an activity room to prepare a favorite dish with their loved one. Perhaps the family and resident can prepare a batch of cookies and have the staff bake them in the facility kitchen.
Smell is one of the most powerful evokers of memories and emotions. Bring perfume, powder, lotion, or tobacco. The smell of vanilla may remind the resident of baking; mint extract may bring to mind the mint patch in the backyard. Liquid smoke can evoke memories of cookouts or wiener roasts. Provide the fragrances of flowers, plants, incense, and air freshener to stimulate the resident. If possible, take him or her outside to smell springtime, autumn, rain, and snow.
Remember that whenever you visit a resident in an adult or nursing home you should bring joy and, if possible, laughter. Try to include other residents in your visits. They need friendship just as much as your loved one does.
It is permissible to cry all the way home if it helps you! Just keep in mind that when you walk into the facility, you want the residents and staff to be happy that you've come.

What do say/do when there's nothing to say/do?

Say I love you, I came to see you, and I'll be back again (regardless of their reaction to your visit).
Sit close, away from window glare, at eye level, and touch or hold as preferred by your relative.
Look for clues to feelings in body language, eyes, or repeated phrases.
Gentle teasing or joking provides a sense of continuity and pleasure to those who have always communicated this way in their families.
Silence can be golden--tender moments watching birds, listening to music, or praying can be wonderful for you both.
Respect personal space and possessions. Ask before moving things around or sitting on the bed. Go slow ... keep pace with your relative's concentration, tolerance, etc.
Substitute shared activities for limited conversation: manicures, massages, looking at photo albums, watching TV, walks, writing letters.
Reminisce about your favorite Christmas, first car, baking in the old home, the smell of a wood fire. Note: If your relative is very impaired, you will need to talk about earlier events.
Use the arts and your skills--music, poetry, photos, video or audiotapes, art work--to stimulate your loved one. Play games (even if your relative can't play as well, he or she still might enjoy the activity).

Whatever you do, do not:

Rush in, standing at the door as if you are on way out.
Stare out the window, check your watch, or look bored.
Apologize for your guilt or feelings of failure--it's not your fault and you and your relative are in this together.
Give advice, nag, or talk down (baby talk).
Provide a litany of your problems or obstacles to visiting.
Change the subject when your relative express negative or sad feelings.
Talk about your relative as if he or she is deaf.
Spend all your time with other residents or staff.

Courtesy of Lisa Gwyther, M. S. W.

Visiting in the Adult or Nursing Home

For more information about Visiting in the Adult or Nursing Home, please contact the Chapter's telephone Helpline at 703-359-4440 or 800-207-8679.

Personalize Outings for Persons with Dementia

Many families ask for guidance or suggestions on appropriate outings for their loved one with dementia, but there are no easy answers. Because the person's interests, likes and dislikes often change during the course of the disease, the caregiver is left with the challenge of finding new activities to engage or entertain the person.

In creating such activities, caregivers should first ask, "Whose needs am I trying to meet?", then establish goals to fill the needs of that person - the person with dementia.

For example, try not to continue the relationship as it was by preserving familiar activities your loved one can no longer take part in. Some familiar activities can be continued for a long time into the disease, as long as they are adapted to the person's changing abilities. Caregivers who know and are sensitive to the needs of their loved one can continue to make sound judgements about what works and what doesn't.

Be careful not to take the roles of "patient" and "caregiver", and only tend to daily needs such as eating and bathing. Without thinking, you might fall into the habit of meeting your needs at the expense of your loved one, or vice versa.

When considering outside activities or outings for you and your loved one, think about simple goals you hope to accomplish, such as:

Exercise and fresh air
Being together in a relaxed setting
Doing something enjoyable or interesting
Feeling love and support from relatives and friends
After setting these goals, keep the following in mind:
Plan activities that were enjoyable in the past, and begin making any changes based on interest and tolerance.
Avoid activities with crowds, such as popular sporting events.
Go to places at times when there are fewer people and prompt, personal service, such as an early lunch or dinner at a familiar restaurant.
Limit time spent on one activity. Activities that last longer than a few hours are often too taxing.
Consider activities that are flexible enough to permit a change of plans, such as leaving a party early.
Plan activities that don't require much concentration, but have some ability to hold the person's attention. Try visiting a pet store, zoo or flower show.
Allow the person to participate according to ability. Don't demand more than he or she is capable of. For example, "Come on, you remember your sister-in-law, Barbara."
Enjoy simple activities: A walk to the park or an ice cream store, a visit to a church or temple, a quiet drive through a forest preserve, a walk along the lake front, a stop at the local playground.
Be creative in trying things that might be unusual, but workable, such as a trip to a garage sale, a swim at the local YMCA or a leisurely stop at a local bakery.
Most activities are meaningful for persons with dementia because of the supportive relationship they share with their caregiver. As the disease progresses, many individuals rely on familiar people and the newly adapted, now familiar routines in their life. Repeat community outings that the person with dementia enjoys.
Remember that a break in routine, though refreshing for the caregiver, may produce stress and discomfort for the person with dementia. For many people with dementia, familiarity, not variety, is the spice of life.

By Dorothy Seman, M.S., R.N.
Alzheimer Family Care Center

Source: Alzheimer's Association. West Central Texas Chapter.

Medical News

From Andy@30135.com

Aquarium Fish Soothe Alzheimer's Patients

Updated 9:49 AM ET July 27, 1999

CHICAGO (Reuters) - Alzheimer's patients are calmer, sharper and have better appetites when exposed to tanks of colorful, gliding fish, researchers said Monday. "I think the combination of movement, color and sounds provides a stimulating experience for the patients," said Nancy Edwards, a nursing professor at Purdue University in West Lafayette, Indiana. "It was just really amazing how it got them to calm down and focus." Edwards' research team placed two 5-foot-high by 3-foot-wide aquariums, each containing six to 10 silver and gold fish, in three Indiana nursing homes housing 60 Alzheimer's patients. The researchers found when the patients were in close proximity to an aquarium, episodes of wandering, pacing and physical aggression associated with Alzheimer's disease decreased and the patients' food consumption was up 17 percent. "Feeding is a terrible problem, because the patients are either running up and down the hall, or they're so lethargic that they can't stay awake to eat," said Edwards, an expert on chronic illnesses such as Alzheimer's and Parkinson's disease. "But now they're watching the fish, they're not moving, they're awake and they're eating," she told Reuters in an interview. For at least two patients, Edwards said the fish stimulated short-term memory. And Edwards said in one case, an 83-year-old woman who had never spoken before asked questions about the fish.

Aquarium Fish Soothe Alzheimer's Patients

Books for Children

From SewingBabe

Every now and again people ask about books that are appropriate for children about Alzheimer's Disease. I found these books and I have to admit that as I was reading them I almost began to cry several times. They are wonderful in the way they explain the disease to children without talking down to a child. They also show good ways of interacting with a person who has Alzheimer's. These books are appropriate for children from 5 to 10 years of age.

Grandpa Doesn't Know It's Me. By Donna Guthrie, Illustrated by Katy Keck Arnsteen. Human Science Press, Inc., New York, NY. 1986. ISBN 0-89885-302-8

Forget~Me~Not Writen and Illustrated by Jonah Schein. Firefly Books, Ltd./ 3520 Pharmacy Ave., Unit 1 c, Scarbourough, Ontario M1W2T8, 1988. ISBN 1-55037-000-6

My Grammy. Marsha Kibbey, Illustrated by Karen Ritz. Carolrhoda Books, Minniapolis, MN. 1988. ISBN 0-87614-328-1

Wilfrid Gordon McDonald Partridge. Mem Fox, Illustrated by Julie Vivas. Kane/Miller Book Publishers, Brooklyn, NY. 1985. ISBN 0-916291-04-9

My last selection is not about Alzheimer's but on how a person feels as they grow older. It is beautiful in it's own right. This last book is more appropriate for pre-teens.

How Does It Feel To Be Old? Norma Farber, Illustrated by Trina Schart Hyman. E.P. Dutton, New York, NY. 1979. ISBN 0-525-44367-3

E-Mail Bag

From Momi1knobi
dated Aug.5

Hi all,

Just an update to let you know I won't be able to retrieve or send much mail for awhile. My mom had a stroke on Wednesday and is in the hospital. We are waiting to see how much damage was done. Right now she has a little paralysis on the right side of her face and her right arm & leg are weak.

I did get a vacation this summer, we went to Colorado for a week and a half while my sister came out to take care of Mom for me. During this time, my brother died. My sister made all the arrangements & did a beautiful job.

I made flight reservations to attend the funeral only to arrive at the airport & be told "the airplane had been hit!" I of course think of planes as flying & thought of all the people on the plane--but they went on to explain that the ground crew had hit it & damaged it so badly it could not fly. Thankfully no one was hurt. Some ground crew!

If I had left Colorado though, I knew I wouldn't be able to go back, because my Mom would not want me to, so God takes care of things in his own way. Definitely has a sense of humor! (plane crash--NOT)

I was concerned that the stress and so much traveling--I had just taken Mom back to see my brother & both sisters in late May early June--had contributed to my mom's stroke, but the doctor said stress didn't cause strokes.

Hopefully in a few days, I'll be back & have a little time to be "back on the net"!

Take care & thanks for all the mail! I'll email again when I am able to check my mail.

Margaret

From Drnkbudlit

Thanks for keeping me on the ribbon mailing list. I do not get much time to be in the chat rooms with 3 kids and caretaking of my mom. but I do rely on your newsletter to keep me informed. You are doing a great job. Keep it up...Just think of all the hearts you touch in one day!!
Gail
Drnkbudlit

Remember to keep your loved ones hydrated during all this heat. Even though they may be inside, they still need liquids.

Please continue to send in your thoughts, ideas, suggestions, etc. to be included in the E-Mail Bag. Without you The Ribbon would not be possible. It is through you that Karen and I find the strength to continue on in our battle against Alzheimer's Disease.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)