Volume 6, Issue 8 - The Ribbon Newsletter

Volume 6, Issue 8
April 21, 2002

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

From The Archives

For many of us who have been coping with AD for a long time, the behavioral problems associated with caregiving an Alzheimer's patient have become part of our everyday world. For those who are just beginning their journey into caregiving, these behaviors can be terrifying. Many e-mails lately tells us of new diagnosis and of families struggling to understand what is happening to their loved one.

The following article is from our archives and sheds new light on a problem we all face.

Behavioral Problems

One of the hardest parts of dementia can be in dealing with the behaviors of people with this illness. Dementia damages the brain so the person is unable to make sense of what he or she hears or sees. This confusion may make the person frightened. The behaviors that occur are a way of reacting to that fear. most of these behaviors are not under the person's control and he or she is usually trying hard to adjust. Here is a list of some of the behaviors that are common with dementia, specifically Alzheimer's Disease. The behaviors differ among patients. You may not face all of or even most of the problems listed here. But if you do face problems, one of the first places to seek help is the local Alzheimer's Association.

CATASTROPHIC REACTION: A catastrophic reaction is an outburst of emotions. It is usually in response to a feeling of failure or of being overwhelmed. It may include behaviors such as crying, sudden mood changes, anger or fighting. Catastrophic reactions usually occur during the morning hours, when daily care activity is the highest.

YELLING OR SCREAMING: Yelling or screaming may occur for a variety of reasons. It may result from overstimulation, meaning there might be too much going on, too many people around, or too much noise around the patient. it could also result from boredom or too little stimulation, meaning the patient needs more contact or more activity. Finally, yelling and screaming may be caused by pain, hunger, fear, or depression.

FIGHTING: Fighting is dangerous because of the potential harm to others. It often occurs when the patient misunderstands a situation and the caregiver seems to be threatening to the patient. Perhaps the caregiver gets too close to the patient or moves too quickly. Fighting might also occur because the patient feels no control over what is happening to him or her. The patient sees fighting as a way of getting back some of that control at that moment. Patients with dementia might not know how to deal with anger in any other way than fighting. It is a defensive response.

WANDERING: Wandering might be how a person copes with stress, boredom, or need to exercise. Sometimes, it reflects the need to search, a sense of feeling lost, or acting out a past work role. Other possible reasons for wandering are physical, including feeling pain needing to urinate or medication side effects. It can also be driven by changes in the brain. There are generally four types of wanderers:

Exit-seekers: usually want to leave the building or house
Restless wanderers: want to simply pace or roam
Stimulators: looking for means of stimulation; may touch wall surfaces or curtains
Imitators: wander because someone else does (generally in nursing facilities)

RESISTING CARE: Sometimes, dementia patients refuse help getting bathed, dressed, and/or fed. Resistance may occur if the patient doesn't understand what is wanted and feels rushed or treated roughly. It can also result from fear of being treated poorly or being dropped. Also, refusing care might be a way of getting control over a situation in which he or she feels threatened. Finally, resistance might occur if the patient is cold, embarrassed, or fears water.

SLEEP PROBLEMS: Sleep problems include problems falling asleep and/or waking up during the night. Sleep problems might occur for many reasons, such as normal reduced need for sleep among the elderly, pain, the need to go to the bathroom, use of food or drinks with caffeine during late afternoon or evening, and too much napping or inactivity during the day. Additionally, the sleep/wake cycle can be altered by changes in the brain.

VERBAL AGGRESSION OR OUTBURST: Verbal aggression includes arguing, cursing, threatening, or accusing. It may come as a part of resisting care, a catastrophic reaction, or during fighting, or it may occur separately. Anything that causes stress might bring about this behavior. Verbal aggression might be the only way a dementia patient can show anger. It is important to remember a person with dementia who is verbally aggressive usually does not know or mean what he or she says.

UNJUSTIFIED COMPLAINING: Complaining without reason can be very bothersome. Often, the caregivers feel guilty about the care he or she is giving and complaints make the caregiver feel worse. The complaining may often take the form of being constantly concerned about health. These complaints can occur for a variety of reasons, including low self-esteem, need for attention, lack of stimulation, or depression. Other behavior problems include: LOSING, HOARDING OR HIDING THINGS, RUMMAGING IN DRAWERS AND CLOSETS, INAPPROPRIATE SEXUAL BEHAVIOR, REPEATING QUESTIONS, REPETITIOUS ACTIONS, CLINGING OR FOLLOWING, FORGETTING PHONE CALLS, and MAKING FREQUENT DEMANDS.

SUNDOWN SYNDROME: People with dementing illnesses seem to have more behavior problems in the evening. This worsening of behavior is often called "sundown syndrome". The cause is not yet understood but if you find that your patient has this problem, some careful planning of the daily schedule can help. For example, do not schedule bathing or going out for an outing in the evening. Also, establish an evening routine so that the patient will not become more confused.

SHADOWING: Sundowning is often accompanied by "shadowing", where the person with Alzheimer's disease follows or mimics the caregiver, or talks, interrupts, and asks questions all the time. At times, the person might become upset if the caregiver wants to be alone.

PARANOIA/SUSPICIOUSNESS: It is not uncommon for persons with progressive dementia to become suspicious or paranoid. The person might accuse his spouse of cheating or stealing money or might think that other people are trying to find him and harm him. Many times, reassurance does little to relieve the patient. In these situations, distracting the patient with an activity or favorite topic might be helpful.

DELUSIONS AND HALLUCINATIONS: As the disease progresses, the Alzheimer's patient might begin to have delusions or hallucinations. Delusions are fixed false beliefs, and an example might be when a patient believes that someone is trying to kill him or steal from him. A hallucination is when a person experiences something through his senses that other people do not. An example of a hallucination might be hearing voices or seeing children at the foot of the bed.

How Do I Manage These Problems?

Behaviors have different causes in different people and different solutions will work in different households. The following are called the "6 R's of Behavior Management" and might be helpful in dealing with problems that arise.

Restrict. First, try to get the person to stop whatever he is doing, especially when there is a danger of hurting self or others. Speak calmly and address the patient using simple commands.

Reassess. Ask yourself what the cause of the behavior might be. What happened just before the behavior began? Is there a physical problem? Can the source be removed or lessened? Could it be approached in a different way?

Reconsider. Try to consider the person's point of view. How must the things that are going on seem to the patient? What is she or he thinking?

Rechannel. Look for a way to continue the behavior in a safe way or look for other means of using some of the energy. Redirect the person to another activity. Remember, the behavior is important to the patient in a way we cannot understand.

Reassure. Take time to reassure the person that everything is okay and that you still care about him. Let him know that you are still going to care for him.

Review. Afterward, think over what happened and how it was managed. What will you do if faced with this problem again? Often dealing with behavior problems is difficult because the caregiver takes the behavior personally. It is important to accept the behavior for what it is, a symptom of the disease. It is also important to acknowledge that many times behavior problems become so difficult that they require medical intervention. There are a variety of medications that have been effective in controlling or limiting behavior problems. The local Alzheimer's Association has a list of doctors that specialize in Alzheimer's Disease.

Adapted from the book, The 36-hour Day, by Mace and Rabins.

Editor's Note: This book is available through The Ribbon Book Store and is, by many, considered "The Bible of AD Caregiving". It is highly recommended for new caregivers.

Using Usual Items To Do Unusual Tasks ©
by Beverly Bigtree Murphy, MS, CRCR

Finding the products one needs to meet the changing needs of a loved one facing long-term care doesn't have to be as difficult as one might think. I found, during the many years of home care of my husband, that I didn't always need to get the high-tech expensive products advertised in catalogues and medical supply places, and more often than not, by using a little creativity and ingenuity, I was able to take common items and make them do uncommon things. Here are a few of my discoveries:

Baby crib pads, double-sided flannel, full crib size - worked very nicely as a bed pad and seat pad under my husband when he became incontinent. Make sure the pad has a flannel finish on both sides. The flannel finish on both sides of the crib pad kept it in place under the body, it is less likely to bunch up under the body or slip - a common problem contributing to bed sores in late stage care, and it will stay in place if your person is still able to move about. By placing a bath towel on top of the pad I insured that fluffy cotton acted as a buffer between his body and the rubber-like pad. The combination towel and crib pad also works nicely as a draw sheet on the bed, allowing me to roll him on his side so I could clean and change his pad when he became bed ridden.

Baby lap pads, double-sided flannel - with an attractive cotton throw or towel on top work wonderfully well on chairs, sofas, car seats and keep a home looking like a home.These can be bought in the baby departments of any department store. The four I bought lasted the last four years of Tom's life, were easily washed and dried, and saved considerable money compared to other more expensive pads on the market. Note: Disposable pads slip and slide, and over the long haul and can be very expensive. I don't recommend them except as an emergency measure (travel, out-of-home short term visits). To be very honest I packed a flannel pad and took it with us. I was used to working with them and after that first package of disposables I never needed to buy them again. Make sure the crib pads are double-sided flannel. The one -sided ones slip as much as the disposables.

Wash cloths are cheaper by the dozen - I used the inexpensive all cotton wash cloths sold in packages of 6 or 12 and available in super markets, K-Mart and Target type stores and drug stores to deal with my husband's incontinence and other needs.

The thin nature of these wash cloths allows the caregiver to get a good grip on the 'problem' at hand. They are easily rinsed off (remember how we used to slosh cloth baby diapers in the good ole' days) and thrown in the laundry for final cleaning. These cloths last for weeks before they get ratty looking, and because the price is right can be replaced without hitting your budget too hard.

Different colors for different functions. One color for incontinence use only.

Products similar to baby wipes, are difficult to use. Babies don't have all the undergrowth to deal with that adults have. You need something that gives you a good grip on the situation, literally. I also found that it was easier to set up the wash cloths, some already soaped and some with just water for rinsing. Stack them and grab and discard as needed. If using the packaged products pull out all the sheets you think you'll need before you begin. They do offer convenience 'on the road' and some of these products are flushable.

When I traveled with my husband, I kept a few moistened and soaped wash cloths in zip lock bags in my ever present tote bag. I looked for off highway gas stations that offered the privacy of a single stall room with sink. I always carried a small bottle of liquid soap in the tote bag.

Nothing works better than soap and water when dealing with incontinence. I cut liquid soap, half soap to half water. This allows an easy flow of soap from dispenser and doesn't put too much soap on the cloth. Use a dispenser with a pull top, the tab tops get in the way when you're in a hurry and you will always be in a hurry to get the job done as quickly as possible.

Cold Pressed Castor Oil and Bag Balm- make a good lubricant/salve for skin lesions/bruises/diaper rash. They are both healing to the skin, are an excellent inexpensive buffer between diaper and skin, and they don't have an unpleasant smell. Diaper rash can escalate to a full blown problem overnight. I recommend regular use of either of these products. Even Hospice was impressed with how quickly Tom's skin rebounded with these products. One note of caution, be careful not to get any of the oil on the incontinence pad or the tabs won't hold.
*Cold Pressed Castor oil has been used as a topical skin treatment since biblical times, and I used it as a skin treatment exclusively from the moment my husband became incontinent. It can be bought in any health store. For Information on topical use of this product this book is available on Amazon: Edgar Cayce and the Palma Christi by William A. McGarey

*Bag Balm My sister swears by it for diaper rash for her twins, and I found many of my support group members had been turned on to it by one of the group members.

Baby Medication Syringes - The plastic syringes are inexpensive, and are available in any drug store, K-Mart, or Target-like store. I used them for feeding clear soups and other liquids when Tom had difficulty eating. The syringe holds a good spoonful of liquid and the size of the apparatus makes it easy for the caregiver to regulate the amount of liquid that goes into the mouth. Cut the tip of the syringe back to get the desired hole size. It also worked with pureed foods.

Ice Tea or Ice Cream Soda Spoons are easier to use when feeding a reclining or bed-ridden person. The longer handle gives much more leverage than regular soup or tea spoons.

Stick to cotton, rayon, silk or woolen clothing if your person is becoming bed ridden. Polyester and other synthetics, although touted as being easy to clean, are not kind to fragile skin, and they really aren't easier to keep clean. In fact, I have found that once a stain is set in a synthetic it is impossible to remove. There are more and more beautiful, un-dyed, natural fiber fabrics appearing in garments in stores like K-Mart and Target and catalogues, which gets them into anyone's budget. Stay away from highly perfumed softeners and strong bleaching. Look to more nature friendly products and rinse thoroughly after washing. The less chemical on the skin the better.

Cotton is the strongest natural fiber there is and it stands up to repeated washing. I recommend this as a preferred fiber in clothing. I also recommend all-cotton sheets, percale or flannel. Read the labels to be sure they are 100% cotton before buying. Look for cotton knits, because knits stretch and are softer on the skin.
Rayon is the only man made fiber with natural breathability, and, contrary to belief, it is washable. Spin dry long enough to remove wrinkles then take out and hang dry. Rayon /cotton blends are fine.
Silk knits are warming and light on the skin, but they often feel sticky in a hot humid climate.
Wool can be a problem if the person has a sensitivity to wool. However, wool on top of cotton always works.
Synthetics induce sweating, which increases the chance of skin breakdown in an immobile person. They can be rough on the skin and make skin itch. As a further note, most all woven men's pajamas are cotton/polyester blends. I do not recommend them. Sleeping on polyester sheets is like sleeping on a plastic bag in my opinion. Also, many elderly develop allergies to synthetics. Our people will not be able to tell you of their discomfort.

100% cotton knit turtle neck shirts are actually easier to put on an immobile end-stage person than a T-shirt. Put the arms in first, wiggle the shirt as high on the arms as possible and pull over the head. The turtle neck actually stretches easier and further than any other top.

Shirts that button in front involve a lot of manipulation of the arms which become very stiff during the last stage of this illness. Shirts that button or close in back can cause bed sores.
Cut labels from the neck. They scratch, itch and can rub sensitive skin.
Pull-on pants, with elastic ties are easier to get on people who have less and less ability to aide in their own dressing.
Remember, feet need the same attention as the rest of the body. Soft white cotton socks keep the feet warm as well as covered. Men's cotton tube socks are sturdier than women's and stand up to wear, sweating etc. I'd recommend them for women as well as men. Their feet and hands tend to get cold easily as the disease progresses.
Shoes and some slippers may hurt during the late stages. If you insist on foot wear look for fleece pull on slippers.

Cover bed mattresses with breathable water-resistant covers instead of plastic covers and rubber sheets. These allow the skin to breath and are washable. I know everyone wants to get that plastic cover but plastic induces sweating, which increases the potential for skin breakdown. It isn't necessary to protect the entire mattress unless your person isn't being changed regularly. The water-resistant covers used along with the baby crib pads (and towels) which protect the torso area, should cover any event that happens. I never had to worry about the mattress during the six years of dealing with my husband's incontinency. The point is to clean them regularly and not wait until everything is covered with mess and if mess happens, it can be cleaned.

Do not leave a chair or bed-ridden person in a plastic covered, leatherette chair on the premise that they are easier to keep clean in the event of spills or incontinence. The plastic will induce sweating and, again, add to breakdown of the skin.
If you are purchasing a recliner for a disabled person, and I recommend them highly, get one with normal upholstery that is well padded. Use baby pads on the seat if you are afraid of incontinence accidents. Those are washable and your person will be much more comfortable. I added an egg crate mattress cut to fit our chair and made it presentable with an all-cotton throw on top. I also added an ottoman at the feet to give his legs and feet proper support. My goal was always to consider the state of his skin. He never had a lesion that erupted into a full scale bed sore until the very last week of his life.
Use pillows to support the torso, knees, elbows, neck, heels. Gravity constantly pulls the body and they don't have the ability to adjust to the pressure. Bed sores result from rubbing on any surface.

Hand held shower head with an 8-foot hose. Get a 7 - 8 foot hose. The purpose of the 8 foot hose is to increase ability to shower a chair-ridden person properly. The additional length allows the caregiver to spray up, over, around and under with ease. I recommend a plain lightweight plastic hose, and it is possible to purchase an inexpensive lightweight hand-held nozzle without the hose, thereby putting your own package together. It helps to have an on-off button on the hand-held nozzle to control water flow. You do not need the heavy, multi-purpose massage shower heads, which are also more expensive and somewhat unwieldy.If your local hardware store doesn't carry the 8 foot hose, ask if they can make one for you. If not, a local plumbing supply place can. Again, don't let them talk you into the metal spiral, covered, more expensive hose. Lightness and maneuverability are the key words when bathing a disabled loved one. Some catalogues are offering such a shower nozzle with a 7 foot hose. The important point to hose length is reachability.

Bungee Cords instead of baby gates. I found that two substantial eye hooks screwed into the door frames with a bungee cord strung between them effectively kept Tom out of any room off limits. The baby gates actually created a hazard, in that they were too short for his height and he could fall over them. They were also a pain in the neck to open and shut for my access to my own space. The bungee cords allowed me to keep doors open throughout the house while securing his walk space. They also gave Tom a signal of resistance when his body touched on them, he never tried to get over or under them, and he was unable to figure out how to detach them. I bought bungee cord by the yard at a local hardware store and tied them to clasps also bought in the same store. I could adjust length needed myself that way and it was actually cheaper to make my own then buy ready made. When Tom became chair-bound, I removed the eye hooks, filled the holes with wood putty, sanded and painted and the doorways returned to normal with a minimum of effort and cost.

Instead of looking to the exotic, look around and use your common sense and your imagination. There are all kinds of gadgets out there that claim to do special things. I found that looking to simpler solutions and adapting what I already had at hand worked the best.

Reprinted by permission:
Beverly Bigtree Murphy, MS, Rehabilitation Counselor, Author, He Used To Be Somebody, www.bigtreemurphy.com
www.bigtreemurphy.com - Finding the humanity and love in Alzheimer's care.

From the Recipe Corner

We have added 4 new recipes:
Broccoli Salad
Michele's Munchies
Cherry Dump Cake
Cuban Sandwiches

A friend gave me a cookbook "Cooking Then and Now," it is from Historic Spanish Point, just south of where I live. Lots of Florida and Southern cooking, which I will share with you in each issue of The Ribbon. (Cuban Sandwiches in this issue)
We will be giving "Helpful Hints" in each issue, and ask you to send in any you may have. Also, any questions you would like answered, we will do our best to get the information to you.

"Helpful Hint"

Whenever you are complimented on a special recipe, make a Gift Basket with the recipe and all ingredients for that recipe. You can add a new wooden spoon, or a pretty pot holder. Makes a wonderful birthday gift or thank you gift.

Happy Cooking,
Micki,
Food Editor
micki@theribbon.com

Community News

Mary Emma Allen to Speak About Alzheimer's in St. Augustine

Mary Emma Allen, author of "When We Become the Parent to Our Parents" and contributor to "Finding the Joy in Alzheimer's" will be speaking about Alzheimer's and offering encouragement, May 17, at 10:00 AM, at Park Place Nursing Home, St. Augustine, FL.

"I feel it's important to share with family, friends, and caregivers of Alzheimer's patients, to give them encouragment and let them know they still can appreciate their family member and friend. Even though my mother and aunt are no longer living, I remember the good times we had and the joy my family and I brought them."

If you'd like additional information about Mary Emma's talk and other events, email her: me.allen@juno.com.
For information about her book, visit:
http://homepage.fcgnetworks.net/jetent/mea

Email Bag

From rdiggetty@stic.net

I am a caregiver for my husband for 7 years, he is now 63. Along with his Alzheimers he is having vision problems which progresses like the disease. Has to be with someone all the time with feeding as unable to find the silverware, etc. and all his other needs. There are very few people who have this problem. I would like to know if anyone out there is dealing with this. Finally getting government aide for a caregiver and he also attends a day care for Alzheimers. We have no family here to help us out so I am the only caregiver. He is very bored, has books on tape, and TV along with me reading him books are all the activities he can do. Would like to find someone who is going through the same thing I am.

Phyllis

From wewells@peoplepc.com

Hi Karen, Jamie and Kevin: I am so sorry I have not gotten in touch with you for so long. It is almost four months since Bill went into the nursing home and I still cannot cope with it. He is fine about being there. I have a bittersweet feeing about that. I am glad he does not ask to come home and seems to accept his life, but I feel like he never had a life with me, He does know me still but it seems like it's ok if I am there and also if I am not. It hurts. Physically, we are still fighting to keep his one remaining leg, but it requires many visits to the vascular surgeon plus all the visits fo the Alzheimer's Drs. The bypass operation on his leg in November really did a job on his mind. Today is our 54th wedding anniversary and my friends decided it would be nice to have a cake at the nursing home. We did, but Bill slept thrrough the whole thing. They are trying all kinds of medications. He is up all night and sleeps most of the day. The psychiatrist has prescribed Provigil which is primarily a drug for narcolepsy. He has not begun on it yet, but that will be about the last thing they can do. Meanwhile he spends most of the day with his head on his knees or on a table. If they put him in bed, he wakes up and when they put him back in the chair he goes back to sleep. I know he can't get better, but It breaks my heart to see him bent over in the chair . I have tried going different times. I go every day, sometimes more than once. I know there is nothing you can do, but I needed to talk to someone tonight. I have not gotten into the Gathering Place yet because by the time I should I am so tired, I just go to bed. Thank you for reading this. Some days are pretty good. This is not one of them. God Bless Sadie

From KMenges581 in reply to Sadie

Dear Sadie,

Placing a loved one is one of the most difficult things a caregiver has to cope with. It sounds to me like you are doing as well as you can at this moment in time. As it takes time for Bill to adjust, you too are adjusting.

I know exactly what you mean about it being "bittersweet" that he doesn't ask to go home. When we placed my Mom, 2 1/2 years ago, I fully expected to have a fight on my hands. But within just a couple of weeks, we realized that this was just the right place for her. She adapted right in with the group. And in her case, she actually was better. She was calmer, ate better and took her meds when she was supposed to.

I would suggest that you read Nursing Homes - Special Issue - TheRibbon.com. It is found in The Reading Room of The Ribbon web site. It will give you some insight as to what others have dealt with and how they handled it.
I cannot stress enough how important it is for you to care for yourself. Now that you know that Bill is safe, you need to focus on how you are going to go on. Your caregiving is not done, it has just changed. It is a proven fact that patients who have visitors on a regular basis receive better care. We were told that short visits, more often, are better than long visits. If you go and he's having a bad day, leave. It will only upset both of you if you try to stay. With my Mother, some days I go in, see she's having a bad day, and leave within 10 minutes. Other days, I can stay for an hour and she's fine and we have a great visit. You never know what you'll find.
Sadie, I know how it hurts to see Bill like this. Hold onto the good memories you have of your life together. No one can take that from you, it happened. Hold those memories to your heart. You are blessed to have had 54 years.
Be strong and remember you are not alone. I know it would help for you to talk to others going thru the same thing. Do try to get to the chat room if you can.
Keep me posted on how you are doing..
Karen
The Ribbon

From spacaro@worldnet.att.net

Dear Friends,

I'm a little slow in writing, but I wanted to tell you how pleased we were, that you were able to use my husband's letter "Hints for Caregivers". Members of our Support Group were excited, to see others able to get the information it contained. If it was of any help to some of the readers of "The Ribbon", then it was worth doing. The newsletter means a lot to me and I look forward to receiving it!!! It helps to know I'm not alone. Keep up the good work. You are doing more good than you can realize.

I'd like to share an address with other readers, for a site on Alzheimer's. This site has an entire A.D. Manual available for reading (and printing if desired). This manual and website was put together by the University of Nebraska and the Lincoln, Nebraska Alzheimer's Association. The address is
http://nncf.unl.edu/alz/.

from: Carolyn

Hugs and Peace,
Jamie and Karen