Bravery by Priscilla Pittman, MSW, MA

Think about your favorite movie.  Chances are the main character, the hero in that movie, probably faced a challenge that seemed insurmountable.

What makes a hero is facing that insurmountable challenge and finding a way to do something, anything to meet it.

Heroes are brave.

People diagnosed with dementia and their caregivers are brave.  There is so much more than the neurological diagnosis for families to address.  It includes learning to take a personal tragedy and then by adapting their lives and working together or alone they create a life far different from former expectations.

It involves pushing aside negativity frequently, accepting the losses, learning about dementia, caregiving and care-receiving.  Education is a must, but there is no silver bullet that solves all communication and caring issues…it is more like silver buck-shot.  Support groups are one of the best learning tools. We learn from one another about what worked and what flopped in our efforts to improve quality of life for our loved ones.  We learn that “normal” is only a setting on the clothes washer, and that each person will continue to be unique and no two will progress or experience the same symptoms in dementia world.  But our beliefs and experiences will color our world and assist others in their journey.

Arthur Klineman speaks knowingly when he writes: “We have each of us gone through feelings of loss, anger and frustration.  We have been marked by a special kind of pain.  But we have also experienced a deepening sense of responsibility, gratitude for all that we had lived through together, love, solidarity, and a shared sensibility that we have resisted what is beyond our control and are, individually and collectively, more for it.”

Klineman defines care giving as ”…a defining moral practice.  It is a practice of empathic imagination, responsibility, witnessing and solidarity with those in great need.  It is a moral practice that makes caregivers, and at times the  care-receivers, more present and fully human.”

The task is not easy.  The disease saps energy, and makes the possible seem impossible.  Words and actions create oceans of tears, mountains of guilt and quakes that divide families as caregivers struggle to manage the difficult decisions, the financial problems and attempt to understand those who turn their head and will not care.  But, according to Kleinman, “…out of the billions of ordinary acts of care giving comes much of that which… sustains the world.”

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Need more info?

email or call us at elise.stuart@alzark.org or 501-224-0021

SWALLOWING PROBLEMS: TIPS FOR PATIENTS AND FAMILIES

By   Priscilla Pittman, MSW, MA

Alzheimer’s Arkansas Programs and Services

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Swallowing is a complex motor function and, therefore, may be affected by some chronic illnesses. The process begins unconsciously as the amount of saliva increases in the mouth when we see food. Then, the food is taken into the mouth where it is chewed and moved from side to side for chewing, tasting and shaping by the tongue.  When the tongue pushes the food to the back of the mouth, the food touches the tonsil region and a swallow is initiated setting into motion the movement of the food through the throat and into the esophagus.  The Mayo Clinic advises us that the swallow requires approximately 50 sets of muscles and nerves.

When swallowing problems occur it is important to seek medical assistance.  Often a swallowing study is ordered in order to determine the cause and treatment needed.  Some swallowing occurs when food sticks or seems to be lodged in the throat (esophageal dysphagia).  There may be problems with the nerves and muscles in the throat that make it difficult to perform the normal swallowing action (oropharyngeal dysphagia).

Depending on the chronic condition, swallowing can become uncoordinated and result in choking or aspiration (food going into the lungs).  Persons with a dementia diagnosis may eat slowly, have too much or too little saliva, or forget to swallow and store or pocket food.

Suggestions to aid swallowing:

• Body position is important. A speech therapist recommended the person sit upright at a 90-degree angle for 10 minutes before, during, and for 30 minutes after eating.
• Incline the head slightly forward for easiest swallowing. Sometimes positioning can be aided with a U shaped pillow behind the neck in a high-backed chair.  If a person is helping, they can place their hands gently on top of the head, but not on the back of the neck.
• Best results are obtained when all of the person’s senses are engaged. Dentures that are properly fitted and placed, plus hearing aids and/or glasses at meals will provide optimum sensory input.
• Sensory overload can be distracting. Turn off TV, use soft, relaxing music, and if possible limit traffic. Food placed in small colored bowls or plates may decrease the overload experienced when food is piled on a single plate.
• Color is important; some research has shown people eat more when food is served on a red plate.
• Some swallowing problems can be eliminated when caregivers limit servings of milk products and other foods that increase mucous levels or sticky foods that are difficult to swallow.(white bread, mashed potatoes, pasta)

Additional tips:

• It is a good idea for the caregiver to encourage their care-recipient to use the restroom before the meal begins because when they begin eating a gastrocolonic reflex may occur stimulating elimination.
• Have a mealtime routine-set a time and try to stick to it. Relax; they are not in a hurry.
• Finger foods may be easier to manage if the person has difficulty using eating utensils. Delicious soup could be sip ped through a straw if properly blended; potato is one of my favorites.
• Food temperature-the desire for warm or chilled foods may change, gut very hot foods or plates can be dangerous.
• Watching a fish swim can be calming and some research credits this activity with a 27% increase of appetite. When mentioned at a support group meeting one participant later reported his autistic son’s appetite improved using this tactic.

It is important to not be overly concerned about a balanced diet if your care partner is losing much needed weight. The loss of smell can increase the difficulty caregivers’ face; therefore it is good to experiment with ways to add taste and calories.  Try adding sour cream, or other dipping sauces for bite-sized meat or vegetable products.

Nibble foods are good; place these where the person can see them and sample regularly.  Tailor these to meet your care recipient’s likes and dietary needs.  Fruit or cookies are possible examples to try.

Swallowing exercises are important also.  A swallowing study can provide excellent information and improve quality of life!  Check with your doctor.

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For more information please call or email us!

501-224-0021 or elise.stuart@alzark.org

It is Easier to Give Than it is to Receive Priscilla Pittman, MSW, MA

Do we participate in a community group or attend a particular church or temple and enjoy doing for others?  Providing time and effort for others whether or not we know them is a rewarding experience.

But we really don’t like to have needs or have others provide for us do we?

Before moving to Arkansas, hospice was my focus.  During a hospice training in the 90’s, the leader told us our session would include a foot washing, but quickly urged us to erase the Biblical references that sprang to mind.  Instead, she instructed us to see receiving care from the eyes of the patient.  Most were in line to pick up the supplies needed to wash feet, no one wanted to have their feet washed.  But soon friends opted to take care of one another, until our leader announced we could only participate with a total stranger.  Some donned a good natured attitude and slipped off their shoes, or gathered washing utensils, but the person assigned to me was an angry, young woman who resented the assignment since she couldn’t wash her friend’s feet.  Quickly she dunked my feet in a pan of tepid water, soaped, rinsed and partially dried my feet before she scurried away.  She did not say a word.

I was seated next to a woman who sighed when her feet were immersed in the warm water provided.  Her “washer” looked at her, spoke to her, and slowly soaped, rinsed and dried carefully between her toes.  She even applied lotion and massaged her lower legs.  I watched with moisture still evident between my toes.

This was a prime example of doing a job with love and care versus doing a job to “get it done”.  As one who received “un-care”, I felt slighted in one regard, but honored to have seen the proper care given to another and to have learned a valuable life lesson as well.

Families often have similar scenarios with children or siblings providing the same type of care. Others would be grateful for even the smallest contribution because they are carrying the entire load.  But despite the long, arduous hours the overall picture is one of gratefulness.  Some have overcome past issues to reclaim personal health, forgive, and find a new relationship with a family member.  Caregivers have wonderful stories; each support group meeting inspires and confirms my belief that out of adversity springs solutions!

One caregiver reported seeing something on HBO some time ago that examined the benefits of hugs and affection.  She was now the caregiver for her mother, and was increasingly frustrated by the personality changes and behaviors contrary to conduct she had known. Recalling the television production she hesitated, but although they had never been an affectionate family she decided she had nothing to lose.  When preparing her mother for bed she asked if she could give her a good night hug. It was a nice long hug (7 seconds is recommended), and she believed the results were soon evident.  Her mother was less angry and more compliant and our caregiver also smiled more. Every night they hugged, and when she forgot one evening her mother reminded her.  The results benefited her as well; she was now enjoying her new role as caregiver and daughter.

Life may present a circuitous road with ample potholes and more detours than we like to find.  But we all know those who prevail and complete their journey with gratitude; and although they lack material wealth consider themselves wealthy beyond measure.

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 To learn more about Alzheimer’s Arkansas please call or email us at 501-224-0021 or elise.stuart@alzark.org

Awfulizing By Priscilla Pittman, MSW, MA

Opinionator…Wow! The computer doesn’t like that word. But we all have opinions don’t we.  This time of year we only seem to hear political opinions and unless we have the time to do a fact check we may turn a deaf ear to those as well.

A number of caregivers confess a family member focuses on criticizing everything they do, and inevitably they are the only family member providing care.  Being a caregiver is a difficult task and then adding additional negativity makes it twice as difficult.

Sometimes it is the care-recipient providing the negativity. It is best to take this criticism and convert it into a distraction or a positive remark.  With a little practice, some caregivers have become pretty good at returning the verbal jabs.

Being positive in the face of constant verbal adversity is good self-care, but this type of resilience takes practice.  We often are critical of ourselves and it seems we continue to replay the same negative remarks and often in advance of a situation and predicting our failure.

Zig Ziglar cautions us, “The most influential person who will talk to you all day is you, so you should be very careful about what you say to you.”

What we say to ourselves will determine our success at what we attempt, every day.  Unfortunately, more than 75% of what we say is negative programming that works against us.

Our brain does not care where the programming comes from or how it arrives, and it will continue to accept information fed to it by you and others including the pictures, feelings, thoughts and judgments we make about ourselves and others.

You may have had someone you considered an authority figure tell you, you are stupid, you are useless, etc. You may even be replaying programming from your childhood.

Your wonderful brain is a powerful computer system, and will do all in its power to help you live out the programs saved in your subconscious mind.

If we pay attention to the things we think and say, we can reprogram our brain by replacing the negative thoughts and words with those that are positive.

It pays to be more aware of the things we tell ourselves.  In fact, Ben Martin with psychcentral.com, believes we need to question some of our mental activity and, replace some reflections with more reasonable thoughts.

He suggests:

1. Reality testing to examine the evidence for and against our thinking
2. Alternative ways to look at a situation
3. Examining the situation and our perspective; is it as bad as I believe it to be?
4. Utilizing goal-directed thinking and learning from each situation a better way to do it next time

Challenge negative self talk with him at: http://psychcentral.com/lib/challenging-negative-self-talk/0003196

A closing thought: When negativity comes into our mind it brings a folding chair.  If we pay attention it might buy a recliner.

For more Information please contact us at elise.stuart@alzark.org or call us at 501-224-0021.

ANGER: A powerful emotion that can produce positive or negative results

By: Priscilla Pittman, MSW, MA

Program Director

Anger is a warning sign that something is wrong and resolution is needed.  When the warning signs are ignored others may not know what has bothered us and we are likely to respond with self-destructive behaviors such as over-eating, spending, etc.

Stuffing anger can also be destructive and can lead to stress and stress related illnesses.  Why?  When we are angry the adrenal glands flood the body with stress hormones that include adrenaline and cortisol.   Anger initiates the “flight or fight” syndrome by limiting the blood flow to the gut and using this blood to prepare the leg and arm muscles to run or take a fighter’s stance.  Additional preparation accelerates the breath, heart rate, blood pressure, and body temperature.

When the anger or stress response is infrequent the body recovers and levels return to normal.  But a constant demand on the body’s defense mechanisms can result in health problems such as:

• Headache
• Digestive problems, abdominal pain
• Insomnia
• Increased anxiety
• Depression
• High blood pressure
• Eczema or other skin problems
• Heart attack or stroke

According to Ronald Potter-Efron, PhD, an anger management specialist in Wisconsin, the neurological process that triggers anger lasts less than two seconds.  Extending an anger response beyond that brief jolt takes a commitment.

Commitment, so it is our responsibility.  What do we need to learn?

• Sidestep the temptation to vent until time has allowed us to evaluate our anger.

• Was this a response to danger?  Was someone’s welfare threatened? Hesitancy is not warranted here.  This situation requires a swift response.
• Was this an effort to have a problem recognized, diagnosed and solved? Are your questions or concerns going unanswered?  Anger that is properly expressed may fuel a response.
• Did anger occur because of a rule or law violation? Is the problem due to our expectations? Unclear rules? Or has the rule or law not been dealt with consistently.  Is this a violation of a social code such as “It is rude to continue personal cell phone conversations on speaker phone in a public place.”  Frequently, people have not met our expectations. They may not have knowledge of a legal ordinance or may have different perceptions of proper and improper. 
• Were we angry because of our misperceptions? Are we a one-person mafia making our “truth” heard?  Self examination is important.  We may have personal rules we believe are spiritual and moral imperatives.  This may be well and good for us, but we cannot demand the same of others.
• Be aware, anger may be used as a coping device to protect us from the truth.  We may be unaware of why we respond in anger and it may take a large shovel to unearth the “truth.”
• We may have learned our anger management skills from our parents.  Pay attention to what causes anger and recognize the response. 
• What can we do?  Reacting appropriately to anger is a learned behavior designed to keep from hurting yourself or others with words or actions that may have long-term implications.   Fortunately, we can learn new responses and with practice can manage to produce healthier, happier relationships.  Continue to remind yourself that anger is not bad it does have a purpose; the problem with anger is our response.

What are your coping mechanisms?  Walking? It depends on where you are; you can’t go for a walk when attending a meeting or at work.  Try these coping tools:

• Count to 10 slowly
• Take a prayer or meditation break
• Use Dr Weil’s breathing exercise. Inhale through the nostrils, deeply into the diaphragm for the count of four, hold it for the count of seven and release slowly by exhaling through your mouth for the count of eight.  Do this three times
• Go to a quiet spot. Close your eyes and visualize yourself in a calm and peaceful place
• Listen to music
• Later journal the event and record your feelings. It is interesting to read these later, but the biggest reward is the peace obtained when you write about it.

Does anger continue to delete healthy expressions?  Make an appointment with your physician or therapist. 

Want More Information?

email us at elise.stuart@alzark.org or call us at (501) 224-0021

The 8 R’s in Alzheimer Care

1. ROUTINE will help someone with AD anticipate what to do next and what is expected of them. It sets boundaries that feel secure.
2. RITUALS or lifelong habits should be maintained. Don’t try to break old habits. For example, if the individual never enjoyed crafts, don’t expect to involve him/her in crafts now.
3. REASSESS physical health if there is a sudden behavior change. A person with AD will become more confused, agitated or hostile when a physical complaint develops. Consider constipation or a urinary tract infection, etc. as the cause of the behavior disturbance.
4. REDIRECT or distract the person with AD. This can be accomplished by suggesting that it is snack time. When the person with AD asks to go home, say “in a little while, but first how about of tea and a cookie?” You will be surprised that the person will forget about leaving, at least for a little while.
5. REAL questions may be difficult to figure out if the person with AD has difficulty communicating. If the individual becomes agitated, perhaps they are telling you that they need to use the bathroom. Learn to read their body language.
6. RECONSIDER the behavior. Is it truly a problem? Does it present a danger for the person with AD? Or is it upsetting you? Is talking to his/her reflection in a mirror, just like it was another person, a problem? Should the mirror be covered up? Only if the person appears to be upset or frigtened by the reflection.
7. RESPECT is always the appropriate attitude when caring for a person with AD. Laugh with them, not at them. Never talk about them to another person in front of them as if they are not there. And remember, a person with AD will know how you feel by your body language and tone of voice.
8. REASSURE the person with AD often that you love them and will care for them. A gentle pat, stroking their hair, and holding hands all say “I care for you.” Think about how much reassurance of love you would need if you were suffering from dementia.

Distributed by:
Alzheimer’s Arkansas Programs and Services
201 Markham Center Drive
Little Rock, AR 72205

http://www.alzark.org
501-224-0021 or 800-689-6090

For more information please contact us @ elise.stuart@alzark.org

Wandering and Dementia – What to do when a family member gets lost

Follow these steps if a person with Alzheimer’s or another type of dementia drives or wanders away:
• Try to remain calm
• Thoroughly search the house and surrounding area (yard, garage, storage buildings)

If not found within 5 minutes:
• Contact your local police or sheriff department.
1) Tell them the person has dementia
2) Ask them about issuing a “Silver Alert”* (see below)
3) Give them a physical description including distinguishable features
4) Describe what the person was wearing
5) Explain where and when the person was last seen or heard
6) Provide a list of any medical problems or medications the person may need
7) Name places that the person might be trying to go
8) Provide names and contact details of family members and friends.
9) Have a recent photograph available

• Notify your neighbors that the person is missing
• Make sure that someone stays at home in case the person comes home and so that the telephone can be answered

*ARKANSAS SILVER ALERT PROGRAM

In March 2009, a Memorandum of Understanding by the Arkansas State Police, Arkansas Sheriffs’ Association and Arkansas Association of Chiefs of Police created the Arkansas Silver Alert Program. Even though there was no legislation establishing the program, the MOU provides law enforcement with a protocol to follow when an adult (age 18 and above) is missing.

The Alert is issued by the State Police at the request of a local sheriff or police chief if the missing person has a documented metal illness, injury or condition that causes the him or her to be incapable of making personal care decisions; or in cases where a caregiver or family member states that the person has some form of dementia. The State Police will electronically forward information to broadcast stations and newsrooms.

Distributed By:
Alzheimer’s Arkansas Programs and Services
201 Markham Center Drive ~ Little Rock, AR 72205
501-224-0021 or (outside Pulaski County) 800-689-6090
FAX 501-227-6303
Web Site: http://www.alzark.org

Why does my elderly parent sleep all day?

As people age, they tend to sleep more lightly and often awaken during the night from achy joints or the need to go to the bathroom. Many people compensate for this lost sleep by catching a restorative nap during the day. That’s normal.
Daytime sleeping becomes a problem when an elder spends the majority of the day dozing in a chair rather than engaging in life. People with dementia seem especially prone to this type of daytime sleeping, sometimes losing interest in meals and even failing to notice that they need to use the bathroom.
Boredom, depression, chronic pain and/or nutritional deficiencies can be some of the underlying causes that account for excessive daytime sleeping. Medications can also be a problem. If you want your loved one to stay awake more during the day and hopefully sleep better at night you may likely need the help of the physician.
A doctor can determine if depression, pain, vitamin deficiencies or medications could be at the root of this daytime sleepiness. If the doctor’s determination is simply that your loved one is bored, then you’ll need to find ways to stimulate his or her interest in life. Often, that means some socialization through visitors, attending events at a senior center or even adult day care.
Atypical (second generation) antipsychotics are notoriously bad for most elderly patients. If your loved one is on one of these medications, have a serious talk with the physician. There was a time when these drugs were widely used, but now they are typically prescribed for elders only when nothing else is effective.
While antidepressants can be a blessing, finding the right one can take time and sleepiness can be a side effect of many of them. Other common medications such as blood pressure drugs can also cause people to nod off. If your loved one is sleeping too much during the day, ask the doctor to review the medications and see if an adjustment can be made.
Untreated depression can also be the cause of daytime sleepiness. Some doctors think that depression is highly under diagnosed in our elderly population, so having your loved one checked for depression by a qualified doctor is important.
Then, there’s simple boredom. As people age, they may suffer from chronic pain. They may struggle with reading or puzzles because of poor eyesight. They get tired of TV. These elders may not be clinically depressed, but with no schedule to keep and not much going on in their lives, they slide into the habit of napping most of the day.
Adult day care (ADC) can be a help to people who want to preprevent a loved one from sleeping during the day. Needing to adhere to a schedule such as being ready for the ADC bus can alone be very helpful. Once your loved one has arrived there will be professionals and peers to keep things lively.
After a few hours at ADC, your loved one may be much more apt to be tired in the evening. If ADC isn’t an option perhaps hiring someone to come in during the day to provide companionship and some day trips may help your loved one maintain an interest in life.
Your goal–determine why your loved one is sleeping all day. If a physician says he or she is nearing the end of life, it’s up to the family to accept that fact, comfort their loved one and not try to provoke them into activity. However, in the many instances where medication, depression or boredom are causing the problem, medical help and scheduled entertainment may be the answer.
Don’t try to solve the problem alone. Ask for help from physicians, friends and other caregivers. By doing so, you’ll at least get support in your caregiving, and you may find a workable solution.
Fortunately some individuals can still work or volunteer part time. Its possible to see behavior begin to change. Your loved one may stay awake for longer and longer periods of time. 

Carol Bradley Bursack

Care for Caregivers When Friendships Faulter

Those who care for loved ones with Alzheimer’s disease or a related disorder are most fortunate if they enjoy the sustained support of others through-out the long course of the disease. Even the closest relationships may be tested to the limits in such difficult circumstances. A common refrain among experienced caregivers is. “You certainly find out who your friends are!” This familiar remark has a couple of different meanings.

A common refrain among experipenced caregivers is: “You certainly find out who your friends are!”
First, there is gratitude for those rare persons whose loyalty endures through thick and thin. Their help is expressed by listening, responding, laughing, crying and knowing when to act tough or be tender. Their countless acts of kindness do not go unnoticed. Their presence may make the difference between hope and despair for the caregivers. Such friends may truly serve as a life line.

On the other hand, caregivers feel a terrible loss when persons expected to be available begin to drift away – relatives, neighbors and long-time companions. As persons with dementia become more impaired, caregivers tend to need more support. However, the circle of support too often shrinks or disappears altogether.

Must caregivers accept this reality? Yes, sometimes. But must they also settle for loneliness and isolation or should efforts be aimed at reacting positively to a troubling situation? As a rule, actively coping is better than simply moping. The following ideas may be useful when friendships begin to falter.

• Since it is safe to assume that others are usually ignorant or afraid of dementing illnesses, do your best to educate them. Explain how the disease has affected your loved one and how you have dealt with the myriad of symptoms. Pass along some educational brochures or books.

• Inform others of how the disease has affected your lifestyles. What changes have taken place’ How do you feel about the situation?

• Provide details to others on how they may be of assistance. What are your needs and the needs of the person you care for? Grab their attention by being specific.

• If others do not respond to this kind of information, it is best not to press further. Too much precious time and energy may be wasted on futile efforts and ongoing disappointments. Yet keep channels of communication open if at all possible. In other words, free yourself from some unrealistic expectations and cut your losses.

• Attend meetings of a support group. Group members inform and encourage each other on the many facets of Alzheimer’s disease and related disorders, including ways of coping with strained relations.

• Nurture other existing relationships and develop new ones that may blossom into lasting friendships.

• Finally, show appreciation for those who manage to hang in there with you over the long haul. No matter how little or much they may be able to stand by you and your loved one in this time of need; they embody the meaning of friendship.

by Dan Kuhn, A.C.S.W
(Rush Alzheimer’s Disease Center)

Distributed By:
Alzheimer’s Arkansas Programs and Services
201 Markham Center Drive ~ Little Rock, AR 72205
501-224-0021 or (outside Pulaski County) 800-689-6090
FAX 501-227-6303
Web Site: http://www.alzark.org

Sleep Problems

“My husband used to get up often at night and was very confused. I finally got him to rest in his recliner in front of the TV and he calmed down and fell asleep. He seems to feel more secure there.”

• Create an atmosphere that encourages sleep. Try a warm bath, soothing music, warm milk, comfortable blankets and pillows, low lighting.

• Be sure the person gets exercise during the day, especially if fresh air is involved, as weather permits. Try to limit daytime naps.

• Limit caffeine intake during the day – switch to decaffeinated coffee, tea or soda. Be sure to take the person to the bathroom just before bed.

• If they become restless at night, reassure and coax them back to bed when possible. If restlessness continues, you might try resting them in a comfortable chair with the radio or TV on softly. Some people with AD find a recliner more secure for sleep then a bed.

• Place a nightlight in the hall and bathroom to provide the person with visual cues to help guide them to the bathroom and back.

• Keep the bedtime routine and morning wake-up time part of the person’s regular schedule.

• Use medications with caution. Consult with your physician for suggestions on sleep-aids. Some over-the-counter remedies may make the person drowsy during the daytime and disrupt normal sleep/wake patterns.

by: Joseph and Kathleen Bryan Alzheimer’s Disease Research Center (ADRC)
Duke University Medical Center

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Distributed by:
Alzheimer’s Arkansas Programs and Services
201 Markham Center Drive, Little Rock AR 72205
Phone: 501-224-0021 or 800-689-6090
Fax: 501-227-6303
Website: http://www.alzark.org