Hopeful Goodbyes

I looked out of my office window the other morning during “drop-off” time for Charlie’s Place. The driver, his wife's dedicated caregiver, gently leaned over before she got out of the car and kissed her. They would be separating for the six-hour time at Charlie’s Place and this affectionate gesture was not uncommon.

It reminded me of one of my favorite Shakespearian Plays, Romeo and Juliet, at the familiar balcony scene when they are parting for the evening. “Good night! Good night! Parting is such sweet sorrow, that I shall say good night till it be morrow.”

What sweet sorrow it must be for our married couples...one who has Alzheimer’s and one who is caregiving. What unimaginable sorrows they must feel all the time, not only with a kiss goodbye, but with a whole myriad of sorrowful goodbyes...goodbye to our planned retirement…goodbye to knowing and not knowing...goodbye to every spontaneous or orchestrated life moment…goodbye to time lost.

But, the kiss of goodbye, just like Romeo and Juliet’s, is full of hope… “that I shall say good night till it be morrow.” What happens tomorrow? What pleasures will ensue for us? What gratitude in us or spark of motivation can be awakened if a spouse remembers my name, or smiles at me, or even utters a simple, "Thank you?"

A well-known spiritual writer and speaker, Joyce Rupp, talks about sorrow and goodbyes in her book, "Praying Our Goodbyes." In it, she writes, "Although life is difficult and always has its share of sorrows, life is also very good and deeply enriching. It holds promises of growth and treasures of joy. It is not easy to believe this when we re hurting greatly because of our loss. Sometimes it takes years to understand and accept this truth."

Rupp continues, " Sometimes goodbyes still overwhelm me, but my questions are changing. Instead of asking 'Why me?' I much more readily ask 'How?' --How can I move gracefully through the ache of the farewells that come into my life? I also ask 'Who?' -- Who will be with me in this process? -- because I know that I cannot go through intense leave-taking without some kinship and some loving support to sustain me."

I am the first one to tell another that I absolutely hate goodbyes. But, I agree with Joyce Rupp's perspective in her writings: "Hello always follows goodbye in some form if we allow it. There is, or can be, new life, although it will be different from the life we knew before." Goodbyes transform us, awaken us, renew us, bring belief to us, and foster hope and growth in us, in the same way that hellos can. We are, in some fashion, always saying goodbye to some parts of life and hello to others.

At the end of the day, he picks her up from Charlie's Place and she finds her way in the front seat, and before he drives off, she leans over and gives him a kiss. "Hello," she says.

He tenderly reciprocates, and though I'm not in the car as he drives out of sight, I can only imagine how that hello brings so many possibilities of something new and wonderful in their life that can, for a short while, mask the sorrows of Alzheimer's disease.

This Romeo may have felt the sorrow of goodbye, in one way or another, when he dropped her off in the morning at Charlie's Place, but the happy hello from his Juliet when he picked her up in the afternoon was enough to last him "till it be morrow."

By Dana Territo, Director of Services

Charlie’s Place Consulting is Underway

In August, we began working with our first Adult Day Health Center in the New Orleans area to help them operate more like Charlie’s Place.  Activities really make a day center thrive. The facility we are working with wanted and needed a refreshing change in their programming. 

We have introduced the Recollection Collection activity kit in their center and the clients are enjoying it very much. We have also updated the facility’s daily calendar to include more music therapy, social interaction, and mental stimulation activities.  

Stay tuned for more updates as we continue to implement the Best Practice Respite Center Model around the state. 

Effie Marcantel, Program Coordinator

WANTED- AMBASSADORS FOR ALZHEIMERS SERVICES!

Are you passionate about the work of Alzheimer’s Services?  You can be an Ambassador!

           

An Ambassador is a person who is passionate about the work of Alzheimer’s Services of the Capital Area and will open doors for our organization in the community, introducing new people through Cause to Remember (CTR) sessions. 

Duties and Responsibilities of an Ambassador:

• Attend at least one CTR each year
•  Host or bring ten to fifteen guests to the CTR annually at Alzheimer’s Services or your home or office.
•   Informs guests that they will receive a follow up call from the organization.
•  Attends at least one function or event hosted by the organization as desired
• Recruits one of their guest to be the next Ambassador.
• Commits for one year or until they have invited 10 guests to a CTR.

Cause to Remember (CTR) sessions are free, one hour, informational luncheons held monthly designed to create awareness about the organization and the work we do.  A light lunch is served, as well as a tour of the facility and a tour of Charlie’s Place, our adult respite center.  CTR’s are held at our location at noon or may be held at your home or office. 

In-house CTR dates:

2013 Cause to Remember Dates:  September 13, October 11, November 8

2014 Cause to Remember Dates:   Scheduled dates for 2014 will soon be posted on our website

We can schedule a time that fits your schedule.

Help us spread the word that Alzheimer’s Services of the Capital Area is a local non-profit serving the 10 parish greater Baton Rouge area dedicated to helping families who are affected by Alzheimer’s disease.  Providing “person centered” care and the most comprehensive array of programs and support to professionals and families affected by the disease.  

If you feel you are a candidate to be an Ambassador, please call 225 344-7494 or email alzdev@alzbr.org  and I will be happy to answer any questions you may have and set up your first CTR session. 

Debbie Kidder Little – Development Director

Battling Bathing

Dementia is a disease that is ever progressing. This disease process may be slowed down or plateau for a while but will eventually continue to progress. As the disease progresses an individual will need more assistance with basic activities of daily living. A sensitive and personal task that most caregivers and individuals with dementia seem to struggle with is personal hygiene, particularly bathing. Tending to personal hygiene can be exasperating for caregivers and is often a source of anxiety for individuals with dementia. For some caregivers, bathing can be the most frustrating activity faced because of the fact that it is a private and personal task. For an individual with dementia bathing can be perceived as a threatening or simply unpleasant experience. The list below describes some reasons bathe time can be a difficult time but it also gives suggestions to managing the difficulties.

Tips to keep in mind:
 

• Doctors recommend older adults shower or bathe a minimum of twice a week to reduce the chance of infection (such as UTI). If you can get them to bathe more, kudos to you. If not, be satisfied with twice a week.
   
• To combat the “NO’s” try to make it seem as if the request is just a routine part of daily life as in, “It’s Tuesday morning. We always take our bath on Tuesday morning. Let’s go get cleaned up, and then I’ll make you a nice breakfast.”
   
• Have everything ready (soap, shampoo, towels, and washcloth) in advance, all laid out ready to go. The room temperature is warm, maybe soft music is playing. You say something on the order of “your bath is ready for you. Here, let me help you with your shirt. Start helping, turn the water on in the tub and temper it and say something like “madam you spa awaits you.”
   
• If there is no other way to get them to bathe. Ask their doctor to write on a prescription pad something like this: “Mr. Smith must bathe two times a week for infection control”. Make several copies of the prescription (in case they tear it up). Show the prescription to them and say “Doctor’s orders.” 
•  
• The bathing should take place at the time and in the manner the person always used to bathe, meaning if they were a morning bather, then you should have them bathe in the morning. If they were a shower person, then they should have a shower, not a bath, unless medical or physical reasons preclude that.
   
• Some persons with dementia actually grow afraid of the water, especially water coming out of a wall mounted shower head. It becomes threatening to them. If this is the case consider getting a flexible hand held shower head. That way you or your loved one can control where it sprays on them.
   
• Allow your loved one to do as much as they possibly can to wash themselves while in the bath. If they can do a credible job on their own with just reminders from you to wash here and there, let them do that. Even if they don’t do a credible job and you have to redo the washing, I suggest you have them wash themselves first. It gives them “ownership” of the task and gives them something to be successful, even if all they can do is hold a washcloth while you do everything else, let them do that. At least they are participating in the task as much as they can.
   
• Some people need to be distracted with something while you give them the bath or shower. Distractions that could be used are singing in the shower, giving them something colorful to hold and look at while in the shower.
   
• Some people are extremely modest, be aware that that may be the reason for saying “NO”. Respect their dignity by allowing them to cover up with something while in the shower. Perhaps a towel or a sheet or even a poncho. Just wash under whatever they use to cover up.
   
• Safety comes first. There need to be grab bars positioned for them to hold on to while getting in and while bathing and appliqués on the shower or tub floor to give them traction under their feet. If the person is scared to get into the tub because they have to step over the tub wall, try using a “transfer board”. It is a fairly long straight plastic board that you place in the tub with one set of legs outside the tub and the other set of legs inside the tub. Your loved one sits on the outside part and you help slide to the inside part.
   
• ALWAYS PRAISE AND COMPLEMENT THEM AFTER THE BATHING IS DONE. After the bathing is completed and your loved one is dressed, PRAISE AND COMPLEMENT THEM and ask them to cross off that day on a yearlong calendar showing the year by months. Have them do this every time. Eventually you will have visual proof that they have taken their shower or bath every Tuesday and Friday (for example) for months and that it is a normal thing to do. It also squashes the “I took a bath/shower earlier today or yesterday” protest. 

When you are helping someone with dementia to wash, it is important to be sensitive and tactful and to respect their dignity. Caregivers are not there to change an individual’s routine to fit the caregiver; the caregiver’s goal is to assist an individual in activities that will give him or her, a quality of life.

Can We Talk?

Communication with individuals with Alzheimer’s can be tricky. They can easily get frustrated at our misunderstanding of their needs and our patience is regularly tested because they misunderstand our understanding of what we are trying to communicate to them. Huh? Exactly!

I can’t imagine their world. Words are floating around in their heads with no form of sequence or destination. We are challenged to put these jumbled words into some sense of uniform and comprehension. We become like Johnny Carson’s “Carnac,” mindreading our way through the myriad of supposed answers they give us of which we must search for the original question. Frustrating to say the least.

Short and simple. Individuals with Alzheimer’s need about 16 seconds to process what we are trying to convey to them, and they need us to convey that dialogue is short, simple sentences and/or instructions. It’s lunchtime. [Pause] Let’s go to the table. [Pause] Here’s your sandwich.

Use familiar words and/or phrases. Watch their body language and gestures. Know their particular mannerisms and routines. Listen, listen, listen. “I want to go home,” may mean that they are restless and bored, they need to go to the bathroom, or they just simply need some comfort and security. Talk with them in their present moment. Allow them to take YOU on a journey of conversation and just ride that discourse.

Moreover, the way we say something has an impact of their understanding, too. Are we communicating in a kind and loving tone of voice, or are our words projected with undertones of frustration, anxiety or anger? Individuals with Alzheimer’s have a very keen sixth sense, so to speak, and quickly pick up when we deliver a language to them that less than desirable.

It’s all about learning a language of Dementia, and after awhile, it does get easier, as long as we understand that great communicating comes with great compassion and patience. It’s so important to maintain dialogue with the individual with Alzheimer’s, otherwise, they become and they feel isolated and the disease can easily progress more rapidly.

The beauty of this dialogue is the history we discover in every individual we care for and encounter. Their brains have stored, for the most part, wonderful life stories of which, we, the recipients, can find so stimulating, rewarding, and oftentimes, very educational. Lend a listening ear. Delve into that foreign language of dementia and awaken that person whose words are separated by a disease unique to every individual. Communication is a two-way street, and even though individuals with Alzheimer’s are going just one way, we can assist in guiding them with the right signs and gestures. It’s worth the effort for everyone.

-Dana Territo, Director of Services

Summer Safety Tips

Summer Safety Tips

The pleasures of summer include longer, warmer and sunnier days, celebrations with family and friends, and backyard BBQs. For the person caring for a loved one with Alzheimer’s disease, summer can also bring with it additional safety challenges. By taking a few minutes to review the following safety tips, families can enjoy a fulfilling and pleasant summertime together.

Sunshine and Warm Weather

• Exposure to the Sun – Limit your loved one’s exposure to the sun. Place comfortable lawn chairs in shaded areas. Encourage her to stay indoors between 10:00 a.m. and 2:00 p.m. when the suns rays are the strongest. Encourage your loved one to wear a hat and sunglasses to protect her eyes.
• Sunscreen – Remind your loved one with Alzheimer’s disease to apply and reapply sunscreen when outside for long periods of time. Spray-on sunscreens are now available and may make application quicker and easier.
• Hydration – During the summer heat it is especially important to drink lots of fluids. Offer the person with Alzheimer’s disease a small glass of water to drink hourly, or keep a cool glass of water within arm’s reach as a reminder to him to drink. Provide non-alcoholic beer or lemonade for backyard BBQs.
• Appropriate Clothing – As the summer season is getting underway, think about reorganizing your loved one’s closet. Put away winter clothes and replace them with light clothing appropriate for the season.
• Emergency Prep – Enroll in or if necessary, update information with the Medic Alert® + Alzheimer’s Association Safe Return®. Extreme summer temperatures can put your loved one at greater risk should she wander and become lost.

Summer Fun

• Noise and crowds of people can cause a person with Alzheimer’s disease to become agitated or wander in search of a quiet place. Fireworks displays, parades and picnics in the park on holidays may overwhelm your loved one. Consider watching fireworks from your home or in the quiet of the car and parades on television; picnic during less crowded hours and days.
• Backyard BBQ’s and fireworks can create a fire and safety hazard for your loved one with Alzheimer’s disease who does not remember the proper use for such items. Never allow unsupervised access to open flames and hot surfaces.
• Attending a minor or major league ballgame may be something your loved one has always enjoyed. However, large crowds can be overwhelming for the person with Alzheimer’s disease. Identify someone in your group to be the designated “buddy” so you don’t lose track of who was supposed to stay with your loved one. Make sure someone always accompanies your loved one to the restroom and the concession stand and stays with them until they are ready to return to their seat. In large crowds the risk of being separated is great and can happen very quickly.
• Swimming may be a favorite pastime for your loved one with Alzheimer’s disease. While the physical exercise should be encouraged, do not allow an individual with Alzheimer’s disease to swim unsupervised, and do not leave children in the pool under the supervision of the person with Alzheimer’s disease even for a short period of time.
• Bicycling can be an enjoyable way to exercise in the summer, but traffic and other external stimuli can cause a person with Alzheimer’s disease to become distracted, resulting in an accident. If your loved one still enjoys bicycling, consider accompanying him on the ride or ask a trusted companion to accompany him. Encourage your loved one to wear a helmet and to ride on trails designated for pedestrians and cyclists.
• Gardening can be a pleasurable and relaxing activity but can also pose risks for the person with Alzheimer’s disease. Keep an eye on sharp gardening shears or tools and closely monitor their use. Use fertilizers that are not harmful if swallowed accidentally and ensure that the plants in the garden are not poisonous.
• Family reunions can be overwhelming to the person with Alzheimer’s disease and may rely greatly on her ability to recall names and faces. Consider limiting the amount of visitors and prepare both family members and the person with Alzheimer’s disease in advanced for the visit. Have a back up plan that will allow for a quiet place of rest if things become overwhelming or confusing.
• Many families plan vacations and trips during the summer time. Remember that new and unfamiliar places can be confusing for the person with Alzheimer’s disease. Consider simplifying travel plans or traveling to a familiar destination. Alert the Medic Alert + Safe Return registration line of your travel plans and provide them with contact information for your destination.

Summer Tips for Visiting Relatives with Dementia

When visiting relatives this summer, remember that Alzheimer’s disease can have a big impact on every member of the family including children. Each child will react differently to someone who has Alzheimer’s.

The young people in your life might have questions about what is happening. It’s important for you to take the time to answer these questions openly and honestly. It will also help to share with them the changes the disease might bring, now and in the future.

Your local Alzheimer’s Association can help you answer questions and provide information about how the family can work through the changes brought on by the disease. Here are some tips for helping children and teens understand Alzheimer’s disease:

• Keep lines of communication open
• Answer questions honestly
• Teach your child about the disease, the symptoms and the stages
• Let your child know these feelings are normal
• Create opportunities for your child to express his or her feelings
• Prepare your child for changes
• Let your child know reactions of the person with the disease are not his or her fault
• Inform your child’s teacher and school counselor

Activities children can share with the person who suffers from dementia:

• Bake cookies
• Put a puzzle together
• Play Hangman
• Color or draw pictures
• Make a scrapbook of family photographs
• Read a favorite book or story
• Eat a picnic lunch outside
• Watch your favorite TV show together Listen to or sing old songs

MALE CAREGIVING

As a man providing care for a parent, spouse or other loved one, you may face unique challenges. But there are things you can do to make caregiving easier. Here are some tips that will help you succeed.

Know that you are not alone. Our society tend to view caregiving as a female role. But in fact, men make up nearly 40% of family caregivers. Mean can be very successful in this role. Community resources can help you be the best caregiver possible.

Ask questions. Get as much information as you can about your loved one’s condition. Find out what types of care your loved one will need both now and in the future. Talk to health professionals and other care providers.

Be open to new skills. You may have to learn to shop, cook, clean or do ther household tasks that are new to you. You may need to learn to bathe or dress a loved one. At first, you may feel uncomfortable doing these things. But over time it will become easier.

Ask for help! A friend or relative may be able to help you learn new household tasks. A visiting nurse or home health aide can help you learn to provide personal care. Find out about community resources such as adult day care or transportation services. If you work, ask about employee assistance programs for caregivers.

Learn to delegate. Decide which tasks you want to do yourself. Get help with other tasks. Try meal delivery, a cleaning service or online grocery shopping.

Take care of your own health. You cannot take care of a loved one if you feel sick or tired. Make sure that you are eating well and getting enough rest and exercise. Take regular breaks. See a health care provider if you are depressed, drinking more alcohol than usual, or using prescription drugs to help you cope.

Find support and male role models. It is normal to feel strong emotions such as grief, anger and helplessness. It is not a sign of weakness to feel or express these emotions. If possible, spend time with other men who face similar challenges. This may help relieve stress. Share your feelings with a caregiving class or support group.

Take pride in your role. Male caregivers are becoming more common. But you may find people react to a male caregiver differently than they do to a female caregiver. This can happen even in hospitals or nursing homes. Use the opportunity to educate others about your role as a competent, caring provider.

Alzheimer’s Services of the Capital Area will be hosting a Lunch-N-Learn Sessions for Male Caregivers on Wednesday, June 12th, 2013 and Wednesday, June 19th at 3772 North Blvd., Baton Rouge, Louisiana. The presenter is Mike Buchart/Male Caregiver. All Lunch-N-Learn programs begin at noon and last one hour. Light lunch is served and registration is free. Please call Katherine Schillings at Alzheimer’s Services, (225) 334-7494 Ext. 13, or email programs@alzbr.org to reserve your seat.

-Ed Picard, Respite Center Coordinator