Jane Eckels is the Clinical Services Director. She can be reached at firstname.lastname@example.org or by calling 1.800.272.3900.
How to Handle Difficulties with the Familiar Task of Eating
Nutrition is very important for overall health and vitality. Your loved one with memory loss should try to maintain their ideal body weight. When looking at nutrition and food intake, there are several things that one should consider.
One area to consider is weight. This should be discussed with the physician at each office visit. Significant weight gain or loss is defined as a change in weight of five percent over one month or ten percent over six months. Keep a written record of the weight each month so that you are aware of any changes in weight or patterns of weight. This will also help you to understand the normal range of the person’s weight. Most of us do not weigh the same each day and may fluctuate five to seven pounds, this is usually fine. If the weight fluctuates more than five to seven pounds, it should be something that is discussed with the physician at the next visit.
Another area to consider with nutrition is hydration. As a general rule, most dieticians state that we do not drink enough water. Some estimates range from forty to sixty ounces of water should be consumed each day. This again should be a discussion with the physician. Water is very important in our overall health. It hydrates our skin and organs. It helps our balance and helps to prevent infections. It also helps the medications that we take, to dissolve and get to the areas of the body that they need to get to, to do the greatest amount of good. Talk to your doctor about what the right amount of water should be for you.
One area often overlooked in nutrition is the mouth and teeth. If your loved one is not eating well, it may be due to sores in the mouth or on the gums. It could also be due to infected teeth, if they have their natural teeth. Regular trips to a dentist are important – even for people with dementia. Many times it is difficult for people with dementia to be able to identify where it hurts. If there has been significant weight gain or loss, dentures may not be fitting properly and this can cause irritation and sores in the mouth.
Sometimes medications can interfere with nutrition as some are bitter and can leave a bitter aftertaste. Drinking extra water when taking meds can sometimes help to wash that taste away. It is also important to read the label on the medication, as some cannot be cut in half or crushed. If your loved one has difficulty swallowing pills or taking meds, this should definitely be a discussion with the doctor. Some medications come in liquid form and are much easier to take. Some medications may have a side effect of suppressing appetite and some have a side effect of increasing appetite. So, if there are changes in weight, ask the doctor if it could be a side effect of one of the medications.
Persons with dementia feel most comfortable and safe with routine. This extends to meal times as well. The meals should be at approximately the same time each day. The routine for the person with memory loss may help them to anticipate eating a meal and thus help them to be hungry at meal time. Knowing that mealtime is coming soon may also help to avoid snacking between meals.
If your loved one has difficulty swallowing, you must notify the physician about it. There are swallowing evaluations that can be done that could help to determine why there is a problem. It may mean that you will need to offer softer foods or foods that are of a thicker consistency to prevent choking. These issues are serious and it is important that they be addressed, so that your loved one can get the nutrition they need.
Sometimes what is needed is a little more awareness on our part as the caregiver. For example, instead of offering a knife, fork and spoon at each meal, just set the table with a fork or spoon. One utensil is much simpler and they will not get stressed trying to decide which one to use. Cut up large pieces of food for them. If your loved one is embarrassed by this, cut the food up on the plate before taking the plate to the table. Try to mash up some foods that can be mashed. Be sure to add salt, pepper, and seasoning to the food before giving it to them. Some meats and other similar foods are difficult to chew at times. Be sure they are cut up in small or smaller than bite size pieces, especially if your loved one has a habit of putting too much food in their mouth. If your loved one is overwhelmed by the food, try just giving them one food at a time. Scientists tell us that our sense of taste for sweets stays strong. Perhaps with physician approval, adding honey or syrup on foods may help to improve consumption.
If your loved one lives alone, there are home delivered meals in most areas. Some home health agencies also offer home delivered meals. This may be an option for people who get so tired by the cooking and meal prep that they cannot eat after they have the meal cooked.
If you have questions about nutrition and need assistance with any of the items discussed above, talk to your physician, or ask your doctor for a referral to a dietician. These are people especially trained to help you to benefit the most from the food you eat.
If you have questions about dementia or memory loss, please contact us at the Alzheimer’s Association. We have people especially trained to help you to benefit the most from the education, information and assistance so that you can be empowered to live the best life possible.
Contact us day or night
1-800-272-3900 or alz.org
Gardening May Improve Your Caregiver Skills
Even though the above sentence may cause you to pause, it may be true. In a book entitled, A Calendar Year of Horticultural Therapy, How Tending To Your Garden Can Tend To Your Soul, the author, Janice Hoetker Doherty offers many tips that have the benefit of helping persons with dementia and their caregivers. She writes that horticultural activities can play a major role in improving coordination, mobility, endurance and conditioning. Later she argues that working with plants or looking at a garden from one’s room adds to the general positive, relaxed attitude of a patient. Ms. Doherty has worked as a horticultural therapist. Don’t let the word scare you. She explains in her book, a “horticulturist” tends to the needs of plants and has as its main focus the health of that plant. The focus of a “horticultural therapist” is one who focuses on the well-being of the participant performing those acts of watering, feeding or re-potting a plant.
Horticultural Therapy is used as a therapeutic tool for:
Social development as it encourages interaction in a non-threatening environment
Psychological development as it improves self-esteem and stimulates the senses
Physical improvements such as to help maintain coordination
Cognitive development such as the use of simple directions for project completion and cognition
Visual stimulation encouraged looking at brightly colored flowers or pictures of flowers
Tension and Stress relief as demonstrated by lowering of blood pressure and heart rates
Joy by experiencing different textures and reminiscing about pleasant memories those fragrances bring to mind
Janice Hoetker Doherty notes in her book that, “Although the Alzheimer patient may have difficulty expressing their thoughts in the spoken word, they can communicate in many other ways through their love of gardening”. She believes that activities when gardening can involve listening to the birds, watching the butterflies etc., so that the spoken word does not need to dominate the visit. The quietness has less stress for the person with dementia and their visitor or caregiver.
Some people lack enthusiasm for physical therapy but by using plants, can achieve the same motor skill or muscle rehabilitation, according to Ms Doherty. The colors, textures and fragrances of plants and flowers are used for stimulation. Herbs and flowers provide all three of these elements. She also states that smell is directly related to memory and specific smells immediately take patients back to their gardens or their mother’s gardens. It is the sharing of these stories and the laughter that often follows that aid in socialization.
In the book, she offers lots of ideas for gardening and for activities that use plants. Most of the projects can be done at home with a minimal cost of around one dollar. March is a great time to think about gardening and growing plants. The Dayton Home and Garden Show may be an ideal outing for caregivers and their loved one to come and see all the ideas offered by so many groups and companies in the Montgomery County area.
Janice Hoetker Doherty will be at the Home and Garden Show in Dayton on Sunday March 24 at the Dayton Convention Center. She will be speaking at 11:00am-11:30am and 4:00pm-5:00pm about her work and horticultural therapy. Please plan to join us for this exciting event. Details can be found in the Program Guide.
The Dayton Home and Garden Show will be held on March 22- 24 at the Dayton Convention Center. One of the speakers at that event will be Janice Hoetker Doherty. Please call the chapter office for information and a flier for two dollars off admission. One dollar of each ticket purchased with our coupon will go to the local Alzheimer’s Association chapter. We are participating in many ways at the Home and Garden Show. Please come join us.
Early Detection Matters!
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Why should I have my family member get tested for Alzheimer’s? There is nothing that can be done for them. The medications don’t cure it.
The above is an interesting question. We live in the information age. At any time we have access to all kinds of information on our computers, televisions, phones, ipads, etc. We constantly seek information about the world around us. We even have a rover on Mars to send us information every day!
What about information concerning ourselves? What about information concerning our loved ones? We are certainly more important to our loved ones than any information from Mars!
Someone once said that knowledge is power. Certainly knowledge about ourselves gives us power to make accurate, good, and healthy long-range decisions for ourselves and our loved ones. Physicians can make a diagnosis of Alzheimer’s based on medical and family histories, physical exams, evaluations, scans, etc. The tests are important because there are other conditions whose symptoms are similar to Alzheimer’s. Dr. Douglas Scharre Director of the Division of Cognitive Neurology of Ohio State University stated in a recent article, “A big problem in Alzheimer’s disease and research is that we’re not catching people early enough. . . the symptoms are there, but they’re not going in and telling their doctor about it”.
Early diagnosis has several positive outcomes.
1) Early diagnosis allows a person to prepare. This can mean making legal arrangements such as a living will, power of attorney for health care and finances and advanced directives. The information can also allow a person time to plan for one’s future care and living needs. Directly connecting with the Alzheimer’s Association is most effective with the early-stage patient as they may need more support due to the immense long-term impact. We are here to provide and enhance care and support.
2) Early diagnosis allows a person to participate in Early Stage programming. The Alzheimer’s Association of the Miami Valley offers early stage programming several times a month in the areas of education and support. We believe that with the right amount of information, education, and support we can empower all affected to live the best lives possible.
3) Early diagnosis allows a person to participate in research. According to Dr. Pugar, a neurologist with the Dayton Center for Neurological Disorders, “it gives a patient the opportunity to participate in research trials”. Trial Match is a service offered by the Alzheimer’s Association that is free and easy to use. The service connects individuals with Alzheimer’s disease, caregivers, healthy volunteers and physicians with current studies. There are approximately one hundred and thirty Alzheimer’s clinical trials that include both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted at five hundred trial sites across the country. This is a way to not just hope for a cure but help us find a cure.
Early diagnosis is important. We are here for you and we are here to help. Our vision is a world without Alzheimer’s disease. Call us at 1-800-272-3900 or find us at alz.org.
I have a limited number of T-shirts and sizes. . . .but, just for reading this Caregiver Tip you could win one of the T-shirts. Be one of the first six callers to call 1-800-272-3900 and ask for your free shirt from Jane. I look forward to giving you a T-shirt !!
Chase Those Blues Away!
A recent news article stated that the three weeks before the winter solstice, which is Dec. 21 and the three weeks after, can be hazardous to your health. The article stated that these six weeks are particularly troublesome for people who are sensitive to Seasonal Affective Disorder.
Seasonal Affective Disorder is, according to WebMD, a type of depression that affects a person during the same season each year. If you get depressed in the winter but feel much better in spring and summer, you may have Seasonal Affective Disorder (SAD). Experts are not sure what causes SAD, but they think it may be caused by a lack of sunlight. Some of the symptoms of SAD include feeling sad, grumpy, moody or anxious. It may cause a person to lose interest in usual activities. Some people report that they want to eat more carbohydrates, such as bread and pasta. Others report sleeping more and feeling drowsy during the day. It seems to occur more often in women than in men. People who live in places with long winter nights are at greater risk for SAD.
If you notice sadness or depression during the winter moths in yourself or a loved one, it may be caused by SAD. Any time of the year that you notice sadness or depression, it should be reported to the physician. There are medications and talk therapy that can help with sadness and depression. That is why it is always important to notify the physician first. The prognosis is usually good with treatment. Always get help right away if you have thoughts of hurting yourself or anyone else.
There are some things you can do to manage depressive symptoms at home, such as getting enough sleep, eating a healthy diet, exercising and looking for activities that make you happy. Do something you enjoy. When it is dark outside and you are penned up inside, it can be hard to think of happy things -- do it anyway!
What do you enjoy doing? Close your eyes and ask yourself, when the last time was that you smiled? What was it that caused you to smile? When was the last time you laughed? What caused you to laugh and be happy? Make a list of those things and try to do at least one of them each day.
Some people enjoy reading. Some enjoy looking at family pictures. Have you thought about talking to a friend? Can you reach outside the door and grab a handful of snow? How far can you throw the snow? Think back. What did you do as a child when left at home on a snow day? Call a grandchild or friend and tell them your memory. Take some time to write down your stories.
Usually people feel better when they do something for someone else. Could you bake some cookies for a friend or neighbor? Our first responders may enjoy a post holiday plate of good things to eat. Could you call someone who is alone? Could you donate some gently used hats and gloves that are clean to a local school?
If you are struggling with depression, talk to someone about how you are feeling. Try to be around people who are caring and positive. Get involved in life and activity. You get the idea. In fact there is a song that says “Forget you troubles and just get happy. . .chase those blues away”. Sometimes it is not as easy as singing a song, but when we do pleasant activities, it helps to make us feel better. Do something each day that brings you pleasure. It really does help us then, to forget the ‘troubles’, even for a short time.
Writing this article, the Caregiver Tip, brings me pleasure and I hope it helps you in some way. I welcome your thoughts or ideas for future tips.
For the past thirty years and for this New Year 2013, we are here for you. Please contact us at 1-800-272-3900 or alz.org/dayton.
“There is no place like home for the holidays”
These are the words to a familiar holiday song. When you are the out of town family member of a person with dementia, these times with families and togetherness can be a good time to take a closer look at changes that may be happening with your older relative. Sometimes the family living in the area, and seeing the person often, may not see subtle changes that may be occurring. This is a good time for out of area family members to take some time to look for changes.
A face to face meeting with a family member or friend can give lots of clues about how they are managing their day to day routine and how they are coping with losses and aging. This article will offer some clues as to what to look for and how to assess some of the items without making the friend or family member uncomfortable or defensive. Your role is to be the friendly cheerful person who comes to spread holiday cheer and help them to enjoy the holiday season.
Your visit might be a disruption to their usual routine, so try to help them to keep up their routine as best as possible. Routine provides security and helps persons with dementia to know what they need to do next. You will need to have realistic expectations as to what tasks and holiday traditions are still able to be done and what will bring pleasure to the person, while assessing what tasks may need to be changed, amended or not done this year.
The Caregiver Newsletter of the Duke Family Support Program outlines some specific things to look for. They suggest noticing obvious weight gain or loss, increased frailty, and body odor. They suggest in the article that these observations can be done as soon as you see the person and give them a hug greeting. It is your responsibility to be proactive and smart and report what you see to the doctor or other family members who may accompany your loved one to doctor appointments.
If your loved one is still driving, look at their car. Lots of small dents on the car can be an indication that they are having a lot of fender benders and may no longer be safe to drive. Do they get lost easily in the home, having difficulty locating various rooms in the home? If so this is probably happening when they are driving as well. If none of the above is present and the person is still driving, perhaps while you are visiting you could get the car serviced for them, or have the oil, antifreeze and windshield wiper fluids replaced or topped off. This would be a thoughtful ‘gift’ for anyone living alone.
When you adjust your expectations of the holidays, it may include doing only what you and your loved one can reasonably manage. For the person with dementia, less is generally more. The additional stimulation of lots of people, lots of lights and lots of noise is usually more than what someone with limited cognitive abilities can handle. This caregiver tip is giving you permission to change the traditions this year and start newer, simpler activities that are considerate of your loved ones abilities.
It is always a good idea to involve the person with dementia in the holiday preparations, as long as those are simple, one step at a time type tasks and do not overwhelm the person. Watch for boredom and also prevent them from getting overly tired if possible.
Many people ask for gift ideas for persons with dementia. The Alzheimer’s Association has a fact sheet that outlines some gift ideas. Call us for a copy.
Some ideas they offer are:
- Useful gifts such as Medic Alert/Safe Return bracelets, are a good idea, especially if your loved one wanders or gets lost easily. This is a twenty-four hour nationwide emergency response service for individuals with dementia that wander or who have a medical emergency.
- Other ideas include videos, photo albums with pictures and names of the people in the picture.
- Gifts to avoid include tools, utensils, complicated electronic equipment and pets.
- Gifts of time may be helpful such as spending an afternoon baking cookies with the person or just a friendly visit. Perhaps taking them out to eat or bringing a meal in from their favorite restaurant would be greatly appreciated.
- Gifts from friends might also include items such as a gift certificate for a cleaning service or in-home care service.
There is no place like home for the holidays to have the opportunity to get to know how your loved one is doing when you are not there and to have this time to share your love. Make the celebrations easy on yourself and the person with dementia. Use your visit as time to concentrate on enjoying your time together.
To learn more about the Alzheimer’s Association or the services offered, please call us at 1-800-272-3900 or check us out at alz.org/dayton.
On Nov 29 2012, Dr. Mary Mittelman will be coming to Dayton for an important education session for all care partners in the Montgomery County and surrounding area. Dr. Mittelman is a reasearcher who has been researching interventions for care givers who care for family members with Alzheimer’s disease. The Care giver tip this month is taken from her book, The Comfort of Home for Alzheimer’s Disease, A Guide for Caregivers.
In the book, Dr. Mittelman talked about the diagnosis of the disease from the perspective of the person with Alzheimer’s disease. Some of her suggestions may be helpful. She writes that not all people, when confronted with the diagnosis of Alzheimer’s disease, respond in the same way. Some do not seem to react, some may be relieved and others may become depressed. Dr. Mittelman suggests that those who do not show they care when given the diagnosis may actually be in denial.
Dr. Mittelman notes that it is not helpful to try to convince a person that they have a diagnosis of Alzheimer’s disease if they deny it. It may be easier for them to accept being told they have a memory problem. This can be helpful for some, as it gives us permission to not use the word Alzheimer’s, but to use a word that may be softer for the person to accept or to understand. As people lose their abilities, it is difficult for some who are acutely aware of the loss, to accept it easily. Sometimes the person becomes depressed. If depression is a possibility for your loved one, it is important that it be discussed with a medical professional so that supportive counseling and possibly medication needs may be addressed.
For others, hearing the diagnosis may be a relief in the fact that they have a name for what they are experiencing. For a person with memory loss issues, to know that there are others who also are experiencing the same things, and to know they are not alone is sometimes comforting.
The book, The Comfort of Home for Alzheimer’s Disease, A Guide for Caregivers, indicates that it is important for family members to focus on the remaining strengths of the person living with dementia. The family can encourage and support the person’s ongoing participation in family and community life. Alzheimer’s disease is often diagnosed in earlier stages and those people are now speaking out on their own behalf to seek support and services. As a family member, it is important that we encourage them to do this. Through discussion and sharing with our family members, we can try to understand the disease and understand the needs through their eyes.
Dr. Mittelman offers some tips on how to use a positive approach when misunderstandings or behaviors occur with the person living with dementia. She states that it is important to think about the situation from the perspective of the person living with dementia. When you are able to see the world from their perspective, ask yourself what would be the best way to help. Sometimes it means that we need to change our expectations and approach. The person with dementia has a great deal of difficulty making change. They cannot decide to change, so we must make changes by asking ourselves:
• Is it essential that I do this now?
• Is it essential that I do this at all?
• What is the person’s behavior telling me?
She points out that it is important that we “try not to get agitated when the person with dementia gets upset. Take a few breaths, stay calm, don’t raise your voice, or take personally anything the person says”.
YOU ARE INVITED TO SPEND THE EVENING WITH DR MARY MITTELMAN
SPEND THE EVENING with author and researcher Mary Mittelman, Dr. PH
HEAR ADVICE on best practices that will reduce caregiver stress, improve caregiver health and allow someone with dementia to stay in their home longer.
DR. MITTELMAN will share innovative ways to engage people with dementia and their family members in activities that are meaningful to both.
WHEN Thursday November 29, 2012
WHERE David H. Ponitz Center
Sinclair Community College
444 W. Third Street
Dayton, Ohio 45402
EVENTS 4:30 – 5:30pm Resource Fair
5:30 – 7:00pm Dinner and Program with Mary Mittelman Dr. P.H.
COST $10.00 per person, includes dinner
PARKING FREE garage parking below the David H. Ponitz Center (entrance off W. 4th St.)
REGISTER OPTION 1 Registration and Payment online at alz.org/Dayton, click on Education & Resource Forum Registration
OPTION 2 Call 1-800-272-3900
Getting the Best Results from Your Medicine
Many people today take many different types of medications for many different symptoms from many different prescribers. So. . . keeping track of all of this can be overwhelming. It is especially complicated if you not only need to keep track of your own medications, but those of others as well, such as parents or spouses.
In this article are several ideas to help you get organized about the medications. The first thing to get things organized is to KEEP A LIST. Write down the names of all the prescription drugs and any vitamins or over the counter medications you may be taking. While you are doing this, also keep a list of the doctors who prescribed each of the medications and the dosage. As new medications are added or stopped, keep the list updated. This is especially helpful if it is updated after each visit to the doctor.
The second thing to do to get organized is to CHECK LABELS. Check the label on each medication before taking a new or refilled medicine. When you do this, make sure the bottle has your name on it or the person’s name for whom the medication is prescribed. Make sure the directions on the bottle are written on the bottle the way your doctor told you to take it, such as once a day, only at night etc. Then, read the description of the medication on the bottle , such as small red, round pill, and make sure the medicine inside looks like what is described on the bottle. Always call the doctor or pharmacist if you have questions or something does not seem right.
The third area of medicine organization is to take the medicine the RIGHT WAY. Take the medicine in the exact amount that is listed on the label. Do not take more or less depending on how you feel. Take the medicine at the times the doctor told you to take it, such as one hour before meals, before bed etc. Never, ever stop a medication without asking the doctor first. There are some medications that can cause great harm if stopped abruptly.
The fourth way is to learn about the SIDE EFFECTS of your medications. Usually, written information about the medication comes with the prescription, but if it does not, or you have questions about the medicine, always call the doctor or pharmacist. If you begin to have side effects that you suspect may be from the medication, call the doctor right away. The doctor will be able to suggest another medication or offer hints to lower the side effects for you.
The fifth way to get organized about your medicine is BE SAFE. Never share or give friends or family medication meant for someone else. Do not take medication yourself that was prescribed for someone else. Do not drink any beer, wine, or hard liquor while taking a medicine unless the doctor says it is okay to do so. Do not take any medicine that has expired. Check the date on the label. Keep your medication and the medications of the person with dementia locked if needed to prevent accidental ingestion. Always keep medine out of reach of children.
Some questions to ask your doctor at each visit have been suggested by the National Institute of Health publication No 10-7348. These questions are helpful to discuss with your doctor when a new medication is prescribed.
What is the name of the medicine and why am I taking it?
What medical condition does this medicine treat?
How many times a day should I take this medicine? How much medicine should I take?
How long will it take this medicine to work? When should I stop taking it?
What should I do if I miss a dose?
Are there any side effects? When should I call you if I am having side effects?
Can I safely mix this medicine with the remedies, vitamins and over the counter drugs I am currently taking?
The information in this article should give you several ideas to help get organized about the medications you take or the medications you dispense for another person. Organization is the key. Always keep a list of medications, check the label, take the medication correctly as indicated, know the side effects and you will be safe. As new medications are added or stopped, keep the list updated. Also, take your medication list and list of questions to the doctor with each visit.
We are here for you every day, every hour of the day. Please call or email us. 1-800-272-3900 or alz.org.
Danger Lurks in Your Home
When you read the above sentence, what comes to mind? If I asked what room was the most dangerous in your home, what room would you say? Would you think of the garage? Would you think of the kitchen? Gary Barg, Editor-in-Chief of Today’s Caregiver magazine wrote that one room in your home has been the cause of death for thousands of people in the past year alone. Another writer states that one person in this county dies from injuries in this room every day. The room they are referring to is the bathroom.
A report by the Centers for Disease Control and Prevention (CDC) notes that in one year alone 234,000 people aged fifteen and older visited emergency rooms due to injuries suffered in bathrooms. Most of the injuries were caused by falls. Falls are the leading cause of injury death among older adults.
What can you do to prevent injury in the bathroom, since avoiding the room is out of the question? The best way to avoid the danger is to prevent it from happening in the first place. Here are some ideas to make the bathroom a safer place.
*Water is everywhere in the bathroom, but it can be especially dangerous when it is on the floor with a person walking around in bare feet. Use of a shower /tub mat may help. The use of slippers when outside of the tub can greatly reduce the risk of falling.
*Floors can be hazardous as well. The secret here is to keep the floor dry. Bathroom floors tend to be tile which may or may not be non-skid. Some tiles now come with a coating that may lessen the chance of having falls. There are some types of tiles that are designed for the bathroom that may be a safer alternative. Some have suggested a rubber backed bathroom rug, although any type of small rug can cause a person to trip and fall. Loose rugs throughout the house should be either tacked down or retrofitted with non-slip backing.
*Fixtures can also be dangerous since cabinets, faucets, etc. are not necessarily designed for function and safety. Some bathroom fixtures have pointed edges, and mirrors may not have framing or a shatter proof coating. Shelves and cabinets at the wrong height or placement may be responsible for head injuries.
*Showers and tubs may need to have grab bars installed on the walls and sides of the bathtub itself. Suction handle safety grips should never be used as these can sometimes work free. Grab bars should be securely fastened to the wall. Check the bathroom area to see if there is anything that looks like it could be “grabbed” such as a towel bar. If the item is not safe to be grabbed, such as not able to bear weight, it should be removed. Glass shower doors are not safe. If a person grabs onto the door for support, the glass door might not be able to bear their weight and break. Broken glass creates a situation for serious injury. A walk-in tub may make it easier for a person to get in and out of the tub and may be a safer alternative than a traditional tub. One may also want to consider installing a bathtub chair. These can either be a bathtub bench or a chair for use in the shower.
*Doors to the bathroom should remain unlocked and be left open. If the person in the bathroom would need assistance quickly, an open door makes access to them easier. The person in the bathroom can also be easily heard if they should call for help.
*Soap that is liquid may be safer to use than bar soap. If a person should drop the bar soap, it presents a potential danger for the person to lean over to pick it up. Soap on the floor of the tub or shower always presents a potential fall risk.
*Toilets present another risk for injury. Grab bars may be installed near the toilet, especially if the person has difficulty moving from a sitting to a standing position. Another adaptation could be installing a raised toilet seat. There are several types and styles available. Some have adjustable heights that may be helpful for some individuals. For some, a bedside commode may be a safer alternative.
*People using a bathroom may find that having full range of motion and good balance are helpful to prevent falls and injuries in any room of the home. It is important that everyone exercise regularly. The exercises should focus on increasing leg strength and improving balance. The Miami Valley chapter offers an excellent program called Reducing Disabilities in Alzheimer’s Disease that includes an exercise component. The exercise can be taught by one of our trained staff in the home or in a group setting that will be meeting in North Dayton beginning in Sept. Please call us for details.
Safety is important for all of us in all rooms of our homes. One article pointed out that if you are not taking precautions, then you are taking risks. Taking risks causes injury and falls. Please be safe.
If you have questions, concerns about this or any other matter related to dementia or Alzheimer’s please call us 1-800-272-3900 or visit us on the web at alz.org/Dayton. We are here for you.
I am happy to open our Caregiver Tip this month to a guest writer. Laurel Kerr is the Associate Director of Programs of the Alzheimer’s Association, Miami Valley Chapter. She has many years at the chapter as a Family Assistance Coordinator prior to her current position. Laurel has a Master’s Degree in Counseling and provides both the clinical and heartfelt aspect to her clients.
This article was written with significant input from Mark Levy, chapter board member, informed by his personal experience.
Assisted Living – Considering End-of-Life IssuesThis information is pertinent to anyone anticipating a move to or currently living in assisted living. It pertains to an issue that affects some, but not all, residents at the end of life.
This fact sheet has been prepared in hopes that knowledge and preparation will help to prevent surprise and increased distress related to care needs. Unfortunately, the very spiritual experience that we associate with end of life is not immune to administrative intrusions.
Many assisted living communities, memory care units or otherwise, offer and go out of their way to provide care through end of life with a few caveats such as the need for a ventilator or continuous-feed feeding tube, and hard-to-manage behavior that puts others at risk.
Hospice care is often provided as a way to maximize care and comfort at the end of life for residents of assisted living, as well as to meet the emotional needs of the family, just like it is in any other home setting.
There are times when the hospice patient may need and qualify for continuous care under Medicare or other health insurance. This is not available through the assisted living staff as part of their care as they are not staffed to provide this level of care, even in a memory care unit.
While continuous or crisis care may be available through each hospice organization, under Medicare crisis care is only available for a limited time and specific purposes. For example, if the patient’s condition stabilizes even temporarily, 24 -hour care may not be available. Unfortunately, notice that Medicare or health insurance will not cover or continue 24-hour care is often received in the midst of the end-of-life experience when the family is least interested in dealing with it. It is often difficult for the family because the family may want someone attending to the patient around the clock. Options for care when an assisted living resident needs more care than the assisted living community is staffed to provide and the hospice organization is authorized to provide by the funding source are:
1. Family and friends - With hands-on training and encouragement from hospice staff, this may be a viable option if there are people available and able to provide the required care, and the assisted living community agrees to the arrangement.
2. Paid caregivers - Through a home health agency, trained aides may fill thegaps in care at the rate of approximately $16-20/hour.
3. Nursing home – This option offers more intense medical care than assisted living on a 24/7 basis, at the rate of approximately $200-300/day. In some cases, this care may be covered through Medicaid. This is more likely to be the case if the resident is already benefiting from the Medicaid waiver for assisted living.
For more information, or for assistance in planning for next steps, please contact the Alzheimer’s Association 1.800.272.3900 or www.alz.org/dayton. We are here to help you!
Change: You can count on it!
You have probably heard the saying, “Change is the only constant”. If you are an active care partner, this applies to your role. The reason is due to the deterioration that is occurring in the brain of the person for whom you provide care. MRI and PET scans show us that brain cells die and the brain itself shrinks in size for people with the diagnosis of dementia. You may not notice any difference in your loved one’s functioning right away. Some people tend to “plateau” and there is little noticeable change for quite a while. At other times you may notice changes every day.
So. . . . To be able to cope with the disease as a care partner, we must attune ourselves to the early, small changes. This will then allow us to adjust and adapt the way we provide care.
When our loved one is stable and having very little change, we get comfortable and sometimes forget that they are not always going to stay in this particular stage. However, if they are in what seems like a long stage that is upsetting and chaotic, know that it is not always going to stay in this particular stage either!
As changes occur, they usually do not happen suddenly, because dementia is a slow, progressive disease. If there is a sudden severe change, it usually indicates a physical problem, such as pain or infection and the physician should be notified immediately. Usually a change occurs slowly, happening once or twice, now and then before it eventually starts to occur on a more regular basis.
Since dementia change occurs slowly, the secret is to notice and acknowledge the changes and prepare for the change as early as possible. There are several ways to prepare for this:
1) Read about dementia and the particular type of dementia of your loved one. Learn all you can about not only the current stage your loved one is in, but also read ahead about the next stage so that you will be aware when the new stage begins to appear. Your Alzheimer’s Association Miami Valley Chapter has many brochures and reading materials both hard copies and on-line information that is available to you. Check out alz.org/dayton or call 1-800-272-3900.
2) Attend a support group for care partners. In a support group, you are able to learn from the “experts”, the ones who have been on this path before you. They can relate lots of information for day to day care, how to cope emotionally, physically, and spiritually, and you will even learn some of their “tricks of the trade”.
3) Get connected with AlzConnected to be in touch with others for an on-line support group. You will get information, suggestions, and a “listening ear”. There are no specific times for these on-line groups so whenever you are available, others on-line are available too.
4) Call the 24/7 Helpline 800-272-3900 to talk to a trained care consultant who can help you and your family establish a plan for future needs, care options and information about what is available in your area to assist you and your loved one. This number is available all day and all night, so if you are up in the middle of the night and not sure what to do, please call. We will be happy to assist you.
Even though the change/symptom may be difficult to accept or talk about with others, it is important that you, the care partner, reach out to others. Utilize the resources mentioned above. The resources are available to help you and your loved one. Preparation takes away the surprise element for you. It also helps to “normalize” the change for your loved one and as a result your loved one may have fewer changing symptoms.
When you first notice a new symptom or behavior, make note of it. This was outlined in the June 2012 Caregiver Tip, outlining how to keep a log of behaviors, changes in mood and functioning with dates and times the changes occur. Take your log to the doctor visit as this is important information for the physician to know.
When new changes begin to occur, it is also the time to take a closer look at the many tasks the care partner is trying to do. Perhaps it is time to make a plan that will shift some of the care giving responsibilities away from the care partner. Perhaps just a few days a week of respite would be helpful, as it would bring new people into your loved one’s world, while at the same time, bringing an opportunity for rest to the care partner. There is not just one way to care for and love someone, but doing what is best for the health and safety of the person living with dementia and the care partner is always the right thing to do!
Change is never easy, especially for those living with, and caring for, persons with dementia. Education, assistance and information are the keys to keeping the person living with dementia and the care partner healthy. Education, assistance and information help the care partner to not only be successful but to know that they are doing what is best for their loved one.
We are here for you. 1-800-272-3900.
Managing a doctor appointment for your loved one with memory loss can be overwhelming. Many persons with memory loss do not like to leave their familiar surroundings. Sometimes while at the office, the doctors asks questions that we are not expecting and do not know what to say. Other times one may leave the office and then, on the way home remember all the questions and issues they wanted to point out to the doctor, but forgot to do so. With a little bit of planning and homework, prior to the appointment, you may find the experience a bit less hectic and a whole lot more informative for both you and the physician.
Many people mention how difficult it can be to physically take their loved one to a physician’s office. If your loved one is having difficulty leaving home and their familiar surroundings, there are physicians who come to the home to see their patients. This may be an option for you to explore.
Time of the day is important. While personal care and hygiene may take most of the morning to complete, most persons with memory loss do better in the morning. They are generally more alert, cooperative and rested. These are the three qualities much needed when trying to accomplish a task that your loved one may not be excited about doing. When making an appointment, talk to the receptionist about your loved one being more alert in the morning and perhaps they will be able to meet your needs.
After the appointment is set, but prior to the day of the appointment, you will want to start collecting some data. The data is collected each day by you. Write down what you see, and what changes are happening. Perhaps you could find time to do this first thing in the morning or prior to going to bed at night. This is information the doctor will need in order to be able to assist both you and your loved one with treatment modalities and medications.
The page on which you record your observations should have three columns. The top of the first column you would label “Changes in Health”. In this column, write the date and information about temperature, rash, nausea, pain, weight gain or loss, diarrhea, vomiting, incontinence, changes in sleep pattern, etc. It is important that you write down physical changes, such as how they are walking or getting about, and whether they are taking the medications that have been prescribed.
The second column would be for “Changes in Memory”. Here you would put the date and what you observed on that particular day, such as confusion, getting lost, misplacing objects, repeating things, forgetting words, easily agitated etc. Write down cognitive issues, such as repeated vocalizations, not remembering names of objects or of people that are close to them.
The third column would be “Changes in Behavior”. This includes mood swings, sadness, seeing or hearing things that are not there, and changes in sexuality. Keep track of behaviors such as easily annoyed, negative statements, verbal or physical abuse, and wandering.
Try to note when the changes that you observe began, how often the incident occurs and if the symptoms seem to be getting worse. Also note the time of day that you observed the symptoms and any behaviors that seem to occur at the same time each day, as this can give the doctor valuable clues as to how to help you and your loved one.
On the day of the appointment be sure to take the log with you to share and discuss with the doctor. Changes that you are noting need to be told to the doctor so that the doctor can make a determination if the change is due to the disease process or to some other factor. By having the log to help, you will be able to confidently state what you observed and when. This gives the doctor valuable clues as to the possible cause.
During the appointment,
• Discuss your log with the doctor.
• Ask the doctor where the person may be in the course of the disease.
• Ask what you can expect in the future.
• Ask the doctor about the level of care your loved one is currently needing and how to provide increasing levels of care as the disease progresses.
• Discuss how family members cope with the changes in the person’s ability to drive, to cook or perform activities of daily living.
• Discuss what the family needs to do to insure a safe living environment for the person with dementia.
While there is no cure, treatments are available that may help relieve some symptoms. Research has shown that taking full advantage of available treatment, care and support options can make life better.
Tell the doctor if you do not understand what they are saying. Ask them for more information if needed. Repeat back to the doctor what they tell you, so that you understand and remember the information. You can also write down what the doctor says.
After the appointment, review what the doctor told you. Follow up on their suggestions. Start a new page in your log for the next appointment. Keep positive and know you are providing your best to your loved one.
Always know that before, during and after your doctor appointment, twenty-four hours a day, seven days a week, you can call the Alzheimer’s Association for information, assistance or a listening ear.
We are here for you. 1-800-272-3900.
Share The Care Giving Chapter of Your Life Story
Your care giving story is important.This chapter of your care giving story needs to be shared with others.
Each and every care partner has a story. . .
. . .about how you came to be a care partner
. . .about why you continue to be a care partner
. . .about ways to be a care partner
. . .about your journey on the path of a loved one with dementia.
This chapter of your life is important because it is a story of ups and downs, highs and lows, good days and horrible days. Most importantly, it is a story about how you cope and how you are continuing to cope with one of the most prevalent and relentless diseases of our time.
Statistics tell us that one in eight older Americans over 65 has Alzheimer ’s disease. That is a lot of people needing care! The 2012 Alzheimer’s disease Facts and Figures reports that over fifteen million Americans provide unpaid care for a person with Alzheimer’s or other dementia. That is a lot of stories care giving stories – each one unique!
Your story needs to be shared. When sharing, one finds they are not alone. One finds that there are others who have a similar story or we benefit and learn from each other. Talk to your family – spouses and children, with friends, with anyone who will listen. Share with your children, it is important that they know what you do. You are an example to them of care giving in action, and they will learn to model the care they give to others by the examples you set and teach them. Share with your friends. Friends keep you healthy and friends help you to see things in perspective. Friends also help you to laugh and enjoy your time with them.
One great place to share what you are going through and how you are coping is with others in a safe and confidential location such as one of our more than twenty support groups in the area. This is a place to come together with other care partners and talk, listen to others and learn from others who may have already been down the same path we are now walking.
You may also put your thoughts and feelings into print. Some find that keeping a diary, or a daily journal helps. When writing down our thoughts and feelings, it allows time to think and contemplate. Write down the successes you have, or the changes you see. Some of your written information may be important to note to doctors or other health care professions.
Others have stated that they find an outlet for their story in writing poetry or in music. Whatever is comfortable and helpful to you is the right way to express yourself. One can also share their story at ALZconnected.org. Alan Mescher captured his family’s story in a poem, shared here with his permission.
The Long Good-bye
Written by Alan Mescher
Call it Alzheimer’s, call it dementia,
Call it whatever the term might apply.
They call on you, to summon the strength.
They call on you, for whatever the length, of the long good-bye.
-It tends to start with a blank stare,
Then they can’t remember your name.
Frustration on both sides,
Now tell me who’s to blame.
-Hopes, dreams and memories,
Locked up from what could be.
The hardest part must be accepted,
That you do not hold the key.
-This much is certain, let it not be forgotten,
And you will find it to be true.
All that needs to be remembered for mem’ries sake,
Is there inside of you.
Call it Alzheimer’s, call it dementia,
Call it whatever the term might apply.
They call on you, to summon the strength.
They call on you, for whatever the length, of the long good-bye.
The Alzheimer’s Association Miami Valley Chapter is here to listen to your story. We are here to be of assistance. You may call or email us and someone will be in touch with you. It all begins with you. Let others know your thoughts and how you are feeling, help yourself and others by sharing this care giving chapter of your life story.
Call 1-800-272-3900 or email email@example.com
The care partner tip this month is . . . . . . . .YOU ARE NOT ALONE! According to the 2012 Alzheimer ’s disease Facts and Figures report, you are one in fifteen million!!
Care partners, take note – over fifteen million Americans provide unpaid care for a person with Alzheimer’s disease or other dementia. Most of the care provided at home is delivered by family care partners. As you have probably already learned, the researchers noted that caring for a person with Alzheimer’s disease or other dementia is often very different from providing care for non-dementia persons.
Over half of care partners of Alzheimer’s disease and other dementias report providing help getting in and out of bed. About one third provide help with getting to and from the toilet, bathing, managing incontinence and feeding. Almost two thirds of care partners of people living with Alzheimer’s disease and other dementias advocate for their care recipient with government agencies and service providers. Nearly one half arrange and supervise paid caregivers from outside community agencies.
According to the 2009 Behavior Risk Factor Surveillance System (BRFSS) survey, Alzheimer’s disease and other dementia care partners were more likely to be older, averaging 52 years of age as compared to age 46 for other care partners. Of the care partners for Alzheimer’s disease or other dementias, seventy percent are female verses 59 percent for other non-dementia care partners. Another survey found half of care partners lived in the same household as the person for whom they cared. Thirty percent of the care partners had children under the age of eighteen living in the home with them.
When a person with Alzheimer’s disease or other dementia moves to an assisted living or long term care facility, the help provided by the family care partner changes. Yet many care partners continue to assist with financial and legal affairs, make arrangements for medical care and provide emotional support.
Some research suggests that care partners thrive in their helping role, while other research suggests that the chronic stress of care partnering may lead to health problems for the care partner. Difficulty maintaining a healthy life style, psychological changes, hypertension and high risk for cardiovascular disease can be the result of care partner stress. One study found that increased stress demands were associated with higher rates of mortality in both care partners and non-care partners. These findings suggest that it is the increased stress, not the care partnering that increases the risk of mortality.
The Alzheimer’s Association is here to help. We offer information, such as our program guide that can be found at www.alz.org/dayton, education, such as our First Steps programs and Essentials topics with profession CEU’s and support, such as telephone information and referral, or assistance provided by social workers who are available to assist with in home or phone consultations and our Care Partner Retreat. The Care Partner Retreat is April 27. It is a special day with other care partners that includes a delicious meal and socialization. There is no cost for the retreat, call today.
You are not alone. Call us 24/7 at 800-272-3900. We are here for you, yes, all fifteen million of you . . .each and every one!
The Alzheimer’s Association, Miami Valley Chapter will be launching a new respite program beginning in March 2012.
I am asking you to help change the stress a care partner may be facing by recommending or referring a friend or neighbor to the respite program. Your voice could just be what the care partner needs. Respite is a service that provides the care partner some time “off duty”; time to do what they need or would like to do such as shop, make a doctor visit, sleep or read a book without the worry of caring for a loved one.
The service provides the person living with dementia an opportunity for socialization and their own break from their care partner. Respite can be provided by someone who comes to the home, it could be through an adult day program, or spending a few days at an assisted living or long-term care facility. The options are dependent upon the needs and wants of the person living with dementia and the care partner.
The goal of the new respite program is to break down perceived barriers to respite care by offering short-term funding for respite care at little or no cost in conjunction with care consultation services.
In the new respite program, a person is eligible, regardless of income, if they meet the following criteria:
- Care receiver has a diagnosis of Alzheimer’s disease or other dementing illness
- Care receiver lives in the nine-county service area
- Family care partners are at an impasse, due to a change in physical or emotional well-being, creating a need for a shift in the way care is provided
- Family care partners are willing and able to participate in all aspects of the program, and agree to comply with respite funding requirements related to care consultation, use of respite care, reimbursement, and research
- Have never used formal respite services i.e. adult day service, in-home care, facility care. Volunteer programs such as Senior Companion program are allowed.
Telephone screening will be done to ascertain that each family meets eligibility requirements. Further confirmation of eligibility will take place at an in-person assessment.The purpose of the program evaluation is to learn if the opportunity to receive funding for respite services, along with the opportunity to receive care consultation will better meet the caregiving needs of families.
If you are interested, in need of respite care, or know of someone who may be interested, please call the chapter office (800)272-3900 or email firstname.lastname@example.org.
If you are a regular reader of this section, ‘Caregiver Tips’, you may notice it is written this month by a different person. I am excited to be offered the opportunity to share with you some tips and ideas to make your job of caregiving a bit easier. Each month I will offer information that will be educational and helpful to caregivers. The emphasis of the article is to be helpful to you.
February is a cold month, but can sometimes be warmed up by taking some time with your loved one to share memories of an earlier time. While the disease may rob memory, it does not take away personality; it does not take away love or the ability to receive love. Love can be shared at any age, as love does not know the boundaries of time or disease.
Sharing pictures of your wedding album with one another is one way to reminisce with sharing and kindness. Take time to talk with one another about your memories of that special day, about the weather, time of day, place, flowers, food, colors, music etc. Can you name the people in the wedding pictures and what they are doing now? Encourage your loved one to reminisce with you and to tell you their story of that special day.
For some, sharing a hug or spending quiet time together makes the day special. Interpersonal intimacy depends on trust. Trust is sometimes difficult when the person living with dementia sends mixed signals, but the ability to find humor in the situation is sometimes helpful.
Purpose gives us a reason to get up in the morning; purpose gives us a reason to be alive and to grow. Perhaps one’s purpose is to give care, or one’s purpose may be to give hugs, or make someone smile, or to share stories of their childhood, or stories of their work, or life. Perhaps it is sharing with another generation the life experiences and wisdom that is gained from a lifetime of living.
My purpose is to get helpful information to you. I am asking for your comments – suggestions—ideas. Most of what I know, I learned while a caregiver. The books, seminars, and research, all give ideas and hope, but we must tailor that information to our own personal situation. There are so many variables for the person living with dementia, such as the stage of the disease, and time of day. There is also the variable that you, the caregiver, is well rested, in order to carry out the learned information. Call me at the chapter office (800) 272-3900, or email email@example.com, and let me know what you think.
The purpose of the Miami Valley chapter of the Alzheimer’s Association is, “To empower people to change the course of Alzheimer’s”. We are empowering change with several programs that you may want to consider attending, all of which are on our website and will be available later this month in the 2012 Spring/Summer Program Guide. There are currently twenty support groups in the area. You are encouraged to try to attend one near you. A new respite funding program will be launched March 1 with details on the program available soon. Please call the chapter office if you are interested. The Spring schedule of the First Steps program will be coming soon. The First Steps program provides a great place for new caregivers to get basic information about memory loss basics, legal and financial information, day to day caregiving tips and community resources. There is also a national online program www.alzconnected.org that is a social networking opportunity for care partners as well as persons living with dementia. Our Spring Essentials program will be offering ongoing dementia education at various locations in the region in the near future. The new Program Guide will be coming out in mid February and will have details on the above programs and more. Call our office at (800) 272-3900 if you have questions.
Your Miami Valley Alzheimer’s Association has lots of information and suggestions to share. Please call and let me know if you have comments or suggestions for ‘Caregiver Tips’. Please take some time this cold month to share pictures, and hugs with your loved one. Take some time for yourself too. Get involved and get educated about the disease. Then, you will have the tools to change the course of Alzheimer’s disease.
January 2012 - Making way for new ideas, new perspectives, new projects by clearing clutter
January is the month I try to clean out at least one closet and one drawer; I try to set reasonable goals. And sometimes I get motivated and am able to find the time to do a little more. And what is my reward? I find that when I create space and organize my things, I am better able to organize my thoughts and imagine possibilities.
For some people, organization comes quite naturally. You may be a gifted organizer and have a knack for making spaces clean, functional, and beautiful. Personally, I can only go so far with this and then it becomes real work.
If you are like me in this regard or struggle with clutter or possibly even hoarding, I encourage you to keep reading. Also keep reading if a person you care for is living with more clutter than usual due to dementia as the website below addresses this issue.
A working definition of hoarding comes from the following website:
“Hoarding is the excessive collection and retention of things or animals until they interfere with day-to-day functions such as home, health, family, work and social life. Severe hoarding causes safety and health hazards.”
This website lists why older adults hoard and also offers a helpful “DO” list as well as a “DON’T” list for helping older adults who hoard. I find this to be a very practical website.
Another way to think about this issue is the following, from Vickie Carraher, RN, BC, Senior Services Coordinator for the City of Kettering and Alzheimer’s Association Miami Valley Chapter board member:
Hoarding: A collection of or a failure to discard a large number of objects even when their storage causes significant clutter and impairment to basic living activities such as moving around the home safely, sleeping or bathing. Hoarders have an emotional attachment to their things, and severe anxiety over their belongings and others’ interest in them. They often do not recognize that there is a problem, and experience severe psychological pain when asked to give up possessions. Hoarding is very difficult to treat.
Pack Rats: Haphazardly stockpile things but do not have emotional attachment to them. Pack rats realize they have a problem, and can be cleaned up and organized without the need for treatment.
Collectors: Orderly and systematic with their items. Often display them in prominent places in the home. Receive pleasure in sharing the collection with others. Collections do not impede the collector’s ability to function.
Clutter is different from hoarding and collecting. Neither clutter nor collecting are, by definition, associated with illness. Clutter is what happens to all of us if we let the mail go for a few days, or don’t really know what to do with the things that come into our home or office space. Taking time to sort and organize will clear this up, if we are persistent and focused. Hoarding does not often succumb to these efforts, and most of the time the person doing the hoarding has no desire to change. Collecting can be a meaningful activity and the collection of items may represent travels, gifts, bargain hunting, etc. Displaying collections can be challenging, but does not by definition negatively impact quality of life.
So what do we do if we have too much stuff, or stuff that we are having trouble organizing? First, recognize that only you can alleviate the discomfort caused from too much stuff or lack of organization, then get started. Look at the following websites for ideas and guidance, and then plan your strategy. Get help from friends or family, and/or tell your support group what you are working on; accountability can be the kick in the pants we need to take action. Once started, you may find that it becomes a self-rewarding endeavor. What new thoughts and possibilities might you entertain in your freshly organized space? Happy New Year!
Good step-by-step advice. Plus, see if you can identify your clutter personality on this website!
I like the tip here about packing for a month-long trip in 2 large suitcases, removing all other clothing items from drawers and closet (preferably to the basement, but since I don’t have a basement I would have to find another place), then seeing what you really need. If you don’t use it within a certain time period, it gets donated. There are other great tips in this article, as well.
I love the website name! Check out the “How to begin” section. Also, there is an array of online support through this website. Get connected and get started! Let the Organizer Lady, Sandy Felton, help you.
Questions or concerns? As always, we are here to help! Please call our helpline at 1-800-272-3900 or email firstname.lastname@example.org