Care & Share

Welcome to our Care & Share blog! This blog features care advice for caregivers, family members, and friends of those with dementia. We also have information on caring for caregivers. If there’s a topic you would like to see addressed, please let us know! You can give us a call at 901.854.1200 or email our Social Worker, Sheri Wammack at sheri@pagerobbins.org.

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  • July 31, 2017

    The Race of Endurance

    I have heard it said that caregiving is not a sprint but a race of endurance. Maybe you’ve just begun the race, but you’re already feeling out of breath. Or perhaps you have been caring for a loved one for several years and are thinking, “I’m too worn out. I just can’t do this anymore.” Caregiving is hard, and even though the road ahead sometimes looks impossible, you’re going to make it! Here are 8 things every caregiver should know for the path ahead.

    As always, if this blog sparks any questions or if you would like to talk about your specific situation, give us a call at 901.854.1200 or email our Social Worker, Sheri Wammack, at sheri@pagerobbins.org. We would be happy to answer your questions!

    1. You are not alone.

    At times, you will feel isolated. Thoughts like, “No one else understands what I am going through…” or “I am the only one who…” are common for caregivers. But you are not alone. According to The Family Caregiver Alliance, in 2015 there were over 34.2 MILLION people providing unpaid care to someone over the age of 50. That is a lot of people who are in your same boat. Seek out a support group (like ours here). Find those friends who understand, so you can share with one another and have someone to run alongside.

    2. Lean on others: Accept help. Ask for help.

    In our opinion, no one can/should caregive alone. Every caregiver needs assistance and an occasional break. Friends and family are often willing to help, but they do not know how to help you. When friends and family say, “Let me know if you need anything,” take them up on it. Ask for a friend to visit and chat or to sit for an hour to give you a break. Ask someone to bring a meal to your home. Come up with a wish list of things others can help with. Then, when someone asks, “How can I help?” you have an answer ready. Here’s our blog post on creating a caregiver wish list if you’re interested in learning more.

    Also, seek the help of professionals. Professionals in the field can help you navigate the waters. They know resources you might not and can be a good source of information for you.

    3. Don’t put off making decisions for fear of making the wrong decision.

    Many caregivers put off making decisions about care because they worry about making the wrong decision: “Mom needs more care than can be given at home, but I just can’t decide which facility would be best.” Putting off these decisions can cause more work for you because Mom needs more care than you can provide, but you continue to do it and wear yourself out.

    As a caregiver, there are so few decisions you cannot take back. For example, you decide to move your parent into Facility A, and a month into it you realize that it isn’t a good fit. Life is not over. Move Mom to Facility B. Or you decide to let the physician start your dad on a medication, but a couple of weeks into it there are some negative side effects. Call the doctor to discuss it, and stop the medication.

    When you lay your head on the pillow every night, if you can honestly say you made the best decisions that you could for yourself and your loved one, then, you did the best you could. Tomorrow, you might change your mind and make a different decision. That is OK. You are making decisions based on the information you have, and it is enough. You can change your mind later.

    4. You are not perfect.

    You were not perfect before becoming a caregiver, so why should you be perfect now?

    You will handle situations wrong. You will say the wrong thing at the right time and the right thing at the wrong time. You will react in frustration rather than love. Cut yourself some slack. You will still get mad, upset, and frustrated because you are human and you have emotions. Try to learn from your mistakes. Try to take a breath when emotions overcome you. Try to step back and realize that your loved one is not purposely frustrating you.

    5. Find joy in the moment.

    Caregivers often stay task-oriented: Mom needs to get a bath. I need to clean up the mess from breakfast. It is time for Dad to take afternoon meds. Spending all of your time focusing on tasks will rob you of your joy. Look for joy in the moment: When liquid dish soap gets put in the dishwasher and the kitchen is filled with bubbles. When Mom remembers your name. When the grandkids have Dad laughing uncontrollably. When life feels normal.

    It is so important to hold on to your sense of humor. There will be moments that are just funny, and it is OK to laugh, reminisce, and enjoy. You bear enough struggle and heartache. Choose joy. Make space for joy. Invite it into your home and daily living.

    6. This too shall pass.

    When you just can’t take it anymore, when your loved one is being so incredibly hurtful, when you are screaming inside… know that this too shall pass. This moment of frustration, irritation, unbelievable sorrow, and anger will pass. These bad feelings may return, and the same situation may arise again, but this too shall pass. To date, you have a 100% success rate at making it through all tough situations.

    7. Be realistic. Pick your battles.

    You can quickly drive yourself crazy expecting life to be perfect. There will be bumps in the road and days when things just don’t go right. Expect it. Don’t set yourself up for failure. Scheduling 3 appointments in one day may not be the best idea. Mom may insist on wearing her pink polka dot shirt with her red striped pants. Who cares? At least she is dressed.

    Try to avoid arguing over small things. There will be plenty of things to argue over later. If the outcome isn’t life threatening, give in, and change the subject.

    8. Make yourself a priority.

    It seems easy for someone to say this without knowing your personal situation, but know that you MUST make yourself a priority. You MUST take time for yourself, time in which you are not a caregiver but just YOU. Make time to go to your own doctor’s appointments, so you can maintain your health. Make time to invest in your relationships with your spouse, children and friends. Make time to do the things you enjoy.

    You may not be able to give the time you used to, but you should set aside some time. Some days, it might be 5 minutes alone on the porch swing, others it might be a few hours, and others it might be a week-long getaway.

    June 29, 2017

    Home Safety Tips


    As they say, home is where the heart is (and where we spend a lot of time), so it’s important to keep your home happy and safe. When you care for someone with dementia, there are new things to consider when thinking about the safety of your home. The goal of home safety is to prevent the avoidable disasters, to the best of our ability, and to prepare for the inevitable ones. These are our home safety tips for caregivers.

    As always, if this blog sparks any questions or if you would like to talk about your specific situation, give us a call at 901.854.1200 or email our Social Worker, Sheri Wammack, at sheri@pagerobbins.org. We would be happy to answer your questions!

    General Home Tips

    • Display emergency numbers in a prominent place, such as the refrigerator or taped to the inside of a kitchen cabinet. Also, put those numbers in your cell phone contacts. These numbers could include personal emergency contacts, non-emergency numbers for your local police and fire departments, and poison control (1-800-222-1222).
    • Have an updated copy of your loved one’s medications (dosage and frequency) and allergies in a place where you can find it quickly. OR have that information listed in the notes on your phone.
    • Check your hot water heater settings. The hottest setting needs to bearable to the touch. Your loved one may unintentionally turn the water as hot as it will go and burn his or herself.
    • Test your smoke and carbon monoxide detectors regularly to ensure batteries are working. Once a month is recommended.
    • If you still have a landline, set your answering machine to begin after the shortest ring setting available, so you can better screen calls and ensure your loved one won’t fall victim to telephone scams.
    • Remove all weapons from the house, or have them hidden and locked away. Keep all weapons disarmed.
    • Label important rooms and spaces, such as the bathroom. You may want to use pictures or symbols instead of words if your loved one has trouble reading.
    • Remove locks on interior doors, so your loved one cannot lock his or herself in a room.
    • Get rid of the junk drawer… and the junk in general. Clutter causes confusion. Is it trash or food? Is it scrap paper or an important receipt? No one knows! Keep it simple and clean.

    Kitchen

    • Make sure you have at least one fire extinguisher in working order and know how to use it. Here’s a short video from FEMA if you are unsure of the proper procedure.
    • If you have a gas stove, make sure you know where the shut-off valve is located.
    • Unplug the microwave (or any appliance of concern) when not in use. This way you can better monitor use the appliance.
    • Put knives, other sharp utensils, and any precious/breakable items in cabinets with child-proof locks.
    • Keep alcohol hidden or locked away.
    • Use a drain trap in the kitchen sink.

    Bathroom

    • Lock up medications (both prescription and over the counter).
    • If your loved one seems confused about the difference between the toilet and the sink, install a brightly colored toilet seat.

    Fall Prevention

    • Good lighting is essential in hallways and rooms. Also, consider nighttime lighting. Place nightlights throughout the house, or keep key lights on when it’s dark outside.
    • Try to avoid using extension cords, and if you have to use them, make sure they are tucked away out of foot paths.
    • Make sure your stairway has a hand rail. And if you have slippery stairs, add something like a clear, adhesive stair tread to add more traction. Putting reflective or brightly-colored tape on the end of each stair might also be useful.
    • Use slip resistant wax when finishing floors.
    • Remove throw rugs. While rugs are pretty, they are a fall hazard.
    • Avoid clutter. The more things there are, the more things there are to trip over!

    Outdoors

    • If you have a pool, make sure your loved one does not have easy access. A gate will help ensure he or she doesn’t accidentally fall in.
    • Remove the fuel sources for grills when not being used.
    • Keep power tools locked up and out of sight.
    • Keep a spare key outside in a hidden area just in case your loved one locks you out.

    May 26, 2017

    Traveling and Dementia


    It’s time for travels and vacations. Exciting? Yes! Stressful? Double Yes! Getting ready for a trip can be a lot of work and even more so when you are traveling with a loved one who has memory loss. Here are some ideas to help make traveling a bit easier and safer.

    Plan wisely.

    Avoid travel during peak times. Friday afternoon on a holiday weekend may not be the best option. Instead, travel on a weekday morning. If possible have 2 caregivers on the trip, so caregiving responsibilities can be shared. Don’t schedule a tight layover. Allow you and your loved one time to visit the restroom and get from place to place.

    Inform the airline of your situation.

    Get a letter from your loved one’s physician for the TSA, so you can bypass potential additional screening that may cause stress. Inform the airline and medical service department ahead of time of your specific needs. Most airlines ask for a 48 hour advance notice. You may want to ask for a wheelchair to travel through the airport.

    Choose a hotel with interior doors.

    When choosing a place to stay, get a hotel with doors that open to an interior hallway. If your loved one wanders, he or she would have to pass through the lobby, where hopefully someone can redirect. If your loved one has limited mobility, call ahead and ask for a room that is close to the check-in area to keep you from walking your loved one down a long hallway.

    Keep hotel staff informed.

    Print out a picture of your loved one and give it to the front desk (or text/email a picture from your phone). Ask that it be posted for employees and that if anyone sees your loved one alone, for them to call you. When you are in the room for the night, lock and latch the door. If there are two beds, sleep in the one closest to the door, so your loved one has to cross your path to exit. You can also bring a portable door alarm or childproof doorknob cover. New environments can be confusing, so you may want to label areas like the bathroom. Ask the front desk or concierge about nearby pharmacy and health service options in case needed.

    Plan for the unexpected.

    A small issue can throw off all your plans. Allow extra time for the unexpected. Pack things to keep your loved one entertained: magazines, familiar music and headphones, activities. Also, bring essentials: snacks, water, disposable garments, wipes, prescription medications, over the counter medications, change of clothes. If traveling by car, subscribe to a roadside assistance program and have 2 drivers available if needed.

    Bring copies of important documents.

    You never know what will happen when you are away from home, so having important documents with you is vital. Bring your loved one’s identification, emergency contact information, physician’s names and contact information, list of current medications, list of drug/food allergies, copies of legal papers (living will, advanced directives, power of attorney), insurance information and a written travel itinerary. Be sure not to pack any of these documents in your suitcase, lest that bag be lost or stolen. Keep them on your person or lock them in a safe at the hotel.

    Have identification for both of you.

    It is very important that those with memory loss have identification on their person in case they get separated from their family. This could be a Safe Return Bracelet through the Alzheimer’s Association, a DIY identification bracelet, or a laminated card in their pocket. Whether bracelet or card, it needs to have their name and “In case of Emergency, please call… (at least 2 names and phone numbers).” You should also carry a card that says: “I am traveling with someone who has memory loss.” This way, in case you are in a wreck and are unresponsive, the responders will know to look for your loved one.

    Take a picture at the beginning of each day.

    Once your loved one is up and dressed, take a picture of him or her on your cell phone (deleting yesterday’s picture). If your loved one wanders off, you will have a current photo to show the authorities.

    Keep routines as much as possible.

    If your loved one is used to eating 3 meals a day, try to eat 3 meals at the usual times. If your loved one goes to bed around 9, try to keep that routine. Getting off schedule can cause even more confusion. Keep in mind time zone changes and how that might affect what time you eat and when medications need to be given.

    Keep your daily itinerary simple.

    If you are sightseeing, try to break up the sightseeing adventures into smaller outings instead of one, long outing. It may be that your loved one can only handle sightseeing in the morning and needs to rest in the afternoon. You may have to alter your pace. Be flexible. Avoid restaurants and tourist attractions at peak times. Instead, visit at less busy times or choose a less busy restaurant.

    If you have any specific questions about traveling with your loved one, please give us a call at 901.854.1200. And if you’re looking for additional information, we found the Alzheimer’s Association’s page on Traveling and Dementia and this page from Light Bridge Healthcare Research on Traveling and Dementia to be helpful.

    March 2, 2017

    Choosing a Residential Placement


    Being a caregiver is incredibly stressful: addressing daily care needs, managing bills, going to medical appointments, making meals, and keeping up the house. In addition to these things, making decisions about your loved one’s care is difficult. Caregivers spend a great deal of time stressing over if they should place a loved one in a residential care facility and wondering which facility is the right one.

    If you’re feeling overwhelmed by a care decision, take a breath. We’re here to help. These are our best tips on choosing a residential placement. If you have questions after reading this, be sure to give us a call (901.854.1200) or stop by, we would be happy to answer questions and provide support for you and your specific situation.

    Step 1: Decide your breaking point.

    The big question: “When is the right time to move my loved one to a residential facility?”
    There’s no one answer to this question. In our experience, most caregivers have a breaking point in what they can manage at home. For each caregiver, that breaking point is different.

    Some examples of stages your loved one might reach that could be a breaking point:

    • Not sleeping at night and disrupting sleep for the rest of the household
    • Incontinence
    • Hoarding becomes excessive
    • Choking on meals consistently

    Choose YOUR breaking point. There is no right or wrong time other than waiting too late. When you wait too late, you suffer and don’t manage your own self-care. As a result your loved one suffers because you can no longer provide adequate care.

    Step 2: Determine your loved one’s appropriate level of care.

    How do you know what level of care is appropriate – traditional assisted living, memory care, nursing home? We suggest asking your loved one’s physician, consulting with a geriatric care manager, or having a facility admission coordinator assess your loved one to make appropriate recommendations.

    Step 3: Do your research.

    Ask around. What experience have others had with the facilities you are considering? Also, think about location and cost. If you’re planning to visit your loved one often, it would be wise to choose a facility that is within reasonable driving distance from home and/or work.

    This is another step when a geriatric care manager may be of great help to you. He or she can help you narrow down the pool of facilities to consider.

    Step 4: Take a tour.

    Go out and look. Tour several facilities to see what is out there. It is always best to know about the options in the area, so you can make an informed decision when/if the time is right for you.

    Take both scheduled and unscheduled tours. Show up unannounced (maybe at a mealtime or on a weekend) to see how things are when staff are not prepared for you to be there. It is important to have a scheduled tour as well. Scheduled tours ensure that the correct staff person will be available to give you the information you need. Understand that not every staff member will be able to answer your questions, so be sure to ask the right person.

    When taking a tour, there are lots of things to consider and observe, but don’t stress too much. You can always take a second or third tour if needed. When you tour, use your five senses:

    SOUND

    • Do you hear staff talking with residents, including them in conversations?
    • Is staff speaking kindly to residents and one another?
    • Does staff call residents by name?
    • Is there music playing? Is it appropriate and soothing music?

    SIGHT

    • Is the facility nicely decorated?
    • Is there natural light?
    • Does it look clean and orderly or chaotic?
    • Ask for a menu. Does the food look appealing?
    • Are people smiling?
    • What do you see the residents doing? Are they watching Jerry Springer or something more appropriate? Are they staring off into space, or do you see them engaged in an activity?

    TASTE

    • If you have a meal at the facility during your tour (which is not necessarily common), does the food taste good?

    TOUCH

    • Are the floors sticky?
    • Are the tables still sticky from the previous meal?
    • Are there items around for the residents to use? Games, puzzles, sensory items?
    • Is staff providing physical reassurance and attention to residents, such as a hug or a pat on the arm?

    SMELL

    • How does the facility smell? Do you smell lunch cooking, or does it smell like bleach?
    • Is there an odor of old urine? If someone has just had a bowel movement then there will likely be an odor, but it should not be a permanent smell.

    The best facility is not necessarily the newest/most expensive facility, and the worst facility is not necessarily the oldest/cheapest. There is no one facility that is the best for everyone. Each person and family is different. Different places for different needs.

    Bonus Step: Be an advocate.

    Once you have chosen a facility and moved your loved one in, know that you are still your loved one’s caregiver. You are still his or her advocate. It is important that you visit, check on your loved one, and make sure that appropriate care is being provided.

    November 23, 2016

    Communication Tips


    We all need people in our lives. We all need to feel a connection and be a part of something. This need to belong does not go away when someone has dementia. Recently, we’ve been talking a lot about caregiver isolation with our #iCareforCaregivers campaign, but caregivers aren’t the only ones who are isolated. Often when someone has dementia, social circles shrink (and perhaps even disappear).

    Why? Let’s be honest. It can be a bit awkward talking with a person who has dementia. You might not know what to talk about, or that person may say or do strange things. Also, it’s hard to see someone you love lose their abilities and memory.

    But here’s the truth: it may be awkward and difficult, but that person needs you. Your friend or family member’s life will be fuller and better with you an active part of it. Those with dementia should still be involved in relational things. It’s important to include them in conversations and social events.

    You may be thinking, I don’t know what to say to this person anymore. How do I interact? We’re here to help! Here are our best tips for communicating with someone who has dementia. If you have questions that aren’t addressed here, or you would like advice about a specific situation, please give us a call at 901.854.1200. We would be happy to help.

    • Limit distractions. It can be confusing for someone with dementia to participate in a conversation when there’s a bunch of stuff going on at the same time. Turn off the TV, put your cell phone away, and move to a quiet space. It’s best to be in a small group or one-on-one.
    • Set a good tone. Your attitude and body language convey a message just like your words do. Smile and make eye contact. Be kind and sincere, gentle but not demeaning. Talk to the person like an adult. Address him or her by name. Use humor when you can.
    • Be clear, and keep it simple. Slow your speech and use easy to understand language. If they don’t understand, repeat. If they still don’t understand, rephrase. Use visual prompts to help convey your message. If you need to, plan out a couple of conversation topics ahead of time. If your grandma likes to talk about the lake she lived by as a kid and making pumpkin pie with a special family recipe, you might bring pictures of the lake and the pie recipe with you to talk about those things.
    • Remind, don’t quiz. Don’t say: Do you remember when…? Who is in this picture? Who am I? What is my name? If your friend had a broken leg, you would never ask him to run a marathon with you. That’s what you’re doing when you quiz someone with dementia. They physically can’t remember. Also, how do you feel when people ask you questions you can’t answer? You feel bad about yourself. Help your loved one preserve dignity. Set that person up for success. Instead of quizzing, talk about times past. Say something like: That Christmas we went to the Grand Canyon was one of my favorite holidays.
    • Suggest, don’t correct. Instead of saying: “You don’t need to wear your heavy coat outside, it’s 85 degrees.” Say this: “Let’s go feel the weather outside and see if you think you need that coat.”
    • Avoid saying “No.” Offer alternatives. Instead of saying: “No, you can’t eat lunch, you just ate lunch 20 minutes ago.” Say this: “How about we get a little snack after we fold the laundry.”
    • Redirect. If the person gets agitated, overly worried, or stuck on a negative subject, acknowledge the feelings and then redirect. Here’s an example. You are visiting your friend in her home. She says: “The children are just being awful right now. They leave their things all over the house and are out all hours of the night. I just don’t know what to do about them.” You know your friend’s children aren’t teenagers anymore but are grown and live in a different city, but you don’t correct. You acknowledge the feeling and respond with reassurance: “That rebellious phase is tough isn’t it. I think we both went through one of those ourselves, but we turned out okay. Your children sure are lucky to have you as a mom. You’re a great mom.” Suggest an activity, steer the conversation in a more positive direction, or offer a new conversation topic.
    • Listen. It may take your friend or family member a while to respond. That’s okay! Take time to listen. If the words aren’t making sense, listen for the feeling behind them. Are they anxious or confused? Provide reassurance. Are they joking? Play along!
    • Be present. Even if the person can’t respond, keep talking. Your presence is a sign of love and care. Show your friend or family member that you care and that they still matter.


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