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 Program Director, Sheri Wammack at sheri@pagerobbins.org.

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  • September 19, 2018

    Finding Joy


    Dementia is a hard. It’s hard for the person diagnosed: learning to adapt, trying to keep up appearances, coping with the loss of their own abilities. It’s hard for caregivers: constantly grieving little losses of their loved one, stressing over important decisions, losing sleep, answering the same questions repeatedly. Because dementia makes life so difficult, many families lose their joy. But it doesn’t have to be this way. It is possible to still find joy in each day.

    7 Ways to Find Joy in the Day:

    1. Live in the moment.
    Turn on your loved one’s favorite music, turn up the volume, and dance. Watch a favorite movie. Go for a drive and get an ice cream cone.

    2. Focus on the good times.
    There are difficult days ahead, but instead of dwelling on the bad, focus on the positive. Hold on to those good and funny moments. Write those moments down on Post-It notes or in a journal and come back to them when you need a reminder.

    3. Pick your battles.
    Not everything is worth arguing over. Give in when you can. Ice cream for dinner – why not?! Arguing takes up time and energy that you don’t have and leads to frustration on both sides. (When appropriate) give in!

    4. Spend time with friends and family.
    Invite friends and family over. Even if your house isn’t clean, even if you look a hot mess, and even if your fridge is bare! Company is good for our souls. Ask one or just a few people over at a time, so your loved one doesn’t get overwhelmed. Offer coffee and a dessert (or ask your guest to pick up dessert at on the way). Focus conversation on fun times spent together. Share funny stories.

    5. Do an activity with your loved one at home.
    Look through old photo albums. Remind your loved one of stories the pictures tell instead of asking him/her a bunch of questions about the picture. Check out our previous blog post with other fun activity ideas. The possibilities are endless.

    6. Go on a mini adventure.
    Walk through an art show. Visit a museum. DIY your own driving tour of Memphis. Sit by Patriot Lake at Shelby Farms or sit in The Peabody Lobby and people watch. Ask your Facebook friends for new restaurant recommendations, and then go try them all.

    7. Go for a walk.
    LR Knost said, “When life feels too big to handle, go outside. Everything looks smaller when you’re standing under the sky.” Fresh air and exercise is good for everyone. You don’t have to talk or force conversation. Just walk. Hand in hand.

    There will be plenty of grief, worry, and struggles with dementia. When you can, choose to enjoy the moment. Decide to share a laugh with your loved one. Share fun memories. And if you have ANY doubt that those affected by dementia can have joyful moments and great days, come see us at Page Robbins. There is much joy within these walls, and we would be happy to help you find it!

    Also, be sure to check out this TED talk by Beth Fauth on Finding Joy on an Alzheimer’s Reality.

    August 30, 2018

    Guard Your Words


    All too often we hear caregivers talk about their loved one with dementia as if that person is not there. What caregivers don’t realize is the impact words still have on their loved one. I don’t think family members are ill intentioned and meaning to talk about their loved one in a negative way. Families are stressed and seeking help and connection with others when they can get it.

    Research shows that those with dementia (even those in the final stages) can understand what is being said. Let’s reemphasize that point because it’s so important: THEY CAN UNDERSTAND YOU. They may not understand everything you say, but bits and pieces sink in, and you never know which those will be.

    When talking with someone with dementia it is so important to be respectful. Do not talk about that person as if he/she is not there. Instead, try to include your loved one in the conversation to the extent possible. It’s demeaning to have a conversation about your loved one in front of him/her.

    Imagine this: you hear your spouse talking on the phone with a friend about your bad habits. What is your reaction? It’s a horrible feeling to hear yourself talked about negatively. You would not be happy with your spouse or the friend. However, we do this to our loved ones. He/she is standing next to us, and we discuss recent behaviors with others.

    Always assume that they can understand what you are saying.

    Or how about this example: you take your loved one to the doctor and start unloading about your loved one’s recent behavioral issues and changes in functioning. I don’t know about you, but if I ever take my husband to the doctor with me and the doctor asks about my diet and exercise, my husband better sit VERY quietly next to me as I talk about my excellent diet and exercise (even though the truth is that I just finished a Snickers in the car). I would be furious if my husband outed me to the doctor. Wouldn’t you?!

    Instead of talking to the doctor in front of your loved one, have a private discussion with the doctor to talk about issues that might make your loved one feel embarrassed.

    Even those who cannot express themselves verbally can still understand what is being said.

    In an article in Coming of Age Magazine, summer 2018 issue, Brian LeBlanc writes about his experience as a person with dementia and how he is trying to erase the stigma associated with the disease. He often hears the words, “I know you may not remember, but…,” before someone tells him something. He says that he hears people ask, “So, how is he doing?” when he is standing right there and could answer for himself. He talks about how people assume that he can’t answer for himself. He feels “dismissed.” “I was shoved in a corner as if I didn’t matter.” This is NOT how we want our loved ones to feel.

    Talk TO your loved one. Speak words of love. Words of affirmation. Words of affection. Words of kindness. Words of acceptance. Words of understanding. Words of respect. If you must talk about your loved one, do so as if they fully understand what you are saying. The more that we treat our loved ones with respect, the more others will see that and follow suit.

    (You can find issues of Coming of Age Magazine here. Brian’s article is in the Summer 2018 issue starting on page 20.)

    July 30, 2018

    Activities for Meaningful Engagement


    Activities are a great way for you to engage with your loved one. Engagement is any time a person with memory loss joins in on the conversation, the action, and/or the process. Your loved one with memory loss needs to feel like he/she belongs and needs to feel productive. Those with memory loss still have something to contribute. Let’s show them they belong and that they still matter.

    Here’s a list of more than 70 activities for your loved one with memory loss. Activities for lots of different spaces, occasions, and times are included. Keep in mind, it’s about the process and NOT the finished product. You may have to re-fold the laundry or eat cookies that are misshapen and weird sizes, but that’s OK.

    Be flexible. And ask yourself: What’s more important? Perfectly folded towels and magazine-worthy cookies, or laughter and conversation with mom?

    Here’s the list in PDF form
    Here’s the list in Word form

    Check out this previous blog post on activities if you want to learn more.

    Morning Activities

    • Wake them up with music instead of a blaring alarm
    • Bring juice or coffee to the bedroom for them to smell and taste as they are waking
    • Sing a morning song (example: Oh, What a Beautiful Morning)
    • Have them pick between two outfits that you preselected the night before
    • Read the newspaper or a paper devotional
    • Watch the sun rise
    • Sit outside or by a window and bird watch

    Personal Care Activities

    • Create a clean, spa-like environment in the bathroom by clearing away all unnecessary products and having a nice bathrobe on hand
    • Call bath time, “spa time” or “water therapy”
    • Play music
    • Sing
    • Give a hand massage with a lotion that has a favorite scent
    • Give an in-home manicure

    Food and Kitchen Activities

    • Polish the silver
    • Fold towels, napkins, dishcloths
    • Load and unload the dishwasher and wash dishes
    • Set the table
    • Butter the bread
    • Make a salad with ingredients pre-cut (fruit salad, lettuce salad, pasta salad, etc.)
    • Cut out biscuits or separate canned biscuits
    • Clip coupons and search grocery ads
    • Shake heavy cream until it turns to butter, stir in a pinch of salt for fresh butter
    • Use a bread maker for a fresh bread sensory experience
    • Make banana pudding with instant pudding mix, layered vanilla wafers, and bananas cut with a plastic knife
    • Make cookies
    • Mix pumpkin pie filling and pour into pre-made pie crust
    • Snap beans, shell peas, and shuck corn from your farmer’s market bounty
    • Make fresh lemonade
    • Make homemade ice cream
    • Make guacamole
    • Have afternoon tea

    Activities for When You’re Waiting Somewhere

    • Name 5-10 things that you would…
    • Take on a picnic
      Pack in the car before a trip
      See at a basketball game
      See at a wedding
      Find in a spice cabinet
      Find in a tool box
      Find in a kitchen drawer

    • 10 words that begin with the letter…
    • Name 5 wild animals, farm animals, pets, etc.
    • Fill in the blank on sayings and discuss the meaning of each saying
    • You are the apple of my _____
      A penny saved is a penny _____
      The early bird catches the _____
      Penny wise and pound _____
      A stitch in time saves _____

    • Would you rather…
    • Have cheeseburger or pizza?
      Eat french fries or onion rings?
      Travel by train or plane?

    Discussion Starters

    *Don’t ask questions that could have right or wrong answers. Instead of asking: How many grandchildren do you have? Say: Tell me about your grandchildren. Instead of asking: What did you have for lunch today? Ask: Did you enjoy your lunch today?

    • Ask open-ended questions about the past
    • Someone told me during WWII there were rations on sugar, gas, and other things. How did families manage that?
      Was it easy for you to learn to ride a bike?
      What was your first date like?

    • Ask questions about favorites
    • What was your favorite school lunch?
      What are some of favorite TV shows or radio shows? (Then, find clips of the show on YouTube or find episodes on services like Netflix and watch together.)

    • Google funny yearbook pictures or funny animal photos and laugh together
    • Search out old advertisements and ask about grocery shopping, cars, etc. when they were young adults
    • Print out funny pictures or pictures from an era they remember fondly and ask them to caption the photo or tell a story about it
    • Talk about well-known sites or favorite vacation spots
    • The White House has 16 bedrooms. That’s a lot of beds to make. I’d hate to think about folding all of those fitted sheets. Do you think they have a staff to handle that, or would the first family have to take care of it?
      The Grand Canyon is bigger than Rhode Island. I wonder how long it would take to drive around it. Would you ride a donkey down into the Canyon?

    • Say, “Tell me more…” when they talk about a memory

    Outdoor/Out-of-the-House Activities

    • Feed pond ducks (NOT bread but oatmeal or thawed frozen/canned corn or peas)
    • Go to the zoo
    • Visit the Memphis Botanic Gardens or the Dixon
    • Visit an art museum – call ahead if you are concerned about handicapped access and bring a wheelchair if you are concerned about walking for very long
    • Visit a farm supply store
    • Feed the birds in your backyard
    • Plant flowers in a raised bed
    • Rake leaves
    • Walk and talk about what you see – house architecture, trees, flowers
    • Cut flowers and arrange them

    Activities with Household Items

    • Sort coins, socks, nuts and bolts
    • Dust
    • Sweep
    • Do chair exercises (search on YouTube)
    • Look through an old jewelry box
    • Search magazines for all things green, photos of food, photos of children, the letter M, etc.

    Games

    • Solve a jigsaw puzzle – make sure it’s the appropriate number of pieces, not too many or too few
    • Play dominoes
    • Play a card game
    • Play a board game that is simple but not childlike
    • Play BINGO

    Creative Activities

    • Color in an adult coloring book
    • Create a Shutterfly book with pictures from your family to look through and reminisce
    • Create a Pinterest art project
    • Crochet, knit, or quilt
    • Make a family tree poster
    • Craft holiday cards

    Activities with Friends/Family

    • Ask an older grandchild to set up a playlist on Spotify of favorite music
    • Invite a younger grandchild over and read a book together
    • Ask a friend with a calm pet to visit
    • Bake a birthday cake for someone special and take it to them

    For Those Who are More Progressed

    • Hand and foot massages
    • Apply lotion
    • Hair care
    • Hug and give a backrub
    • Listen to music
    • Sing
    • Make simple foods or drinks, like lemonade
    • Look at photo albums or coffee table books
    • Touch quilts
    • Virtual landscape scenes (such as an aquarium … once again, YouTube is your friend!)
    • Enjoy the scent of citrus, spices, and herbs
    • Talk with them, even if you’re not sure they understand or can hear

    June 19, 2018

    Long-Distance Caregiving

    Caring for a loved one from a distance has its own struggles. If no other family lives near your aging parents, how do you ensure someone is looking out for them? If another family member is caring for your loved one with memory loss, how do you help?

    You may feel helpless, but you are not helpless. We’ve got your back and an action plan! These are our tips for long-distance caregivers. If you have questions that aren’t addressed here or just need a listening ear, give us a call at 901.854.1200.

    For ALL long-distance family:

    • Call your loved one on a regular basis. Even if conversation is repetitive and/or doesn’t make sense to you, the connection is important. Keep in mind that Facetime or Skype might confusing for someone with cognitive impairment.
    • Send cards, notes, and photos. A physical piece of mail can give joy over and over again.
    • Plan your visits to make the most of your time together. Make time for errands AND quality time. Get the household tasks completed and schedule appointment when you can be there.
    • Gather information and resources. Take time to learn about your loved one’s condition, so you can help anticipate needs. Make a list of support in the area, such as friends and church members who can assist when something comes up and you cannot be there.

    If other family does not live locally with your loved one:

    • Find a geriatric care manager. He/she can be your eyes and ears when you cannot be there. A care manager can accompany your loved one to appointments, report to you about your loved one’s condition and provide a host of other services.
    • Plan ahead. When you are in town, prepare for the future. You never know when circumstances will change for your loved one. Interview in-home care agencies early, tour residential facilities, etc. When crises arise, you will have a plan in place.
    • Complete medical information releases, so you can have contact with your loved one’s physicians as needed.

    If another family member who lives locally is providing primary care:

    • Thank the primary caregiver. Call, tell him/her in person, send a note. When you are far, one of the best ways you can care for your loved one is by making sure the primary caregiver is emotionally supported.
    • Listen to the primary caregiver. Resist the urge to constantly interject what you would do in the situation. It is hard for the primary caregiver to constantly hear how he/she could be doing things “better” or differently. Don’t make their days more difficult. It is important to just listen.
    • Believe the primary caregiver when he/she tells you what is going on. You may think: Mom would never do that. But those with dementia usually do things in front of the person closest to them that they wouldn’t do in front of anyone else.
    • Give the primary caregiver a break. Plan ahead for visits and allow the primary caregiver to check out for some time (a few hours, overnight, a week).

    Found this helpful and want to learn more? Check out this resource page from The Alzheimer’s Association.

    May 25, 2018

    Caregiving Mythbusters

    There are many myths related to dementia and caregiving. And believing them isn’t doing you or anyone any favors, so let’s bust some myths.

    Myth: I can handle everything myself. I don’t need any help.
    Reality: You will need help. Don’t be afraid to ask for it.

    Caregiving is physically and emotionally hard. You will need help. You will need other people to give you a break. You will need someone to listen to your worries. You will need advice. You may need physical assistance in caregiving. Do not try to care for your loved one alone. Find people you can trust and lean on them for support.

    Myth: It’s like caring for a child. I have become the parent.
    Reality: It is different than caring for a child because your loved one is an adult.

    There are some similarities between caring for a child and a loved one with dementia, but there are also glaring differences. When you parent a child, the expectation is that the child will mess up but learn along the way. You train them to become more independent, so one day they will become a productive member of society. When you are caring for a loved one with dementia, your loved one will not get more independent. Tomorrow, your loved one will need more help than he/she does today.

    You need to give your loved one the respect and dignity of being treated like an adult. Your mom is still your mom but with cognitive impairment. Your husband is still your husband but with a neurodegenerative disease. Preserve and honor that relationship. You are providing care, not parenting.

    Myth: I am a bad caregiver if I use in-home care, day programs, or residential care.
    Reality: When you seek outside care options, you are still a great caregiver.

    Many caregivers feel deep guilt when deciding to use alternate care for their loved ones. Caregivers can feel selfish for wanting time to themselves or guilty for not being able to carry on at a certain pace. Reaching out for assistance is an act of strength and not an act of weakness.

    Choosing to use in-home, residential, or adult day services does not mean you have failed at caregiving. You are still the caregiver; you are just allowing others to assist. No one gives surgeons a guilt trip for asking surgical nurses for assistance. That is the nurse’s job. They are there to help surgeons be successful.

    The same is true for caregivers. Having assistance from another care provider doesn’t mean you are weak or a bad caregiver but that your loved one needs more care than one person can provide.

    Myth: Now that my loved one has dementia, the good days are over.
    Reality: There can still be many good days when your loved one has dementia.

    Yes, the disease process is full of challenges for everyone. But there can still be good days, and there can still be joy even though life has changed. The trick is to LIVE IN THE MOMENT. Don’t get too hung up on the little things that don’t matter: The laundry didn’t get done today. My husband put the cereal in the fridge instead of the pantry. Mom said something embarrassing to the waitress.

    Learn to laugh with your loved one. Learn to enjoy just being together. Learn to talk about bygone days and share and listen to stories (even if they aren’t always truthful). Cherish the now. (And if you still doubt there can be good days, come see us at Page Robbins. We’re certain we can make you feel differently.)

    Myth: Planning for end-of-life decisions hastens death. If I don’t talk about it, it won’t happen.
    Reality: Planning ahead gives you peace of mind and a road map for the future.

    Planning ahead does not hasten death or illness. Instead, it gives you peace of mind to know that decisions are made and finances are planned. It can save you from having to make difficult medical decisions in a crisis. Planning ahead allows you stop worrying about the future and focus on the day-to-day.

    Myth: Everyone with dementia is aggressive, depressed, agitated, inappropriate, etc.
    Reality: No two people with dementia are exactly the same.

    There’s a saying that goes: “If you have seen 1 person with dementia, you have seen 1 person with dementia.” There are stages and patterns of behavior in dementia, but everyone’s journey is going to be different. Some may wander and have hallucinations, and others may never exhibit those behaviors. Some may have trouble sleeping and a poor appetite, and others may never have those struggles. Each person’s dementia process will be unique.

    Myth: My loved one is the only one that (insert embarrassing behavior).
    Reality: You can’t shock us, so please ask your embarrassing questions.

    Families rarely share something that truly shocks us. If you have questions that you’re embarrassed to ask or situations that you feel awkward talking about, please share them with us. Families often shy away from discussing certain topics with physicians or care professionals because they are ashamed of their loved one’s behavior. Don’t hold back! We don’t judge and neither will others. Don’t let fear of embarrassment hold you back from getting the answers and help you need.

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