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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  • February 7, 2020

    Backup Plans

    Life is rocking along (not easily because you’re a caregiver, and caregiving isn’t easy).  But you are caring for your mom, and she is enrolled in an adult day program and enjoying it.  Or you are caring for your spouse, and you have in-home care to help several days a week.  Or your dad is living with you, and he is in the early stages of his disease, so he is fine to be left home alone.

    Whatever the case, your current situation is working.

    Until…

    • You, the caregiver, get pneumonia and are hospitalized.
    • Your sister, who helps you care for your parent, is in a serious car wreck and is hospitalized.
    • Your adult child is diagnosed with a major illness, and you have to care for him/her too.
    • Your mom stops sleeping at night, and no one in the house can get rest.
    • Your loved one becomes incontinent, and you can’t manage his care at home anymore.

    What’s your plan?

    What if your current situation doesn’t work tomorrow?  We don’t want to think that something tragic might happen in our family or that our loved one might suddenly decline, but these things happen all too often.

    As a caregiver, it is a good idea to have a backup plan that you can implement quickly.  If a backup plan is not in place, you may find yourself without options in a crisis.  And it’s difficult to make quick decisions when you’re under emotional strain.

    Make a backup plan that works for your family and your situation, and don’t delay.  Here are some examples:

    Family and/or Friends

    Who would come over at the drop of a hat to care for your loved one if necessary?  These are people who could come to your home and stay with your loved one for a few hours or days (or who would let your loved one stay at their house).  Maybe it’s a family member, neighbor, friend, or fellow church member.  Get a list together, and let those people know that they are your backup.

    In-Home Care

    Set up services with an in-home care agency.  Interview agencies, pick the one you like, sign a contract, and have them ready to start services when/if needed.  You could start off with having an agency caregiver provide services once or twice a week to get your loved one used to the idea.  Or you could just have a contract in place when/if the services are ever needed.

    Residential Memory Care

    This level of care is a facility with a secure unit, where your loved one can move in.  These facilities are staffed with direct care staff, nurses, and often social workers, who assist and monitor your loved one.  Your loved one will receive bathing/hygiene services, meals, activities, housekeeping, etc.  There are many facilities that provide this level of service.  You could tour facilities now, narrow down to the one you like, and put down a deposit.  Putting down a deposit does not mean you have to move your loved one in soon.  It means you are interested.  If you get offered an available space but don’t need it yet, you can say, “We aren’t ready right now, but keep us on the list.”

    You may never use your backup plan, but it is good to have one just in case.  Your future self will thank you.  If you would like to talk more about backup plans and get some feedback and advice for your particular situation, give us a call at 901-854-1200 and/or make an appointment to come by and see us.

    December 27, 2019

    Communicating with Your Doctor

    As dementia progresses, your loved one’s physician will be an invaluable resource for you. You need to be able to ask questions and effectively communicate your concerns. These are our tips to make the most out communication with your loved one’s doctor:

    Have a physician that you trust.

    This is SO IMPORTANT! Because your loved one has a complex health concern, you need a doctor who won’t rush you, who will listen, and who will act upon concerns when appropriate. If you don’t feel like you can trust your loved one’s doctor or if you feel like the doctor doesn’t have your loved one’s best interest at heart, go to a new doctor.

    As much as possible, avoid discussing issues in front of your loved one.

    If possible, communication with the physician should not be conducted in front of your loved one.  No one likes to be talked about, and it can be embarrassing to have your issues discussed like you’re not there.  Be sensitive to this.

    Work with the physician’s office on how to communicate concerns.

    The doctor may prefer you send a message on the patient portal, call, or hand in a note when you arrive.  Ask the nurse if their office has a preferred method of communication.

    Be honest with the doctor.

    Now is not the time to protect your loved one’s reputation.  Be honest with the physician about what is going on.  If your love done is drinking alcohol, don’t hide it.  Alcohol could affect many medications and your doctor needs to know.  If a new issue has come up, don’t downplay it in the hopes it will resolve itself.

    Be descriptive but concise.

    It is one thing to say, “My husband is aggressive.”  It is another thing to say, “My husband verbally threatens me;” or “He throws things and shoves me.”  Aggressive does not paint a clear picture.  Be specific without being long-winded.

    Ask questions.

    If you don’t understand the need for a medication, ask.  If you don’t understand what test results mean, ask for clarification.  If you don’t understand a diagnosis, ask for more information.

    Report significant changes.

    Examples could be a sudden increase in libido, changes in appetite, increased gambling, etc.

    Keep a list of questions and concerns.

    Jot them down in a notebook or on your phone.  You may forget your questions in the moment, so it’s always good to have a reminder.  Your family might find it helpful to use a calendar to jot down things you notice – especially if multiple family members care for your loved one.  Then, you can all compare notes.  You might find that other family members notice similar or different behavior changes to what you observe.

    November 27, 2019

    Preparing for the Holidays


    The holidays are busy. Parties to attend, family to visit and family to entertain, gifts to buy, dishes to make. It can all be too much – especially when you are caring for a loved one with dementia. But it doesn’t have to be this way.

    The point of the holidays isn’t all the stuff and the hoopla. The point is to celebrate, to honor, and to cherish. It’s okay if the season isn’t as grand as it once was. Don’t expect it to be. You want to know the best holiday recipe? A heaping cup of simplicity and a half of cup of planning with a pinch of good communication and boundary setting. That makes for some joyful days!

    Here’s our recipe for happy holidays. We suggest you start prepping the ingredients now, but in your holiday prep, keep in mind that there’s no perfect holiday. Perfection is unattainable, but really good days are possible. This is how we think you can make them happen:

    Declutter the calendar.

    Don’t plan to attend every event and party. It is OK to say No to invitations (and not feel guilty about it). Strategically pick and choose which events you would like to attend. For example: Instead of hosting your usual Christmas Eve dinner with the whole family and you cook everything, choose to host a lunch potluck. Lunch may be a better time of day for your loved one, and a potluck takes the pressure off you. AND/OR you can ask another family member to host, so you and your loved one can attend and leave when needed.

    Scale down, and turn down the volume.

    Your loved one may not be able to handle a full day of the entire family. Limit time at gatherings. You can also find a quiet room for your loved one to be in, and ask family and friends to visit one-on-one in a much more manageable environment.

    Stick to the routine.

    The holidays can get our schedules out of whack. Keep routines as much as possible because routines make for easier days. Serve meals at regular times, schedule afternoon rest at the regular time, go to sleep at the regular time. Keeping to a schedule will help your loved one remain as rested as possible.

    Involve your loved one.

    While Mom may not be able to independently make her famous coconut cake, she can help pour pre-measured ingredients and stir everything together. While Grandpa might not be able to chop wood or light the fireplace, he can help carry in a piece of wood. While your wife may not be able to play the piano, she can still sing along, dance, or just enjoy the music.

    Make a wish list for you and your loved one.

    Your gift wish list should look different than it has in the past. Here are some things we suggest: money to pay for care, soft blankets, 30-piece puzzles, magazine subscription, gift card for stores or for meals to-go, favorite music, personalized book with family pictures and captions about who is in each picture/what is going on in the pictures (recommendation: Shutterfly).

    Help your family and friends know how to interact.

    Explain to family and friends about your loved one’s current state, so they will know what to expect. Remind them NOT TO QUIZ. Instead of asking, “Do you know who I am?” coach them to prompt: “Grandpa, it’s Jason. I’m so glad to see you.” And instead of asking, “Susan, who is in this picture?” coach them to tell a story: “Susan, (while showing the picture), here is a picture of us in Gatlinburg. That was a fun trip. It snowed the whole time.” Remind family members not to argue, even if what is being said makes no sense. Go with the flow of the conversation.

    Simplify decorations.

    Too many decorations may be too much for your loved one to take in… and too much for you to put up. It is OK to scale down. Maybe you only decorate the mantle or have a table top tree instead of decking out the whole house. Maybe you just put a wreath on the door instead of lights everywhere. Maybe you just put out a pretty tablecloth instead of the endless china set.

    Plan ahead.

    Planning ahead allows you to create opportunities for success. Order your groceries online to avoid the craziness of the aisles at the store. Start your gift shopping early to avoid the rush and crowds. Crowds are overwhelming. Plan around them.

    Make time for yourself.

    Plan for an in-home caregiver, so you can go to a Christmas party or get shopping done. (Schedule this EARLY!) Or ask a family member to come stay with your loved one, so you can get things done.

    Enjoy!

    Sit with your loved one and listen to Christmas music. Turn down the lights and watch the tree glow. Go for a drive to see lights. Watch an old Christmas movie that you both have always loved. Eat pumpkin pie for breakfast. Take time to enjoy the holidays and your family.

    2 Important Bonus Notes:
    1. If you are traveling, plan, plan, plan, and see our blog post on travel tips.
    2. If your loved one lives in a facility, ask when holiday activities are scheduled, and plan to be there to celebrate with your loved one.

    November 1, 2019

    Thanksgiving

    I was planning to write a blog post on the benefits of thankfulness. I was going to talk about how gratefulness reduces stress and improves mood. I was going to share some tips on incorporating more thankfulness into your daily routine. But then I realized… instead of telling you how to be thankful, I should tell you why I’m thankful for you.

    Caregiver, I am so very thankful for you. Bask in that for a moment. You are appreciated. You are seen. We see your efforts, sacrifice, and love. You may feel ordinary and frail and like a total failure. Be encouraged. You are worthy of thanks.

    1. I am thankful for your strength. You push through each day, even when you are tired, even when you feel like you don’t have anything else to give.
    2. I am thankful for your bravery. You are brave enough to ask for help. You are vulnerable enough to say: “I can’t do this alone.”
    3. I am thankful for your example of love. You do 1,000 little things each day to give your loved one the best days possible.
    4. I am thankful for your selflessness. I am thankful for the difficult days and sleepless nights when you tend to your loved one’s needs.
    5. I am thankful for the way you advocate. You stick up for the one you love. You work with doctors to make sure your loved one is as healthy as possible. You work with other family members to make important financial and care decisions.
    6. I am thankful for your humility. I am thankful that you reach out to others for support and information. You call or stop in with questions, attend support groups, and lean on the wisdom of others.
    7. I am thankful for your humor. You don’t take everything too seriously. You still smile and laugh. You go out of your way to make your loved one laugh.
    8. I am thankful for your respect. You treat your loved one with such dignity. You know your loved one is an adult and not a child. You respect their history and agency.
    9. I am thankful for your perseverance. You know this is a marathon and not a sprint. I am thankful when you recognize you need to care for yourself, too. When you realize that caring for yourself doesn’t make you selfish, but rather strengthens you for the days ahead.
    10. I am thankful for your trust. I am thankful that you allow us to care for your loved one and to be a part of your lives. And I am thankful that you keep us in the loop even after your loved one has left our care (because we miss you so!).

    September 30, 2019

    Caregiver Wish List


    One struggle that we often hear from caregivers is that they feel alone and isolated. Caregivers say that family and friends no longer come around. One caregiver said, “When we go out to a family event or get together, it’s like we have a bubble around us, and no one wants to penetrate that bubble to come talk to either of us.”

    Caregivers say that people will offer to help by saying the usual: “Let me know if you ever need anything.” “Let me know what I can do.” But it never gets past that. Caregivers say thanks but don’t know what to ask for in the moment. Often times, a well-meaning friend or family member doesn’t know what to offer, but they are willing to help if given a task.

    Our advice to caregivers: Be specific.

    Write out an actual wish list (just like you would write out a Christmas list). What are things you would like for someone to do for you and/or your loved one? The items on this list can free up time for you to have a break from some of your responsibilities or can give you a break financially for things you would otherwise be paying for.

    Here’s some example wish list items to get you thinking:

    • Deliver a hot meal every other Tuesday
    • Make an extra casserole or a double batch of soup
    • $ for in-home care
    • $ for a day at Page Robbins
    • Take loved one to get a manicure while caregiver runs errands
    • Visit every other Saturday for a few hours
    • Call once a week to check in
    • Rake the yard
    • Invite loved one over to watch a football game one Saturday

    Be specific. Make out a wish list. Type it up. Write it out. Jot it down on a piece of scrap paper. Decorate it with glitter stars and doodles. Put it in your phone. Whatever works for you! The next time someone asks you how they can help, give them something specific from your list, or give them the whole list and have them pick.

    Our advice to family, friends, and neighbors of caregivers: Ask for specifics, and listen.

    Rather than: “Let me know if you need anything.” Ask: “What can I do to help you?” Then, listen. If they don’t have a response, encourage them to make a wish list. If the first time you ask, the caregiver says no help is needed, it’s okay to ask again later. Show the caregiver that you are sincere in your desire to help.

    Some good questions to ask:

    • I made an extra batch of soup. When is a good time for me to drop it by?
    • Can I come over to help you with your honey-do list? Change light bulbs? Fix the leaky faucet? I’ve got free time every day around lunch time next week.
    • Can the kids and I come over and rake the yard this weekend? It will be a good family activity. We would love to help.

    Ask for specifics. Listen. Encourage your caregiver friend to make a wish list. Keep in mind, it can be hard to ask for help. Be ready to help where and when you can. Check out our recent blog post on 31 Ways to Care for Caregivers. It might give you ideas for ways you can support your caregiver friend.

    This post is a part of our #iCareforCaregivers campaign. Want to learn more about #iCareforCaregivers and how you can join in? Check out the official webpage at pagerobbins.org/icareforcaregivers.

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