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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  • June 30, 2020

    Advance Directives

    End of life conversations are difficult to have. Many do not want to think about end of life for their loved ones or themselves, but these conversations are important.

    There is a common myth that making end of life decisions and discussing end of life wishes will hasten death. This is NOT true. Making these decisions does not hasten death. Making decisions ensures that your loved one’s wishes are carried out. We will all die. Families fare better when decisions are made ahead of time. It is extremely difficult to make these decisions in a crisis.

    According to the TN Department of Health, Advance Directives are “a written document that sets out an individual’s preferences about treatment, should the person become incompetent or unable to communicate these preferences to medical personnel. Not only are advance directives used to instruct medical personnel when to withdraw or withhold life-sustaining procedures, but they are also used to record a patient’s wish to receive all available medical treatment.”

    3 Advance Directives to Know About

    Power of Attorney for Healthcare

    This is a legal document that designates who will make healthcare decisions for an individual if he/she cannot make those decisions. A Power of Attorney for Healthcare must be completed while a person is still able to make decisions. If this legal document is not prepared in a timely manner, your loved one with dementia may no longer be able to make his/her wishes known. If this is the case, you will need to go through court proceedings to have conservatorship established.

    We strongly recommend everyone with memory impairment have a power of attorney for healthcare. It will be very difficult for you to make any kind of decisions for your loved one without this.

    Living Will

    This is a legal document that outlines a person’s wishes. It indicates if the person wants artificial nutrition, life support, or other medical intervention. The living will has a magic word: If. “If I am in a permanent unconscious state, then…” or “If I have a terminal condition, then…”

    *A side note for those whose loved one is enrolled at Page Robbins: We are not physicians, so we do not determine “ifs.” We are not able to make those decisions. A physician can determine to withhold lifesaving measures based on a living will. If you do not want us to do CPR on your loved one, we will need a POST form, not a living will.

    POST Form (Physician’s Order of Scope of Treatment)

    This is a one-page document that is discussed with and then signed by a physician, making it a physician’s order. This form is completed based on your loved one’s wishes, best interests, and medical needs. Once completed, this form allows those who are caring for your loved one to quickly know what to do concerning CPR, medical interventions, and artificial nutrition. Once this form is signed by the physician and the individual or healthcare surrogate, it is official.

    Making these decisions ahead of time can provide great comfort in a crisis. You will know that your loved one’s wishes are going to be honored.

    And please know that you and your loved one can change your mind. Your loved one may decide that he/she wants CPR, and later as new illnesses arise, he/she may want to be considered a Do Not Resuscitate. A new form can be completed, just be sure to destroy the old ones.

    It is also very important to note that forms and pre-planning are great. BUT if they are not shared with physicians and responsible parties, no one will know they exist. Give copies of these documents to physicians, designated decision makers, and family members.

    It is also good to keep the forms in a place that is easy to access. In an emergency, it does no good if the POST form is buried away in a safe. Instead, put that form in an envelope and hang it on the side of the fridge, tape it inside the kitchen cabinet, and/or put a copy in the glove compartment of your car. If there is an emergency, those forms will be handy.

    Page Robbins or any long-term care facility must have a copy of the POST form, so we will know whether or not to do CPR.

    Again, please know that end of life discussions will not hasten death. Planning ahead can give peace in very uncertain times. There is no age requirement for these discussions. It is important for all of us, no matter our age or life situation, to think about these things and make our wishes known.

    If you have questions or would like to discuss your particular situation, please contact our Social Worker, Sheri at 901-854-1200. Also, start a conversation and discuss these details with your physician.

    Additional Resources

    Tennessee’s Information on Advance Directives
    This includes a link to Tennessee’s POST form

    A good death by Beth Fahlberg, PhD, RN, CHPN
    An opinion piece from a nurse and former caregiver

    What Is a Good Death? How to die well. by Marilyn A. Mendoza, PhD
    An opinion piece from a psychologist

    May 28, 2020

    Decision Making

    Caregivers are required make an overwhelming number of decisions every day – both for yourself and the person you are caring for. And some of those decisions are not easy to make. How do you deal with difficult decisions? What do you do when you are experiencing decision-making overload?

    Here are some things to remember when decision making starts to weigh you down:

    Don’t put off making a decision due to fear.

    Uncertainty is scary. It’s hard to choose when we aren’t exactly sure what the outcome will be. The fear of making the wrong decision can paralyze us. But putting off a decision is still making a choice to do nothing and let things go as is.

    Seek advice.

    Ask someone you trust and who supports you to share his or her view of the situation. That may be a family member, friend, or another caregiver. If you are having trouble finding someone, let us know. We can connect you with another caregiver who has experienced a similar situation.

    You can also seek guidance from a professional, such as a social worker, geriatric care manager, nurse, or physician. Getting advice from others will help you weigh your options and see things from a different perspective.

    Do your research.

    An informed caregiver is an empowered caregiver. If you are looking at memory care for your loved one, research facilities – look online, go visit, ask around. If you need to decide between 2 different medical treatments for your loved one, ask the physician questions and research online. Dig in, so you are informed. There may be more options than you realized.

    Honor your loved one’s wishes.

    Make decisions based on what your loved one would have wanted. You don’t have to share those views in order to honor his or her wishes.

    Think back to past conversations. Has your loved one ever expressed views on feeding tubes, CPR, aggressive treatments, etc.? If not, think about what decision would make the most sense based on the way he or she has lived.

    Forgive yourself. You will make mistakes.

    We all make mistakes. You will handle situations wrong. You will make choices you regret. But don’t let those mistakes cripple you. Hindsight is 20/20. We can look back on previous choices and know the path we should have taken, but this isn’t how decisions are made. Make the best decision based on what you know now.

    If you start feeling down on yourself for making the “wrong” choice, give yourself a break and know you made the best decision you could at that time. Learn. Don’t linger on mistakes.

    Consider the implications for you.

    Your decisions don’t just affect your loved one. They affect you too. You are an important part of the equation. How will this decision affect you? Will this create more work for you? Can you take on more? Are you physically able to handle it? You must consider yourself when making decisions.

    Be honest with yourself about what you can handle and how much responsibility you will be taking on with each decision. You are not being selfish. You are considering your own well-being – for the good of your loved one, you, and everyone else in your circle.

    MAKE A CHOICE!

    Once you have gathered advice, done the research, and thought through the possibilities, make the decision. Give it a real shot and then re-evaluate. If you decide on a course of treatment and it doesn’t work, you can change your mind.

    If you move your loved one into a residential care facility and the first 24 hours are rough, don’t give in yet. It takes time to settle in. Listen to the professionals and give your loved one a chance to adjust. If things don’t work out with time, you can re-evaluate and make another choice.

    For caregivers, there are very few decisions that can’t be undone.

    April 30, 2020

    Productive Activity

    While we’re homebound and unsure about the future, it can be hard to find meaning in each day.  We all need meaningful activity in our daily lives to feel a sense wellbeing.  And those with dementia especially need meaningful activity to help them feel productive and valued. 

    According to dementia specialist Teepa Snow, there are four types of meaningful activities that humans require:

    1. Productive Activity – This is critical to feeling needed and like we have value to offer.  This kind of activity tells us that what we do matters.  It boosts our self-esteem.
    2. Leisure Activity – This is what we do for fun.  These activities give us joy, make us smile, and help us feel good.
    3. Self-Care Activity – This includes our daily living activities and managing our work, home, and being in tune with the world around us.
    4. Rest and Restoration – These activities are what we do to recharge our batteries.  This looks different for each person, as it includes whatever revitalizes your mind, body, and spirit.  This could include sleep, meditation, spiritual practices, exercise, and more.

    Caregivers tend to focus on leisure, self-care, and rest and restoration activities for their loved one, but we often forget to include productive activity.  It’s easy to forget that our loved ones need to feel valued and like they still have something to contribute.  Age and dementia don’t remove a person’s desire to be productive and to achieve goals. 

    Productive activity helps maintain physical and mental health and increases mobility.  As we continue being safer at home, with more time to spare, please remember that your loved one needs and will benefit from productive activity. 

    Ask Mom to look through and arrange old photos.  Ask Dad to help you in the garden.  Ask your husband to help you paint some old furniture.  And keep in mind, it’s not about the finished product.  It’s about the process.  The point isn’t to get stuff done perfectly.  The point is to engage with your loved one and to help him/her feel valued.

    Here’s a few more ideas of productive activities to get you thinking: sort and fold laundry, pull weeds, pick herbs, bake goods for a neighbor, cook family dinner, give the dog a bath, sweep, wash dishes by hand, dust, make and send a card to a friend or family member, organize a book shelf, polish silver, knit, sew face masks, read to a grandchild via Zoom. 

    Try to find an activity that fits with your loved one’s history and interests. Did Mom used to be a teacher? Maybe she can help you with a lesson plan for the kids. Was Dad a Mr. Fix-It? Ask him to help you sort the toolbox or sand wood for a project. These activities will take pre-planning on your part, but it’s totally worth it! Consider any safety measures as well as help you might offer. Pick an activity and adjust to your loved one’s cognitive and physical abilities.  Set them up for success!

    So, what are you waiting for?!  You’ve got work to do!  And who knows… you might actually enjoy it.

    April 15, 2020

    The Surprising Benefits of Exercise

    In these uncertain times when we are all confined to our homes, we try to fill our days with engaging activities that will pass the time and minimize stress, anxiety, and worry.  Although board and word games are a great way to pass the time, we must not forget good ol exercise!  Daily physical activity is important for strengthening our bodies and minds.  Studies show that exercise plays a central role in our overall physical and mental health.

    Did you know?

    • Exercise reduces the risk of heart-related illnesses, such as heart disease and high blood pressure.
    • Exercise increases strength, which in turn promotes safe mobility and decreases the risk for falls.
    • Exercise promotes healthy bones and joints.
    • Exercise decreases the symptoms of anxiety and depression.  It fosters a better mood and sense of wellbeing.
    • Exercise reduces joint swelling and pain associated with arthritis.
    • Exercise increases bowl motility and decreases instances of constipation.

    Exercise does NOT have to be weightlifting 50 pounds or a 100 yard dash.  For seniors and/or those with many health concerns and limitations, exercise may include activities like walking to the mailbox, walking around the block, or simple chair yoga.  Remember to consult your doctor before beginning a new physical activity program.

    Even the most simple activities can increase movement and encourage positive engagement between you and your loved one.  Also, exercise can be fun!  We all need some fun in the midst of a crazy, changing world.

    Where should you start?  We suggest pushing away any tripping hazards and putting on a favorite song. (We suggest “These Boots Were Made for Walking.” It’s been stuck in my head the whole time I’ve been writing this post!) Then, dance like nobody’s watching.  Seriously… we’re in quarantine, so nobody is watching.  It’s dancing time! So please, make time to put on those boots and get to walking, dancing, and moving.

    April 2, 2020

    Respectful Communication

    It’s so important to be intentional and kind when we communicate with individuals with dementia.  There are many things that we can do to improve our communication, such as set a positive tone, be clear, and keep sentences short.  You can learn more communication tips from our previous blog post here.

    Another very important aspect of good communication is RESPECT.  At times, caregivers can use what is called “elderspeak,” or baby talk.  Elderspeak is communication that is significantly slowed and simplified, spoken in a sing-song voice, and/or includes endearing terms (miss, little lady, honey, etc.).  Elderspeak can also include unnecessarily using the pronouns “we” and “us” in place of “you.”  For example: “How are we doing today?”

    Elderspeak is often unintentional.  A care provider is genuinely trying to be supportive, but their communication comes across as patronizing.  This is why it’s so very important to be intentional about how you communicate with your loved one with memory loss.

    Reasons to Avoid Elderspeak

    • It can be confusing.
    • It can be embarrassing for your loved one.
    • It can lead to agitation, upset feelings, or episodes of lashing out.
    • It can be damaging to your loved one’s mental health and wellbeing.  It can lead to decreased self-esteem, depression, and withdrawal.
    • It assumes your loved one is childlike, weak, and/or incompetent.
    • It assumes that the speaker has more power and knowledge than the listener.

    4 Simple Tips for Avoiding Elderspeak

    • Remember that your loved one is an adult and deserves respect. 
    • Put yourself in your loved one’s shoes.  Before you say anything, ask yourself: How would I want to be spoken to.
    • Be Aware.  We all do better when we pay special attention to the words we are using and our tone of voice.  It’s okay to slip up and say the wrong thing, but we can learn from those mistakes and do better in our next communication.
    • Choose your words carefully – especially when talking about everyday items!

    Some examples:

    • Disposable brief vs. diaper
    • Toilet vs. potty
    • Bedside toilet vs. potty chair
    • Butt or rear vs. hiney
    • Cup with a lid vs. sippy cup

    Adults with dementia and seniors are adults and deserve to be treated with respect.  Let’s do everything in our power to make sure they get the respect they need!

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