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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  • October 13, 2020

    Toileting

    This is a subject that can be awkward to discuss.  But it’s something that caregivers often have questions about – anything and everything related to toileting.  There’s no taboo subjects here, just real advice for your real life, so let’s just flush this out (bad joke!).  As dementia progresses and individuals age, incontinence is a struggle.

    What causes incontinence?
    If your loved one has dementia, they might not notice the urge to go.  They might not be able to find the restroom, or maybe they can’t get to the restroom in time.  Or your loved one might not know how to perform the basic steps for toileting.

    It is important to rule out medical reasons.  There are many things that could cause incontinence – urinary tract infections, prostate trouble, medication side effects, etc.  Be sure to let your loved one’s physician know about incontinence issues.  Your physician can determine if the incontinence is treatable.

    Practical Tips for Dealing with Incontinence

    Set a toileting routine.

    Remind your loved one every 1.5-2 hours to go to the restroom.  Set alarms for yourself.  Try phrases like:
    “Honey, it is time to go to the bathroom.”
    “Let’s run to the bathroom before we sit down to lunch.”
    “Let’s get up and stretch our legs.” (as you walk to the bathroom)

    Watch fluid intake.

    Hydration is important, so don’t restrict fluids.  But be careful about the type of fluids your loved one is drinking and the time of day they are drinking.  Caffeinated beverages can increase the need to urinate.  Drinking later in the evening can cause nighttime incontinence.  In the evenings, offer a small cup of water rather than a large glass of tea or juice.

    Watch for signs.

    Even if your loved one can no longer tell you that they need to go to the restroom, they may get restless.  They may start pulling at their clothes or grimacing.  Watch your loved one’s body language.  Provide prompting when you notice the signs.

    Evaluate your loved one’s clothing.

    Clothing can be a barrier to proper toileting.  Your loved one may not know how to unbutton/unzip pants or how to undo a belt.  Maybe your loved one thinks she needs to take off her dress before going to the bathroom and can’t get it done fast enough.  Instead, try pants with an elastic waist and skip the belt.

    Use disposable briefs/underwear. 

    Notice that we do not say “diaper” or “pull up.”  A baby wears those items, and your loved one is an adult.  Using age appropriate terminology makes a difference.  When it is time for your loved one to start wearing disposable briefs/underwear, it is a good idea to hide or get rid of their regular underwear.  Out of sight, out of mind.  There are many kinds of disposable briefs to choose from – different sizes and absorbency levels.  Start with buying smaller packages to find the right fit.

    Keep a spare change of clothes.

    Keep a bag in the car with an extra pair of pants, a shirt, socks, shoes, and disposable products.  Better safe than unprepared.  Also be sure to bring a spare change of clothes when traveling (on planes, etc.).

    Inspect your bathroom with dementia eyes.

    • Is everything white or lightly colored (including the toilet)?  Your loved one may not be able to see the toilet.  Install a contrasting color toilet seat, so it’s easier to spot.
    • Are there lots of decorative pieces, bottles, and toiletries?  It could be that the bathroom is visually overwhelming.  Put things away to limit distractions.
    • Do you have dark rugs on a light floor?  Vision changes with dementia can make those rugs look like holes in the floor.  And rugs can be a fall hazard.  Consider getting rid of rugs.
    • Is there anything to hold on to, or is the toilet very low?  Install grab bars or an elevated seat if needed.
    • Is it easy to find the bathroom?  Make sure that the bathroom and pathway to the bathroom are well lit.  And keep the door open, so the toilet is visible.

    If your loved one is toileting in odd places, inspect your home with dementia eyes.

    Your father might pee in the fake Ficus because it reminds him of peeing on a tree when working outside.  You grandmother may pee in a trashcan because when she was a child, they didn’t have indoor plumbing and sometimes peed in a bucket.  If your loved one is toileting in odd places, remove the items or put a lock on a closet or room door.  You can also try putting a restroom sign on the bathroom door.  Sometimes a visual reminder can help.

    Make the bed with easy clean up in mind.

    Use a waterproof mattress protector.  Then, use disposable or washable bed pads that your loved one can sleep on.  You can put the pads on top of the sheets OR you can layer bed pad, then fitted sheet, bed pad, then fitted sheet.  Replace soiled pads and take off layers as needed.  This way you don’t have to remake the whole bed in the middle of the night.

    Ensure proper hygiene.

    Good hygiene is important to good health.  Poor personal hygiene can lead to UTIs, skin breakdown, and infections.  It’s important that your loved one stay as dry as possible.  Change disposable pads/briefs multiple times per day as needed.  Ensure your loved one wipes well.  Flushable wipes can be helpful.  You may need to assist with toileting to ensure your loved one is clean and dry.  Watch for rashes and areas of irritation and contact your physician or pharmacist for recommendations.  Untreated rashes can become a larger health issue.

    Be supportive!

    Your loved one is not trying to irritate you.  Your loved one is struggling and may be embarrassed about the incontinence.  Be respectful.  Instead of, “You peed on yourself?” or “You wet your pants again?” say, “Anyone can have an accident.” or “I am sorry that happened. Let me help you.”  Don’t scold or make the person feel guilty.  Use appropriate language, such as pee, toilet, commode.  Don’t say potty or tee-tee.  Ensure their privacy as much as possible and help to preserve their dignity.

    August 27, 2020

    The Art of Redirection

    Whatever type of dementia a person may have, there is a good chance that they will display some undesirable behaviors.

    Common Unwanted Behaviors

    • Asking the same questions over and over
    • Repeated requests
    • Negative attitude about a subject, activity, or person
    • Pacing
    • Cursing
    • Words or actions that express agitation
    • Words or actions that express anger

    These behaviors have meaning. They may signal an unmet need, such as hunger or needing to use the restroom. They may be caused by an emotion – fear, loneliness, and boredom are the most common we see. Or they may be triggered by a hallucination or delusion.

    Redirection can be used to address these undesirable behaviors. Redirection shifts a person’s focus from the current situation to another subject and emotion.

    How to Redirect

    • Remember your loved one is not trying to be difficult. They are living in an altered reality. They are losing control.
    • Pause and take a breath. Your loved one will be able to pick up on your tone and body language. If you are frustrated, your attempts to redirect will probably fail.
    • Assess your surroundings. Is it too cold? Is it too noisy? Small adjustments can make a big difference.
    • Assess the situation. Could your loved one be hangry? Do they need to go to the bathroom?
    • Enter their reality. Don’t try to reason. Your loved one may have lost the ability to follow logic. Trying to force it will only make the situation worse for both of you. For example, Mom thinks someone stole her ring. You know she lost it. Just as you know she lost it, she knows someone stole it. She cannot follow your reasoning. You are the one that must shift.
    • Have multiple tools in your tool belt. Don’t expect what worked one day to always work. Every day is different.
    • Keep the redirection simple. Don’t overcomplicate with too many words or explanations. Redirection can be as simple as: “Look, a butterfly!” or “I think it is finally supposed to stop raining today.”
    • Include items and subjects your loved one likes. You know your loved one best. Talk about positive past experiences, hobbies, or pictures of family and friends. Bring your loved one a cozy blanket or favorite snack.

    Let’s walk through some examples of redirection:

    Example 1
    Mom starts the morning by asking, “What time is my appointment with the doctor?” You reply, “Your appointment is next week.” A few minutes later, Mom says, “I need to get ready for my doctor’s appointment today.”
    You could start an argument by angrily replying, “Mom, I told you the appointment is next week.” OR you could say, “I forgot to tell you that the doctor’s office called and changed the appointment to next week. Let’s get dressed and run to the grocery store instead.”

    Example 2
    It is time for your husband’s morning meds. He refuses them and accuses you of trying to poison him. Remove the pills, and say, “I am sorry you are upset with me. Can I get your breakfast? Cereal or eggs?” In a few minutes, try again. Say (while handing him the meds), “Honey, you asked me to remind you to take your morning meds.”

    Example 3
    Dad is watching the local news and hollering at the TV. He is using lots of curse words, and your children are in the next room. Ask, “Dad, will you come help me with something?”

    Example 4
    Your wife is searching the house for something, but she can’t tell you what it is. She is turning the house upside down – pulling everything out of closets and emptying drawers. Try, “I lose things all the time. But you know what I found the other day? A picture of you and me and in Hawaii. Let me show you.”

    Example 5
    Mom keeps asking to go home, even though you are all at home. Say, “How about we go home after lunch. Let’s have snack to tide us over until lunchtime.”

    Example 6
    Your husband keeps asking for his mom. “Where is Mom? Why isn’t she home yet?” Don’t say, “Your mom died 25 years ago.” He may not remember and is now experiencing the loss of his mother as if it is the first time. Instead say, “I bet we will see your mom later this afternoon, but for now, would you like to go for a walk with me? The weather is so nice!”

    Example 7
    Dad finished lunch 10 minutes ago and is asking for lunch. He is adamant he didn’t have lunch. Say, “OK. I will fix you some lunch in a few minutes, as soon as I finish the laundry. That laundry pile just keeps growing. Want to help me?” (We call this a fiblet. You have permission to lie if it is in the best interest of your loved one’s mental and physical wellbeing.)

    Example 8
    Your wife is worried about paying the power bill. It has already been paid, but she won’t stop asking. Say, “I will take care of that in just a couple of minutes.” If that isn’t enough, make a fake phone call to pay the bill.

    Example 9
    Dad is pacing outside and seems frustrated. It’s 30 degrees. Simply say, “Brr! It is getting cold out here. I have a nice cup of coffee for you inside.”

    Redirection helps both you and your loved one – relieving anxiety and frustration for both of you. If you’re struggling with a particular unwanted behavior and need some additional support, please give us call at 901-854-1200. We would be happy to talk through your specific situation.

    July 30, 2020

    Mental Health Check

    Caring for a loved one with dementia is hard any day. It is especially difficult during a pandemic. So our question for you today is – How are you?

    How are you coping right now?
    Are you having trouble finding things to look forward to?
    Are you disappointed by canceled travel plans and gatherings?
    Are you feeling lost without regular church services?
    Are you feeling lonely and isolated with your worries?
    When was the last time you were able to hug a friend?

    This is a really difficult time. And on top of all this, you are caring for someone who is especially vulnerable. It is important to recognize that all this stress and change can greatly affect your wellbeing.

    The toll to your mental and physical health can range from feeling overwhelmed to health issues to depression and even suicide. It is important that we each self-examine. We need to be real with ourselves.

    Signs of caregiver stress to watch out for:

    • Anger at your loved one
    • Anger at your situation
    • Trouble sleeping
    • Interrupted sleep patterns
    • Anxiety
    • Exhaustion
    • Irritability
    • Lack of concentration

    If you start feeling like life is piling up on you, if you are experiencing anxiety or depression, here are some tips from counselor Grace McLaren on coping.

    Create statements and affirmation on why your life is worthwhile.

    Recognize warning signs of fragility such as sleep problems and outbursts of rage.

    Identify triggers that send you into the red “I’m note okay” zone.

    List five supportive, nurturing people and identify places to go for care and renewal. 

    We found these great tips in this Daily Memphian Article.

    We would add to this list:

    • Set a new goal for yourself. It can be helpful to have something to work towards.
    • Be kind to your body by eating healthy, nourishing foods. We feel better when our bodies are well-fed and hydrated.
    • Get moving! Exercise is so good for your mental health. Walk 15 to 30 minutes per day. Garden. Dance.
    • Pay attention to your caffeine intake. Are you drinking coffee so late in the day that it makes it hard to fall asleep? Does caffeine make you feel more anxious and jittery? Consider cutting back the amount of coffee you drink and/or switching from soda to water.
    • Take 30 minutes to mediate, relax, or read.
    • Limit screen time. Social media time in particular! If we are constantly taking in a stream of frightening images, worries, and the opinions of others, we are going to feel more anxious.
    • Keep a gratitude journal. Name 1 thing each day that you are grateful for.
    • Give yourself permission to laugh. Watch a funny movie, read a funny book, watch a sitcom.
    • Forgive yourself. You are not a bad person for getting frustrated. These feelings are very normal. 

    We know that a lot of these things are easier said than done. Maybe you don’t have 5 supportive, nurturing people you can turn to when you’re not okay. Know that we are willing to support you. If you need to talk things out, give us a call.

    We all need to vent, and family or close friends are not always the answer. We are happy to be a non-judgmental, helpful resource. 

    We also recommend speaking to a counselor or your physician – especially if this is more than just a passing moment of anxiety or depression. Asking for help is not a sign of weakness. Asking for help is a sign of strength. It takes courage to recognize and acknowledge that you need help, and it takes vulnerability to reach out.

    So we ask again, how are you?

    Call us: 901-854-1200
    Email us:
    sheri@pagerobbins.org
    We’re open Monday to Friday, 7 am to 6 pm. If you need assistance after hours, call the Alzheimer’s Association 24-Hour Helpline at 800-272-3900.

    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.

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