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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  • August 29, 2019

    Hallucinations and Delusions

    Often, people with dementia experience or believe things that are not real. This is called a hallucination or delusion. Hallucinations are false sensory experiences – perceiving something with your senses that isn’t real.Delusions are persistent false beliefs – believing something that isn’t real.

    These moments can be frightening. “There is someone living in my bathroom, and they see me when I’m naked.”

    They can also be a bit odd. “Christopher Columbus? I used to date him!”

    And sometimes, 1+1=3. The blanks get filled in with erroneous information. There is a noise coming in the from the bedroom window.  Someone must be breaking in.  I am in danger and need to call 911.  (When it’s just a tree limb brushing against the window.)

    Caregivers need to be investigators. What could my loved one be seeing or hearing? What conclusions could my loved one jump to?

    For example, if your mom says: “There is someone living in my bathroom, and they see me when I’m naked.” She may be seeing herself in the bathroom mirror and not realize it’s her own reflection. It’s troubling to think some strange person might be lurking in your bathroom

    On the flipside of that same scenario, we once had a participant who would peep into the restroom to have long conversations with “her grandmother” (in the mirror), and she was so glad that she could visit with her grandmother at Page Robbins. In this case, the false perception wasn’t disturbing to her. It was comforting.

    If your loved one is experiencing hallucinations or delusions, you need to tell your loved one’s physician. It could be a side-effect of medication. It could be a sign of another issue. Or it could be a part of the disease process. Not all hallucinations/delusions require treatment. If it’s not disturbing to your loved one, it might not need to be treated, but it’s good for the doctor to be aware.

    Some hallucinations/delusions are especially troubling. It’s important to be aware of these because the person experiencing them may react in ways that are potentially dangerous to themselves or others:

    • Someone is trying to break into my house, so I need a weapon to protect myself.
    • My babies are home alone, so I need to leave to go get them.
    • My spouse is having an affair, so I don’t want them to care for me anymore.
    • Someone is stealing all my money, so I need to hide it.
    • There are monkeys in the attic. I need climb up there and get rid of them.

    If your loved one is experiencing a troubling hallucination/delusion, you must consider: Are there guns in your home? Kitchen knives that are not secured? Are the car keys put away? Individuals with dementia often elope because they are on a mission to do something – to go to their other house, to take care of the children, to work, to care for their mother who needs them. Be aware of the potential for a harmful situation.

    How to respond when your loved one is experiencing a hallucination or delusion:

    • Listen. Don’t argue.
    • Respond calmly.
    • You don’t have to agree or disagree. Give a non-committal answer like: “I don’t hear the voices you hear, but it must be frightening to you.” (from The 36 Hour Day)
    • Reassure them that they are safe.
    • If you can, try to reorient back to reality, but if not, don’t push it.
    • Try to distract the person: “Let’s go to the kitchen to get a snack.” Once distracted, they may not see the hallucination. (from The 36 Hour Day)
    • Do what you can to calm the person. If your loved one is seeing a mouse under the bed, go in with a bag and catch the mouse. This may seem like lying, but this is your loved one’s perceived reality. You are doing the right thing by comforting them. (from The 36 Hour Day)

    Accusatory hallucinations and delusions are often directed at the person who is closest to the individual with dementia. Those accusations are hurtful. It’s hurtful when your spouse of 50 years accuses you of infidelity.  It’s hurtful when your dad accuses you of stealing from him. It’s hurtful when mom blames all her troubles on you. How do you best respond?

    • Try not to take these attacks personally. This is part of the disease process.
    • Talk to your loved one’s physician about the hallucinations/delusions.
    • Learn to say, “I am sorry.” And “I will try to do better.” Even if you didn’t mess up, sometimes this will just disarm your loved one and calm the situation.
    • Try to distract and change the subject.
    • Reassure them that you love them.

    If you have questions about your particular situation, give us a call (901-854-1200). We’re happy to help.

    July 30, 2019

    Self-Care for Caregivers

    Being a caregiver is hard. Being a caregiver for a loved one with dementia is even harder. You hear it all the time: “You need to take care of yourself.” I’m sure caregivers get tired of hearing it because it is much easier said than done. Taking care of yourself takes time and effort that quite frankly, you just don’t seem to have. 

    But the truth is you MUST take care of yourself. If you ignore your own mental and physical well-being, it’s quite possible that you won’t be around to care for your loved one. There are lots of scary statistics out there about health problems brought about by caregiver burnout. Unchecked, extreme stress can be detrimental to health, so it’s important to address it.

    There are small steps you can take to maintain and improve your well-being. We don’t suggest you try all the following suggestions at once. Pick 2. Pick one that you WANT to do and know you can accomplish. Then, pick another that you know you NEED to do (even if it scares you a little bit!). Ask a friend to help hold you accountable.

    • Set aside time for yourself. This could be a week in the mountains or 10 minutes on the front porch with a cup of coffee. You could have a friend or family member sit with your loved one while you go to a movie or get your nails done. You could arrange respite care for your loved one and go on a trip with friends.
    • Educate yourself. The more you understand the disease process, the better you can respond to your loved one. There are resources to meet every caregiver’s needs.  Here are just a few”

    Books

    We suggest The 36 Hour Day and A Pocket Guide for the Alzheimer’s Caregiver.  Come by our center at 1961 S. Houston Levee Road in Collierville (Monday to Friday, 6 am to 6 pm) to pick up your own copies for free. We are able to provide these books to public for free thanks to a grant from the Collierville Community Fund.

    Online

    The Alzheimer’s Association’s website has lots of helpful resources, as does the National Institute on Aging. Search Teepa Snow on YouTube for practical, honest information on personal care, communication, and more.

    Educational Sessions

    Look for caregiver education sessions in your community. We host a support group called Wine & Unwind that features a monthly care topic and guest speaker.  You can learn more about this and our other support groups on the Caregiver Support section of our website.

    Save the date for Baptist’s caregiver conference on Saturday, November 16 with featured speaker Eileen Poiley, Director of Education at USF Health Byrd Alzheimer’s Institute. More information to come. Sign up for our monthly Caregiver Connection emails to stay up-to-date on this conference, as well as our monthly blog posts and support group meetings.
    • Go to your appointments. It is common for caregivers to cancel or forget their own health appointments.  But it’s important to get your annual physical, mammogram, 6-month dental cleaning, etc. Neglecting your own health can lead to more severe concerns down the road.
    • Talk to someone. Talk to a friend, counselor, minister, or fellow caregiver. Join a support group. If you hold it all in, the pressure builds, and at some point, you will explode on the wrong person. It can be hard to talk to family, as they are too close to the situation and may not share your same view. Try to find a non-family member with which to share your frustrations and worries.
    • Give yourself a break and some credit. When you lie down each night, say to yourself: “I have done the best I could with the information I have, and that is enough.” You were not perfect before, so don’t expect yourself to be perfect now. Don’t dwell on the “what if’s” and “if only’s”. Focus on your strengths and the positives. You do a lot physically. You manage a lot emotionally. Give yourself a pat on the back, even if no one else is doing that for you.
    • Ask for help. There will be times when you will not be able to handle caregiving alone. Ask a professional for help. Call a friend. Reach out to a physician. Tell another family member what you need. You are not going to know the answer to every question – ask! Call Page Robbins (901-854-1200), and we will help you navigate.
    • Give yourself a present. Get a manicure. Order a new gadget. Pick up your favorite meal. When you don’t receive gifts very often, it can be a good boost.
    • Allow yourself to laugh. Laughter can heal the soul. Turn on a funny movie or TV show, listen to a funny podcast, read a silly story.
    • Eat well. Exercise. Sleep. Food is your fuel. Eat balanced meals. It’s tempting to live on junk food and snacks because it’s easy. Get plenty of fruits, vegetables, healthy fats, protein, and water. Exercise is good for your body, mind, and sleep. You don’t have to run. Walk, stretch, maybe try some yoga (a class or YouTube videos at home). A good workout will help you sleep. Sleep is important to healthy brain functioning. Don’t stay up too late if you don’t have to. Take naps, and don’t let anyone make you feel guilty about it!

    June 28, 2019

    Dental Hygiene Tips

    Keeping Up Dental Hygiene

    Most of us take our pearly whites for granted. We brush them morning and night. We floss. We get food stuck between our teeth and can get it out. We recognize when something hurts.

    People with dementia can’t always do these things, so their caregivers assume the responsibility. It isn’t easy to get an adult who doesn’t want to brush his/her teeth to do it (especially if you’ve just had a similar battle over changing into or out of pajamas). But it is worth the effort.

    When oral care diminishes, a domino effect of bad things can happen. First, cavities, broken teeth, and bad breath. Next, teeth pulled. Then, lost appetite and weight loss. An unhealthy mouth can also lead to infections and abscesses.

    If you notice your loved one’s oral care isn’t what it used to be, here are some ways you can help:

    • Instruct step-by-step. “John, lets brush your teeth.” “Put toothpaste on the toothbrush.” “Brush your top teeth.” “Spit into the sink.”
    • Model the action. Brush your teeth along with your loved one – just slow down and slightly exaggerate how you normally do it.
    • Assist hand-under-hand. Watch this short video from Teepa Snow. She demonstrates the proper form.
    • Brush your loved one’s teeth for them. Brush at a 45-degree angle. Focus on the teeth, gums, and tongue.

    Try both a regular and an electric toothbrush to see which one works better for your loved one. The electric brush may be helpful for some but too much stimulation for others.

    Mouthwash can be a good option as well. If your loved one swallows mouthwash, look for one that’s alcohol free.

    Regular dental check-ups are important – especially when your loved one’s personal dental hygiene is failing. Call ahead of the appointment to let your hygienist and dentist know about any problems.

    If your dentist office isn’t familiar with your situation, let them know ahead of time (without your loved one present) that your loved one has dementia/Parkinson’s/etc. When you prepare the dentist, they can provide a better and more dignified experience for your loved one.

    May 29, 2019

    Can my loved one still stay home alone?

    In the beginning stages of dementia, it is usually fine for your loved one to be left home alone for periods of time.  As your loved one’s cognition declines, his/her ability to be alone declines.  So it is important to reassess on a regular basis.

    Here are some scenarios to help you assess your loved one:

    If there were an emergency, could my loved one respond appropriately?

    • If the hot water tank started spraying hot water, would my loved one know what to do?  Could he/she avoid being burned?  Could he/she call someone for help?
    • If there were a fire in the house, would my loved one know how to get out safely?  Would he/she know to call 911?

    If someone tried to scam my loved one, is he/she aware enough to be suspicious?

    • If someone rang the doorbell and said they needed $300 for the pipe repair work they’ve been doing (but not actually doing), would my loved one pay?
    • If someone called and asked my loved one to verify his/her social security number, would he/she give out that number?

    How confidently can my loved one perform basic, daily activities?

    • Can he/she safely navigate the house without falling?
    • Is my loved one able to prepare basic meals and snacks?
    • Is my loved one independent with toileting?
    • Can my loved one manage his/her medicine?
    • Has my loved one ever had a stove or microwave incident that wasn’t an issue because someone was home?  BUT if he/she had been alone, it could have been a major incident?

    How does staying home alone affect my loved one’s psychological wellbeing?

    • Does my loved one become anxious at certain times of the day or when left alone?
    • Does my loved one call me constantly throughout the day, worried about where I am?

    If any of the questions/scenarios listed above made you hesitate, even just a little bit, then your loved one should NOT be left home alone.

    This is so important, we’ll say it again: If any of the questions/scenarios listed above made you hesitate, even just a little bit, then your loved one should NOT be left home alone. 

    When the time comes that your loved can no longer be left alone, you have options:

    • Take your loved one with you on outings.  Individuals with dementia need social stimulation.
    • Ask family or friends to be with your loved one for a couple of hours, so you can run errands.
    • Ask family or friends to take your loved one out for breakfast or lunch to give you time to do what you need.
    • Enroll your loved on in an adult day program.  Adult day programs are all about fun activities with friends in a safe environment.  The National Adult Day Service Association has information on choosing a center that is right for you.
    • Enlist the services of an in-home care agency.  In Shelby County, these services range from $18 to $22 per hour.  You can set up in-home care on a schedule or call the agency as needed.  (Pro tip: If the care provider they assign to you doesn’t appear to be a good fit with your loved one’s situation/personality, don’t be afraid to ask for someone else.)
    • Consider moving your loved one into a residential program.  We have a blog post here with tips on choosing a residential facility.

    If you determine that it’s fine for your loved one to stay home alone, here are some simple things you can do to keep your loved one safe:

    • Post a schedule for your loved one
    • Post a schedule of where you will be
    • Keep a list of important phone numbers by the phone
    • Prepare meals ahead of time (ready to eat or microwave)
    • Have family or friends call or stop by to check in
    • Set medications up in easy pill boxes or in an alarmed pill dispenser

    As always, if you have questions about your specific situation, we’re happy to help! Give us a call at 901-854-1200, or make an appointment to come see us in person.

    April 29, 2019

    Guilt and Caregiving

    Let’s talk about guilt.  Many (if not all) caregivers struggle with guilt.  There’s guilt over being embarrassed by your loved one, guilt for wanting to get out of the house and be alone, guilt for taking the car keys away, guilt for moving your loved one into a memory care facility, guilt for not handling a situation well.  It’s there in the big decisions and the day-to-day stuff.  You may even feel guilty about feeling guilty.  What’s a person to do?

    You do have a choice.  You can recognize and address guilt.  OR you can let it tear you apart.  You can acknowledge your negative feelings, or you can tuck them away, where they may grow into an even bigger problem.

    Let’s bring guilt out into the open and talk about it.  Because one of the things that makes guilt feel so awful is that it’s secret.  Let’s talk about guilt with these 10 tools for battling the guilt monster.  If you’re weighed down by guilt, print this list out, and put it up somewhere you can see it.  Be reminded that you are not alone.  There is a way forward.

    • Admit that you are experiencing guilt.  When we ignore it, it grows and causes us to make poor decisions that make the problem worse.  Your guilt doesn’t have to control your decisions.  Naming the feeling can give you a new mindset and make room for clear-headed decision making.
    • Be kind to yourself.  Bad days will happen.  You will be a mean, grouchy person.  You will say unkind things in anger and frustration.  Allow yourself some grace for the bad moments.
    • Apologize and move on.  Especially when it’s something small.  If you raised your voice at your loved one or didn’t handle a conversation well, apologize and accept responsibility.  Both parties will be better off. 
    • Don’t play the “What if…?” game.  You’re making lots of really hard decisions.  It’s easy to second guess yourself.  It’s easy to play the “What if…?” game.  (What if I would have taken mom to the doctor sooner or checked on her sooner?)  The “What if…?” game is toxic.  It does nothing but cause more guilt.  Recognize that you made the best decision you could with the information you had at that moment, and IT WAS ENOUGH.  That is the best anyone can do.
    • Remember that you cannot prevent the progression of the dementia.  This illness is not your fault. 
    • Remember that your loved one cannot make responsible decisions.  You will have to make decisions for him/her.  Do the best you can with the information you have.
    • Remember that you are not perfect.  You never were perfect, so don’t expect yourself to be perfect now.  Everyone messes up in big and small ways.
    • Take time for YOU.  When you feel guilty about taking time for yourself, remember: “You can’t pour from an empty cup.”  In order to care for your loved one, you need to be healthy.  Take time to care for your own physical, mental, and spiritual health.
    • Ask for help.  Is anyone as bad at this as we are?  Asking for help is hard!  It always helps me to think about it this way: When others ask me for help, I feel great joy in helping them, and I am honored that they trust me enough to ask.  Reminding myself that most people are happy to help gives me the courage to reach out to others.  Don’t be afraid to ask for exactly what you need.
    • Find a confidant.  Call your friend, sister, or cousin and talk things out.  Sometimes just saying what you feel can help.  A good confidant can give you a new perspective.  And if guilt is really pulling you down, seek help from a counselor, therapist, or minister.
    • Last, but not least: If you think you might be depressed, talk to your doctor or a mental health professional.  Don’t delay.  Overwhelming feelings of guilt can lead to depression.  Be aware, and don’t hesitate to tell your physician.
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