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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  • 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.

    March 29, 2019

    Wandering

    Wandering

    Unfortunately, the news is full of reports of individuals with dementia who are missing.

    They were left sitting on a bench at the grocery store or mall and told to wait, but they aren’t there anymore.

    They have driven to a doctor’s appointment and been found hundreds of miles away.

    Their caregiver took a shower and finished to find the front door open and the person with dementia nowhere to be found.

    They were traveling, and their caregiver went to the restroom for 2 minutes, to exit and find their loved one gone.

    Situations like these can have unhappy endings.  Extreme cold or heat makes a scary situation even scarier.  Also, there are those who will take advantage of individuals with memory loss – financially or physically. 

    Know this: if your loved one with dementia has ever wandered away, they will do it again.  It’s nearly impossible for a caregiver to stop a loved one with dementia from wandering.  But being aware that it will happen makes a difference.

    Be proactive:

    • Alert your neighbors that your loved one is having issues.
    • Get your loved one an identification bracelet or GPS tracker.  Don’t just buy it and put it in a drawer – actually use it!
    • Install door alarms.  You can usually find them for less than $25 at hardware stores.
    • Those with dementia are often looking for a particular person or home.  If your loved one is talking about these things, be extra aware, as he/she may strike out to find that person or childhood home.

    If it happens, act quickly:

    • Call the police immediately It is far easier to find someone when the search radius is small.
    • Keep in mind, those with dementia may not follow an obvious path.  Their vision is frequently down cast and their peripheral vision is narrow, so they may not travel a main road.  They may focus on a smaller path and go places you would not expect.

    Wandering isn’t something we like to talk about because it’s scary.  But it’s oh so important to be aware.  Being aware and proactive and acting quickly can make all the difference.

    February 22, 2019

    From the Nurse’s Desk: Infection

    It is important to be on the lookout for signs of infection in people with Alzheimer’s and dementia.  A person whose cognitive functioning is intact would tell us if he/she is in pain or doesn’t feel well.  But dementia makes this process more difficult.  Those with dementia can’t always express how they’re feeling.  The key to detecting infection is noticing symptoms and changes in behavior.

    There are several types of infections that can cause mental status changes in your loved one. Some of the most common infections include:

    • Urinary tract infections (UTI)
    • Upper respiratory infections
    • Ear infections
    • Sinus infections
    • Abscessed teeth

    How can you tell if your loved has an infection?

    A person with dementia who is experiencing an infection may demonstrate the following symptoms:

    • Fever – Look for warm forehead, dry lips/skin, or signs of shivering.
    • Increased Confusion –Although it may sound like a challenge to notice confusion in someone who has dementia, an infection can cause significant changes that may include increased disorientation to person, place, or time. Remember you know your loved one’s baseline, so if something seems off, it may be a sign. Mental status changes are your biggest clue.
    • Pain or Discomfort – Watch for non-verbal signs of pain such as grimacing, guarding against touch, crying, refusing to eat, and restlessness. 
    • Abnormal Urine – Check your loved one’s urine for odor, cloudiness, dark color, or blood.
    • Increased Lethargy – Look for out-of-the-ordinary fatigue, withdrawal, and desire to sleep.
    • Decreased Appetite – Some infections can cause nausea and vomiting, and others might just cause someone to feel a little “off” to the point where they just don’t want to eat.
    • Falling – Infections can affect balance and cause muscle weakness.  Repeated falls may be a sign.
    • Paranoia or Hallucinations – If your loved one does not normally experience hallucinations, seeing or hearing things that aren’t there could be an indicator.  Some people become very suspicious of others.
    • Behavior Changes – People with Alzheimer’s and other kinds of dementia may experience some challenging behaviors, but an infection can cause a significant increase in the frequency and intensity of those behaviors.  Your loved one might be somewhat resistant to getting dressed in the morning, but an infection could trigger an extreme reaction of screaming, swearing, hitting and throwing things.

    What do you do if you notice these changes in your loved one?

    Inform your doctor right away!

    It is important to have a great primary care physician involved in your loved one’s care.  Be sure to explain everything you’re noticing that’s different in your loved one’s daily operations.  Remember you are the eyes, ears, and voice for your loved one, so you must advocate for him/her. 

    If medication is prescribed, finish all the antibiotic or treatment.  If you do not see any changes within a few days, call the doctor back and discuss further treatment options.

    Television and Dementia

    Let’s just admit it: Most of us watch TV more than we should.  It’s an easy way to pass the time.  Especially when it’s cold and rainy outside.  Especially when you’re not as active as you used to be.  And especially when you have dementia.  TV seems like a good time filler. 

    Television isn’t a bad thing.  It’s okay to watch good content in moderation.

    Please Note: There are many other activities that are better for your loved one’s physical, emotional, and cognitive health than TV.  Walking, playing a game, reading, visiting with friends, etc.  (You can find a previous blog post about activities here and a list of in-home activities here.)

    Dementia affects people’s perception.  Your loved one with memory loss may have a very different experience watching TV than you because of this altered perception.  They may think that the things they’re seeing on TV are happening in real life.  Some examples:

    Mom watches a news story about a burglary.  Now, she thinks she has been burglarized.

    Your wife watches a crime show about a serial killer.  Now, she is convinced that the serial killer is after her.

    Dad watches the news every evening.  Now, he thinks the national news anchor is his best friend who comes over every day to talk about the news.

    Grandma watches a sitcom.  Now, she believes that all the people from the sitcom are at her house and that she needs to find a place for them to sleep.

    Moral of the story: It’s important to monitor what your loved one with dementia is watching!  Oftentimes as dementia progresses, it becomes increasingly difficult to follow a program.  The person may nod off, lose interest, or ask repeated questions to try and keep up with the story line. 

    When you do watch TV, here’s what we suggest:

    • Avoid shows that upset your loved one.  If it causes any stress or anxiety, don’t watch it.
    • Block home shopping channels. Your loved one has impaired decision making skills.  Home shopping commercials are designed to be very convincing.  You don’t want to end up with 7 sets of luggage from QVC.
    • Avoid shows with lots of family drama. Have you ever noticed how a show can alter your mood?  Your loved one is even more susceptible to this.  Don’t watch shows that amp up the drama.  Most families don’t need any more drama.
    • Choose programming from your loved one’s generation.  Examples: I Love Lucy, Lawrence Welk, Sanford and Sons, etc.  This might be a great opportunity to reminisce and talk about times past.
    • Watch a game show.  There’s no story line to follow, so they’re easier to watch.
    • Watch through a streaming service (Netflix, Hulu, etc.), so you can curate the content to your loved one’s specific interests.  Does Mom like baking?  Watch the Great British Baking Show.  Does Dad like war documentaries?  They’ve got those!  Does your husband love dogs?  Search for a movie or documentary that features a dog.
    • Watch a musical.  Music is always good for the soul.  Bonus: Put on the closed caption to make it a sing-along. 

    January 30, 2019

    From the Nurse’s Desk: Dehydration

    In addition to our monthly blog posts, we’re about to start a new monthly feature called “A Tip from the Nurse’s Desk.” This series will share information on preventative care and tips for healthier living from our nurse, Kiesha.

    If you want to receive this information, be sure you’re subscribed to our monthly caregiver email, Caregiver Connection. At the first of each month, we’ll send you an email with a list of caregiver support groups, a Care & Share blog post or video, and A Tip from the Nurse’s Desk.

    This first tip is so important we decided it needs to be its own blog post.

    From the Nurse’s Desk

    Dehydration is something that gets talked about a lot in the summer months, but it’s a problem all year round. In the winter, we may not feel as thirsty, so we don’t drink enough. Also, central heat creates a dry environment, meaning we need more fluids to make up for the dryness.

    Dehydration is a term used to describe an excessive loss of water that disrupts the body’s normal functions. Dehydration takes place when more fluids are lost than taken in. It has become a common problem among seniors. It is important to watch your loved one for signs of dehydration.

    Some causes of dehydration:

    • Medications (example: Diuretics such as Lasix)
    • Decreased thirst
    • Forgetting to drink fluids
    • Decreased kidney function (As we age, our kidney function decreases, and they can’t hold as much fluid.)
    • Illness

    Some symptoms of dehydration:

    • Increase in confusion
    • Delirium over and above typical dementia symptoms
    • Dark, strong smelling urine
    • Dry, papery skin
    • Dry, cracked lips
    • Urinary tract infection (which can also cause delirium)
    • Headache
    • Sunken eyes
    • Constipation
    • Lower than normal blood pressure
    • Fast/weak/irregular pulse
    • Loss of consciousness in severe cases

    Dehydration is a serious (and unfortunately common) problem and can cause serious health issues. So how can we prevent our loved ones from getting dehydrated?

    1. Pay attention to fluid consumption! Pay attention to how much water your loved one is drinking. Keep a log if you need to.

    2. Make drinking easier.  Some ideas: Easy-to-open tops, non-spill cups or water bottles, one-way straws.

    3. Set reminders with technology. Set up Reminders or alarms on your phone. Use something like an Ulla. Ulla is a water sensor you can strap around your drinking glass or water bottle. It glows to remind you to drink at regular intervals.

    4. Get creative. You don’t have to just provide plain tap water, and even if you do, you can make it more interesting by adding slices of citrus or cucumber. Trade water for a low-sugar sports drink. Popscicles are always a fun way to stay hydrated.

    5. Offer food with high water content. Broth-heavy soups, apples, oranges, berries, grapes, watermelon, cucumber, and cottage cheese all have high water content.

    6. Keep an eye on caffeine intake. Sodas, coffee, and other things containing caffeine are fine in moderation, but caffeine is a diuretic and may contribute to dehydration. Don’t count coffee or soda in your daily fluid intake.

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