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.

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!).

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.

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.

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!

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.

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.

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.

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.

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.

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  • 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.

    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.

    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.