Understanding Dementia, the Ultimate Thief

Understanding dementia and all its complexities cannot be done in one article, or neither by reading an entire book.  Hence is why there are countless people who have dedicated their careers to helping us better understand this debilitating condition.  There are many books out there, and one of the best, and most easy to read books I have found is called “Experiencing Dementia”  by H. Norman Wright.  It is a short, easy to read book and very reasonably priced on Amazon (less than $5.00)

The author has been diagnosed with early stages of dementia after years of being a caregiver for a handicapped son and eventually, his own wife.  After doing his own research, both academically and experientially, he skillfully describes the condition in an easy to understand manner.

Dementia is not a disease in itself; but rather a group of symptoms that result from other sources, or diseases.  It is basically an ‘umbrella term’ used to describe the many symptoms that interfere with normal life functioning.  There are several types of dementia, with Alzheimer’s accounting for somewhere between 60-80% of all cases (over 5 million cases).  The other most common types of dementia are:

  • Vascular Dementia
    • small silent strokes
  • Dementia with Lewy Bodies
    • Abnormal clumps of protein form in the brain causing never cells to degenerate
  • Frontotemporal Dementia
    • The area of the brain responsible for behavior is gradually eroded
  • Normal Pressure Hydrocephalus
    • Used to be called ‘Water on the Brain’ because of buildup of fluid on the brain
  • Mild Cognitive Impairment (MCI)
    • Change of IQ functioning

What our loved ones with dementia are facing:

  • Memories and abilities that they have worked their entire life to obtain, are being slowly stolen from them
  • Great emotional pain: for both Receivers of Care and Givers of Care
  • Loss of self: one of the greatest losses a person can face
  • Emotional issues and personality changes as a result of the part of the brain responsible for emotions and memory is affected (the amygdala)
  • Sleeplessness due to the brain stem being affected
  • Loss of memory is extremely frightening; our memories give us life!

Dementia is a terrible thief.  It robs people of their memories, abilities, personalities, coping abilities, sleep, and eventually physical functions.  How couldn’t this change a person?  It is so out of their control, we must remember that.  It helps me to put myself in the place of a dementia patient, and try to imagine how I would feel.  Yes, this is a scary exercise.  But if it’s scary just thinking about it, imagine how it is to live with it!  Bone chilling to consider.

One fact is certain.  Regular, consistent, positive visits from family and friends is the biggest source of relief for our loved ones, even if they don’t remember it later.  Imagine how frightened they must feel.  Spreading out visits will help with that.   Using the Community module in the Genus™ app, you can look back over past data and see how you and your care circle are doing with providing consistent contact with your loved one.  You can correlate that to other date  you might be tracking, such as physical mobility and/or mood.  Then using the calendar function, you can easily plan visits so that they don’t overlap too much and are spread out to best benefit the patient.

Using the Moments module, you can take pictures of special people, places and events that will help stimulate positive conversation during your visits.  Using your smart phone during a visit, you can share the photos with your loved one, or just listen to some music.  We have also taken pictures of bible verses images and other inspirational sayings that we use when visiting my mom.  She is always grateful for the wisdom shared and seeing it in writing is different than hearing it from a family member.  More authoritative and less “bossy”.

Yes, dementia is a thief.  But armed with information and tools, we can minimize the damage and provide the best love and support we can for our loved ones.

I Want To Go Home!

If you are caring for emotionally distraught loved one who uses the “I want to go home!”  phrase over and over; then you have probably felt some frustration with how to respond to that.   If your Receiver of Care is in a facility, or another person’s home; then it is understandable why they are saying that phrase repeatedly.  However, what if your Receiver of Care is already home?  How should you respond?  What will calm your loved one down?  What are they really saying?

Maybe the following story, about a young Giver of Care, Anna, will provide some light on the subject:

Anna was a sweet 13 year old girl, who was emotionally distraught over some sad family situations.   Her grandfather was suffering from Alzheimer’s and her parents were in the middle of a very sad divorce.  It was a very lonely and troubling time for Anna.   One night, things seemed more than she could bear.  ‘”Dad…I want to go home… I want to go home.. I want to go home”, she kept repeating, through her broken sobs.

Her Dad, trying to comfort his daughter, asked Anna to explain what she meant.  His heart broke for his daughter, as she answered through her tears, “Back to when everything was okay, when we were traveling, singing, camping, and everything was okay!”

What a profound moment for Anna’s dad.  As he was sitting in his home with his upset daughter, he realized HOME is not necessarily a physical place.  HOME is a safe place.  A time when things were good.  Bingo!

The following morning, Anna’s dad was visiting his father, a patient at an Alzheimer’s memory unit .   The elderly man began his visit as he often did, repetitively saying,  “I want to go home”.  Ordinarily that would lead to a ‘logical, and unproductive attempt’ to reason that this is his new home.  That morning however, armed with a deeper understanding of home, a heartfelt reply came forward.  “Yes, let’s go home Dad.”

They held hands as they walked and talked  about fond memories: when his father taught him fishing, when they built a tree house together and even how his father decided to ask his mom for her hand in marriage.  It wasn’t long before the elderly gentleman felt peace and he stopped asking to go home.  When they returned to his apartment within the memory unit he asked, “Is this where I live?  It sure seems nice!”

 Other siblings began using this same approach and over time, this helped him transition to his new and final place of residence at the memory care unit.  Equally valuable, this approach of ‘changing the subject’ led to more meaningful and healing visits for all involved!

 Research confirms, when we are upset, talking about a time when life was more pleasant is therapeutic and triggers a chemical reaction that helps brings a sense of clam.

The take away?  As a caregiver sometimes it’s simply best to accept that “being right” isn’t the answer, i.e. it’s not the time to say, “Dad, enough already .. you are home”.  It may be best to take our loved ones for a walk down memory lane!

The wonderful young woman who inspired this story is the daughter of the developer of Genus.  Anna couldn’t have been kinder to her grandfather when he was suffering with Alzheimer’s and shared many wonderful, and yes, repetitive conversations about his past.

Communicating With Our Receivers of Care

 

If you are involved in caring for an older adult, maybe suffering from Dementia or Alzheimer’s,  or possibly suffering from a physical disability; you already know how difficult communicating with them can sometimes be.   It is understandable that our Receivers of Care can perceive us as ‘bossy’.  It is also understandable that we won’t like that perception one bit!

We didn’t choose to have to tell our loved ones what to do and how to do it.  They certainly did not choose to need care.   It is easy to get frustrated in the whole communication process, ending up in an unnecessary argument.  At the very best, we may meet with passive resistance from our loved ones and that doesn’t help anyone.  At the very worst, an all out war!

This article from Psychology Today provides some excellent tips for communicating with the loved ones we care for.  If you or your loved one are particularly struggling with communication, there is also a book that goes in to greater detail offered in the article.

Finding and Paying For Long Term Care

 

You have found the home-care provider or facility you want to help with the care of your aging loved one, but how does one pay for this?  If your loved one doesn’t have long-term health insurance, things can get expensive very quickly.   This government website answers the many confusing questions involved with the financial end of providing care.

Included in this link is a search engine for finding facility care, home care, and just about anything else you can think of provided in this resource.  The fact that it is not a private industry that receives pay for recommendations is a good way to double check on what’s available to your family to care for your loved one.

 

Am I At Risk for This Disease?

If your life is wrapped up in the challenges of caring for a loved one with Alzheimer’s, you can’t help but think, “Is this going to be me one day?   Am I at risk for this disease?”   It can be pretty darn scary.

Diet

What we eat is critical to maintain healthy brains, and of course to keep us feeling strong enough to accomplish all that we need to do.  Amy Paturel, of AARP discusses the importance of the diet we follow for our brain health.    You can find her article on the AARP website.  She lists simple foods that need to be part of our daily diet to optimize the science of nutrition in combating Alzheimer’s.   Basically, she is encouraging the Mediterranean Diet, known for brain enriching foods.

 Regular Exercise

Of course, diet is just part of what we need to do to keep our brains healthy.  Regular exercise is equally important, which can be difficult when you are busy living your demanding life while caring for an aging loved one.   Remember to allow time for yourself to get the exercise you need no matter how impossible that seems to be.  Is there a way you can kill two birds with one stone and exercise while spending time with your loved one?  My dad loved his daily walks and to make it more physically challenging for myself, I sometimes would jog in place as we walked through the park.  He got his much needed family time and I was able to get some cardio as we spent time together as well!   I have a friend who gently jogged as she wheeled her mom through the neighborhood in her wheelchair.  Heck, I’ve even been known to sit and do my stretches as we chatted in the den.   We do what we gotta do, right?

Additional Information

For more tips on Alzheimer’s prevention, see Alzheimer’s website with all kinds of up to date research:  alz.org

Remember, taking care of the You the Caregiver is just as important as taking care of your loved ones!

The Magic of Involving Our Children in Eldercare

This video, created by Sunny Rae Keller, a young child with a grandmother suffering from Alzheimer’s, says what I could never attempt to write here.   The innocent love of children can do wonders to show us what is really important in this battle we fight.  Once you have finished drying your eyes, read on to find out ways to involve your children in eldercare.  Great blessings await you all if you embrace this powerful relationship.

Are They Being Ripped Off?

It’s easy to get caught up in the mindset that our children are really the ones who got “ripped off” when our parents are suffering from dementia or another aging ailment.  I know I have heard these exact words from friends who are in this situation, and I could understand that feeling completely.

  • They don’t have a grandparent that is “all there”.
  • They never got to meet the “real grandma or grandpa”.
  • Their free time is tied up with taking care of someone rather than just having fun …

But most kids don’t feel that way.  We are robbing our children of a life-changing and character forming opportunity with this understandable, but misleading attitude.  The song above is evidence of how our children still love fiercely in the face of the ugly beast of aging illnesses.

I love watching how my siblings involve their children in caring for our parents.   My son was grown up and out of state by the time my dad’s Alzheier’s had reached the intervention point.  But my siblings with younger children were torn daily between daily homework and soccer games and attending to my parents’ needs.  Their stress was definitely greater than mine in this arena and it was such a blessing to watch the many creative ways they involved their kids.

How Can the Kids Help?

  • Shopping, cooking and general chores can be more fun when little kids are empowered to help and really feel as if they are contributing to grandma/grandpa’s lives
  • Involving the kids in creating photo montages, either on a poster board or via technology is real fun for the kids and the grandparents
  • Taking the parents to your daily sporting, dance and scouting events is good for everyone and maximizes the use of everyone’s time
  • Thinking of field trips to go to that all may enjoy: the zoo, museums, parks…. Something for everyone.   Check with your local library for discounts to area attractions.  There are loads!
  • Be sure to include music in your kids’ interactions with their grandparents. They can share with each other their favorite songs and you can throw in your classic rock n roll favorites too!
  • Lots and lots of storytelling. Asking the grandparents to tell about when they were growing up.  Kids LOVE to hear these stories

For 101 activities for kids to do with an Alzheimer’s patient from the Alzheimer’s Association, click here.   This list will spark other ideas that may be more specifically suited to you and your family.  Remember, these are precious moments between your children and their grandparents that you are creating.  Enjoy them!

What Are Young Givers of Care

Our team at genusConnect™ recognizes the value of involving our children in the care of our parents.   It is why we have a special section dedicated to Young Givers of Care.  It is our unique belief that much is to be gained by everyone with actively involving our kids in the care of the aging members of their families.

In my family, the teenage members who have grown up with grandparents suffering from dementia and Alzheimer’s, are now part of the care community using the Genus App.  Those that can drive are involved by doing some of the shopping and easier errands.  They can log their visits into the App, providing important feedback for everyone.  They really enjoy taking pictures and adding them to the “Moments” platform.  Some even use the App to call their grandmother.   Get them involved and watch them go!

Who Benefits When the Children Are Involved Caring for Aging Loved Ones?

  • The Children: building of self-esteem, developing empathy, empowerment
  • Our Aging Loved Ones: love, joy, attention, and feeling of usefulness, brain engagement, physical exercise,
  • Us, the Givers of Care:  a little break for us to do other tasks while our parents are happily busy with our kids, satisfaction of knowing we are doing what’s right for all involved; building positive character traits in our children that will last a lifetime

What do we really have to lose by making this challenge in our life a Family Affair?  What is there to be gained?   I think you can see the answers.

Common Medication Errors

SafetyOne of the most important aspects of physical safety for chronic patients is dealing with the myriad of medications involved in their care.  In fact, medication errors may be one of the first warning signs you saw that led you to realizing your loved one needed additional help.

A great resource for reducing medication errors is this article provided by the Mayo Clinic.  You will find many medical safety ideas that you may not have already considered.

Another article that is helpful in avoiding medication errors is from Centers for Disease Control and Prevention.  Here you will find some specific warnings about certain medications that need close monitoring as well as excellent tips for managing medications.

Your aging loved one may not be ready to give up control of medication management.  This may take some time to convince him/her.  For us, it took quite a bit of conversation and an unfortunate hospital visit for our mother to give up that control and allow us to fill her pill box weekly.  She had become quite ill and had to spend weeks recovering from the effects of medication errors she had unwittingly committed.  We were lucky that the effects of medication misuse hadn’t become permanent, yet.

Remember to use the genus™ App to keep your loved ones’ medications list up to date.  It truly is worth the time and effort to input the medication data into the app.  This part of the app in the Medical platform will provide you with medical safety information when you visit the doctor’s office, consult with a pharmacist, or make a plan for safe medication dispersal.   All this at the tip of your fingertips, wherever you are!   Together, we can care better.

Millennials As Caregivers

We typically think of family caregivers as women in the Baby Boomer generation, age late 40s to late 50s. But new information from AARP and the National Alliance for Caregiving reveals that a full 10 percent of family caregivers are Millennials. That’s 10 million people!

The typical profile of this person is someone who is 27 years old, works part time, and has household income below the national medium.

Why this increase?

One reason is some Baby Boomers need a little help with older loved ones.  And it seems Millennials are actually happy to help.  Of course there are some circumstances where Millennials have had to step up for the care of their own parents.  After all, diseases like early onset Alzheimer’s are being diagnosed more frequently.  But for the most part, Millennials are helping Boomers take care of what is left of the Greatest Generation and perhaps the first wave of Boomers.

Millennials who are supposed to be at a stage of life where they are absorbed in their own careers and families.  Often they are balancing a career, getting advanced degrees, caregiving and raising children, making them some of the youngest to handle sandwich generation stress.   This makes caregiver Millennials a unique group.  Of those 10 million Millennial caregivers, there is an equal split between men and women.  That’s a little different than the typical caregiver demographic, which skews toward women.  But Millennials attitudes toward masculinity have changed and men are more likely to see themselves as nurturers, too.  For additional data on millennial caregivers, see this article.

Technology Millennials Use

The genus™ App is truly something Millennials gratefully grasp onto.  They grew up with technology and embrace the opportunity to use it to provide the best care possible for their loved ones.   With so many Millennials having to work far from where their parents live, having a tool like the genus™ App allows them to fulfill their career goals while attending to family responsibilities.   They are thrilled to have a platform that coordinates outside help, visits, medical information, and valuable resources, all ready to be accessed at the touch of a button.

Emotional Safety for Your Person of Care

When taking care of an aging or chronically ill loved one, we need to be concerned wGivers-of-careith several types of safety:  physical, emotional, financial, and spiritual.  We often do a stellar job of taking care of their physical needs, but what about their emotional needs?

An elderly person needs to feel safe, remain close to other people and believe that his life continues to be meaningful. Meeting his/her emotional needs can help avoid depression. Signs that your aging loved one needs more support may include difficulty in sleeping, a poor appetite or an inability to concentrate.  Emotional care for a senior should include steps designed to deal with vulnerability, loneliness, boredom and isolation.

Using Technology to Help

Here is where the genus™ App can help design these next steps.  When the community of care folks (the people you have in your care community on the App) can easily access visitor information and a common schedule; then all can work together seamlessly to provide visits and activities that allow for regular contact with loved ones.   Here you can easily log visits and phone calls.  It is important for all involved to realize that this is not about who visited Mom the most, but rather how we can all work together, making the most of our busy schedules, to provide Mom with the best emotional support there is:  time with loved ones.  Think about how important Mom will feel when she sees her community of loved ones working to give her the best, together.  I know that my mom has frequently commented to her friends how her children are using “the internet” to schedule visits and activities.  She feels honored that such efforts are being made to provide her with best care possible.

Along with making sure our loved ones get regular social contacts, it’s important to note how they are doing physically as well.  In the Health platform of the Genus App, you can track how the patient feels physically each day as well as tracking their mood and mobility factor.  You can then run medical reports periodically to show the doctor.  It could help the doc adjust medications, change medications, or even remove unnecessary meds.  With various folks inputting the data, the App allows for tracking of data in a meaningful way to share with family members and medical professionals as necessary.  You then can have a complete picture of your loved ones’ physical and emotional health, as they are both tied so closely together.

Some tips to remember:

  • Talk with the older person in your family to identify needs. Listen to individual concerns. Don’t assume all elderly are lonely. Encourage the person to express their feelings and be a good listener–ask questions and don’t be judgmental.
  • Be aware of fears. Due to medical conditions, some people lose independence as they grow older. Some elderly people may fear not being able to take care of themselves.
  • Many older people develop depression. Factors such as illness, death of family members and medications all contribute to depression. Don’t be afraid to ask family member if he or she is feeling depressed. Also look for signs, such as withdrawing from family and friends, mood changes, fatigue and weight loss.
  • Understand the need for purpose in an elderly person’s life. With their children grown and retired from their job, an elderly person may feel they are not needed. Many volunteer agencies are geared especially for senior citizens. For example, Senior Corps utilizes senior volunteers in a variety of jobs. In our community, we have an agency called SOC (Society for Older Citizens) that provides all kinds of services for the elderly.
  • Recognize the need for professional help. Some emotional problems will need to be evaluated by a doctor or a qualified mental health professional. For example, if signs of depression persist for more than two weeks and interfere will daily activities, professional help may be needed.
  • Be aware some emotional problems in the elderly may be caused by side effects from medication and certain medical conditions. A physical may help determine if medical problems are contributing to emotional issues.