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.

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!