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.

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.

Hiring a Caregiver You Can Trust

It can be so overwhelming deciding what kind of outside help to hire for your aging loved one.  Who should you hire?  How do you find them?  Are they qualified?  Can they be trusted to care for your parent?  What questions should you ask?  What is the cost?  How do I find the best care possible for my parent?

Once you start your research, it is easy to get overwhelmed with all the information out there.  Agencies that earn their money by recommending specific home-care agencies are available BUT they only refer those agencies that pay them a fee.  There are so many of these “placement agencies” ….. Home Instead, A Place for Mom, AgingCare, care.com…. the list goes on.   Talk to your friends to see what they have used and get recommendations.  Use social media to solicit recommendations.  The agencies they recommend can vary from location to location.   Agencies are run by local owners, so getting some advice from local friends and family about local agencies they have had success with is invaluable.

At-home caregivers generally fall into three categories:
  • Certified Nursing Assistants (CNAs)
    • have some medical training and must pass an exam to get a license. They usually work under the supervision of registered nurses. In home care nurses can check vital signs, care for wounds, and help with everyday activities such as bathing and eating

(you’ll often hear these referred to as “activities of daily living,” or ADLs)

  • Home Health Aides
    • generally assist with ADLs. And personal care attendants (PCAs)
  • Personal Care Attendants. (PCAs)
    • also sometimes called personal companions, assist with household chores such as cleaning, cooking and shopping

The job descriptions of these caregivers can overlap considerably, and they’re often referred to interchangeably.  You will need to decide whether to go with an established agency or hire a private home-care worker.  Both have advantages and disadvantages.   Of course with an agency you will usually find licensed care workers, but you will also pay more money than private care, in general.   However, with a private homecare worker, you often get more personalized attention.

Valuable Links for Finding the Best Outside Help

The National Association of Area Agencies on Aging (n4a) is the best place to start when looking for home-care agencies.  They are a government service that is not affiliated with one agency over another.  This link will take you to eldercare.gov which is a affiliate of n4a in which they recommend agencies that provide outside help.  https://www.n4a.org/hcbs

When considering an agency, you may want to check out this article and the corresponding links from the National Association for Home Care and Hospice.   They list some great questions to ask when interviewing home-care agencies as well as a database of agencies.

Whether hiring a private home-care provider OR an agency, here is a list of questions to consider as well.  This article provided by the Mayo Clinic breaks down the questions depending on whether you are going with private care or agency care.  This is a good article to read in helping you to decide which course of care to take.

Finding the best home care for your loved one can be a daunting task, but if you are armed with the proper information and questions, it will make the job a bit easier.  Remember to involve your home care aides in the use of the genusConnect™ App.  Their use will provide you with the best up to date information on the care of the patient as well as provide you with tools to make your job easier.   The home-care workers will love the feedback you can leave them within the app.  genusConnect™ provides you with a valuable communication tool to help you provide the best care, together.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Helpful Checklists for Givers of Care

Home Safety

The most important checklists you will need right away when caring for an aging loved one are listed below.  To print these checklists for use at home, you can access this article from your home computer by going the website.  https://www.giversofcare.org

This website is where all the articles from the Genus App are housed, so if reading from a computer is easier, you can have access from this site.

  • This checklist will help you with the many things to think about when looking for a long term facility for providing care for a loved one.
  • This checklist will help you choose an agency for In-Home-Care.
  • A medication checklist that you may want to use if you are not documenting meds in the Genus™ App.
  • This checklist will help you gather all the important financial and legal documents and information you need to have on hand when caring for a loved one.
  • A home-safety checklist is always a good idea to make sure your loved one is safe.
  • The VA provides some more useful checklists when caring for a Veteran on this site.
Disclaimer:  These links are being provided as a convenience and for informational purposes only; they do not constitute an endorsement or an approval by the genusConnect™ of any of the products, services or opinions of the corporation or organization or individual. genusConnect™ bears no responsibility for the accuracy, legality or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content.

Teaching Our Loved Ones to Ask for Help

rings5Most people want to be independent and do not want to be a burden on the family, hesitating to ask us for the help they need. When dealing with a family member who still has fairly strong cognitive abilities, we can only know where to provide help if we can teach our loved one to ask for help.  Of course we will see some obvious areas where help is needed, but in order to provide the best possible care, we need him/her to be open with us.

Teaching our Parents

When dealing with my father’s Alzheimer’s and my mother’s declining physical health, we had to convince Mom that it was better for us, if she could try to communicate her exact needs to us.   Once she realized that she was “helping” us by asking for what she needed,  then she could do it more easily.   We just needed to turn the tables for her realize that the best way to help us help her, was to be as specific as she could about what she needed.

When Mom saw some of the systems of organization (scheduling, medical, legal and communication) we had in place using the Genus™ App, she could see how knowing what help was needed ahead of time, could help us plan more efficiently and save us time in the end.   Thus, allowing a better quality of life for us all, not just Mom and Dad.  We had to convince Mom that by allowing her children to help with Dad’s Alzheimer’s, she was giving us a chance to give back to them.   She was enabling us to feel empowered about this frustrating and heartbreaking situation.  Again, it took some time for this change to take place, but with loving reminders from her children, she was able to more clearly communicate to us what exactly she needed help with.  This in turn, saved us valuable time as we tried to efficiently manage our personal lives along with caring for our parents.

Four Areas of Safety

But what about when our loved ones don’t even know what they need help with?   Whether it is because of a cognitive decline, or just the fact that our person of care is completely overwhelmed, he/she cannot communicate where exactly help is needed.   It is in this instance we need to remember that there are four areas of their safety to consider.

  • Physical
  • Emotional
  • Medical
  • Financial

It might seem overwhelming at first, but if we break it down into these 4 categories and tackle them one at a time, it is definitely doable.   In the Genus™ App, there are numerous articles, videos, and resources centered around these 4 areas of care:

Physical:  Think basic needs.  Food, shelter, clothing, water.  Also think about their mobility and pain factor, although this crosses over with medical.

Emotional:  Is our loved one getting the social interaction daily that is needed?  How about their mood?  Is your POC staying positive?  Do they need more social interaction?  You can track this using the Genus App.

Medical:  Do you have all the important documents and medical information filed in one place?  Are you tracking any specific vitals that need to be communicated to the doctor?  Do you have Medical POA?  If not, who does?

Legal and Financial:  Who is on the bank accounts with your loved one?  Who is helping him/her keep track of spending and finances?   What about plans for the future?

All of these areas are equally important, but some may take priority over others, depending on the situation and depending on timing.  One thing you can be sure of, things change constantly when caring for a loved one.  Keeping track of the changes is what can make the difference between a more positive experience and a very frustrating experience.  The best piece of advice I have here is:  Keep documenting, everything.  You won’t be sorry.  I found that by using the Genus™ App, I could more easily track the mounds of vital information.  Keeping me from feeling completely overwhelmed. Better yet, feeling as if we really have this situation under control.  That truly is the most comforting feeling of all when facing the challenge of caring for a loved one.  Knowing that this person we love so dearly is getting the best possible care we can provide.