You Need To Be Present, Not Perfect: 3 Tips for Caregivers of Loved Ones with Dementia

By Jennifer Olson Crane, M.S.

In my work and in my personal life I have had the privilege to speak with people who are confronted by the reality of caregiving for a family member who is dealing with the debilitating symptoms of dementia.  One concern that caregivers consistently communicate to me is that they are “screwing it all up!” They tell me they don’t feel up to the task.  They express worry that they can’t be good enough or perfect when interacting with their loved ones.  Some of these caregivers might even be at the point of exhaustion or breakdown.

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There are several tips that I urge these individuals to bear in mind each day.

  1. You are only human; be sure to take care of yourself.

None of us is super human.  It is ok to be frustrated, overwhelmed, tired or even to lose your composure with your loved one.  Caregiving is a 24/7 job and it is affected by so many outside things that are not controllable that it is inevitable that frustration and fatigue will take over sometimes.

It is ok to need a break, to periodically take time for yourself.  In fact, it is not just ok, it is a necessary part of being able to be a caregiver for the long-haul.  Take advantage of family members, friends, church members, or other people’s offer to do something to help.  Ask them to come sit with your loved one, so you can take a nap, go to lunch with a friend or your spouse, or do a favorite activity.

If friends/family are not around, please consider looking into day programs or the local senior center for programs that provide respite.  One program that I am aware of charges just $10 an hour and includes lunch so that a caregiver can schedule time off.  Taking care of oneself refreshes and enables a caregiver to be much more able to take care of their loved one with dementia for the long haul.

  1. When you lose your cool, apologize and move on.

Don’t beat yourself up when you lose it with your loved one.  Again, you are human.  Apologize and move on.  Sometimes the loved one is hurt by your outburst.  However, a conversation that includes an apology and an “I love you” can go a long way.  Especially before dementia progresses into late stages, people are aware that their behavior and/or speech is confused.  They don’t know what to do about it and it often helps defuse a frustrating situation to have a caregiver admit that they are confused or don’t know what to do or how to handle it either.  The two can learn together.

  1. Understand it’s a new normal.

When dealing with dementia, caregivers and family are always dealing with a “new normal” in the life of a loved one affected by this disease process.  The disease process of dementia causes deterioration in the brain, is usually progressive in nature, and promotes periodic personality and functional changes in the affected loved one.  These changes are hard for caregivers and family members to watch and understand.  It is often the inclination of caregivers and family members to refer to the way the affected person “used to be” and to desire to get their loved one back to that normal.  One of the hardest realities to face is that the former version of the affected person does not exist anymore.  Who they are now and what they can do now is their new normal.  It is important for caregivers and family members to understand this new normal and how it dictates their required care.  As the dementia progresses, the affected loved one may experience additional new normals, causing the caregiver to need adapt the approach and strategy of care.

Caregiving is not easy!  No two cases of dementia are alike. The dementia process often requires a changing approach by the caregiver over time as the disease progresses.  It is challenging enough for someone experienced with dementia to navigate the path to dementia care without any missteps.  I advise caregivers not to be too hard on themselves, to get educated, and to seek regular guidance from their loved one’s healthcare practitioners.

 

About the Author

Jennifer Olson Crane is a Gerontologist and a member of Savantive LLC, a professional consulting business she started with her husband.  She has a passion to help older adults, especially individuals diagnosed with dementia, by addressing their struggles in a way that leads to positive outcomes and improved quality of life.

Jennifer educates families and caregivers about the dementia process, connecting them to appropriate resources for their affected loved ones, and providing ongoing support as the situation changes.  She writes and speaks on the topics of dementia and caregiving.

Jennifer holds a Bachelor of Science degree in Psychology (summa cum laude) from Liberty University and a Master of Science (summa cum laude) in Gerontological Services from Saint Joseph’s University.

 

(Note: The opinions and information expressed herein are that of the author and are not reflective of any current or former employer or client.)

© 2018 Savantive, LLC

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Registered for my Final Two Classes Today……

I remember sitting down at my computer blogging about my decision to go back to school.  I had been out of school for around 20 year., and a lot has happened in my life since I had last been a student.  In December 2015 I graduated summa cum laude with my B. S. in Psychology.  I began grad school right away, and I also blogged about my decision to pursue Gerontology.

Today I am sitting here blogging about registering for my final two graduate classes.  By December of this year, I will hold a master’s degree in Gerontological Services from Saint Joseph’s University in Philadelphia.

This journey has taken me through five years, two moves, both of my children graduating high school, health concerns and surgeries, the death of a grandparent, and multiple other life changes.  It was very difficult at times, and I even spent some time in tears and ready to give up.  I kept going, though, and here I am!

I am working to find a job and begin to build upon my education and truly make a difference to the people who I work with.  I am looking at research ideas, and beginning the process of developing them.  I am still a wife and a mom, and these roles are the ones I still identify with most closely because these roles mean the world to me.  I am also someone who is passionate about my chosen field and the individuals that I work with.  In some ways. I am the same person I have always been.  In others, I have changed and grown.

My husband and my kids have given me their love and support, their proofreading skills and their shoulder, their understanding and their cheering section to get me through.  I could not have gotten here without them!

So here I am getting ready to tackle my final semester of school.  I am excited to see where I land as I apply for and interview for positions in my field.  I am excited to see what the next chapter of my life holds as I am stepping out as a confident, educated and capable woman.

Why Gerontology

At 42 years of age I have finally finished my bachelor’s degree.  When I returned to school three years ago, twenty years had passed since I finished my freshman year.  In that time, I have come to a better understanding of who I am and what I want to do when I “grow up.”  My major in psychology more fully represents my interests and goals than my previous major, while my 3.9 g.p.a. reflects my dedication and intense focus on the subject of psychology. 

It took me a while to narrow down my interests because there is so much to learn about human development and behavior.  I was fascinated by what I was learning about each successive stage of development.  However, it wasn’t until recently that my interests turned to the senior adult population.  A core requirement of my undergraduate degree program is a 125-hour internship, to be completed within one full semester.  While completing my internship at a local senior center, I gained the experience and knowledge to fully grasp my interest and passion for the senior population. 

My internship has afforded me the opportunity to work with a group of seniors who struggle with the beginning stages of dementia and other conditions that affect cognitive function.  This program, known as the Assisted Senior Program (ASP), exists to offer assistance, socialization, and a level of independence for seniors who need support but who do not need daycare or other full-time aid.  ASP also offers respite for the seniors’ caregivers.  Interestingly, working in this internship has lit a spark in me! Consequently, I now have a strong desire to develop ASP programs in multiple locales to support the senior population.

I am excited about the Master of Science in Gerontology offered by St. Joseph’s University, because I feel that this program will afford me the best education and skill enhancement to make my goal of assisting this specific group of seniors a reality.  Not only do ASP clients have unique needs because of their cognitive struggles, but they require unique support as they are not “serious enough” for typical interventions and services that are in place for seniors.  I want to provide the opportunity for these seniors to live a full life that affords them the respect and dignity that is rightfully theirs.  I want to understand what their needs and concerns are and how I can help to meet those needs.

I believe that my passion and my caring and compassionate heart will allow me to offer the care and support that is so desperately needed by seniors who are experiencing the changes that come with cognitive dysfunction.  I want to be knowledgeable about the unique needs of this population, so that I can make a practical difference in their lives as they age.  I want to be able to offer seniors the opportunity and support to live as normal life as possible and maintain their dignity as they adjust to the changes that are beginning to rock their world.

Commencement 2016

This weekend is the commencement for my graduating class and I will be unable to attend.  That fact kind of sucks.  I worked very hard to finish my degree and did so with honors.  I would love the opportunity to walk in the commencement and celebrate my accomplishment with my fellow graduates.

One factor that keeps me from going is that I am in the process of a big move.  My family has to be out of our home by May 31, because our landlord is selling the house and will not be renewing the lease.  As of this moment, I do not yet know where we will be going as all of our options so far have not worked out.  It makes for interesting living and keeps me from making a graduation trip.

Another factor that keeps me away from commencement is the coming graduation of my son from high school.  My youngest child graduates from his vo-tech school on June 7 and from his high school on June 17.  This is a big moment in this child’s life because he is on the autism spectrum.  There were times in his educational life when my husband and I both feared this day would never come.  It is a victory for both my son and for us as he graduates!

Even though I cannot go, I cannot help but reflect on what I have accomplished.  I am 42 years old and I graduated with my bachelor’s degree with a 3.91 GPA.  Not too shabby.  I am now enrolled in graduate school and working toward a degree in gerontology.  I got As in my first two classes.  Ten years ago I would have said that it was too late for me and that I would never be able to do school.  And yet here I am!  Whether I get to go to Virginia or not, I celebrate!  I know what my accomplishment means to me.  I know what it means for my future.

Lessons from Class on Life and Death

In my Dementia class this evening we had a long talk about death and about the “end stages” of life.  It began with a discussion about grief, and kind of evolved from there.  My professor pointed out that it was important for me to understand myself as a person and to understand my own reactions and feelings about grief and about death.  Such understanding will enable me to effectively help the people that I work with in my everyday life.  I work with older people, and so death is something that is a part of life on a regular basis.

Our class talked about the fact that, as helpers, we have a whole toolbox full of things that we can use to help us help people.  It is so easy to run to that toolbox and pull out this intervention or that “trick” in order to fix whatever is “wrong” with the person in front of us.  My professor said that sometimes the toolbox is empty, or the lid has to remain closed, and all we have in that moment as a tool is ourselves.  Sometimes the only thing we can do is be there in that moment.  We don’t have to have all of the answers, or be able to fix everything.  If I want to be an effective compassionate person, then I need to be willing to be there with people and just listen.

Often when working with the oldest of the older people, we as helpers notice a disengagement or almost a withdrawal from life in general.  It can be easy to freak out and send for evaluations and medications and other interventions, but that is not the appropriate response to moments like this.  For people in the end stages of life, who have lived a very long and full existence and are at the point where there isn’t much more ahead of them, it is normal to begin to think and reflect.  It is hard work to come to terms with life and the decisions and choices that were made along the way.  It takes time and effort to come to a peace about where life has taken a person and where he/she is now.  Sometimes people going through this stage of life (known as Gerotranscendence, if you are interested) need someone to be present, to hear them talk about the things they have been thinking about.

Subject matter like this is deep and requires a level of thought that is intense and frankly takes a lot out of the thinker.  I want to be in a place where I am comfortable listening and just being there in a way that is helpful and healing to the older people that I serve.  I want to be known for my compassion and for my ability to understand and listen and not for my ability to come up with a solution.  Sometimes a solution is an insult.

I am so glad to be able to take this class and think about these kinds of subjects.

What is Dementia?

The word “dementia” is a scary one to most people.  I am pursuing a master’s degree in Gerontology, and one of the main areas I am concentrating on is dementia and how it affects people.  One of the most common questions that people ask me when I tell them I am in Gerontology is about dementia.  People ask if something specific can cause it, like alcohol use, or they ask if it is normal for an aging person to eventually get dementia.  I have to admit, before I began to study this subject, and before I began to work with people who have dementia, I had a lot of questions and misunderstandings about the subject as well.

The fact is, dementia is not a normal part of the aging process.  Yes, older adults can have some level of forgetfulness or take just a bit longer to recall facts, but that process is different from the processes that lead to dementia.  Dementia is kind of a blanket term that refers to a myriad of conditions that cause memory impairment and physical changes that are progressive in nature and that interfere with a person’s ability to function.

Dementia occurs when there is a malfunction or breakdown in brain function.  The area of the brain that is affected first determines the symptoms that a person experiences.  That is why it can be difficult to diagnose a dementia at first.  Two people can have very different behaviors and abilities, and both people can have dementia.  Eventually, every lobe of the brain will be affected by the disease process, but in the beginning the affects can be more localized and difficult to recognize.

I’m also asked how to prevent dementia, and how to treat it.  Legitimate questions, to be sure, but sometimes by using the word “treat” people really mean “cure.”  There is no cure for dementia as of yet.  There are some medications that help some people, but these medicines just slow the disease process and do not stop it.  There are non-medicine interventions that also can help to slow the disease process or at least help someone with dementia feel “normal” and able to have some level of autonomy, but again they do not offer a cure for the condition.  Can it be prevented in the first place?  Maybe.  It really depends on what is causing the dementia in the first place.  Alcohol-related dementia, for example, or dementia caused by high blood pressure and stroke may be able to be prevented.  Alzheimer’s or Frontal Lobe dementia cannot.

Many of the questions regarding dementia come from a lack of knowledge about what it is and how it affects people.  It can be scary to encounter someone who has dementia when you don’t understand just what is going on or what to do.  It is scary and sad to watch the disease process happen.

The most important thing that I tell people when they ask what I do is that people with dementia are just people who need love and compassion as they navigate a scary process that will eventually lead to their demise.  A little education (research, asking questions, etc.) can go a long way toward helping to take the helpless feelings away in the face of dementia.  A little love and compassion will cover over confusion and doubt.

 

 

 

 

I got into Grad school!!!

In just four short weeks I will finally complete my bachelors degree.  I have been doing a lot of thinking about my future goals and have decided to go straight to grad school.  I found a program that matches my intent and bit the bullet and put in my application.  Then I waited.  And waited.

I have finally received word that I have been accepted to the MS in Gerontological Studies program at St. Joseph’s University.  Pardon my moment of immaturity as I SQUEEEE with glee!!  I still have to pick my first classes and get my financial aid squared away, but I will begin my master’s journey on January 12!

This was a long time coming for me.  I didn’t start (or re-start as the case may be) my degree until I was nearly 39 years old.  I will be turning 42 the week I finish my bachelors.  There was a time when I thought I would never be able to go to college and now here I am working to fulfill my dreams!

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