The Journey of Dementia: A Daughter’s Story

affordable home care for older people elderly home assistance help for senior caregivers home care companies senior citizen careThere’s just something about family.  You can have unending patience and tolerance for the annoying lady next door or the guy at work who gets under your skin, but when it comes to your younger brother’s habit of repeating the same jokes, it crosses the line.  And you don’t mind letting him know about it.

One of our caregivers, Jody, experienced this phenomenon with her mother.  Jody has been a Right at Home caregiver for over three years.  After a successful placement with “Jane,” a sweet woman with advanced dementia, Jody became our go-to caregiver when other dementia clients needed fill-ins.  Jane’s family and other caregivers spoke so highly of Jody—noting her true caregiving heart—that we knew she’d be a reliable choice when fill-ins were needed.  She really is an exceptional caregiver with a compassionate heart.

Her mother was 77 when Jody started noticing changes in her behavior and that her memory wasn’t as sharp as it once was.  Then last year, her mother had a cerebellum stroke, which has affected her motor skills and turned her memory loss into full-blown dementia.

As skilled and compassionate as Jody is in providing senior companion care, she found the experience of watching her own mother descend into memory loss a very challenging experience.  We asked Jody to share about her experiences so that others could benefit from her journey.

 

Going into the home and meeting my client Jane for the first time was really easy.  I walked in with the mentality that Jane was going to need help with certain things, and that was that.  I prepared myself mentally and emotionally for what to do to serve her.  I got my directions from someone else . . . She was easy to work with, and our relationship developed naturally.  I walked in without any expectations of her. 

With my mom, however, I knew ahead of time what she had been capable of doing.  It’s not that I didn’t have compassion; I was in a huge state of denial, thinking, “It can’t be like this.  She can’t be like this.”  You put an expectation on your parents for how he or she should act, which you don’t put on your clients.

With my client Jane, I accepted her for right where she was at.  I was given her limitations ahead of time, and it wasn’t a surprise or frustrating.  But with my mom, I was learning them for the first time.  I remember being at church on Sunday morning, and my mom would point to the worship leader and ask, “Who is that?”  She had seen him hundreds of times before, and now she couldn’t remember who he was.

In many ways, having a parent with dementia is like going through the process of loss, like experiencing death.  You haven’t lost that person, but you’ve lost the communication you’ve always had.  And then you go through denial and many different emotions.  It’s hard when I’m sitting next to my mom, and she says, “I don’t know when Jody is coming home from school.”  For so many years, she’s been my mom.  She’s been the one I went to for comfort, advice, and I looked up to her because she was such a great example of marriage.  Now she has become dependent on her daughters, and we are the adult and the parent.  I now assist in feeding, toileting, and bathing her.  I need to explain to her what her favorite foods are and help her with some of her great memories from the past.

At first, I fought it.  I would say, “You should remember this.”  With your parent, it has a lot to do with acceptance.  The emotional investment with your parents is different than with your clients.  I became angry and frustrated because I didn’t know what was happening.  I knew what dementia was, but I didn’t fully understand it.  When you see your parents start to fail, you don’t want to accept it.  We force them to try to remember things or scold them, whereas with your clients, you accept them where they are at.  You listen to the story, and you don’t correct them.

As soon as I started accepting my mom—instead of constantly correcting her—the situation changed.  Acceptance is really the key when you have a parent with dementia or who suffers with any illness.  When you see your parent start to fail, you don’t want to accept it.  We put an expectation on our parents for how he or she should act.  I think fear drove my denial and frustration.  As soon as I embraced and accepted things for the way they were, it changed my heart and attitude.  I’ve always loved my mom immensely, and that has never changed.  But now I am ready to serve and care for her as long as she needs.  I treat her how I would treat Jane or any of my other clients.  I learned to redirect her and to listen to her story.  I learned not to argue with her. 

One thing I will say to extended family members—because of the dementia, there has been an increase or onset of depression with the people in my family.  This past year of caring for my mom has been a lot of hard work, and you just can’t be up and positive all the time.  You will be sad and depressed.  When this happens, it’s important to seek professional help or find a support group for the depression.  Your life is changed, and you won’t ever get that parent back in the way you knew them.  It’s affected all of us when it comes to emotions, even my dad.  You think you shouldn’t be sad or grieving, but you’ve lost a part of someone you’ve known for a lifetime.  Get the help you need so that you can spend your energy enjoying the precious time that you have.  You can create new memories, and it’s worth every minute.

November 10, 2011

 

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