Loosing a Loved One to Dementia 

Whether you are the one diagnosed, the family of the diagnosed, or the caretaker of the diagnosed – this post is for those of us who have suffered or do suffer from Alzheimer’s or Dementia. My intent from this is to bring comfort and a fresh perspective to anyone in those three painful categories.

For those of you who don’t know, I spent the past two years working in the Special Care Unit of an assisted living facility.

This unit had my heart from day one. I felt a deep sense of compassion for all of the people who lived with dementia, & became excited to help their days be worth living.

There were so many aspects of this job that were challenging. It was a challenge to calm down an angry resident throwing punches. It was a challenge to guide back home the resident who came walking down the hall completely naked, covered in poop head to toe, and unaware. It was a challenge to redirect the anxious, hysterical resident whose convinced that her husband (who passed away long ago) is cheating on her in this moment. Or the resident who truly believes that she is the president of the United States, so you must do everything she says. It was a challenge to get my residents in the shower, or to even use the toilet most of the time.

All of these things & so much more were daily challenges I faced as a caregiver. However, if you know me, you know that I love a challenge. Not only, most importantly, was I able help the resident, but I also felt accomplished for handling those stressful moments well.

But the longer I was there, the less I considered these things challenges. I got to know each resident as a person. I know them from the depths of their life story to the smallness of how they take their coffee. I began to see these people not only as individuals, but as friends. And as I did, the only challenge I began to face each day was the fact that these people that I love so deeply are living with such a terrible disease.

It wasn’t fair that these people suffered in this way. Not only did they suffer, but their families suffered greatly. And then I realized that I was suffering for them as well. My heart broke because of this disease. I remember driving home from work one day and being so angry. I thought to myself, “is a person really still human – are they really still themselves – once their mind has left them”?

This question ate at me that night and broke my heart.

But then God allowed me to see things from a new perspective as I came into work the next day.

I walked in to find a very angry Ellie (alias name). Ellie was  probably the worst case of dementia I have ever seen as her dementia was the most progressed. Her mind was totally gone and most days she was far from the ability of holding a conversation.

I walked into my unit on this day to find her yelling and cussing and threatening – her normal self 24/7. But on this specificity day, I went up to her with my arms open wide and a huge smile on my face. I squeezed her tightly and said, “Ellie, I just love you so much”.

All at once, she was at peace. No more yelling, cussing, or threatening. For just a split second she had no anger and no pain. With the biggest, two-toothed smile, and joy in every inch of her being, she loudly declared, “oh I love you too”!

It was in that moment that I realized this truth: No matter how gone a persons mind may become, they are still so very human – they are still very themselves. Ellie was deep down in there somewhere – it just took some effort to find her.

I’ve taken care of many residents into their last days. And I can tell you that not a single resident, as gone as their minds became, EVER lost the ability to give and receive love. And this, I believe, is what makes a person themselves – it is what makes a person human.

All at once I saw that what makes a human being human is the heart with which one can give and recieve love.. There was an intamacy there that went far beyond words or acts” –Henri Nouwen

I will not reduce the utter sadness of this disease. It is a horrific thing for any person to have to go through. But I tell you that on a daily basis these people in my unit laughed, enjoyed each other, smiled, lived, and loved.

My encouragement to those who have a loved one suffering from dementia, is that as you feel like you are slowly loosing your mother or father, please know that no matter how progressed their dementia becomes, you will always have access to their heart.

At the end of the day, God is good. Through this kind of suffering, we have to hold onto this truth. It will sustain us. Romans 8:28 says that God works all things together for the good of those who love him! I promise that somehow – someway, even this, God will use for good.

And most importantly, in the grand scheme of things, our lives here on earth are so short. I praise God for the promise of a better life after this one – with no more sickness and no more tears. I praise Him that He will redeem every individual for everything we suffered from in this life, beyond what we can imagine!

God is good! I pray you are able to rest in this truth today.

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