That Unexpected D Word

I was surprised to see that it's been more than a month since my last blog post. There's a reason for that. As you can see from the title of this blog, the reason starts with the letter D. It's a nasty word that co-exists with a few others, like Danger and Divorce and Death. The word is Dementia.

No, I don't have dementia, at least not yet, and I never expected anyone in my family would have dementia of any kind, either. We have little family history of anything resembling Alzheimer's, the most well-known form of dementia.

But--and it's a big BUT--Mom has been diagnosed with Parkinson's Disease, with accompanying Lewy Body Dementia, and Dad also has a recent unspecified dementia diagnosis.

This picture was taken just a couple of years ago,
before any of us realized that dementia would come calling.

The brunt of their care has fallen to my sister, Laura, and her husband, Kent, simply because they live the closest. Dan and I, who each live 400 miles away, in opposite directions, are extremely grateful for their dedication and loving care, even during the toughest times. We have conferred with Laura often, though, and have made numerous trips recently to spend time with Mom and Dad, and help them move.

Mom moved to a nursing home a few months ago, and we helped Dad move to assisted living last month. However, Dad is not adjusting easily, and has been having some additional health issues that have forced his (perhaps temporary) move to the nursing home, too.  

I've always heard that people with dementia don't talk much, and kind of just fade away. So far, I have not found that to be true with either of my parents. Both have been quite vocal about their opinions. Additionally, they both suffer from enough memory loss that they don't remember, from one day to the next, why they have had to make such significant lifestyle changes. 

Change is hard, at the best of times. I've come to realize that change is harder when you have to process it over and over again because you really don't remember much of what you have been told about it previously.

I didn't write this poem about Lewy Body Dementia, but it expresses my thoughts about dementia quite well:

A Daughter’s Decree to Lewy Body 

by Emma Haslegrave

It was then that you carried me,

Throughout the whole of my life,

Keeping me safe and away from all strife.

So now that you struggle with everyday things,

I’ll make sure you’re safe from the pain that life brings.

And now that your quality and love of life’s gone,

I’ll get you the best from each day till you’re done.

And as people wonder, and as people stare,

When you’re talking to things that just are not there,

I will stand beside you and I’ll make them see:

If it’s real to you, then it’s real to me.

The times that you stumble, the times that you fall,

I’ll make sure there’s someone to answer your call.

And when you are dizzy, scared, and alone,

I’ll make sure that kindness and compassion are shown.

When I recently asked you what life has been,

You looked at me sadly and said ordinary.

But I will make sure, though the best of you’s gone,

That together we create a legacy that’s strong.

So as comprehension is the last thing to go,

I hope you can hear me, I pray that you know,

It is now that I carry you.

No one knows for sure what causes dementia, or how it can be prevented. I am certain that age is a factor, and now that people are generally living longer, their brains are more likely to wear out along with their bodies. I've found that a majority of my closest friends have been dealing with their own aging parents' health struggles and dementia, too, so we have been able to commiserate and encourage and pray for each other. In addition, I'm finding that my Early Childhood education and experience have provided some practical applications for me to try as I help care for those who seem to be embarking on their "second childhood."

Mostly, though, I take comfort in knowing that the God who made us loves us and knows us well, and promises to stay with us even as personalities and circumstances change, and as our lives on Earth draw to a close. I pray that Mom and Dad will remember this, too.

I will be your God throughout your lifetime—

until your hair is white with age.

I made you, and I will care for you.

I will carry you along and save you.

Isaiah 46:4