dementia

Sweet moments I want to remember

dementia

Sweet moments I want to remember. I record them here so that I won’t forget. I want these memories to cherish, long after my parents have passed on. 

Nights are often hard for my mother, but unless she’s had a nightmare, mornings are entirely different. This morning I went into their room after hearing them rustling around and my father closing the bathroom door. It’s dark but there’s a nightlight shining a dim path to the bed. Mom hears me enter and says, “Good morning!” Sweet and cheerful. 

She’s all tucked in and doesn’t want to get out of bed, because she’s warm and snuggly under their soft, thick comforter. She asks if there is anything we have scheduled for today. I say, my face somber, that there is one very important thing that she must do today. She looks very serious and you can tell she’s wondering what it is. Then I say the name of her favorite pastries that I had delivered that morning. As I start to say it, she knows, and we both exclaim it at the same time, “Malasadas!” She lights up like the biggest, brightest Christmas tree you’ve ever seen and squeals! My heart explodes. I need to record her one day. I need to know that years from now, I can watch that moment again and again.

She’s become more childlike more often as the disease progresses. Sometimes a sweet little kid and sometimes the tired, frustrated kid throwing a temper tantrum, like when I make her drink water but she wants her Diet Pepsi. Do not fuck with her Diet Pepsi!

We clap and cheer a lot nowadays. When she finishes taking her pills. At the happy ending of a Hallmark movie. Any accomplishment, any wonderful moment is met with cheers and clapping. I want to look back at the end of our time together, knowing that we made the most of those moments and that we made many of those moments.

J.H.

So.

dementia

Mom woke up at 1:30 pm today. It’s now 2:12 pm. She doesn’t remember me or Dad or our home.

I’m… numb? Not feeling much. There’s a hint of emotion deep down. Right now I’m calm and reassuring. I need to be for her. But when that emotion finally hits?

This won’t be pretty.

Okay. We’ve sorted out that she does know us but that it doesn’t feel real to her so she isn’t sure.

I’ll take this over her not remembering us at all. But it makes my heart ache that she has to feel this way.

Adventures in the Night

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Both of my parents have dementia, as well as other health issues. Mom is aware. Dad struggles to accept Mom’s diagnosis and simply cannot perceive his own. Dad also has hearing loss in both ears. While both are fall risks, Mom has more trouble with this than Dad. She always uses a walker and can’t get out of bed without assistance.

Worried about something happening at night and her being unable to summon me, I bought a caregiver call pager system. Mom always wears a call button on a lanyard around her neck. The receivers are in my bedroom and the living room – opposite ends of the house. When she pushes the button, chimes can be heard throughout our home.  

The other night I was in the living room. It was 2:30 am and I was ignoring sleep to catch up on episodes of The Good Witch. The chimes rang, startling me, and I jumped out of the recliner and dashed to their bedroom. I always feel uneasy when it goes off during the middle of the night when they should be sleeping.

I will admit that, after they accidentally set the alarm off while “celebrating” Dad’s birthday earlier this year, I pause and whisper a wish each time before opening that door. I think all three of us would agree that once was one time too many for me to walk in on them. 

This time I found myself bombarded with questions as soon as Mom sees me. Why are people in the house? Where are the people at? What are they doing here???

Okay, so no sex. Hallelujah! I’m already breathing easier. This is likely just a dream or delusion, but I feel her forehead just in case another infection snuck up on us. UTIs are tricky things now, the usual symptoms no longer apply. Instead, weakness in limbs and delirium are what tip me off and then it’s a race to avoid the Emergency Room and/or hospitalization. Her temperature feels fine. No fever.  

This is where it gets tricky. The advice for dealing with dementia moments like this is to enter their reality and I’m good with that. But, when there’s two people with dementia, there’s two realities that don’t always match up. In this case, there’s also one person to comfort as he watches his beloved wife deteriorating.

So I enter her reality and reassure her that the people have all gone home now. The house is empty except for us.  But this confuses Dad, because obviously, there were never any crowds of people invading our home. It gets a little complicated!

Mom isn’t convinced, so I grab her walker and we take a stroll through the house, making sure all those people are gone before heading back into the bedroom. She needs to go to the bathroom, so once I get her settled, I pop back out to check on Dad, who’s sitting on the edge of the bed, vulnerable and forlorn. 

My parents have been married over 60 years. If ever there was a couple that made me believe in happily ever after forever, it’s them. Their bond becomes sweeter and stronger with each day. The thought of ever having to separate them in the future weighs heavy on me. It’s a decision I hope I never have to make.

I perch on the bed next to Dad and wrap an arm around him. Mom’s okay, I say, it was just a dream. She’ll be back in bed shortly. Sixty years is a long time to live life with someone, then slowly lose them. He climbs into bed while I retrieve Mom. A few minutes later, they’re both tucked in safely, all concerns abated, and lights out. The rest of the night is quiet. In the morning, all is forgotten.

The first time one of these incidents occurred, Mom was convinced that there was a baby in the house. She could hear the baby crying. Poor Dad. The look on his face when I told Mom that I would find the baby? He thought I was losing it, too! 

Sometimes, you wonder how their brains conjure up such strange thoughts and delusions.  A week or two ago, Mom told me that the New Testament had recently changed and that she had a copy of it on cassette that she needed to get to Jesus when her and Dad were transported to Heaven. She told me she had a package in her pants for Jesus and she needed to get it out. 

It’s okay to laugh. Honest! I sure did afterwards. And when I do, it’s not in front of her or at her. Never at her. Mom and I are both big believers in the power of laughter and she understands that sometimes you need to laugh, or you’ll scream, go mad, or give up. Finding the humor in a situation is a lesson she taught me. 

When night comes

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Night time soothes me. The quiet peace of night allows me to find myself again, to recharge for what the next day brings. Even more precious now that I’m home full-time with my parents. But for Mom, it’s a different story. Nights are hard. Not every night, but more and more often she struggles with anxiety and fear after dark, especially at bedtime.    

I went into the bathroom to help her finish preparing for bed. She was still sitting on the toilet, bent over with her face buried in her hands, hidden from sight. I touch her shoulder and ask how she’s feeling. Fine, she says at first. I squat in front of her, my face level with hers. A bit of coaxing and her voice shakes as she admits she’s afraid because she’s dying. She’s dying and alone.

What do you say? What can you say? She is dying. She’s not alone, but when she takes that final journey into the unknown, she may well be alone.    

Many emotions run through me – heartbreak, a feeling of utter uselessness, dismay as I scramble for some magical words to ease her fear. She has a strong faith so I speak of God to her. Remind her that he is always there with her. Even when Dad and I can no longer be there, he will be.

Dad and I tuck her into bed. I put on her c-pap mask and gently kiss her forehead, as I do every night. Except I stay there this time, softly stroking her hair while saying a quiet prayer over her. These small gestures calm her and I leave their bedroom assured that, for now, the fears have been quieted.  

As someone who left the church many years ago, and with a lot of pain and anger, it’s strange to find myself saying prayers over her and singing gospel songs. For many years, I would have dreaded doing these sorts of things. Growing up female and gay in the church brought such damage to my life. Even when I started therapy yet again in 2016, decades after I left the church behind in my 20s, I still battled these sneaky, left behind fears (pun intended) even though I no longer subscribed to those beliefs any more.

I’m not sure how it happened, but somehow over the past five years I finally let go of them. It happened slowly. I wasn’t aware when or as they left. But I’m thankful for it because I am able to pray and sing and comfort my mother in the ways that she needs without hurting myself.  

Thankfully, by the time she got her nightly hugs and kisses from Dad and I said that prayer over her, she was feeling safe again, her heart comforted. She was reminded that she isn’t alone.

And now I’m here in my recliner in the living room, typing this out and feeling the heartache of the fear I witnessed in her half an hour ago. Those memories are harder to lose. They cause a deep ache, one I don’t want to feel. But they also compel me to try harder to do what I can to keep those moments at bay and to find ways to comfort her when they do happen.

J.H.