The Roller Coaster Ride of My Life

As a child my all-time favorite ride was the roller coaster. From the “baby” ride at Nunley’s, our local amusement park on Long Island, to the big, adult coasters at Palisades Park and Rye’s Playland, larger theme parks, I wanted to ride them all. None of them scared me.

As an adult, being a family caregiver has put me on the roller coaster ride of my life. And it’s not, in Disneyland terms, an E ticket. And it’s darn scary.

Since my Mom turned 99 at the beginning of July (which I wrote about here), she’s had increasing health issues and the roller coaster ride has picked up speed on the downward side. Without going into the medical details, she is now confined to her bed in the room of the board and care she lives in nearby. I can’t help worrying if this bed is where her final weeks or days will be spent.

When she stopped walking and was confined to a wheelchair over a year ago, it didn’t bother me nearly as much as seeing her in bed does. Of course, I was sad that she couldn’t walk on her own any longer, but it also was a relief in some ways because it lowered the risk of her falling if she got up and tried to walk without assistance. Plus, we could still go outside together and enjoy one of her great loves, the beauty of nature, on our strolls through the neighborhood and the park. That’s gone now.

In her wheelchair with help from myself or the caregivers, she could still participate in the social activities in her house, including sing-a-long music in the living room, arts and crafts, daily meals with the other five lady residents, plus all of the holiday and birthday celebrations that take place in the heart of the board and care, the kitchen! Now her meals are served to her one-on-one in bed, and whether or not she can be put into her wheelchair to join any activities remains to be seen.

While I am a very optimistic person, my intuition tells me she won’t be getting out of bed again. When I see her in her hospital bed, she looks tiny, frail and vulnerable. And as I flashback to when she was a pleasingly plump woman full of life, this contrast just breaks my heart.

I visit her daily, sometimes stopping by both morning and evening. We have the best quality visits I can create — looking at photo albums together, telling her about family news and events, reading letters she’s gotten from relatives and friends, sharing favorite books and family stories, gently putting body lotion on her hands and feet, massaging her feet, or simply “cuddling her up” as I like to call showering her with as many hugs and kisses as I can.

We’ve decorated her room with photos, cards and flowers that she can see and enjoy from her bed. The radio is always on for her to listen to — the easy listening station play lots of songs she probably enjoys. Aromatherapy is also provided by the hospice company in the form of candles and reed diffusers.

And I never let her see me cry, because I believe she can pick up on my levels of stress and worry, and I do not want her to worry as a result. Just as she did to protect me when I was a little girl, the words, “Don’t upset the kinder” ring in my ear. Yes, Mom, turnabout is indeed fair play.

Despite the many visits and pretty room environment we’ve created, I’m worried she’s bored laying in bed all day. As much as I’ve read about Alzheimer’s Disease over the last ten years, I still have many questions about what is actually going on in her brain, and what is she thinking about all of this? How much thinking is she doing at all? Is there a level of consciousness where she wants to tell me her thoughts or feelings, but can’t due to the aphasia (inability to speak) she’s had over a year? I think she still understands very simple questions because she responds with her eyes or a slight head nod, so maybe she is thinking more than we realize. This saddens me deeply because maybe there is more I can do for her if she could only tell me!

Driving home after this morning’s visit, I forced myself to focus on the upward incline of this roller coaster ride. There are positives. She’s still eating, which shows she has the will to live. She’s comfortable and there are no signs of pain. (According to the hospice nurse and caregivers, we would see her wincing or hear moaning if she was experiencing pain.) I’m so grateful that I put her on hospice last year. because it gives me peace of mind knowing she will not be sent to an emergency room or hospital where she would be subjected to needles, tubes and invasive tests. And I am also very thankful that my Dad, who passed away three years ago, doesn’t have to witness these end-of-life changes to the one true love of his life.

So I will continue to ride the ups and downs on this roller coaster of caregiving, hating the downward plunges yet always looking for the next incline. And in doing so, I realize there’s a whole other meaning to the phrase “Hanging on for dear life.”

Related posts:

• My Mom Turns 99 Years Old on July 4th!