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.”
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Linda,
Thank you so much for this post. It must be so hard to be going through this with your mother, but your story is really inspiring to me.
I have started wondering lately what the future will be like for my parents, who will turn 69 and 70 in the next year. They both have some health issues, but so far, so good.
I’m going to stay tuned in to your blog; I think it will be a wonderful and encouraging place to prepare myself for the challenges of caring for my elders
Hugs,
Barb
Hi Linda,
Try to stay positive. Like you said, your mother can probably feel your stress level. All she needs is your unconditional love and cuddles. Enjoy each and every memory and remember to live in the moment. She knows you’re there and knows you care. You’re a great daughter. She taught you well.
Blessings!
Wow. This is absolutely heart-breaking. I feel for you, and for your mom. You are an amazing daughter. Your mom is very lucky, and I’m sure she knows it.
Linda,
What a thoughtful essay “The Roller Coaster Ride of My Life” is. I would expect nothing less from you, though! It made me realize that you are spending so much more time with your mom than I am with my parents. NOW is the time for me to spend more time with them– while they can thoroughly enjoy it! Thanks for reminding me that TODAY is the day to enjoy the ones we love!
XXOO,
Kim
Barb,
Thank you for your kind words. I hope your parents stay healthy and can live independently for a long time to come. But, I’ll be here when you need a resource and support!
Barbara Swafford,
Thanks for the encouragement. Yesterday I took the day “off” from visiting — just needed a break. Today when I went I was able to handle it better and wasn’t tear-y at all. My Mom is the BEST!
Vered,
Thanks for the sweet words. I hope my posts aren’t too depressing to read. I feel a joke coming on . . . .
Kim,
Glad I brought “quality time” with our folks to the forefront of your mind. However, I really wasn’t trying to make you or anyone here feel guilty for NOT spending time with the people we love. I know you are a loving daughter and your parents are so lucky to have three wonderful children they can depend on!
Linda,
This is a wonderful website! I’ve mentioned to you before I have a couple of friends that could definitely relate and benefit from something like this. I will forward it on to them. Meanwhile you are doing everything possible to take care of your Mom and that speaks volumes of your character (although I already knew that.) With love, Di
Diana,
Thanks for visiting my site and welcome to my TLeC community! I hope your friends find it useful as well. You and your Mom have also taught me worlds about character!
Isn’t it great that we are now able to find instant, smart, sympathetic, support at the click of a mouse these days? I don’t know how I would get through the difficult days if I didn’t have my online friends and resources. Chat rooms, message boards, and online assistive living stores are so informative.
Hang in there and use these tools to take a bit of the burden off your shoulders.
Take care.
Hi Sam,
Welcome to the TLeC community. You are absolutely right! I really appreciate your positive thinking and support.
Enablemart looks like a great resource and I’ve bookmarked the page for future reference. Thanks for sharing it here.
Take care of yourself, as well. If I can help during your “difficult days” don’t hesitate to check in at the blog or use the contact form to send an email.
I’m enjoying your blog as a daughter working with two parents in their early 90’s. This is my biggest challenge to date: balancing the rest of my life (work, marriage, twenty-something children) alongside the ever increasing emotional needs of my parents (not to mention the physical although they are in a good place right now).
I admire your ability to visit twice a day and to spend the time engaged in “quality” efforts. I feel my time is spent on the basics of survival; listening to the complaints and trying to solve problems. We don’t have many “fun” times and this makes me want to cry (in front of them…) Don’t know how you’ve created and stuck to such a lofty plan. I’m impressed. I find my very human side coming through constantly. I’m tired and sad much of the time.
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