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There’s No Roadmap to Where We’re Going

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​​by Elizabeth Shean

I sit on my bed at the hotel in Cleveland, where I am attending a professional conference, and listen to the phone ringing at home. It is 7:30 a.m. in Mom’s time zone, and she will be sound asleep. In fact, the very purpose of my call is to wake her up. She no longer can set the alarm clock herself, and her Home Instead® CAREGiverSM, Anita, will be arriving in half an hour.

Mom answers after just a couple of rings and sounds groggy, as anyone would when they’ve just awoken.

After a brief greeting, I remind Mom that Anita will be arriving shortly. Mom replies in an anxious tone, “Oh, that’s right! Is Anita going to know where to take me today—how to get me there and everything? Because I don’t even know where I’m supposed to be going.”

“It’s OK, Mom,” I reassure her. “Anita knows exactly what to do.”

Each day, Mom awakens with a belief she is going somewhere: to the movies, to an urgent appointment—or to some unknown rendezvous. She is very concerned that she has overslept, is running late, that she doesn’t know where she’s going or how to get there. And she’s worried she will miss her important event.

Each day I must gently tell her there is no such appointment. No date for the movies. No scheduled lunch with friends. She can take her time; she is not running late. Go ahead and drink a cup of coffee to wake up.

Then Mom feels sheepish. “I’m doing it again, aren’t I?” she asks, dropping her gaze to the floor in an expression of humiliation. “I wonder where this comes from, why I always wake up thinking I have to be somewhere.”

I can offer no useful explanation, only cold comfort offered in a very businesslike tone in order to cover my own feelings of sorrow at my mother’s embarrassment over being unable to control her mind and memory. It’s something to do with the dementia, Mom. I’m sorry it distresses you. Perhaps it will pass eventually.

Sitting in my hotel room in Cleveland, I change the subject. I remind Mom I’ll be home in a few hours and gently hang up the phone. I sort through the conference swag, throwing most of it away and stuffing the few items of interest into my briefcase. I gather my toiletries into the requisite quart-sized bag and place them into an accessible pocket of my suitcase, where I can easily toss them onto the X-ray machine belt at the airport.

In the midst of this packing, I experience a strange moment of disorientation. It is Friday, isn’t it?

I look at my boarding pass again to double-check my scheduled departure time and confirm the flight is going to Houston. Mom’s words echo in my mind, “I don’t even know where I’m going.”

It’s OK, Mom. I don’t know where we’re going, either.


Posted by Michelle barkley (September 23, 2016)

I have just come across your blog and am so enjoying reading it. I only see a few posts, not sure how long you have been writing this. But the posts seem exactly like what I am going thru with my mother. I have several things in place as apps on my phone to monitor Mom when I'm not at home. I love them and She says that she feels comfortable as I can see her and know where she is in the house and if she is not fallen.

Posted by Elizabeth Shean (September 27, 2016)

Hi Michelle! Thanks so much for your kind words about the blog. As you guessed, it is new. You can look for new posts every-other week. I appreciate your support - and please share the blog with others who might enjoy it. Thank you for the tip about apps. I think I need to look into that more, because I don't feel comfortable when I have to leave Mom alone, even for short periods of time. Wishing you all the best!

Posted by Stephanie Penny (September 30, 2016)

This is my every day with mom. It's a life. Not too many people know. It changes us. Every moment. Spotlighted. Forever changed. My mom is 88 yrs old

Posted by Elizabeth Shean (September 30, 2016)

Stephanie, you are so right. You capture the essence of caregiving so beautifully with your words. Bless you and your mom.

Posted by Nancy Altimus (September 30, 2016)

This is to MICHELLE BARKLEY-. I am intrigued. What apps are you using, that can help lower the anxiety I feel also when having to leave my Step Dad? What a nice thought, being able to have a more relaxing, enjoyable time running errands. I thank you in advance.

Posted by Edy (October 03, 2016)

I liked reading your post. It is good to know there are still daughters around who care and have their eyes on their mothers/parents. I see it everyday in my job (Caregiver) . I often think about my Mom who was so far away from me. I like your last sentence, we don't have to be old to forget...every day in our lives we get reminded about it...a moment of forgetfullness...may it be keys, the appointment or what day is it. Good to hear you wishes to you both.

Posted by Elizabeth Shean (October 03, 2016)

Thanks so much for your kind words, Edy. You must be a very special person to work as a caregiver. I'm glad this post resonated with you, and I thank you for sharing your thoughts. Peace to you.

Posted by Michelle Barkley (January 06, 2017)

I haven't been on the site during the holidays, but just saw a question regarding apps I use for Mom while not at her house. I have Safe-in-Home, its motion detectors/sensors placed in areas you want to know that Mom/Dad are in any problems they may have in that area. Ex: on front door. I get a text each time they open or close that door. Temp sensor on stove, texts when it gets too hot. Sensor in shower, text if they don't get out of shower in 10-15 mins. Those are just a few examples. They have lots of different ones, you choose which you want. Their customer service is amazing. They help us set it up and any areas I want to change, they update on my app. They have one for refrig, pills, ect. I just didn't need them so far. Leaves them privacy, you have peace of Mind. At this point, I also have 3 cameras that I turn on, if I get a text, to check to see if she is ok. She is aware of the cameras in kitchen, LR, DR and bedroom. I can call if she is anxious. My kids have the apps on their phones also and keep an eye on her when I can't get to a phone. The whole family is committed to keeping her in her home for as long as possible. We have Meals on wheels daily, and a weekly companion that gives social time to, with option to increase hours if we need it. We discuss weekly how she is doing and if we need to add or subtract ideas. Lots of memory boards with pictures and who people are for her to look at. I had OT person come to house to help me think of more ideas. I am always looking for new ideas to help her out. But these two apps are my all day, go to apps.


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