“Today we had a doctor appointment. My sister Mary Ann is out of town and dad is exhausted so we told him to stay home and rest. I told the doctor he got a break today since it was just mom, her caretaker Paige, and me (Dad and Mary Ann usually go too).
First of all, the last two nights mom hasn’t slept well, which means dad hasn’t slept well. From all I’ve heard and read, this is not uncommon in people with dementia. I think about how tired I used to be when my babies woke up more than once a night — the next day I was exhausted — and I was young. My dad is waking up three and four times a night with her and it shows. He is exhausted. They have a spare room. He does not want to sleep there, he wants to sleep next to her — period.
Paige takes mom to her appointment and I meet them there. The doctor is 40 minutes late and mom is restless and tired. He finally comes in. We like him a lot. He is patient and detailed with her and us. He starts going through her information on his computer and asks if we have seen the MRI she had done. We have not. He pulls it up and shows us her brain. He also shows us the white spots and how some of her tissue has shrunk. Mom does not know what she is looking at, but doesn’t seem to mind. For me it has caused tears to flow.
He expresses that the neurologist will explain more to us but it would be helpful to keep her brain active, suggesting puzzles and crossword puzzles. I look at him and quietly say, ‘She used to do puzzles, she can’t do them anymore.’ He says, ‘OK’ and I can see that he realizes she is farther along in this journey then he realized.
Mom’s eyes are closed as he continues to talk. She is tired and wants to leave. He does a brief exam and schedules a follow-up appointment in 3 months and disappears. Mom says she has to use the bathroom. Paige says she’ll take her. It is right across the hall from the room we are in. I wait for the paperwork. About 3 minutes into my wait the bathroom alarm starts ringing as if it’s a fire drill. I assure everyone it is just my mom using the bathroom (and pushing buttons). It stops. Mom comes out ready to head home.
As Paige gets the car I wait with mom. I park her in the sun (which she loves). I am talking to her and she is quiet. I thought her eyes were closed but I look closer and there are tears running down her face. Her arms have started randomly jerking (which happens occasionally). I ask her if she is ready to go home. More tears. I ask her if she wants to see dad — Carl. She shakes her head yes. I tell her she will see him soon.
We get her in the car and I follow Paige to their house. Paige gets out of the car and says, ‘I don’t know what happened. She is crying.’ We help mom into her wheelchair and she is quiet. More jerking. We get her inside and help her into her recliner. Dad is upbeat and happy to see her. We tell him she needs to sleep, she is exhausted. He immediately reaches for her hand and with her eyes closed, she squeezes his hand and falls asleep. The jerking stops.
Dad wants to know how she is, how she did, is she OK? We tell him she is tired. He looks at me and is teary eyed and says, ‘I love your mom.’ I head to the kitchen so my tears can overflow without him seeing. I get him some lunch and move a book out of the way that is on his lap. I realize the book he was reading while we were gone is one he normally keeps by their bed. It is worn and one that has been around for as long as I can remember, with different pieces of paper sticking out of the pages. The tears start again — my tears.
I realize we have quietly been moving onto the next stage of this horrible disease. She has been moving backwards in time for awhile — talking about her mom. Seeing photos of dad from when they were first married and thinking it was him now. Remembering specific things from her childhood. This next stage she is more childlike. At times she says inappropriate things. She wants to do things over and over again and we have to distract her to have her move on. She makes faces at food she doesn’t like. She cries for the person she loves when she misses them or is tired. All the things we used to do when we were small and couldn’t comprehend the world around us.
The time in our life when we needed someone to direct us, to hold us when we were scared, to make it better when we hurt, but most of all to love us. That someone was her. The mother that did all those things for all of us is now waiting for us to direct her, to hold her so she’s not scared, to make it better when she hurts, and most of all, to love her unconditionally. We have come full circle, and we are ready.
This story was submitted to Love What Matters by Becky Gacono of Annville, Pennsylvania. She is chronicling her mother’s dementia journey on their Facebook page and in a series of posts for Love What Matters:
Family combats mom’s painful dementia journey with humor
‘They are two that have become one’: A day in the life of my mom’s dementia journey
‘It was my birthday when she no longer knew my name or who I was.’
‘His love for her is palpable’: Doting husband’s explicit instructions for wife with dementia’s morning routine
‘We finally get to the kitchen table and their sandwiches are out and ready to eat. Then this happened.’
‘I never thought I’d get to kiss an angel’: Daughter overhears midnight whispers between mom with dementia and dad
‘I realize love is the most powerful, the most exhausting, the most incredible way to live your life’
‘I tell her I have her ring and she starts crying’: Daughter recounts mom with dementia’s anguish over beloved ‘missing’ ring
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