December 12, 2018

Lunch with Jane:

When I arrived today, Jane was sitting at the kitchen table, but in her wheelchair, not her normal chair at the table. I asked Emely about it & she said Jane was really leaning today & walking was challenging so Emely put her in her wheelchair for lunch. I asked if Jane had another episode & Emely said not on her watch, but yesterday Jane had been walking around a bunch & was doing well. Today Emely found her leaning & struggling to walk.

Jane ate really well for me, but drinking water appeared very difficult. She seems to struggle to swallow when drinking out of the glass & mostly spilled it. I asked Emely for a straw not knowing if Jane would even remember how to drink from a straw. I was grateful she seemed to remember & with the straw was able to drink her glass of water. Dehydration can be a problem for dementia patients. They don’t know they are thirsty & won’t ask for a drink. It worried me when Jane was struggling to drink water out of a glass. I’ve never known this to be a problem for her – but this is the story of dementia. New challenges regularly arise.

Last week Jane had requested a lemon cupcake – her favorite, so that’s what I brought today. Jane was quiet & not very engaged today, but she did smile when I told her I brought her a lemon cupcake. She seemed to enjoy eating it too.

It was a bit cooler here today & with Jane leaning in her wheelchair I decided it best for us to visit in the clubhouse. Robin came over to say hello while Jane was finishing her cupcake so I took her with us to the clubhouse, knowing Emely would take her back with her when she returned the lunch trays to the kitchen. I feel bad for Robin because she doesn’t have family living in state & rarely has visitors, yet she is fairly early in her journey with this disease & still wants to engage & talk to people. She is well enough I can keep an eye on both her & Jane at the same time & I know she enjoys the chance to get out of the house for a bit. Music was playing in the clubhouse so Robin danced while Jane & I chatted.

My stepmom was sad today – I could feel her sorrow & it broke my heart. I hate to see her sad. What causes her to be sad? Does she remember her old life & she mourns it? Does she remember her family & friends & miss us? What is going on inside her head? Conversation was hard. Jane tried her best to stay awake & be engaged in our conversation. She held my hand tightly & squeezed it occasionally. I told her I ran 18 miles on Saturday – could she believe it? She nodded her head yes. I asked her if she was proud of me to which she said yes. I KNOW she understands me. I don’t believe this false notion that dementia & Alzheimer’s patients don’t know or don’t understand. I fear they understand way more than we want to admit. It’s why I talk to Jane & share my life with her. I believe this is why she still feels connected to me – because I speak with her like I did before the disease took over. At the end of the day, she is still my stepmom. She still loves me & wants the best for me – like any mother wants for their child.

Jane was very tired. My guess is she had another episode last night. It is usually the reason the lean & it does take a toll on Jane’s body. I wheeled her back to the house & then moved her into a reclining chair in the great room. This way she can nap but still be surrounded by the other residents. My stepmom always enjoyed people & I think this is still the case. She doesn’t want to nap alone in her room – she wants the company of others. The reclining chair works well in this situation.

Before I left I told Jane it’s Bosco’s birthday this weekend & he has requested I make cupcakes. I told her I’d swing by to see her & bring one of the cupcakes. She smiled & patted my arm. This is, after all, how the tradition of cupcakes began during my visits. My dog Bosco, wants cupcakes for his birthday so I make the dogs cupcakes. It’s much easier to make an entire batch than just 4 for the dogs, so I brought Jane a few cupcakes & she loved it. I wonder if she remembers this is how our tradition began?

I hate visits when Jane is having a bad day. It hurts my heart to see her this way & the visits take an emotional toll on me. I’ve learned to give myself grace in this situation. To come home & take a nap or zone out watching tv for a bit. Work can wait – I will bounce back quicker if I take an hour for me – to allow myself to feel the sadness & move past it. I will continue to visit my stepmom no matter how hard it becomes because she needs me. And this is what you do in life – you show up for the people you love no matter how difficult. It really angers me how easy it seems for people to forget about their loved ones & move on with their life because “it’s too difficult to see them this way” or because “they don’t want to remember them this way.” If the situation were reversed & you were the person ill, would you want people to stop visiting you?

I am grateful Jane never goes a day without a visitor. She sees my dad nearly every day, she has me, she has a dear friend, she has my brother & sister in law.