5 Things Dementia Didn’t Take

Deciding to bring grandma into my home was an easy decision to make. I didn’t stop to think what it would do to, or how it would affect, my family. Thankfully, my other half Carlos, was always on-board with the idea but honestly, neither of us knew what we were getting into or what dementia had done to her.

Dementia took my grandmother in ways I never knew possible. Being forgetful is something we all go through in spurts. But she forgets that I’m her granddaughter. When she asks me about my ‘sister’ I know she actually means my mother (or maybe aunt). She will sit in her room alone in the dark asking herself why she is doing it. She burns and ruins pots and lets the sink overflow. She made herself a sandwich and put the ingredients away in the pantry. We find mysterious cups throughout the house but if you ask, none of them are hers. She wakes up crying at night because she doesn’t remember where she is, so I run out of bed and lay with her till she falls back asleep. She has peeled the paint off the walls. She has left the house while I’ve been in the shower and she hates when I tell her no. Her independence was everything to her and for her own safety, she no longer has it. And she can’t understand why.

To be candid, I cry when I think about the future; Her future in particular. She never spoke of death or what to do if she gets sick. I don’t know what she really wants because it’s too late to know for sure that’s what the real her wants. And though it hurts to say, that’s how it feels.

Because even though I know she’s in there, I never fully know when she’s the one talking or when it’s the dementia.

So we have no plans if she gets bedridden or suddenly comes down with an illness. I don’t know what she wants if the worst happens. I didn’t plan to be making these decisions, but they will be mine to make one day. And sooner rather than later. We’ll take it day at a time and cross each bridge as we get there. So she’s just … with me. She will always just be with me. I don’t think I could ever let her go. And that’s a kind of plan in itself.

So while I lament what I’ve had taken, and more tragically, what she has been robbed of, I have to bring a sense of optimism into my fears. Because dementia will overpower me if I let it. And if she doesn’t let it overpower her, I can’t either. I’ll focus on something that will allow me to push ahead. I know it’s only going to get worse, so for now, I need to remember how blessed I am to have her.

And here’s what Dementia did not take:

1. Her Love of Life. I know she only gleams how serious her condition is from time to time; but she still sees it. All the while, though, she lives so carelessly and remains so in love with life. When we go to new places she gets excited and she loves our walks in the evening. We sit out on the front porch and chat with the neighbors as they walk by and they love seeing her. She has made so many new friends and the kids next door adore her so much so they call her grandma.

2. Her as My Rock. She still lets me lay my head on her lap as she strokes my hair. And when I cry, she cries no matter my reason for crying. And even if I lose that as time goes (and I know I will), I will have that foundation built into who I am as a person. I am stronger because of how she built me. I will withstand any storm because I’ve had her to show me how. She will always be my rock – Even when her dementia is the force I’m standing against.

3. Her ability to love. She tells me she loves me she every morning and every night. And anytime I walk out the door without her, I hear her prayers for me under her breath. She loves my children. She loves our neighbor’s children. She loves everyone. She isn’t bitter. She isn’t jaded. She’s a kind person with a loving heart. And, again, dementia may one day take that from her, but it will never rob the world of the kindness she’s spread during her life.

4. My Memory of Her. This may sound petty, but when dementia riddles the mind of a loved one, you’ll take every victory you can. Dementia can take her memories of me from her but it will never take away my memories of her.

5. Her. I guess what dementia didn’t take is the essence of her. Who she is is as a person is still inside her, deep down (sometimes it’s deeper than others). She is still her under that cloud of smoke and I still see her there. I know she’s there, even when she doesn’t. When she’s lost, I will help her find herself. As much as I can. For as long as I can.

Dementia and Alzheimer’s break the hearts of the loved ones suffering as completely as they break the minds of those who suffer. Research on Dementia and Alzheimer’s is so important to any advances in medicine and maybe one day, a cure. We can’t put a price tag on the significance of finding a medication that could keep my grandmother’s mind her own for even just a little longer. If you are able, please consider donating to the Alzheimer’s Research Foundation.

Bringing Grandma Home

Just after Thanksgiving 2016, my mother called me in tears. She was worried about her mother, my grandmother. She calmed down long enough to tell me she just had a conversation with my grandma but something was off . They had their normal conversation and about half way through, my grandmother was rushing to get off the phone, but in an awkward way. When my mother called back again it was like the first conversation never happened. I was over due for a drive into the city and my mother had a trip planned to visit my grandmother anyway. So the following weekend I drove down from Pennsylvania, while my mom flew in from Miami.

When we arrived, all of our fears came to light.

She knew who we were and where she was but you could see in her eyes that every so often that knowledge would disappear. After much deliberation, we finally decided that grandma would come stay with me. I was closer to NYC so we could still come see relatives. I couldn’t drive up with her that same weekend, so my mom stayed behind packing up her studio apartment, and getting her ready for the move. I decided I would take the Amtrak up on Dec 10th and rent a u haul truck to bring her and her belongings back.
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But my train ride there was met with more worry. While on the train, my mom called me to tell me grandma was in the hospital. The guilt hit us both hard me not being able to come up sooner and her just leaving a few days prior to take care of my younger siblings. Once I arrived to NYC, I headed straight to her apartment. I had a key so I just let myself in. I noticed most of the boxes my mother had packed were all open in a disarray. My heart sunk and I headed to the hospital.

When I arrived at the hospital the staff was relived to see me. They knew so little information because she wasn’t communicating well even with an interpreter. Which confused me because she was fluent in both English and Spanish. As I walked into the room she perked right up smiling and was so excited to see me. The doctor and nurses looked stunned. This wasn’t the same patient they had earlier. She began to explain to the hospital staff who I was and about my children. I looked over at the doctor and asked why was she there, they explained she came in with a fever and were keeping her under observation to ensure she didn’t come down with Pneumonia. I explained to the doctor that I had just come down to bring her home with me.

Though she wasn’t formally diagnosed at that point, we still realized she couldn’t live alone.

The doctor agreed if she was better by Sunday, I could pick her up and take her with me. Since it was already late and visiting hours were over, I headed to her house to start packing. While going through her things I realized that she was becoming a bit of a hoarder. I started feeling guilty as soon as the realization set. How did I not see the signs sooner? I packed well into the night and at 7 am, her friends stopped by to see if she was back home. They were the ones who noticed she was sick and took her to the hospital. I told them I was here to take her with me to PA. I made a group of old women cry like children. They had lived in this building together for well over 10 years. They scheduled all the doctors appointments together and did all the food shopping together as one. And that’s when I realized something kind of beautiful.

I never noticed there was anything wrong because she had the best friends taking care of her.

It was beautiful and sad at the same time. Obviously, I’m glad she had people she could count on when I wasn’t there for her. But because they were, I didn’t realize how much I was needed. I’m just grateful it was only a fever that sent her to the hospital. Her friends helped me pack and throw out garbage till it was time for me to head back to the hospital.
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At the hospital, grandma was getting better but she was surprised to see me each time.

She didn’t remember I had been there the night before or about the plans we’s discussed. We went over it together and spent the day taking snap chat selfie til it was night again. The next morning my cousin and Ex-Husband (of all people!) showed up and helped me rent a U-haul truck and together we loaded the truck to the brim. Once we were done I thanked them both a hundred times and headed to the hospital in the U-haul truck. It was Sunday and  I had picked out a nice outfit for her so she could be nice and clean for our 3 1/2 hour trek back to her new home. As soon as I got to her room her eyes brightened up. She still didn’t remember we were leaving but not even that could bring me down. I spoke to the nurse about a time of release for my lady and she told me the doctor still hadn’t decided if she would be released that day. She still had a low level fever and he didn’t feel comfortable sending her home.

Once the doctor arrived we received the unfortunate news she wouldn’t be going home with me that day. Although her fever was all gone they wanted to make sure she it wouldn’t rise again. I had a 21 foot U-haul truck parallel parked in a busy Bronx street on Grand Concourse and now we weren’t going home. I was beyond frustrated at that point. I had kids at home and work with the next day I wouldn’t make it back for either. We spent the day together talking, hanging out and calling everyone we knew. When it was time for me to go, I promised I would be back in the morning. I’d already turned in the keys for her apartment, so I slept on my cousin’s couch for the night.

I couldn’t sleep a wink worrying about her.

I woke up at 7 am the next day and spent the day trying to convince every doctor and nurse I could find to let us go. By 3 pm the doctor said if we wanted to go home we had to sign a refusal of care waiver. So after talking to my mom, aunt and uncle we decided it was time we headed to PA. So I signed her out and grandma was free. Once dressed, and out the hospital she was a different person. She was surprised and excited when she saw the truck. She couldn’t believe all that I had done in the short time she was in the hospital. But we laughed about the weekend we’d had and we literally drove off into the sun set.

Things since then have not been easy but everyday we learn something new. She’d rather snack then eat a meal. She is the cleanest person in the house, 2 showers a day on a regular day, 3 or more if its hot out. Music fills her spirits, she still loves to dance and wont ever skip a beat. Bringing her into my home has been a joy and I have never once regretted it.

 

This isn’t the first time I’ve written about my grandma (and it wont be the last). A beautiful soul by the name of Dawn allowed me to contribute a piece on her blog so if you want to read that head over to The Divine Life Blog.

Thank you to My amazing friend Jenny for always making sure my grammar is better then it really is.