2015 – 06/25 – 

I decided that assembling parfaits might be fun for my mom. I brought in some pudding mix and she had a great tie with the mixer. She needed guidance at the beginning. She had forgotten how it worked. I demonstrated while she watched in rapt attention. Then I guided her hand onto it and helped with the buttons so she could mix from there. She really enjoyed it a lot. 

One of the other residents was very curious and excited about what we were doing so he came over to look and it made her laugh. It was so cute. It often feels like they become children again during this disease. They keep moving backward through time. If you are able to embrace it, there are so many happy moments that result. They are unfettered by the stresses of real life. They are just living. It is simple. They are unaware of everything else. It is a wonder in so many ways.

Simplicity is essential. Getting to their level, trying to see through their eyes, not complicating the situation. These are the things that will make all the difference so that is what I focused on doing. She had a lot of challenges and this project was going to feel very much like a puzzle to her. We lined up cups together, sliced up lady fingers together, laid everything out in steps to make it easier for her. First I had her put a couple of pieces of the lady finger cubes into each cup. This took some real effort on her part. She struggled a little at the start but I patiently waited and guided her with words until she figured it out. She looked up at me with a question in her eyes after almost every cup and I smiled and reassured her that she was doing a great job. Soon she had the pound cake in all the cups and it was time for the next step.

This activity involved patterns. She had to put lady fingers in, then pudding, then fruit, then repeat until the cups were full. It took a long time but she did it. It did bring sadness that it was so hard for her to do these things when she did so much her whole life, but it also brought joy when her face would light up every time she got a layer done.

Soon the cups were all full and they looked so pretty.  When I was young I remember going to special events like family gatherings after a christening. My mom would often make lemon cupcakes. She would cut the middle off and fill with lemon custard and put the top back on.

After that she would get some confectioners sugar and sift it onto the tops of the cupcakes. They ended up being both simple and pretty plus very tasty. It was a sort of signature dessert I suppose.

Today I decided to bring back a little muscle memory since she had done this so often. The tops of the parfaits were each going to be sprinkles with confectioners sugar. I brought a sifter and put four cups at a time onto a plate so she could sift the sugar onto them. She loved doing this. She was beaming the whole time. It warmed my heart so much to see her like that.

These were so much more than little parfait treats for the residents. These were a connection between my mom and I. We were bonding deeper than we ever did before she got sick. It was bittersweet.

We sat and talked and drank coffee while the cupcakes baked in the oven. She was going backwards in time. She was telling me stories about how yesterday she was worried she wouldn’t get to the bakery on time. She said she had gotten out of school late and had to run all the way to the bakery to work with Daddy (remember, I was her sister, so even though she was talking about my grandfather it was actually my father).  I had no idea my grandfather worked in a bakery. I knew she worked in a bakery bit never knew my grandfather did. She was telling me how she would tie bows in the boxes and would decorate the cakes out back. These were stories I had never heard. I am not sure how much of it was real but it certainly felt real as she told me. It was a gift, a glimpse into her past that I was being given. Tears came to my eyes as she went on and on about it. 

Later we decorated the cupcakes together and she helped hand them out to each of the residents that were able to eat them. Her words were all that was in my mind as the day went on though. I was so happy to learn something more about my family. Despite the pain and heartache of this disease, there are these little moments that are so special. They are the bright spots that you need to hold onto with all of your might. These little moments are what will give you the strength and fortitude to get through the rough times. It is certainly a roller coaster, but one I was happy to ride on with my mother.

2015 – 06/11

I baked a lot of cookies and would bring them in regularly to pass out to the residents. I decided to see if my mom could handle making some with me. At home, I packed up all the ingredients and I printed out my recipe. I brought in all the supplies including a mixer, bowls, scoop as well as all the ingredients. She was SO excited that we would be baking from scratch. She was such an avid baker and I think some part of her was longing to be doing this again. This was not a cake but I felt like it might be something she would enjoy all the same. Her eyes were bright as we got to work. There is some “muscle memory” that comes out at times. It pokes out its head despite the dementia and allows a person to do things they might have forgotten about. The brain is such a fascinating thing. That is what happened on this day. She handled the mixer without thinking and it was beautiful!

Marcos, the activities director, kept close by. I think he was having just as much fun as my mom and I were. He really enjoyed me bringing in things like this. 

My mom did have some trouble with the measuring cups. She no longer had the logic that goes along with measuring precisely, but we got through it. I helped her along. I smiled and said, “Oh let me check that real quick.” I would then even it out or add more then hand it back and say something like, “Wow, there you go. It is perfect to add to the bowl now!” She sought approval all the time and was so very happy when I would tell her she was doing a good job. Her whole face would light up and she should smile the most amazing smile at me. I will never forget those days. They are so precious.

Teaching her how to use the scoop was a bit of a challenge. She had always used a spoon for cookies. I told her to think of it as a big bowl of ice cream and she laughed. It worked! After I demonstrated with the first few scoops she got right down to work. After each one she would turn to me and ask, “Like this?” and I would nod and smile and tell her it was perfect. 

She did a super job. I brought in cookie supplies multiple times because it was something so enjoyable. The residents really enjoyed the “show” as we prepared food and were always excited to get the treats after they were made. I really did love those days. There were challenges, of course, but being able to give her a little sliver of normalcy in her mixed-up world was a gift I was so happy to give. We did some really solid bonding on these days. 

Quality time is important. As much as they might forget all the details as soon as you have walked out the door, the feelings remain in their heart. Those feelings stay strong even when the memory is gone. I lived by those words and gave her every ounce of quality time I could. I wanted this time to be magical and I was determined to do everything I could to make it that way.

That is actually one of the big issues with going through something like this. Nobody truly understands what you are going through unless they have also gone through it. This is like nothing else you will ever experience. The range of emotions that go along with caring for a loved one as they travel the swift decline that is dementia is not for the faint of heart. There are many people that can simply not handle it. I choose not to judge them for that. I admit it was one of the most difficult things I have ever done in my life. I had one big reason to do it, one big reason that drove me on the worst, most heart-wrenching days, one big reason that I showed up and smiled and did every single thing I possibly could to bring joy to my mother and to be her very best advocate. That reason was love. She gave me life, the least I could do is take care of her for whatever time she has left on this earth. No sacrifice is really too big when you think of it this way. 

I have many scars from the journey with me mother. I have many bad memories. I have many sad memories. I also have joyous memories, though. I have moments that mean more to me than anything bad that I went though. Those moments, those are the reason that I kept on coming back, that I worked so hard to find things to stimulate my mother on visits, to exercise her brain and bring her joy. I have no regrets for these years with her. I have no regrets at all. I was present and I gave her every ounce of my love.

Once the TV was set up we put in a DVD and sat down with her to watch it. I chose one of her favorite old epic movies to put in. It was the afternoon, though, and her attention span was not quite there. She had started sundowning and there was no way she was going to pay attention to the movie. We stayed and talked for a while. She glanced at the movie off and on, but she wasn’t able to focus. She had enough stimulation for the day so we said out goodbyes soon afterwards, with the hopes that she would enjoy the movie once we were not there to distract her. It was always hard to say goodbye but I would be back the next day.

2015 – 05/19

I started doing some kitchen activities with my mom. I started bringing in supplies to make some simple goodies for the residents. I would work with my mom on putting them together and she would help serve the residents when the treats were done. 

On this particular day, my mother seemed more out of it than normal. They had modified her meds and I was concerned that they had not gotten the combination right. I brought it up to the nursing staff and they added a note to her chart to reduce the dosages on some of her meds so she could function better. 

I tried to put her condition out of my mind as I gave her a coffee and guided her into the kitchen area. She was excited to do another project together.

Today we were going to make strawberry shortcake. I sliced up strawberries at home the night before so they would be prepared. I brought some pound cake and some cool whip and some cups. 

 I tried being overly excited to boost up her mood. As we started she got more and more animated. She loved it. It was a challenge for her, but I guided her through the steps. Putting together the shortcake parfaits involved using a pattern. This is good exercise for the mind so the project was fun, tasty AND therapeutic!

We started out by arranging all the slices of pound cake on a sheet of parchment paper. Then I guided her as we sliced them into smaller chunks. 

Next, she helped add the pound cake pieces to the cups and added some strawberries to each one, then added the cool whip to the top. We worked side by side and I kept up a conversation with her the whole time. She got happier by the minute. She was thoroughly excited by the time she helped me pass the cups out to the residents who could eat them. I sat down with her after that and we talked a bit until she was tired. Then I told her I was going to head home but would be back the next day. She tried to come downstairs with me, which she did on a regular basis. I got in the habit of enlisting the help of the staff to distract her as I left. It was difficult but necessary.