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.

                        

2015-06/18

Today I decided to bring in supplies for mini cupcakes. We used a box mix because she was having a real hard time with measuring cups. This was much easier for her to handle and she did a good job. She was so careful and focused when putting the batter in the little cups. It was good for her. It is very therapeutic to keep their manual dexterity as they progress through this disease. Having something detailed like this to do is great for dexterity. She was so happy through the whole thing. 

 

 

 

 

 

 

 

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.

 

2015-05/28


Every once in a while, my boyfriend at the time would come along with me on a visit. My mom still sat at the same table with the same people, and I had gotten close to all of them. I had many conversations with all of them at this point. Kris would sit there with me and they adored him. 

They were unable to watch dvd’s at this point. They had a VHS player but not a DVD player. Kris was donating one. They were very excited about it.  

Kris went over to the television to set it up for them. I had brought some special DVD’s for them to watch. I think Kris enjoyed having something like this to do. It was hard visiting. When someone hadn’t been there much it is even harder. The things I overlook can be shocking and depressing to people. 

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.

2015-05/26


  They did modify her meds, and over the next few days she improved. I had found a pair of her glasses when I was going through some boxes of her things. I brought them with me. She was excited to get them and put them on right away. She flipped through a magazine, picking out the words she was still able to read. She was proud of herself and I was proud of her too.

The activities director was a very happy guy. he always got the residents smiling. His excitement was contagious. He had taken a special liking to my mother. He involved her in as much as he could. He found projects for her and little jobs she could do.

At this point she thought she worked there. It was cute. She really enjoyed him a lot. One of the things she did every day was push the activity cart down the hall to the storage closet when everything was packed back up on it.

Marcos, the activities guy, was feeling especially playful this particular day and had found a sombrero somewhere. He got my mother to wear it for a picture. This was a huge thing, since my mother up to this point had refused to put anything on her head. They posed for a couple of photos together. It was a happy day and I will always remember it.  These are the days it is important to hold onto. Just seeing this picture always makes me smile. I am grateful for Marcos and for all that he did for my mother. 

 

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. 

 

 

 

 

2015-05/15



Lilacs were a favorite of my mother’s. I remember when I was growing up. She planted two small twigs in the ground. I remember thinking there was no way these would ever be lilacs, but they grew. Within a few years they became lush lilac bushes that would perfume the air each spring. I always loved looking at those blooms.

Many years later, after I had been out on my own for some time, my mother moved in with my stepdad. Not too long afterward, she decided to sell the house. She was not ready to lose her precious lilacs, though. She took them with her and replanted them at my stepdad’s house. They flourished there just as well as they had flourished at the old house. 

I remember the look my mom would get looking at them, the sparkle in her eyes, the smile. She did so truly love lilacs.

It was May and May is lilac season. This year my mother would be in the nursing home and unable to appreciate those magical blooms, though. It broke my heart. I ended up sneaking to my stepdad’s now vacant house and snipping some of the lilac blooms as well as a few other blooms from the yard to bring to her. It made me smile just remembering how she loved them.

I planned on bringing them to her at the nursing home. She might not remember how much she loved them, but I did and that counted for something, right?  I wanted to bring them to her, let her sniff their intoxicating scent, and maybe, even for a brief moment she might remember how much she loved them.

I brought them to her the next day. I’m not sure if she remembered or not. It was bittersweet. I vowed to myself if I ever have a home I would plant lilacs there in her memory. She is the reason those blooms in the spring always make me smile, so taken am I by the magic of their scent, of the delicate lilac petals. Their season is so quick, so fleeting, but there is something so special about that. I want to be able

 to experience that each spring, want to tend to the lilac bushes throughout the year for the beauty of those lovely spring blossoms glistening in the sunshine.    

2015-05/14


When the weather is nice, the nursing home sometimes has a cookout on the patio for the residents. I decided to bring my mom down and have a change of scenery. Fresh air was very nice. My stress level dropped a lot just being outside. Being inside all the time can take a toll. Some variety is really good.

We found a table a little out of the way so she wasn’t over-stimulated. She was a little confused because this was different than her normal schedule. I made it into a fun little adventure, though. I pointed out the green grass, some flowers nearby, the leaves in the trees. I pointed out the sun (even though she preferred the shade). She calmed down pretty soon and started to enjoy herself.

We stayed outside a long time. I sat and ate with her, helping her with her food. I answered endless questions, many of them repeated. I listened in seemingly rapt attention as she told stories that made no sense. It was nice. I was thinking that I would very much enjoy all the cookouts and would make sure my mom went to every one of them if I could.

Please try and introduce some variety in your loved one’s routine. It does help, and will help them to break out of some of the habits they develop when being on the same schedule every day. Yes, consistency is good, but as they say “variety is the spice of life” and that is true with dementia patients also. They will enjoy the normalcy of something as simple as this. It might spark some memories in them. It might also give you a moment to feel a little more like things are not so “clinical.”

 

2015-0511

By May of that year, I was entrenched in the routine. I was spending a lot of time with her, and I started thinking that it was going to be really important to me later to have some photos of the two of us together. I decided to make an effort to capture as many “selfies” as I could throughout the whole journey with her. I wanted to hold onto all that I could. I had started to see the other residents go down a path that I was very frightened of watching my other follow. I had started seeing them decline, bit by bit. Sometimes it felt easy to overlook it. Other times that just didn’t seem possible at all. There were many nights I cried just thinking of my mom having to go through that. I vowed to make her smile as much as possible.

I don’t think my mom had ever had a selfie before. It was confusing for her. At first she just looked at me because I was close to her. I prompted her to look at the phone and she first looked curiously at the image in front of her. I don’t know if she knew who she was. She did see me in that image though and I made a big deal of that. I would say things like, “Look at me in my phone. Isn’t that funny! Do you see that smile? I think that is one silly smile. Look at it. Don’t you think that is silly too?” This would elicit a smile much of the time, and would get her looking at the lens.

I’m sure she had no idea what I was doing, but that didn’t matter. I was preserving these memories for me. I was building a safety net for the future, for the darker days and for the inevitable days after I was forced to say good bye. 

If you have a loved one going through this, please try to capture the magic moments. You will thank yourself for it later. Yes, they are a shell of their former selves. Yes, they have no idea what’s going on, but you do know what’s going on. You are making your loved one smile. You are sharing a precious moment together. You will look back on those photos later and it will make you smile, even if it is through tears. These photos will become your prized possessions and they will help you bolster your strength when you need it. I am grateful every day that I took photos. I took copious amounts of photos, truth be told. I still look at them nostalgically. That smile on her face still warms my heart.

 

2015-04/24

There was a new guy in the group of people my mother was hanging out with at the nursing home. I didn’t particularly like the guy. It felt like he had a thing for my mother. He appeared to be hitting on her on a regular and very blatant basis. My mother was oblivious to the whole thing. I was very leery and kept a real close eye on things when I was there. I brought it up to the activities guy and to the nursing staff. I felt it was only right to voice my concerns. I wanted my mother to stay safe and she was not of sound mind at this point. She had no idea this guy was making advances toward her.  The staff assured me that it was fine. He was just overly friendly. They told me not to worry about it and promised that they would keep an eye on the situation when I was at work. 

I tried. I tried very hard to like the guy. I knew he also had brain issues. I tried to cut him some slack. I included him along with the others when I visited with my mom in the lounge area. I tried to make a point of conversing with him. He had gotten under my skin though and I couldn’t help my trepidation. I just did not trust the guy at all. Did I mention I was trying to keep an open mind? This went on for a while. He tried to cut in on my visits with her. He made me uncomfortable. He made passes at me. It was all just very wrong, but the staff was not handling him. It was not my place to do it. When I did chastise him it would elicit very negative responses and just make things worse. So I kept my mouth shut and observed. I was not happy at all.

It did not take long before I got a call at work. My mother and this man were found in his room, laying together on his bed. My mom was stripped down to her bra. The staff separated them but the guy was still there when I got to the nursing home that day. I had a long talk with the director of the facility. He acknowledged my concerns and agreed to move the man to the second floor so he would not have further interactions with my mother. I shudder to think what could have happened had I not been around to advocate for her. The level of supervision at the facility was lacking in a big way. It seemed like there was enough staff. It just seemed like they didn’t care enough to pay attention to what was going on.

On a regular basis when I would walk into the dining room there would be multiple residents at the tables and wandering around and there would be nobody there watching them. I started taking on that role when I was there. I started helping people to their seats, stopping people from doing things they weren’t supposed to be doing, separating people who were having disagreements, helping people who were about to fall out of their wheelchairs. This is not what I expected. I had placed my mom into the nursing home so that she would be safe, and now I was more worried about her than I already had been. I was a mess over this, and had not quite processed that phone call that I got. As a parent, if you get a call saying your child was caught with another student it is one thing. Getting a call that your parent was in a compromising position with someone is a whole other level. It really had my head spinning. This whole thing just kept getting more difficult. I was a mess and that day I sobbed in my car before I could leave. I was shaking as I left the facility. It was a nightmare that I was living though. This couldn’t be real. It was a nightmare and I wanted to wake up. I knew that was not the case, though. This was all very real. I just needed to somehow find some inner strength to muddle through it.