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.    


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.”



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.



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.








My mom had made some friends at the nursing home. She always sat at the same table and the same people always sat with her. At this point she had decided I was her sister. In her mind she had never had children. The resident that originally she thought was my stepdad was now our father in her mind. She had started taking care of him. He was now going willingly and happily along with this delusion. I played along with it. What else could I do? 

When I would get there and say hello she would always say, “Look, it’s Daddy. You need to say hello.” So I would go over to him and give him a hug. He seemed to enjoy spending time with her. It was nice. There was another resident who sometimes spoke English and sometimes spoke Italian. He had owned a restaurant in the North End of Boston when he had come over from Italy in the 60’s. He was a wonderful guy. I would interact with all of them. 

Marcos, the activities director, had now bonded with my mom. She loved him now when she demanded I keep him away from her the first day she was at the nursing home. He gave her little jobs to do during the day. He gave her projects to work on. He involved her in projects he was doing. He gave her crafts and activities to do. She loved all of that and I loved him for engaging her like that and picking up on her strengths. 

My mom now had a series case of “Look! A squirrel!” syndrome at this point, though. It was very hard to follow her when she was talking, but the constantly getting distracted thing made it even harder. Everything made her look around. She wanted to know every single thing going on at any given time. It was exhausting. Perhaps there was a bit of over-stimulation going on. 

It seemed to be causing some anxiety in her and I was concerned about that so I spoke with the nursing staff about it and they said they would take a look at her meds and see what they could do. Hopefully they could do something. I wanted her to be comfortable and as happy as possible. 

Dealing with a dementia patient is similar to dealing with a toddler. I found myself utilizing all the tricks I used when parenting my children. It was working, too! I felt like maybe I was finally starting to adjust to this new life. I don’t know if anyone fully adjusts, but it felt like I was starting to come to terms with it. There were less days that I cried before being able to start my car, so that was progress. 



I had fallen into a routine of working, visiting till dinnertime and weekends spending the whole day with her. I would bring coffee from Dunkin Donuts with me every time and she would love it. She hardly ever finished her coffee but the simple act of holding the cup in her hands, of knowing the cup was there, was a comfort to her.

On this particular day I had found a bakery to get some Italian goodies. I brought cannolis with custard in them. These were her favorite and in the days before dementia they would have been out of the box immediately. Now, though, they sat in the box untouched. She was animated, she spoke a lot. I couldn’t understand any of it. Her thoughts were scattered and I could not follow the delusions. There were so many and she would switch back and forth between them until they were all jumbled together. I learned to just nod my head and say simple things like “yes,” “no,” and “wow.” This worked. There is no real conversation in this situation because you don’t know what to say that might be relevant to her current delusion. She never knew I didn’t understand what she was talking about. Every once in a while there would be something I could discern might be from some little shred of reality but most of it was just ramblings.

She went on and on and the cannolis sat uneaten. The coffee sat in the cup getting cold. I sat across from her smiling, though, because she looked happy. She was completely unaware just how sick she was. Her ignorance was bliss. 
I had also brought her some magazines. She couldn’t really read much but she liked looking at the pictures. My boss was an avid scuba diver and would give me her scuba magazines after she read them. I had subscriptions to some other magazines that I would bring in for my mom too. She would look through them while I was there and then ferret them away into her bureau when I was gone. She had become a pack rat. I suppose she had always been a pack rat, but this was different. In her purse, which she insisted on carrying around with her in the nursing home, I would see things like forks and spoons. I would quietly remove them when she wasn’t looking. 

This was what our visits were like. I cherished the time, though, and decided that I needed to start capturing it in pictures and video. I was going to need these memories to carry me through and to remember once she was gone. I tried not to think about that. I tried not to think about how short a time my grandmother was in a nursing home (also with dementia) before her heart just stopped one day and she was gone. It was just over a year. I hoped I would have at least a year with my mom. I vowed to spend as much time with her as I could. I silently prayed that she would not end up catatonic like some of the residents. I somehow got through. Like putting one foot in front of the other I got through one day before the next. This is how it went. I can’t say I did not shed many tears. I shed lots of them. 

Every day when I would get up to leave she would try to come with me. She would say things like “Yes, it’s time to go. Let’s go. I need to get to the house. And I need to find my car. I have to get to California and drive over the Golden Gate Bridge.” She was obsessed with it. Since I was now driving her car I was afraid to take her out. I was scared what it would do to her to see me driving her car and if she would get angry and demand to drive it herself, which she could obviously no longer do. It broke my heart anew every day when I had to say good bye and leave her there. I always left with a hug, a kiss, an I love you and a promise that I would be back before she knew it. It was  hard, SO hard!


2015 – 02/20 – 

Today was the day I moved. I left behind my dream place to move into the city to be closer to my mom and work. It was heart-wrenching to go. I had built a life for myself in Rockport. It was home. I was part of this wonderful seaside village and I had to let it all go. The amount of sacrifice already was overwhelming and it just kept mounting. I felt like I was getting buried under the weight of it all. Luckily, I was moving to an apartment that belonged to someone very close to me. I would not be all alone in the city, but I would not be able to walk out my door onto the dock, would not be able to see the sun rise above the bay in the morning. I was heartbroken. This picture was shot right before I left, tears streaming down my face.


This was my apartment before I packed it up. Now all my possessions were in boxes, most of my furniture sold or given away, my apartment would just be a shell when I left. This was one of the hardest days of all. I was so happy in Rockport. I had so many wonderful memories, so many friends, I had a purpose there and I was saying goodbye to all of it.


All too soon my boxes were packed in the truck and I was on my way to the city, to a multitude of changes I wasn’t sure I was ready for. My cat who I had for such a long time, who had been with me through so much over the years, was now at my son’s house. She wasn’t allowed at the apartment in the city. It was just one more huge loss for me. I’m crying now remembering it all. Nothing would ever be the same again.

I garnered my strength and somehow got on the road and drove out of town, on to a new life. I was not totally prepared for what awaited me. I moved all my boxes up the stairs, they were all loaded into the kitchen along with the small bit of furniture I had brought. Then it was time to see my new room. This was much more of a shock than I expected. The room was small, more of a hall than a room. The walls were painted dark gray, the room felt cold and lonely. It was more of a cave than a room and it felt like a cell. My full size futon would not fit the width of the room, so it was squeezed up on the edges. I didn’t know how I was going to do this, didn’t know how to go from a bright, sunny apartment on the ocean to a cold, dark, dreary room in the middle of the concrete and noise of the inner city.

I begged to paint the room. My life was already cold and dark enough at this point. I could not live in a room that mirrored that. Home needed to be a place for respite and rejuvenation, a place to heal and build my strength back up to deal with the day-to-day which was overwhelming at this point. I was grateful it was ok for me to paint because that room was SO depressing I couldn’t stand it. I wasted no time, folded up furniture that there was no space to move and I got to work. I needed to make this room mine and this darkness was the opposite of me. Thank goodness I could make that change because I feel if it was left this way I would have called down a dark abyss I might never have escaped.

I chose a very bright light sandy color that I hoped would make the space feel bigger and make it feel more relaxing and hopeful and less dreary and depressing. When the painting was done, I set things up a little differently and it felt much better than it did. It was still a tiny space but it felt much more livable than the cave it formerly was. 

The room was still tiny, and the futon still took up the whole room when it was open, but at least when it was in there lengthwise the mattress wasn’t squished up at the ends, which was very uncomfortable. The room was looking better already and I was starting to feel more positive about it. Once my things were set up better, I felt like maybe it would be more livable. It definitely was a DRASTIC difference having bright paint on the walls!

When the futon was folded up there was space to walk and my mind had started to ease. My tension was starting to lift a bit and I was feeling better about this move. It was a huge change so stress was expected. I wasn’t used to all the constant noise outside. The traffic was never-ending, people talking loudly, yelling, honking, buses driving by, it was all sounds that I never heard in Rockport. I was hoping I would get used to it in time. The window was nice in the room and I think that helped it a lot. There was constant light coming through. 

It wasn’t long before I did away with the futon altogether and built a storage bed for myself that was much more functional for the room. There was an attached area that was possibly a walk-in closet at one time. I made that into my office and storage space. The rest of my things were in a rented storage bin down the street. There was no room for it and it was all stuff that I wasn’t ready to let go of. The storage bin had the added benefit of having space to put whatever I got when I cleaned out my mother’s house as well, so it was worth it. 






When I came in to visit my mom I said hello and gave her a hug. She was always sitting at the table so I handed her a coffee as I sat down. She was lively and in conversation of sorts with the other residents at the table. She was talking to one of them and said, “You know my sister, right?” I looked at her, very confused, and she looked back at me and said, “Yes, this is my sister. This is Demi.” It took every ounce of my self control to hold back the tears. In a single instant my entire existence had been erased. 

That was one of the more difficult moments of this whole journey. The gravity of it didn’t settle in until later that day, since I had to put on a cheerful front in front of my mother and go along with the delusion. The saving grace is that she was happier to see me. There were no snide remarks on this visit. I was just going to have to get used to this, or perhaps I would be her daughter again on the next visit. There was no way to know. I had to go into each visit with no expectations because there was no way to predict what I would walk into.

This day weighed heavily on me. I had a harder time than usual focusing and when I said goodbye, the elevator door barely closed before the tears started to fall. I sat in my car in the parking lot afterwards and sobbed. I was lost, my heart torn in two. How was I going to deal with this. Here I was working so hard to help her and she decided I wasn’t even myself anymore. She had literally wiped me out of existence with just a few words. 

After the initial shock, which carried through the whole night, I somehow gathered myself together to visit her the following day. I went along with the delusion. I wasn’t able to call her Ma anymore, she wasn’t even Kay anymore, which she had been called as far back as I remember. She was now Cathy. So I had to go along with it. Calling my mother Cathy was very hard because it felt disrespectful, but what choice did I have? 


2015-02/02 – 

Added to the emotional aspect of all of this, I was the one dealing with all of the paperwork. I was in the process of establishing guardianship with the court. They required extensive paperwork and procedures. I was not able to afford an attorney so I was handling it all on my own, which made it that much more difficult.

The nursing home needed all of her insurance information. I had called her former employer who had been providing her retirement benefits.  They were unable to provide me with detailed information until the guardianship was in place but gave me information on the company that would handle any long term care coverage. Her current coverage would be ending very soon since it was a standard health plan and only covered a short term stay at the nursing home.

Nursing homes are very expensive, and it is not easy to navigate all the bumps in the road when you are responsible for someone’s care. If she did have long term care coverage then that would be able to kick in as soon as her short term care coverage was over. If she did not have long term care coverage then I would be responsible for her care out of pocket until I could get her qualified for state coverage. This was all a huge nightmare and I felt like I was drowning under the pressure. The mother I had known my whole life was gone and in her place was this other person who looked somewhat the same but was not the same at the same time. 

The weight on me was mounting. I felt like I was drowning. The only saving grace is that I had found a job that was not far from the nursing home. My boyfriend at the time had a spare room in his apartment which he offered to me. We were not really at the point in our relationship where we should be living together but I was in a really rough situation and his roommate was moving out so the room would be available. I made the hard decision. I would be leaving my home, my dream apartment that was my serenity at the end of the day. The decisions had to be made though, the sacrifices were necessary. I needed to look out for my mother’s well-being and the only way I was going to be able to sanely give her my time is by living closer to her than I was. I cried many tears.




2015-01/30 – 

I got on the train on the 29th, and took it and another train and a bus to get to the nursing home. It was hard to figure out the schedules and make sure I was going to get the connecting transportation, but I did it. It was costing me nearly $20 each way but I got there and I saw her. She seemed happy to see me, and we had a nice visit. She had made a couple of friends there at this point  and had now decided that she liked the activities director she hated so much when she had first arrived. He involved her and gave her tasks to do through the day. It helped her a lot when she felt useful. I was relieved. She was getting cared for.

When we were walking toward her room she said ‘Sonnie’s here, you know’. I said ‘oh really?’ She said ‘yes, he’s in the room across the hall from me. They just brought him in yesterday. I’ll show you.’ So she poked her head in across the hall and said, “his eyes are closed he must be sleeping.” I looked in and there is the guy she was concerned about at an earlier visit, laying down sleeping. Now she was calling him Sonnie (Sonnie is my stepdad). Made me sad. It of course wasn’t him. So as we were talking the door across the hall gets closed and she said they must be giving him a shot. When the door opens she goes to the door, concerned, and asks him if he’s ok. I don’t hear his response. She comes back in. He goes to leave his room and she says, ‘look who’s here… It’s my daughter, Angela. Remember her?’ And he proceeds to tell her to leave him alone, to stop talking to him, that he doesn’t want to talk to her. He walked down the hall and she said, ‘Well when I get to go home, if he doesn’t want me there I will pack my stuff into the car and find a place of my own. That’s the way it will be’. Oh my god it killed me! I want her to have that beautiful memory of the loving exchange they had in the hospital, the tender words, the loving expressions, the caresses and kisses. I didn’t want her to have this delusion, this anger, this feeling like she isn’t wanted by him anymore. It was so awful. I’m crying again just thinking about it.

On the 30th I went to my mother’s house. It was the first time I had been there since all of this had happened and it was very emotional. Her and my stepdad would never return to this place. I had memories there, so many memories. It was really hard to be back there. I met with my stepdad’s daughter-in-law, who had the keys to the house. She had some financial paperwork for me and we found the car keys. 

I felt guilty getting into my mother’s car. I felt like I was doing something wrong, invading her privacy in some way. In reality I wasn’t, though. The car would just be left to rot if I did not take it, since she was no longer going to be able to use it. And there was some comfort it brought being in the seat she had sat in. I had so many jumbled up emotions. It made things much more difficult. I was getting through it all as best I could, though, and I now had transportation again to see my mom without having to relay on the public transportation schedules.

My visits that weekend were hard. My mom thought that one of the other residents was my stepdad. She insisted on taking care of him. It was hard to watch and not remind her that it wasn’t my stepdad. In her state it is much better to just go along with the current delusion. It only causes confusion and agitation to remind a dementia patient of these things. They are unaware and it is best to just keep things calm and happy for them.