2015-03/28 

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. 

 

2015-03/22

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. 

                         

 

 

 

2015-02/03

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. 

 

 

2015-01/29 – 

It seemed as I could not catch a break. I was finally able to get out of my town after the storms. I got in my car, got ready to head to the nursing home and my transmission let go. My car was undriveable. I was going to have to find another way to get to the nursing home. I gathered my wits about me as best I could and did some research. There was a commuter rail train that ran to Boston from my house. If I could figure out how to get to the nursing home from the train I could go to see her the following day. It was the only way I was gong to get down there and it was not going to be inexpensive. 

I had also started looking for a part time job, something that would allow me the opportunity to spend time with my mother but would be less time-consuming than running my business. All the jobs I found seemed to be near Boston so this was becoming more challenging by the day. I was starting to feel defeated. I was anxious to see my mother in person and not just hear about how she was doing through phone calls to the nursing home. My frustration level was mounting. 

I had an idea, though. My mother’s car was just sitting in her driveway unused. I decided that it would be best to stop by there on my travels to the nursing home so that I could pick it up and use that as transportation for the time being, so I would more easily be able to visit with her.

I was feeling along in my struggles. I had no real support system at the time and nobody to talk to that really understood what I was going through. It was really hard and I felt like I was going to break. At the same time I knew I had to stay strong though. My mother needed me and I was all she had. I needed to be there for her and make sure she was taken care of. I had to put aside my fears and forge onward as best I could.

 

 

 

2015-01/28 – 

I felt like Mother Nature was releasing her fury right alongside the myriad of feelings churning inside of me.

I could not get to the nursing home. Multiple major snow events in mid to late January of 2015, including a huge blizzard with 95mph winds and over three feet of snow, halted everything on Cape Ann. After being pounded with more and more snow, to the depths of over 100 inches, the roads were closed to all but emergency personnel, a state of emergency was declared and people hunkered down in their homes to wait out blizzard after blizzard. It was a winter for the history books. I felt trapped. I felt guilty for not being able to get to my mom. I felt depressed and angry and frustrated and so many other emotions all at once. I wasn’t able to leave. The National Guard had to be called to help with snow removal since there was no place left to put it. 

The unfairness of it all was getting to me. My heart and mind were in turmoil. I was sacrificing so many pieces of the life I had worked so hard to build. I felt guilty every time those thoughts came into my head. My mother was dealing with something so much bigger. As her daughter, it was the least I could do to make sure she was taken care of and to spend as much time with her as I could. Being stranded at home so far away with no way to get to her was killing me. Massachusetts was at a stand still. All I could do was to hope I could find a way to get to her soon. I reached out on a couple of online support groups I had joined because I was in desperate need of some emotional support. I decided that no matter what, I would get out the next day and get down to see my mom.

2015-01/24 –

Changes were coming. They were difficult ones. Mother Nature had rained down on me with all her fury and pushed some major decision-making. The snow kept coming. It was overwhelming. I lived at the sea where the weather was more temperate and the snowfall was minimal. This particular month was the worst my area had seen in decades. 

I drive an old car and could not get down to the nursing home. It was just not safe. I had a friend who lived closer to where the nursing home was, though, who had offered me a room. We had a still budding relationship and I don’t think either of us were ready to move on to the living together stage, but there were not many choices.

 

 

“Mother Nature was not smiling down on me. She was raging.”

I was going to have to say good bye to my idyllic life by the sea. I was going to have to say good bye to waking up to the seagulls crooning at the harbor right outside my windows. I was going to have to say good bye to weekly dinners with my son who had just moved out two months before that.  I was going to have to say good bye to the photo studio I had worked so hard to build. I was going to have to say good bye to two businesses there and I was going to have to say good bye to so many friends I loved dearly.

It was simply too hard to get to the nursing home, though. My mother deserved to have a loved one with her on a consistent basis. I was the only one to do it so I needed to swallow my pain, ignore my breaking heart and move on to a life in the city. The decision was not one that came easily. It came with many tears and many hours of soul-searching. 

2015-01/22 – 

I could not spend another day away from the nursing home so I headed out that morning to go see my mom. She looked much better than she had when she first got there, which was really great to see.  When I got there she was holding a doll and I think she believed it was a real baby. It was giving her great comfort.

She was very talkative, but it was hard to follow anything she said. Her thoughts were scattered and much of it made no sense. She would bounce around from subject to subject and I started just going along with whatever she was saying. There was no point in correcting her. It would only make her agitated and for once she was not sniping at me as much as she had up until this point.

During the conversation she mentioned my “father.” To this day I am not sure who she meant. She could have meant my stepdad, or she could have meant my biological father, who had not been a part of her life for quite some time. She said that he had stopped by, though, and had told her he had some things to do. This was obviously a delusion. 

I had brought coffee with me and some donuts from Dunkin Donuts down the street. She loved the coffee but was reluctant to eat the donuts. It was very hard to get her to eat, which was probably why she had lost so much weight in the first place. 

We went down to her room during our visit and a gentleman from the room across the hall came to the doorway. Her face immediately changed. She looked at him with concern, asking if he was ok. She offered to help him. He asked her to leave him alone. She pushed the issue and insisted on helping to get him back to bed. He got more agitated and raised his voice asking her again to leave him alone. She was visibly upset. I motioned for one of the aides to come over and help with the situation. The aide helped me get them separated and I talked her into going back to the dining room with me. She insisted that my stepdad needed her but I told her he was ok and that the nurse was getting him back to sleep. This man was of course not my stepdad. In her mind, for some reason, she thought he was and that he needed her. This was going to be challenging.

Soon it was time for me to head back home. This was always the hardest part of the visits. I hated having to leave her and she always tried to leave with me. I reached over to touch her hand and told her I had to get back to the house. She said, “That’s ok.” and I was hopeful. I told her I would be back to see her the next day. She told me that would be great. Then I got up to head over to the elevators and she got up and followed me. The worst part of having to wait for an elevator is that she had a lot of time to follow me there. The doors opened and I told her I would be back soon. She nodded and then tried to follow me into the elevator. I told her she had to stay and reminded her that I would be back to see her again soon. She said, “Yes, I know. Let’s go home now.” It was like a merry go round. The activities director noticed my distress and came over. He sidetracked her with something he “just needed her help with.” It worked! Thank goodness! I would have to start getting more creative with my departures. 

Reading and learning about this disease is essential for the smoothest journey between you and your loved one. Here is a book you could try,