The Journey of Dementia

Holding my mom's hand on her final day

Follow along on my journey of dementia… from the very first stages all the way through to the end, I will include many thoughts, feelings and events, exactly as they happened. I hope that this will help others who are on their own journey of dementia navigate that journey a little easier. Please know that at any time you are welcome to reach out to me. I will answer each and every message I receive.

 

 

The Beginning

2012-05/12 –  On May 12, 2012, I saw my mom for the first time in a year or two. I instantly experienced shock. We had phone conversations, many phone conversations. I had kept in touch, and noticed a couple of things were “off” but I was in no way prepared for what I experienced when […]

Gut Instinct

2014-12/30 On December 30, 2014, after a nagging feeling that something was seriously wrong, I reached out to my mom. I needed to hear her voice, to know if she was ok. It ended up being a bad day. This is what I wrote in my journal:  I called my mom today. I have just […]

Diagnosis

2015-01/11 – I would like to think what happened next was a surprise but some of it truly wasn’t. On the afternoon of  January 11, 2015 I received a phone call from my stepdad’s daughter-in-law. I will never forget that call, never forget the tears flowing freely from my eyes as she told me that […]

The Next Step

2015-01/17 –  I spent all day every day in the hospital with my mom. The doctors were pressuring me very quickly about discharging her. I had learned that she had taken the car out to find the moon one night since it was “just so pretty” and my heart skipped a beat at the thought […]

Nursing Homes

  2015-01/18 –                        That night I had a long talk with someone in my hometown who is a liaison for this sort of thing. There were many tears and much encouragement. I felt much better about things after our long talk. The next morning […]

A Difficult Choice

2015-01/19 –  The final place was in West Newton. It was near an armory. It was adjacent to the Massachusetts Turnpike. It was called Golden Living. I found myself asking why these places always had such odd names. If I were to run a nursing home I would find a name reminiscent of beauty, compassion […]

The Next Chapter

2015 – 01/20 –  The next morning the sun rose in the sky like my world was not crashing down around me. Mothe Nature seemed oblivious to my pain. I gathered my wits about me the best I  could, quietly asking the sea to give me the strength I needed to make it through this […]

Settling In

2015-01/21 –  I called the nursing home the night before to be sure she was ok and they assured me that she was. The next morning I called again. I had told them that she wouldn’t eat much for breakfast except toast, and even then only if orange marmalade was on it. They told me […]

Our New Normal

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 […]

Big Changes Were Coming

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 […]

Mother Nature’s Wrath

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 […]

Was the Universe Against Me?

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 […]

Every Day is a Challenge

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 […]

A Nightmare of Paperwork

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, […]

No Longer A Daughter

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 […]

Everything Changes

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 […]

Coffee and Cannolis

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 […]

Look! A squirrel!

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 […]

Nursing Home Romance

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 […]

Selfies

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 […]

The Patio

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. […]

Lilacs

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 […]

Too Many Meds

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 […]

Buenas Dias

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, […]

TV Repairman

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 […]

Cookies!

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 […]

Cupcakes and Memories

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. […]

Parfaits and Puzzles

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 […]

The Beginning

Jan 01, 2021

Gut Instinct

Jan 02, 2021

Diagnosis

Jan 02, 2021

The Next Step

Jan 04, 2021

Nursing Homes

Jan 06, 2021

The Next Chapter

Jan 19, 2021

Settling In

Jan 22, 2021

Our New Normal

Jan 24, 2021

Look! A squirrel!

Feb 21, 2021

Selfies

Feb 24, 2021

The Patio

Feb 26, 2021

Lilacs

Feb 28, 2021

Too Many Meds

Mar 01, 2021

Buenas Dias

Mar 03, 2021

TV Repairman

Mar 05, 2021

Cookies!

Mar 07, 2021