You are not alone

Help Grandma Remember is a simple story of a loved one with dementia. The story is about helping grandma remember and to generate conversation between children and those who love and care for them.

A Closing Message is for the adults who are wondering about how to care for their loved one.

A Closing Message

My Struggle with my Mom's Dementia

My Aunt Judy wrote the following unedited message.

I was blessed with a wonderful mother. When she was diagnosed with dementia, I was sad, but so often, I hear people say that dementia stole their loved one. I never felt like I had lost my wonderful mother throughout her struggles with dementia. At first, we were able to keep mom in her home as she lived in the same neighborhood and just around the corner from us. When it became evident that mom needed more care because of her wondering outside at night and thinking people were entering her home and stealing her belongings, I struggled with whether I should leave my job of 20-years to care for her in our home or if we wanted to put her in an assisted-living facility. After having assessments done, meeting with our family physician, touring many facilities, I made the hard decision to place my mother in a memory care community, Kingston at Dupont. It was a clean, wonderful facility and I liked that there were also Kingston facilities to move mom to as her health declined and she needed additional care or financially needed a facility that accepted Medicaid. It was not an easy decision as my mother did not want to leave her home, but we knew it was not safe for her to live by herself and even if we brought her to our home, how would we keep her safe.

When we arrived at Kingston, mom did not want to get out of the car, but the wonderful staff coached her inside and got her involved in activities. She had a very nice bedroom and bath suite which we had furnished with her favorite things from home. We visited often, but I found that I needed to have someone with me as when I went by myself she was very angry with me. One of the best things I was told by a nurse who had been thru this with her mother was that when my mom started yelling at me, I needed to tell her that “I see this is not a good time to visit” and immediately leave.

Many times I sat in my car in the parking lot and cried. As time went on, I realized how much she needed the care. As we would walk around the facility with mom, she would notice new things such as the beauty shop where she got her hair done each week was noticed by her as “new” as we walked by each time, the dining room that she ate in each day was new each day. She did love all the activities…music, dancing, games and the activity director Camille took the residents on many bus trips to covered bridges, zoos, parks, and plays.

Mom was not forgotten once she was placed in assisted living. We visited and spoke with staff often. We still took mom to her favorite restaurants; she came to family dinners in our home; we took her to Wabash to visit her sisters, holidays were always spent with us. I prayed to God that I would make the right and best decisions for mom. I found that as her dementia worsened and her finances ran out, she also needed additional health care. As we moved mom from assisted care to a Kingston skilled care facility that accepted Medicaid, I worried that she would be disoriented with the move. Believe it or not, she did not even realize it was a different facility. We were blessed again with a wonderful, caring staff at this Kingston facility that treated mom with respect and love.

We were blessed that mom was a happy person and was not a flight risk. I many times felt guilty about not keeping mom in our home, but in conversations with our family physician she always cautioned me that so often she sees caregivers suffering physically and mentally from 24-hour care of a loved one.

In the midst of this, my husband suffered a massive stroke and I was so glad that I knew I had my mom placed where she was safe and well taken care of while I was dealing with my husband’s health crisis and recovery.

After living with dementia for 13 years, my mom suffered a massive stroke at 95-year old and passed away 2 days later. I loved my mom, and it was an honor to care for her.

Don’t get me wrong there were difficult times, one time when she was ill and had to be admitted to the hospital she was screaming at us that we were trying to kill her and stealing all her stuff in her confusion. I struggled often with guilt, with not knowing what the best course of action might be, but I put my trust in God early on and took my concerns to Him in prayer.

Many people talk about losing their loved ones through dementia, I honestly never felt like I lost my mom. She was still my mom. I still loved her and she loved me. She still was an important part of our family. We did fun things. Through her eyes I noticed things that in my busy life, I didn’t take time to notice. On our trips to Wabash to see her sisters, she would notice the beauty of the green grass, the wildflowers along the side of road, the blue sky, and the shapes of the clouds. We knew she would not even realize tomorrow that she had had a wonderful visit with her sisters or that we even made the trip, but she was happy in the moment. Not always did she know who I was and sometimes called me by the name of one of her sisters, but she was always happy someone visited and what did it matter that she didn’t know it was me. My mom lives on in heart, and I think of her every day and miss her.

Dementia changed my mom…she did not know things, she did not remember things, she was confused at times, she repeated herself over and over again, but she was still my mom who I cared for deeply. To those with a loved one being diagnosed with dementia, I would suggest you plan as soon as you can for the future decline.

As a parent ages, seek out an elder attorney who can help you obtain the necessary documents which will be needed to adequately take care of your loved one’s needs: health care, financial, and power of attorney while your loved one can still sign the documents for themselves. Seek medical assessment and advice. Educate yourself on dementia through workshops and support forums; find resources available through organizations and the internet, read, read, read!

For you to be able to take care of your loved one, you need to take care of yourself. Surround yourself with friends and family for support.

Cherish your time with your loved one.