My Journey with Dementia & Resources

Written By Stacy Crawford

If you had asked me five years ago if I thought things would have turned out as they are now, my resounding answer would have been “NO”. 

In October of 2017, my father passed away from lung cancer. I frequently flew to Florida to help care for him and was able to provide hospice care for him, with dear friends, until his death. Much of my time with Dad in those final days were spent trying to get medical interventions for my Mom. 

Dad and I sought help for Mom, who was clearly in the throes of alcoholism, for at least a year prior to my Dad’s death. Her long-time physician was not cooperative and refused to believe my Mom was an alcoholic or had memory issues. Many others in my parent’s circle didn’t believe that my Mom was raging behind doors. 

As an only child and trained counselor, I had tried all of the heroic interventions and none of them worked. Whether Mom was actively drinking or not, she never remembered the conversations we had - though they left me gutted and emotionally exhausted.

The night my Father passed away, my Mother had a strange response. She was devoid of all emotion and completely stoic. She later couldn’t remember how he had died. She began to recount the somber moments of their relationship but didn’t shed any tears. I chalked it all up to shock and grief.

Throughout my Dad’s cancer journey, there were times when neither of my parents could tell me what the doctor had said in appointments they had earlier in the day. Mom couldn’t remember whether Dad had taken his meds most days. Dad grew worried that Mom was overdosing him. Her behavior was unpredictable and angry. I made multiple trips from Minnesota to Florida because Dad feared being alone with Mom.

When I asked my Dad if he thought Mom had memory issues, he always said no. She had begun “looping” on topics but that had been going on for years. She loved talking about her dogs and cleaning the house. Occasionally, she spoke of books she had read or experiences in the neighborhood. The topics of conversation began to narrow severely when my Dad became ill.

Once I left Florida, after the small memorial service, it became clear that Mom had a myriad of health issues happening. She and her friends shared experiences of her “speaking in tongues” (as Mom called it) where she was in a fugue state and then began saying nonsensical things and shaking. I suspected she was having seizures.

So many odd things happened in between my visits. Mom was seen with large lumps and bruises on her face and, when asked what happened, she said the neighbor hit her on the head with a frying pan. She reported to me that strangers were living in her house and that my Dad was at the house. Mom had stopped opening her mail. She was getting lost in her neighborhood. Neighbors called me nearly every day to report odd behavior. At one point, Mom drove her car through the garage wall and into the dining room (likely due to a seizure). Mom had lost more than 50 pounds. She couldn’t remember when or what she had eaten or how to cook. She had previously been a gourmet cook. She now purchased cases of chili and frozen pizza.

Eventually, though not without angry demonstrations, I was able to get her diagnosed by a neurologist with Cognitive Decline, Seizure Disorder, and Alcoholism. I was able to get 24/7 care for her in her home. I have years of stories about the challenges during those times. For example, in one week Mom bought three air conditioners. 

As Mom’s money began to run low and her home needed expensive repairs, I worried about how I would transition her to a facility. I tried, without success, to move her to Minnesota in 2019. Her caregivers sabotaged the plan. 

In January of 2021, my son Mason, sustained an injury skiing that left him paralyzed from the waist down. Our family moved to Colorado for his rehabilitation at Craig Hospital. To follow Mason’s story on social media, search for Mason Branstrator. Due to my Mom’s confusion, I did not tell her he was injured or that we had moved to Colorado.

Not long after this, my Mom became ill from a UTI and kidney infection. After her hospital stay, I transferred her to a small memory care facility not far from her home. With the help of dear friends and a trusted psychiatrist, I had support to help her make that transition. 

Mind you, the physician who was releasing her from the hospital didn’t realize she had dementia and argued with me that I was making a mistake not to place her in a facility with hundreds of units so that she could receive 4 to 5 hours of PT a day. The facility never returned my calls. I went against medical advice by sending her to the smaller home-style facility.

Mom’s new home had some challenges, but she finally settled in. I was able to visit her many times. She appeared mostly happy but confused about why she couldn’t go home. In the end, she was one of the only “verbal” patients at the facility.

In March of 2022 I learned that the facility was being investigated for several allegations because the county adult protection unit called me. I knew I needed to find a new home for my Mom. 

In what I called “Operation Hurricane” my dear friends and I were able to extract my Mom from the facility without warning. A day later, Mom and we jumped into a rented van, with her belongings packed in the back, to drive north to Minnesota. 

The trip took us four days and, at times, it was the most joyous and also the most stressful trip I have ever experienced. We successfully arrived at Beehive Homes in Duluth, Minnesota in early April. We adorned Mom’s new space with some of the comforts of her home in a way that brought familiarity. She only packed up her belongings one or two times this time. Finally, she settled in. 

Now at each visit with my Mom, she tells me what a beautiful and amazing place she lives in. She still worries that she may not be able to stay there. She wants to see her parents and wonders why they don’t contact her. She isn’t always certain who my Dad is or that she was married to him or where he is now. 

It is important for me to share our story with you and others. The journey of dementia (an umbrella term) or Alzheimer’s is full of challenges. And yet, there is hope. There are also resources. 

Some of the most valuable resources include:

  • The Alzheimer’s Helpline - these are trained people who answer calls 24/7. They have supported me through tears and frustration. They offer follow-up resources. Please consider calling them.

  • The Dementia Doc YouTube videos. Dr. Miguel Rivera was my Mom’s dear Psychiatrist in Florida

Other important tips:

  • Stop arguing. In the early stages with my Mom, I didn’t know she had dementia. She argued about everything and became very combative. I learned not to engage. Our loved ones don’t remember the argument, but they often hold on to the charged emotional state. Arguing is exhausting for all.

  • Small things, like doctors or dentist appointments can cause a lot of anxiety for your loved one. We don’t need to tell them with a lot of advanced notice that they are happening.

  • Stay in the present moment. Your loved one will likely not remember moment to moment, but they are in the present at this moment. As a long-term meditation practitioner, I learned the most about mindfulness from my Mom.

  • Therapeutic fibs can be your friend. As a caregiver, I view my role as one to keep my Mom as happy and stress-free as possible. If I had told her that I was emptying her house and putting it on the market, she would have exploded. My Mom didn’t know she owned a house at the time I sold it. I also had legal guardianship in place in the state of Florida to do so.

  • Consider installing cameras in your loved one’s home. I did this at a time when Mom had 24/7 caregivers in her home. I asked the agency permission and was up front with them. The cameras safely guarded my Mom and the caregivers. I was able to see people coming to the front door to sell her things (which happened often) and I spoke to the ambulance personnel through the cameras when she was ill.

  • Please don’t repetitively explain to your loved one that they have dementia. They won’t remember and it causes distress for all parties.

  • Get legal paperwork in order as soon as possible. I am POA (Power of Attorney) and Health Care POA for my Mom. The paperwork for that is quick, easy, and affordable. I am also a Guardian for my Mom. I first filed in the state of Florida and then transferred the case to Minnesota. This legal status allowed me to move my Mom and have her admitted to care facilities. The Guardianship process can take time and is more costly than Power of Attorney. Please discuss this with an elder law attorney.

  • Round up any important information or paperwork you need ASAP. When my Mom lived in her home in Florida and went into her room to shower, I quickly went through her files. She no longer remembered any information about her finances or her long-term care policy.

  • Seek Support. Finding others who understand your situation or simply DO NOT give you advice, yet listen to what is on your heart is powerful. It was frustrating to me (and minimizing) when people offer their logical advice to help your loved one remember or navigate the situation. There is no logic in dementia and that can sometimes be one of the most frustrating pieces.

  • Please know that not all facilities are created equal. The Beehive Home in Duluth, Minnesota is like no other place. My Mom is thriving more now than at any other time in her life. Social stimulation and laughter is one of the best medicines.

  • Hire additional resources as needed. In Florida I hired a concierge psychiatrist. At first I was uneasy about it, but it turned out to be one of the best decisions I made. In fact, we were able to keep Mom out of the psychiatric hospital by working with the doctor directly. Please find Dr. Miguel Rivera (the Dementia Doc’s information above). 

  • Remember you are stronger than you think. 



Stacy Crawford
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