Lizz Lewis is a current mother and former caregiver to her Mom who had Alzheimer’s. Lizz’s grandmother also had Alzheimer’s, so when the unfortunate diagnosis came, Lizz had already done research on it and knew exactly what to do and what was in store. We had the chance to interview Lizz and learn about her caregiving journey.
Tell us your caregiving story. When did it start?
My mom was diagnosed with Alzheimer’s in 2015. As it is for every person suffering from this awful disease, the diagnosis was a huge blow to her and our entire family. We had already been through this nightmare with her mom, my beautiful grandmother, so we had a good idea of what was in store for us.
My caregiving started with companionship at first while my dad continued to work. After I got my little kids on the school bus, I would make the 45-minute drive to their house most days and just “hang out” with her. These days were mostly amazing, with the occasional purse, keys or phone hunt and lots of help with the computer. As time went on, these days with my mom became more about caregiving as her cognition declined.
One day I was working out at the gym and my watch alerted me that my mom was calling. I always took her call, so I left my class and took the call. She informed me that she had started a pretty significant fire in her kitchen, she felt she had extinguished it but she was very shaken up and didn’t know what to do. Her housekeeper was there and was able to assure me the fire was out. I immediately left class and headed out to her house. Fortunately, when I arrived the fire was indeed out but my mom was very upset. She was very aware of what was happening to her brain and it was terrifying for her. She had set a throw rug on her gas fireplace and then later switched it on– the rug caught on fire.
My mom continued on a very consistent decline. Even though I saw her often, each day presented a new challenge. I remember the day she didn’t know what to do with her hair anymore, the day she couldn’t fasten her bra, the time she wore two completely different shoes, and finally the day she couldn’t dress herself at all. I always thought of myself as her guide through this journey. I helped her with any new challenge that would arise. It was always my first priority to make sure she went through it with as much grace and dignity as humanly possible. I had a chance to deal with each new cognitive loss as they happened on my drive home from her house. I kept a video journal which really helped me unload because the moment I got home, I had to be a mom.
One day I was driving my mom to a routine dental cleaning that was about an hour from her house. She saw a special dentist who took care of her dental fear. When we walked into the office hand in hand she was as happy as a clam. She introduced me by name to multiple people in the office as her daughter, as she always liked to do that when we were out and about. After her cleaning, with absolutely no medication of any kind, we left the office. It was like a switch flipped the moment we got outside. She looked at me with complete and total terror, I had never seen this look on my mom’s face in my life. I asked her what was wrong and she immediately broke down in tears and cried, she asked me who I was. I had worried about this day since the first moment I suspected my mom had Alzheimer’s but nothing could prepare my heart for the moment my mom didn’t recognize me anymore. I very calmly explained who I was and it took quite some time to get her in my car. She was very upset the entire ride home and asked lots of questions about me, and who she was. She was completely blank, it seemed her last memory was when she was little. My mom was never the same after this day. Many people wondered what could have happened in that dental chair to accelerate her decline so much– I still have no answers.
After much consideration with my dad and three sisters, we came to the very difficult decision to put my mom into a memory care facility. We could no longer meet her caregiving needs and she was a threat to her own safety at home. We worked with a wonderful company that helped us find the very best care facility in our area. We vetted many facilities and were able to place my mom in the very best one to fit her needs and ours.
I still visited daily when my kids were at school. Many days, she would not want me to leave and I would have to have a friend meet my kids at their bus stop. There was such a push and pull with being a caregiving daughter and a caregiving mother to my own children. She knew she wasn’t at home anymore and she was scared most of the time. My dad came and tucked her in every single night of the week, and he would stay until she was asleep. My mom also did not allow the staff to give her showers so I was her shower girl. This gave us an amazing opportunity to become familiar with each other again in this new relationship. She knew I was someone who loved her very much, but I had to go through every single visit exactly how we were related. I honestly don’t think this ever got easier. Having to tell your own mother who you are every single time you see her is pretty brutal.
One day something really amazing happened after she had been in memory care for about six months. She looked at me and remembered a nickname from when I was really little. Even I had not heard this name since I was very young, so this little spark of memory was a miracle. She called me that nickname every time I came after that and would even ask the memory care team to find me when I wasn’t there. Another unexplained part of this disease.
Then the pandemic hit and we were not allowed to visit her memory care. My three sisters, her sisters, her friends, my dad, and her grandchildren were devastated. Multiple times per week the memory care faculty would call me on FaceTime begging me to help them to get her to take her medication, shower, or even get dressed. My mom did not understand why no one was coming to see her anymore and she wanted answers! Trying to explain a global pandemic to my mother on FaceTime was a challenge that was not successful. She would tell me if I came there she would perform these tasks for the staff, but I wasn’t allowed. This was one of the most agonizing times in my entire life, to get these painful FaceTime calls from my confused and terrified mother. She thought she was in jail and couldn’t figure out why.
My family and I made the decision to take her out and move her and my dad in with my family. It would take a month to make this transition as we had to buy a bigger home with a room on the ground floor for her. Even though I was asked not to, I visited my mom at her window as often as I could. I still did her laundry and brought her favorite treats multiple times per week.
Once we got her home, I could not believe how different she was. The memory care staff had warned me she had a significant decline but it was alarming. She was scared and the new environment was a huge adjustment. We were fortunate enough to hire a caregiver to help, but very quickly she became combative with the caregiver. I watched my mom care for her mom while she struggled with Alzheimer’s and I knew having her in my home was the right thing to do. We just had to get into a new routine and help her as much as possible to adjust. She loved spending time with my kids and they were always able to calm her down, she also loved time on our porch swing. Music was also a lifesaver. Her favorite songs could bring her out of the worst moods.
Unfortunately, my mom’s disease progressed very fast after she moved in with us. Within a month or so she could no longer walk, so we had to get a wheelchair. She was unsafe in her bed, so we transitioned into a hospital bed. She needed help with all tasks, and I felt time was slipping away so fast. I didn’t think she would qualify but contacted hospice and in fact, she did qualify for full hospice care. Hospice was amazing and helped with baths, religious care, podiatry, and the list goes on and on. Hospice was a lifeline I didn’t even know that I needed.
About three months in, my entire family went out of town on a trip, including my dad. I was on my own with her with daytime help from caregivers. I had a video monitor in her room and started to notice her breathing seemed labored at night. This was very unusual. I called her nurse the next day to see if she would come out but she had been exposed to Covid so she could not. I just had to rely on my own instincts, which were telling me that my mom was dying. I called my family and they didn’t believe it. When they left she was fine, declined sure, but not dying. I knew on a Monday that her time was limited and I got all of her daughters, grandchildren and great-grandchildren to my house by Tuesday morning. Eleven minutes after the last grandchild arrived, my mom passed away with her entire family at her side.
She lived in my home for one hundred and five days. They were the most challenging days of my life. I watched my mom walk into my house and lose every single one of her abilities in a very short period of time. My mom had an incredibly strong spirit and I believe some part of her knew she was safe to go. She left on her terms.
What do you know now, that you wish you knew then?
The one thing I wish my family and I would have known was how important it is to make a long-term plan for your loved one suffering from Alzheimer’s disease. It was a secret that we had to keep from my mom for so long that even we weren’t allowed to talk about it with her. I wish we could have had the difficult conversations that needed to happen so we knew exactly what her end-of-life wishes were. When she received the diagnosis she was still cognitively able to make these decisions. As her family, we had to guess and we second-guessed ourselves the entire journey.
As a former caregiver, what resources did you wish were available/deem as necessary?
I wish more respite care was available to caregivers. It’s the most taxing job, physically, emotionally and spiritually. Caregivers need breaks! I also wish formal caregivers were covered by insurance, the cost was very exorbitant. I was shocked that hospice was available to us. I always thought hospice was for cancer or other terminal diseases. Hospice was a lifeline for me as a caregiver!
What did you do for self-care during your time as a caregiver?
It was always imperative for me to work out every day. Working out gave me the strength I needed mentally to deal with the awful blows that Alzheimer’s delivers on a daily basis. I also kept a video journal which enabled me to talk about all of these difficult topics and get them out.
How did you make it through the emotional hardships of caring for your sick mother?
It was the most brutal experience of my life watching my mom deteriorate from Alzheimer’s disease. I would like to say that I was super strong throughout the journey, but that just isn’t the case. I worked with a therapist in the later part of the journey and she gave me lots of coping techniques. I started an Instagram page, alz_you_need_is_love, and met so many amazing people going through the same thing and that saved my life!
What advice would you give to a new family caregiver?
I would tell any new caregiver that this is a marathon and not a sprint. Learn as much as you possibly can about Alzheimer’s disease and how it will impact your loved one. Enlist as many members of your family as possible to help you, and even make a schedule to hold others accountable. If you try and do it all alone you will burn out and be no use to yourself or anyone else. Also, take care of yourself! Eat healthy, exercise, have social interactions, and get as much sleep as possible.
What else would you like to share with fellow caregivers?
I love Mind What Matters, (a nonprofit that offers respite to caregivers), The Women’s Alzheimer’s Movement, and the amazing community I have on Instagram. I would highly recommend connecting to a social media group, it is the best to connect with people going through the same thing.
Thank you to Lizz for sharing her caregiving journey. We love how Lizz emphasizes finding and connecting with people who are going through the same hardships. She’s right, it can make all the difference! As Lizz mentions, respite is also incredibly valuable to caregivers. If you are a family caregiver, click here to find your local CRC to connect with resources and respite in your area!Share this post: