Caring For My Mom With Dementia
“Blessed is the best word to describe this journey I am on with my mom, Linda.
My name is Patti, and I have the amazing opportunity to be my mom’s full-time care partner. She has mid-late stage dementia and type 1 diabetes, which as you can imagine is quite the combination and requires 24/7 care. I have been caring for her full-time for the last two years, and she moved in with my husband and me a year and a half ago.
I use the term ‘care partner’ instead of caregiver to describe our caring relationship because that’s what it is: a PARTNERSHIP. It’s a relationship with give and take. It is filled with me giving care to her, but her equally giving back to this partnership. Caregiver to me means I am the one ‘doing’ all the work, but in reality, we are both giving and taking in this relationship.
My mom and I have always had a wonderful relationship. I always felt so lucky that she adopted me and raised me, so I feel like this is just a truly special opportunity to give back the love she gave me. She was the best mom, sister, daughter, wife, and friend. She loved with her whole heart, and she still does. Even though she doesn’t have the words to communicate her love, she just radiates love and joy through her smile and joyful demeanor.
Noticing The First Signs Of Dementia
We first started to notice something was going on 7 years ago when she was forgetting to take her insulin and was struggling to manage something she had done a beautiful job managing for 50+ years. In addition, she was the one who ran the household. She paid the bills, she managed finances, and she kept everything together perfectly. We started to notice that my parents were receiving late bill notices, and my mom was struggling to know how to pay bills independently. She was always a super social person, and we noticed that she was withdrawing from social situations more. She was also just a lot sadder and she cried easier. You could tell that she felt bad for her loss of independence, and that broke all of our hearts, but especially mine. I was watching my role model and the person who taught me everything beginning to lose pieces of herself right in front of our eyes.
It is one thing to grieve someone when they are gone, and it is another thing to grieve your best friend sitting right next to you. I didn’t fully understand the journey that we would later go on, but at the time, I was angry and sad. I got engaged 6 months after her diagnosis, and I selfishly was so upset that my mom wouldn’t get to help me plan the wedding we always dreamed about. Involving her in the wedding things took lots of planning and modifications. I watched my best friend’s mom’s help plan, dress shop, throw bridal showers, and support the day of. My nom barely got to stay at my wedding for more than two hours, and we didn’t get to have the mother-daughter experience we either had hoped for. It was like I had already lost my mom.
My dad (who is seven years her elder) had been caring for my mom from the start of her diagnosis. It started to become very apparent that this was no longer a positive situation for either of them, and that is when I stepped in to support her full-time. I started supporting her in their home initially but then moved my mom in with me. My dad also got diagnosed with dementia around this time and actually passed this past November.
Living With My Mom
By the time my mom moved in with me, there was really no formal conversations with her. It became obvious to all involved that I was the most successful care partner for her. She was excited to live with my husband and me and actually never asked to go back home or to live with my dad again. We created a warm, safe, loving, and welcoming environment for her, so she was just always happy to be there. Plus the positive relationship my mom and I always had that transcended from mother-daughter to friends allowed for us to pick up like no time was lost in our relationship. She was as thrilled to be spending time with me as I was to be spending time with her.
As I mentioned before, my Mom requires 24/7 care at this point. She needs help with most things (bathing, dressing, showering, managing finances, medication management, and decision making). Anything she is still able to do, I have her to do, though. She can still feed herself, brush her teeth, and help with washing her face. Besides all of the daily skills, mom and I make the most of every day together. She has twice a week music therapy, art class, and we do many activities together daily. She needs prompting and support to stay engaged, but I don’t mind supporting her in these areas. We sing, dance, laugh, paint, and spend time together every day.
I involve her in everything I can. I let her make choices between food for lunch (with limited options), I let her help clean by wiping her tray, I let her pick her clothes, I let her do everything she can. She deserves to still have a voice in her care even if she can’t fully communicate her wants/needs, I can create situations that empower her to make her own decisions.
There isn’t a day that goes by when I regret my decision to quit my job (Kindergarten teacher for the last nine years) to stay home and care for her full time. We find joy EVERY day. Even on the hardest days, I can look back and find something that day that made us both smile.
Honestly, the hardest part for me in this journey is that she is losing the pieces of herself in front of me. She will often (in moments of clarity) express her confusion. One day she looked at me and said, ‘I don’t know what I don’t know.’ Those are the moments that break my heart. She always dreamed of the adult relationship we would have and getting to be a grandma (to my future children) and now this role will look very different. She will need reminders and prompting to know that she has a grandchild. She will need support in spending time with a baby. As much as I try to find the joy, there are moments when I feel angry and sad for myself (and for her). If it is hard for me to watch her confusion, I can only imagine how hard it is for her to live in this world of confusion.
Raising Dementia Awareness
My biggest piece of advice for people going through a similar situation is to rally your support system. Whether this is people in your life (friends/family), a support group, a therapist, or an online community you will NEED these people. I am so fortunate to have a supportive husband, mother-in-law, and a WONDERFUL group of friends. But I have very little to no family support in caring for my mom, and I can’t rely on family to give me breaks. In addition, I have found support through seeing a therapist and the monthly support group that I run (Young Caregivers of Loved Ones with Dementia on Facebook). I have also connected with SO many wonderful people through Facebook, TikTok, Twitter, and Instagram. I have found so many young caregivers who are in similar situations and can understand what I am going through. They support me, listen to my worries, and share in my journey, and I am able to learn from them. Finding a support system during this extremely hard journey has been the biggest key for me to my mental health. I can’t be a positive care partner to my mom without showing up as my best self.
I hope that others take away from my story that YOU are not alone! There are so many people in similar situations. Even if the situation is different and their loved ones are in different stages in this journey, there are people out there who get it. There are people who are grieving right alongside you, and there are people out there who may know of a resource/support to help you. Share your story, reach out to others, and don’t be afraid to feel your feels. This is a hard journey. It is full of many, many emotions, but take time to stop and try to find joy and beauty in it. I am here for you, and I am feeling the feels too.”
This story was submitted to Love What Matters by Patti LaFleur and her mom, Linda, of Washington. You can follow her journey on Facebook, Instagram, Tiktok, Twitter, and her website. Young caregivers can find her monthly support group here. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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