The Sandwich Generation- A young person's experience caring for a person with dementia

Written by E. Parsons BSN, RN

What makes an especially good sandwich? And what does a sandwich have to do with caregiving and dementia? Well, a sandwich, a good one anyways, contains layers of delicious meats, cheeses, and toppings, and is squished between two pieces of bread. Now instead of meats and cheeses, picture yourself; with all of your daily responsibilities, tasks, and stressors, and above this meaty center, picture your mother with dementia. She is the top piece of bread. And below, picture your children. They are the bottom piece. Are you starting to understand the silly analogy? For me, this analogy is very real. My mother with dementia and my 5 month old daughter have me sandwiched between them, each demanding my time and attention in their own unique way.

The CDC states that “People with Alzheimer’s disease and related dementias are usually cared for by family members or friends. The majority (80%) of people with Alzheimer’s disease and related dementias are receiving care in their homes. Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. In 2019, these caregivers will provided an estimated 18.5 billion hours of care. Approximately two-thirds of dementia caregivers are women, about one in three caregivers (34%) is age 65 or older, and approximately one-quarter of dementia caregivers are “sandwich generation” caregivers, meaning that they care not only for an aging parent, but also for children under age 18. The demands of caregiving can limit a caregiver’s ability to take care of themselves. Family caregivers of people with Alzheimer’s and related dementias are at greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions.(1)”

Anyone who has ever had a baby knows how challenging the early days are. I remember when my daughter was first born, I set an alarm every hour throughout the night so I could wake up and make sure she was still breathing. Sleep deprivation is a legitimate form of torture, so that in and of itself would be a challenge, not to mention postpartum depression, BREASTFEEDING (I could write a book on fricken breastfeeding), and stepping into the role of being a new mother. All in all, having a baby is hard. Beautiful? Yes. Rewarding? Yes. HARD? Definitely.

Now, remember the sandwich? Not only did I have a brand new slice of pumpernickel *newborn* on the bottom, I had a slice of sourdough *mom with dementia* on top! I remember when my daughter was two weeks old, my mother and I were driving to Costco. My mom doesn't drive anymore, so I was at the wheel and she was sitting in the back seat with baby. Somehow, she managed to find a bottle that had sunk down in between the seats sometime the week previously, and feed her the entire rotten thing by the time we arrived at our destination.

The emotions that I experienced after that incident I will truly never forget. I felt a rage inside myself that I had never felt before. I was so MAD at my mom. How could she not notice that the bottle was curdled? How could she have caused so much trouble in the short 8-minute drive it takes to get from our house to Costco? My rage quickly turned to fear. I was now realizing that I would have to protect my baby from my mother, her grandmother. I would have to think 5 steps ahead at all times to ensure that every bottle was accounted for, that the baby was within my sight at all times, and that my mother was significantly supervised during her time with my daughter. Next, my emotions turned to sadness, grief, and loss. Sadness for my mom, who never in a million years would ever dream of doing anything to harm my daughter in her right mind; grief that she would never truly be the grandmother I had always hoped and imagined she would be; and a realization and acknowledgement of loss of time that we would never be able to get back.

Sandwiched. Sandwiched between grieving and loss as well as love and excitement and new life. What a strange, surreal place to be. As I stood outside the car in the Costco parking lot, I looked at my mother for the first time in a long time with true empathy and compassion. Yes, I was upset about the situation. Yes, I was scared about what our future was now going to have to look like. But in that moment I felt so much love for her. If you knew my mom, you would know how much she loves children, especially babies. The fact that her mind had slipped so much from her grasp, to the point where she did something that was dangerous for her granddaughter, made me realize how difficult it must be to have dementia; how terrifying it must be to lose control of one's own mind.

Her brain was sick. It all hit me like a ton of bricks. Yes, she was still my mom, but she was sick. From that moment on, I began to look at her not as a bad person, or a person who did things that were wrong, but as a person who was sick. For me, coming to this realization was so freeing. I could now focus creating a safe environment in our home with the understanding that this person was someone who was struggling with an illness, instead of my mother who was doing annoying and unsafe things.

Living with someone who has dementia and a small child is not just scary, it can be utterly terrifying sometimes. My mom often will say, "Why don't you go take a shower and I will watch the baby?" or "How about you take a day for yourself and let me babysit?" The envy that I feel sometimes of women whose mothers can watch their children for them while they go to work, the grocery store, or out on a date is so intense! But instead of leaning into feelings of envy and despair, I choose to lean into all of the blessings that living with my mother with dementia has given us.

For one, my mother probably doesn't have very many years of her life left. What a blessing to be able to spend so much time with her before she goes; and what a blessing that she gets to spend (heavily supervised) time with her granddaughter! On days that are really challenging, I remind myself of these blessings and change my attitude to one of gratitude. (It works! It really does!) A change in perspective can be very powerful if implemented correctly. If I didn't, I would be a very miserable person, which is so easy to do when caring with someone with dementia. Just like being a mother is hard, being a caregiver for someone with dementia is hard, if not harder at times. So choosing to be blessed instead of stressed is my daily mantra!

Overall, being sandwiched between my child and my mother can sometimes feel like being squished between two very heavy pieces of bread. And on those days, I take time to acknowledge the feelings that come along with feeling squeezed and downright suffocated. But, with the right mindset, it can feel like being hugged. Today, I choose to have an attitude of gratitude. I have a wonderful mother and a beautiful daughter. I am too BLESSED to be STRESSED!

Reference

(1) https://www.cdc.gov/aging/caregiving/alzheimer.htm#:~:text=The%20majority%20(80%25)%20of,Alzheimer's%20disease%20and%20related%20dementias.