Your Alzheimer Story
Jenna Ellsworth, mother living with Alzheimer’s
Mom was always naturally absent-minded and forgetful, so between my brothers and dad none of us realized at first that she started to become cognitively impaired. Her mishaps were, I am now ashamed to admit, often the subject of laughter among my brothers and me growing up. We would ask my mom a question such as, “mom, where did you put the parmesan cheese?” and she would respond, “Yes, we have parmesan cheese.” She would move our things to different spots in the house and swear it wasn’t her. She often seemed to be in her own world, responding awkwardly to friends or interrupting them and talking over them as if she hadn’t listened to anything they said. We thought it was just her personality. Eventually my brothers and I grew up and went our separate ways, leaving my mom and dad empty-nested.
My father started to notice that mom lacked motivation to help him as he struggled with the diagnosis of Waldenstrom’s Macroglobulinemia (a mild blood-cell cancer) in his early sixties. He would get home from work exhausted as his body started to weaken from the disease, and she would not have dinner ready like she used to—nor would she have started it or decided what to make. When he and I talked to her about it, she would protest: “I cook all the time.” Literally, she would insist on things that just weren’t true.
My mother was a social worker for 20 years, providing in-home therapy to foster children around the area of Newark, NJ. She was on-call 24/7, dealing with victims of sexual abuse, parents with drug addictions, run-away children on Christmas Day, and so on. She had even had to take two years off in the late nineties because it got so emotionally draining. When she went back to work, the non-profit (YCS: Youth Consultation Services) put her in charge of an overwhelming amount of administrative tasks that were not part of her job description. She developed arthritis in her fingers, and with her sciatica and back problems, sitting in front of a computer for many hours became very cumbersome. In August 2014, my mom lost her job because she did not understand how to complete the state-mandated multiple-choice test she needed to pass in order to renew her license. This came as a surprise to us since she had always been very capable in that sense. We were also relieved for her though, because she had grown to hate that job and seemed to have developed some anxiety due to it.
My father started to lose patience trying to explain to her how to send emails and text messages, let alone pay bills. She started to depend on him for everything, never taking initiative. I should note that this dependence was partially due to my father’s personality. He was a driven go-getter, and liked to be in charge. Mom just sat back and let him run the show, which we thought was mainly out of laziness/ lack of interest, but this factor also prevented us from noticing the first symptoms of Alzheimer’s. Once retired, mom became antisocial and recluse. She spent the whole first year of her retirement at home reading in bed or on the couch, sticking to occasional piano playing as her only hobby. My dad thought she was just relaxing and recovering from the years of stress at her job, and being busy researching his own disease and keeping up with his hobbies (gardening, woodworking, biking), he didn’t notice the signs. He did, however, try to get her to do things such as go out for walks or clear out clutter from the house. She reacted defensively.
During her last year of working, mom had also started to lose weight. I got home from being abroad in Argentina and I didn’t recognize her. She looked like a skeleton! Not only had she stopped cooking completely, but in addition her appetite was almost non-existent. She only ate if food was put in front of her, and she never could finish her plate.
Feeling financially bogged down by town taxes of over $1,000 a month and a house too large for them that they had lived in for over 30 years, in the summer of 2014 my dad started looking into moving out of state into a smaller house. His disease was somewhat under control at that time, and he started to worry more about my mother than himself. He tried not to blame her for being so apathetic and indifferent. My mom did not help at all with the house search, she just said she agreed with whatever my dad researched and decided. She didn’t bother to ask him about his health, and couldn’t explain his disease to anyone if they asked, let alone keep up with when he had appointments.
I had started to notice a decline in my mom’s cognitive abilities. She was much quieter when we visited, and trying to cook with her around the holidays was frustrating, because I had to plan everything and she would make mistakes in following instructions, or forget something I had just told her. The woman who had taught me how to cook and do so many things, and now I felt like I had to reteach her—ineffectively. Not knowing that she had Alzheimer’s, I admittedly expressed my frustration, and I noticed that she reacted like a child. Sometimes she would get so angry that she would throw a temper tantrum, storming up to her room and slamming her door.
My dad eventually took my mom for an MRI and some cognitive testing, an idea which she adamantly rejected. In fact, he had to threaten to divorce her to get her to even agree to going to the appointment. He was fed up with her lack of dedication and her refusal to recognize the problem or want to try to solve it. When we got the diagnosis in September 2015, mom was in complete denial. In fact, she got angry with us, as if it had been our choice to impose this “false” diagnosis on her. Dad had lost motivation in the kitchen too. The refrigerator was full of old leftovers that had grown moldy and nobody had cleaned out. I started looking into home care agencies because I was worried about them not eating. We hired a caregiver, but she cancelled on us several times; the agency was not very supportive so we decided not to go that route.
That same month, we found out that dad’s cancer had transformed into stage 4 Diffuse Large B-Cell Lymphoma and he was hospitalized, we realized that this meant my mother would not be eating if left alone. I stayed with her for the first week then set up a support system of family friends using the website lotsahelpinghands.com. I interviewed several caregivers through care.com and hired one to come three times a week, though feared that this would not be affordable long-term. This caregiver was sweet, but my mother was embarrassed to have her here, and the woman did not know much about Alzheimer’s herself; it was expensive and not very productive.
Dad’s decline was rapid; the first round of chemo at Overlook Hospital was not successful, and it destroyed his immune system. He was transferred to Memorial Sloan Kettering Cancer Center in New York, where he was for a week, but the doctors basically told him that he had a very low risk of surviving the more aggressive chemo. He decided to come home into hospice care, but before we could even get the hospice set up, he suffered heart dysrhythmia and we had to call 911. He died three days later in the hospital. This was ten days ago.
During the month between both mom and dad’s diagnoses at the end of September and his death on November 1st, we have had a support system of friends and family members who flew in to help out. Church members started bringing us food and taking my mom for walks. We’ve had to drive back and forth from the hospital every day and supervise him 24/7 during the four days he was home. Therefore, Alzheimer’s was put temporarily on the back-burner.
After my dad’s passing, I have decided to leave my teaching job in Delaware and come to New Jersey full-time to look after my mom, as well as get this house renovated, cleared out and ready to sell. However, I can’t stay here forever. I was hoping to go back to school in Argentina next February, (also my husband lives in Argentina), though I’m aware that I might need to put that goal on hold.
Though my mom’s friends have been helpful, we cannot rely on them long-term. To throw in another complication, just before both diagnoses in September, my parents closed on a small house in Vermont, in the town where our cousins live. It was their dream to move to that town, and my mom still thinks she can live alone in that house. My brothers and I are pretty sure that she can’t, and don’t want to impose a burden on our cousins. Full-time care is extremely expensive, and mom is completely against moving into assisted living.
I am just embarking on this journey, and it is hard for both of us. Mom is having a hard time wrapping her head around the idea of her daughter taking care of her. For example, I’ve had to take away her car keys and her medications. She is understandably upset about losing her autonomy. She also tells me that I aggravate her. I feel very alone, as my brothers both live far away, and the support system in place during my dad’s decline is slowly starting to fade away. Reading the other stories on this website, I am seeing that mom is still relatively high functioning, but no doctors have been able to make predictions as to how fast the disease will progress.