My Mom has been dead for two years. August 30, 2024 was the two year anniversary of the day Mom took her last breath. She passed away surrounded by family, including me and my Dad (her husband of over forty years). That afternoon, as I sat bedside, as I had been doing for the previous two weeks, we all listened to her death rattle breathing and I think we just wanted it to be over for us, but mostly for her. The suffering, confusion, anger, and overall choke-hold this awful disease had on her had reached a breaking point. I told her, as she drifted in and out, less than twenty-four hours before her death, “It’s ok Mom, you can go, we’ll be ok.” But, in reality she was gone before that day. Alzheimer’s had stripped her of the person she was and left only a shell. She had only really been diagnosed a year prior but we all knew she was fading slowly for years but her denial and our fear of upsetting her kept an official diagnosis at bay for much longer. And, just over a year from diagnosis, she was gone. Years before her diagnosis, looking back now, I can see markers, or indications that something was happening. She lived in Indiana, and I was here in California raising my children. Her visits declined and then eventually so did our phone calls, unless I was calling her. She began to isolate herself and turned inward. I see now, that this was her adapting to knowing her brain was changing. If she was isolated, we wouldn’t see the progression. I can see now how lonely that must have been for her. I really knew that something was wrong when in 2021, I received a package of Christmas gifts for myself and my family and my own mother, who gave me my name, had misspelled it on several of my gifts. I knew then that our time was more limited than I ever imagined it being.
Social isolation is linked to the development and onset of Alzheimer’s disease. When a person isolates and separates themselves from loved ones or society at large, research shows a link to brain changes that can be contributed to the development of dementia or AD (Bermejo-Pareja). Isolation then becomes a theme for patients who develop and are diagnosed with Alzheimer’s disease too. Oftentimes, it can be necessary to isolate a person for their own safety or the safety of those around them, and even the public at large. However, when a person is diagnosed with dementia and/or Alzheimer’s, the patients themselves report feeling even more isolated and unable to connect with their life the way they did before. People who are diagnosed with Alzheimer’s Disease are often stripped of their dignity and independence and isolated from society, but research and first hand accounts show that altering the focus and centralizing the patient and the abilities they still possess makes caregiving and disease progression easier.
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Figure 2. Steve Wessler, a professor and Alzheimer’s patient |
As a society we are generally not privy to Alzheimer’s from the patient’s perspective; perhaps we don’t think they are capable, willing, or it is too scary or sad an idea. We are only able to see what it looks like from the outside. When Steve Wessler, a Professor who teaches about human rights issues was diagnosed with Alzheimer’s at the age of seventy-one, he says, “Of all the diseases I could contract, Alzheimer’s was the one I feared the most.” In his piece written for the Boston Globe (“I have Alzheimer’s Disease”). Wessler also offers his own perspective of what it is like to live with AD, and what he needs from society as a whole to feel valued while also facing a challenging diagnosis. He presents this idea on how to best support Alzheimer’s patients in our lives and society as a whole, “All of us have the capacity to support Alzheimer's patients, whether it's by saying hello in the supermarket, offering to drive a friend to an appointment, or supporting them so they can continue working until they need to stop. Only by breaking the silence can we end the damaging stigma around this disease.” When people like Wessler step outside of their disease and are able to share information with those around them, it allows caregivers, family members, friends and even society a look inside what it must be like. It reshapes what we as caregivers think is best for patients and allows us to see what it must be like to live with such a challenging and heartbreaking diagnosis.
Caring for AD patients can be very difficult. Caregivers (both professional and familial) are faced with challenges unique to the disease and how it presents and progresses in each individual patient (Yıldızhan). Historically, AD patients have been isolated and kept away either at home or placed into specific memory care units in hospitals and segregated away from other patients; oftentimes, without visits from family, while being provided subpar care. Because of the challenges presented by AD, keeping patients at home can be very difficult, especially here in the US where our health care and social service systems just do not provide enough support to patients and their families.
Baystate Health in Massachusetts is changing its approach to caring for patients with dementia and AD by changing the focus to what strengths a patient has vs weaknesses. Their program referred to as Baystate House Calls allows patients to stay in their homes with a team of healthcare and community care providers who visit them in their own environments. Part of their approach is habilitation therapy which focuses on, “Everything positive - it focuses on people's strengths, not their weaknesses," says Beth Cardillo, a social worker for the program, adding that it, “brings caregivers and patients closer together as they work on daily tasks, makes those suffering from dementia feel respected and valued, reduces stress among caregivers, and creates positive emotional experiences that bring comfort and happiness” (O’Brien).
Renae, my Mom, was born in 1954 on a small farm in Estherville, Iowa and was the oldest of six. When she was born, she suffered from shoulder dystocia which caused her right arm to be paralyzed. She had very limited use of her arm and had to do everything with her left arm. It never stopped her or prevented her from doing anything. She was brilliant at adapting, and stubborn as a bull, and refused to take no as an answer from anyone. Her disability never stopped her or limited her. However, her Alzheimer’s diagnosis would absolutely alter her ability to adapt. She was just as afraid of dementia taking her life and the rest of us were, because we’d all witnessed it take the life of her mother in 2012. It was like seeing into the future for the rest of us women in the family because, as research shows, having a parent with Alzheimer’s increases your own risk, more so if diagnosed before the age of sixty (Bermejo-Pareja).
It’s an early October morning, and I decide now is the time to make a really difficult call, and ask my Dad if he is open and willing to talk to me about the last couple of years of my Mom’s life, her diagnosis, caregiving, and her eventual death. My heart races for the wounds I may be opening, but knowing that this is a conversation that matters and that needs to take place for both of us, and for the greater good. He answers the phone in a cheerful manner and I can tell he’s driving into work and I’ve interrupted his coffee and country music routine, but proceed anyway. I tell him that I’m working on a paper for my English class and want to ask him some questions about mom. He agrees, almost reluctantly.
My Dad, Leon, explains that while he knew the diagnosis was coming for years, “Actually hearing the words sent a chill up my spine and I was not ready in the least for what the next few years were going to look like. We thought we had more time, but the progression happened so fast that I still have a hard time comprehending what we all went through.”
After forty years of marriage, and raising a collective five children together, they had been through so many hardships, but I know that my Mom’s Alzheimer’s was by far the most gut wrenching thing to happen to them both.
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Figure 3. Leon and Renae, next to a wild burro in Oatman, Arizona. 1996. |
When asked what the most difficult part of AD was, he responded, “Well, it was realizing that the end of my life would look different, and so would hers,” he paused and I could tell he was starting to get choked up and feel overwhelmed, “figuring out how I was going to honor her wishes to remain at home, while also working and caring for us financially, without any support, was by far one of the most difficult pieces.” Luckily, a family member was available to move in and help care for Mom day-to-day and I was available to be there to care for her in her final month of life with the help of Hospice, but had that not been an option, there is no support available for in-home care that doesn’t potentially bankrupt families facing such a diagnosis.
The confusion that AD patients can feel makes caregiving very heavy and arduous. This confusion made it hard for Leon to be able to connect with Renae in the end, he explained, “I felt so frustrated with her when she kept asking to go home, and she was already home. In OUR home. The house we purchased together and had made into our forever home. It made me feel like she didn’t want to be there and that she felt like somewhere else was home. Now, I realize that she was yearning for peace and safety and just felt scared and the only way she could express that was to say she wanted to go home.” This is a common theme among AD patients and it can be draining for caregivers.
AD often requires caregivers to get into the reality and world of the person suffering from dementia. Instead of arguing to correct their statements which are generally arbitrary, it is easier to agree and go with them into their world. We need to go to their reality, and not expect them to come back to ours. AD robs people of so much, so many memories and moments, but as caregivers, we can continue to encourage and remind patients of their identities and encourage the abilities they still have while they have them.
I believe that It is clear that while Alzheimer’s Disease affects everyone differently, the battles and challenges faced by families are very similar. It is also clear that both patients and their families/caregivers are in need of more support. The lack of support available to patients leads to caregiver burnout, and worse disease progression. When we no longer see Alzheimer’s patients as anything other than their diagnosis, we are encouraging the erosion of self and promoting the isolation they likely already feel. Alzheimer’s will always win the war, and when we as caregivers, loved ones, coworkers, or anyone else who interacts with someone with AD, we can make those interactions as validating, encouraging, and loving as possible to keep fighting the battles. When we don’t see a whole person, we lose our own humanity. And thus, dehumanize them and allow the disease to become the focus. While research is leaning towards identifying the cause of Alzheimer’s Disease, as a society, we don’t need to know what causes a disease to be able to still see the value of someone, to encourage them to continue living their life as best they can, to care for them with respect and love, and to keep them as the central focus instead of the disease.
Works Cited
Bermejo-Pareja, F., and del S. Teodoro. "Controversial Past, Splendid Present, Unpredictable Future: A Brief Review of Alzheimer Disease History." Journal of Clinical Medicine, vol. 13, no. 2, 2024, pp. 536. Accessed September 27, 2024. ProQuest, https://collegeofthedesert.idm.oclc.org/login?url=https://www.proquest.com/scholarly-journals/controversial-past-splendid-present-unpredictable/docview/2918774250/se-2, doi:https://doi.org/10.3390/jcm13020536.
Dailey, Leon. Personal interview with the author. 3 October 2024.
"Five Things we Learned about Alzheimer's in 2023." ANA-New York Nurse, vol. 8, no. 3, 2024, pp. 11. Accessed September 27, 2024. ProQuest, https://collegeofthedesert.idm.oclc.org/login?url=https://www.proquest.com/trade-journals/five-things-we-learned-about-alzheimers-2023/docview/2921212986/se-2.
O'Brien, George. "Living in their World." BusinessWest, vol. 39, no. 26, 2023, pp. 21-24,27. Accessed September 27, 2024. ProQuest, https://collegeofthedesert.idm.oclc.org/login?url=https://www.proquest.com/trade-journals/living-their-world/docview/2811288486/se-2.
Stabiner, Karen. "'American Fiction,' Alzheimer's, and Mid-Century Moms: We Bemoan the Onset of Alzheimer's, Yet having seen 'American Fiction' Twice, I can Finally Consider the Possibility that My Mom had some Kind of Disconnected Peace, Absolved at Last of Her Parental Responsibilities." Boston Globe, Feb 26, 2024. Accessed September 27, 2024. ProQuest, https://collegeofthedesert.idm.oclc.org/login?url=https://www.proquest.com/newspapers/american-fiction-alzheimers-mid-century-moms/docview/2931483588/se-2.
Wessler, Steve. "I have Alzheimer's Disease. this is what I Need from You.: I've Decided to Share My Diagnosis with as Many People as I can. I do this because when we Don't Talk about it, People with Alzheimer's Like Me Become Isolated." Boston Globe, Jan 16, 2024. Accessed September 27, 2024. ProQuest, https://collegeofthedesert.idm.oclc.org/login?url=https://www.proquest.com/newspapers/i-have-alzheimers-disease-this-is-what-need-you/docview/2914136716/se-2.
Yıldızhan, Eren, et al. "The Burden of Care and Burnout in Individuals Caring for Patients with Alzheimer’s Disease." Community Mental Health Journal, vol. 55, no. 2, 2019, pp. 304-310. Accessed September 27, 2024. ProQuest, https://collegeofthedesert.idm.oclc.org/login?url=https://www.proquest.com/scholarly-journals/burden-care-burnout-individuals-caring-patients/docview/2028348947/se-2, doi:https://doi.org/10.1007/s10597-018-0276-2.
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