‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s

🌈 Abstract

The article is a personal account of the author's experience caring for his wife Vanessa, who was diagnosed with early-onset Alzheimer's disease at the age of 49. It explores the challenges, emotional turmoil, and practical difficulties the author faced as Vanessa's condition deteriorated over the years, leading to her eventual placement in a nursing home. The article also discusses broader societal issues around dementia, including the lack of public awareness, inadequate funding for research and care, and the financial toll on families.

🙋 Q&A

[01] The Onset of Alzheimer's

1. What were the early signs of Alzheimer's in Vanessa?

• Vanessa's preoccupation with Alzheimer's disease, even before her diagnosis
• Subtle signs like misplacing car keys and sunglasses, which were initially dismissed as normal forgetfulness
• An incident where Vanessa forgot a conversation she had just had with her husband

2. How did the author initially respond to Vanessa's concerns about developing Alzheimer's?

• The author insisted that Vanessa would not develop Alzheimer's, dismissing her fears as general fatalism
• He maintained this position for much of the first decade of their relationship, until he could no longer ignore the signs of her declining cognitive abilities

3. What was the process of Vanessa's diagnosis?

• Vanessa's symptoms were initially attributed to other conditions like menopause, depression, and anxiety
• It was not until 2019, after a series of medical tests including a lumbar puncture and PET scan, that she was definitively diagnosed with familial Alzheimer's disease

[02] The Challenges of Caregiving

1. How did the caregiving responsibilities impact the author's life?

• The author became a "single parent of three," with Vanessa requiring as much care and assistance as their two young children
• He had to help Vanessa with daily tasks like dressing, undressing, and using the bathroom, which led to frustration and resentment on both their parts

2. What were the emotional and psychological tolls of caregiving for the author?

• The author experienced guilt, anger, and a sense of failure at times, as he struggled to cope with Vanessa's deteriorating condition
• He grappled with the decision to eventually place Vanessa in a nursing home, which brought on additional guilt

3. How did the COVID-19 lockdown affect the caregiving situation?

• The lockdown provided some comfort, as no one else was able to go out, but the domestic challenges remained relentless and enervating

[03] The Transition to Nursing Home Care

1. What were the challenges in finding a suitable nursing home for Vanessa?

• Many nursing homes were unable to accommodate Vanessa due to her young age and the "challenging behavior" associated with her condition
• It took significant effort and persistence to finally find a family-run, independent nursing home that could provide the necessary level of care

2. How did the author feel about Vanessa leaving their home for the last time?

• The author describes it as a "big rupture" that triggered intense grief, even though Vanessa was still alive
• He realized that Vanessa would never walk through the front door of their family home again

3. What were the positive aspects of the last two years Vanessa spent in the nursing home?

• The author was able to rebuild his relationship with Vanessa, as the burden of daily care was lifted
• They were able to enjoy moments of joy and laughter together, despite the ongoing decline of her condition

[04] Reflections on Dementia and Societal Awareness

1. What are the author's views on the "live well with dementia" movement?

• The author is skeptical of the claims that it is possible to "live well" with the type of dementia Vanessa had, as the condition ultimately robs the patient of their faculties and independence

2. How does the author feel about the push for early diagnosis of dementia?

• The author questions whether an earlier diagnosis would have been beneficial for Vanessa, as it may have only increased her anxiety and worry about the condition

3. What are the author's thoughts on the societal and financial challenges posed by dementia?

• The author highlights the lack of public awareness, inadequate funding for research and care, and the immense financial toll on families affected by dementia