Somewhere in the world, every three seconds, someone is being diagnosed with dementia. Dementia is a catchall phrase that refers to many types of neurodegenerative diseases that cause cognitive decline. Neurodegenerative diseases bring about the onset of dementia including but not limited to: Alzheimer’s disease, Lewy body dementia, Parkinson’s disease dementia, vascular dementia (currently the second most common form of dementia), amyotrophic lateral sclerosis, and the most recently identified LATE (limbic-predominant age-related TDP-43 encephalopathy) which mimics Alzheimer’s symptoms but is caused by a different brain mechanism.
There is a long-held view that cognitive decline is a normal consequence of aging; however, this has been disproven by the successful aging of many individuals who remain in full control of their mental faculties. Just because you get old does not mean you will get dementia; and yet, the likelihood that you will get dementia does increase (doubling every five years) over the age of 65, in particular, if you carry the apolipoprotein E gene variant APOE ε4.
Those who have dementia have a dependence on their spouses and a health care system that is woefully unprepared for the scale and cost of maintaining their lives which will leave them relying on their spouses even more.
All people living with dementia will eventually exhibit combinations of three symptoms:
- Cognitive impairment (memory loss)
- Functional decline (changes in activities of daily living), and
- Neuropsychiatric disease symptoms (fluctuating moods, behaviors, and psychoses)
These symptoms can leave the healthy, unimpaired spouse at a loss with regard to communication issues and intimacy. While some spouses can cope with the monumental changes it brings to a marriage, many spouses cannot. Feelings of hopelessness, caregiver inadequacy, and embarrassment are often hallmarks of the caretaker spouse.
Caring for a spouse with Alzheimer’s or other forms of dementia can be exhausting. It is similar to watching a toddler; the person cannot be reasoned with or left unattended. People with dementia can live for many years, and it is presenting a real challenge to spouses.
Then there is this…What would you do if your spouse of many years had Alzheimer’s, is in a nursing home and strikes up a romantic relationship with another resident because they no longer remember you? Would it change how you cared for your spouse? Would it give you the freedom to go outside your marriage vows and begin a relationship with someone else?
Everyone is different and has different emotional tolerances. Famously, retired Supreme Court Justice Sandra Day O’Connor encountered this very problem. Her longtime husband was diagnosed with Alzheimer’s. While she cared for him as long as possible, even retiring from her Supreme Court position in large part to have time to tend to him, he eventually had to be moved to a care facility. It was in this care facility he began a relationship (often referred to as a “new attachment” in the case of dementia) to a woman only known as “Kay.” Sandra O’Connor had the emotional courage and presence of mind to understand this was not a personal slight by her husband. Instead, she embraced his new relationship willingly saying in part that if it brings him any happiness while suffering this terrible disease, she was on board to support his choices. Sadly, her husband passed away in 2009, and she herself was diagnosed with dementia. She died in 2023 from complications related to advanced dementia.
What about your own needs for a romantic relationship and partnership? When someone you love, in particular — your spouse — becomes ill, you want to help him or her get well. But what happens when the illness is dementia? A marital relationship that could have spanned years or decades becomes subject to enormous change, and that change is not a slow linear progression of predictability. As cognitive decline worsens, it’s an up and down interaction of being recognized and accepted by your spouse … or not. Unfortunately, while most people have every intention of honoring their vows of “in sickness and in health,” many are simply unprepared for the significant emotional impact that a dementia diagnosis can have on a marriage and spouses may find themselves in. Marriage vows often include the promise to stand by each other “in sickness and in health.” However, when faced with the progressive deterioration associated with dementia spouses may find themselves grappling with complex emotions and moral dilemmas. Is it selfish to contemplate parting ways with a partner afflicted by dementia? This question prompts a nuanced exploration of love, responsibility, and the ethical dimensions of marriage.
Living with someone with dementia forces the well spouse to take on more than a caregiving role. He or she will take on a parental role as a partner’s memory declines. The person with Alzheimer’s disease or another form of dementia may no longer be able to perform certain tasks, from handling financial and legal matters to managing self-care to doing certain household chores. Making all the decisions, whether important or not and taking over all the chores, is overwhelming.
Not all couples are happily married. Some stay together for the family’s sake and some stay together for financial reasons. For those who aren’t doing very well as a couple when dementia strikes, it can be very difficult for the well spouse to deal with essentially managing his or her spouse’s life for years to come. For those both happily married and not, there is bound to be resentment and a feeling of being trapped in this new dynamic with an enormous obligation.
For many spouses, there may well be feelings of grief over the changes in the relationship and a loss that does not feel unlike the death of a spouse. It is not selfish for experiencing those feelings. And it is not selfish to wonder whether or not moving away from being a couple is an option. Given a partner’s cognitive decline, it is likely a couple may no longer be able to have the same emotional or physical intimacy they once shared.
It is typical for people with dementia to experience changes in their sexual drive. Depression can cause a reduced interest in sex, as well as physical illness and some medications. It’s also common for caregivers to lose sexual desire because of the demands of caregiving, the transition from intimate partner to caregiver, and changes in their partner’s personality due to the progression of dementia. In many cases, the caregiving partner loses sexual attraction as his or her spouse becomes needier and has increased memory loss. It is very important to say that this change in attraction and desire for the demented partner is normal and not a reason to feel guilty. But the question is, what to do about filling the well spouse’s needs for intellectual and physical intimacy and companionship, all important features of aging well. Should a caregiver decline to tend for himself to his or her own detriment all because a partner got dementia?
Striking a balance between honoring marital vows and preserving one’s own well-being is paramount. It’s essential for spouses to acknowledge their limitations and prioritize self-care to prevent caregiver burnout and emotional and physical neglect. Self-care includes the well partner considering his or her needs. One of those needs is to not feel alone while living with a demented partner who could live for many, many years.
Marriage is predicated on mutual respect, communication, and shared decision-making. When faced with the realities of dementia, spouses must engage in open and honest discussions about their preferences, wishes, and fears but at some point, the person with dementia may not be capable of sharing a life the way he or she used to include making significant decisions about the relationship and or contribute to the partnership as in the past. The well spouse may be left to decide on his or her own, how to proceed with the marriage.
Dementia inexorably diminishes cognitive function and independence, raising questions about quality of life for both the affected individual and his or her spouse. While the instinct to honor marital vows is commendable, spouses must weigh the impact of prolonged caregiving on their own well-being and the overall quality of life for both parties. An argument can be made that without taking any legal action, as dementia progresses, it ends the marriage as we define marriage to be.
In contemplating the formal dissolution of a marriage due to a partner’s dementia diagnosis, it’s essential to recognize the complexity of the situation and refrain from passing judgment on others, and ourselves. The decision to part ways is deeply personal and multifaceted, influenced by factors such as the severity of the dementia, the availability of support networks, and the individual needs and desires of both spouses. In many cases the well partner will not even want to legally end the marriage. He or she will continue to care for a spouse with or without help, while beginning a new and separate life on his or her own. Is that selfish?
It is so upsetting and stressful to not only take care of someone with dementia but to also watch a person you love slip away. Who is anyone to say it is selfish to try and find moments of happiness in one’s life while going through that hell.
Ultimately, prioritizing honesty, compassion, and self-preservation is not selfish but rather an affirmation of one’s intrinsic worth and dignity within the context of a challenging and emotionally fraught circumstance. While the demented partner needs and deserves care, the well partner deserves to still have a life whether that includes a new partner or doing less with his or her spouse as dementia increases. Dementia is a horrible disease that slowly takes the life of the one we love. It is bad enough to lose one person to dementia but to sentence the well partner to also slowly disappear by his or her sacrificing his remaining years living in the demented person’s world is not the answer.
Written By Jill Loris
If you enjoyed this article, please give us an applause and share our article on social media.
Subscribe so you do not miss any future articles. We write about everything from being over 40, life, love, current events to interesting and sometimes, odd things happening in the world.
Check out Old Cow Media on Facebook, Instagram, TikTok, and the new, Threads.
Network with us on Linkedin.
You can hear more about healthy and happy aging at our Old Cow Podcast on Apple, Spotify, Google, Anchor, and anywhere else you may listen to Podcasts.
Have something to share? Please reach out! info@old-cow.com
To help us create ageist free journalism and encourage happy, healthy aging, please support us here & receive exclusive content as a thank you: https://patreon.com/OldCowMedia
