What to Do When Dementia Becomes an Uninvited Visitor in an Unmarried Romantic Partnership: 12 Steps to Help

As the new year approaches, we like to count our blessings—good health, interesting work, close friends and family, and the freedoms we enjoy daily in our democracy. At the same time, we are preparing for the vicissitudes that come with ageing. 

One of the issues many of us will struggle with if we’re in an unmarried romantic partnership is the appearance of an unwelcome visitor—the cognitive decline of a romantic partner, the consequences of which are almost beyond our powers of anticipation.  

It comes on us like a rash, slowly at first often masquerading as hearing loss or forgetful senior moments. Then, it spreads, becoming more pronounced as the same questions and same illogical answers might arise again and again. Sometimes, there are quizzical looks at a loved one that seem to signal they don’t understand what’s being talked about or even where they are and why. And we start to wonder, could they be suffering from some type of dementia? 

We rush to our computers to surf for the typical signs, which we’ve often read about in articles and books. If we find the symptoms fit, it’s likely the next step will be to discuss concerns with our partner and set up an appointment with the family physician to verify the possibility with a follow-up visit to a neurologist for confirmation. We hope, of course, our loved one will agree to act; not all will. 

And although dementia is certainly nothing to be ashamed of, only after the reality sinks in are we likely to decide to discuss it with our closest family members and friends who promise to keep it confidential, until it’s so obvious that the secret can’t be safeguarded. 

Dementia is the ghost at the banquet of many of our conversations that we never care to invite to sit at our table. Yet, it’s a fact of life as we age. As we all know, the population is living longer. Thus, the numbers of people who are experiencing dementia have grown larger. In fact, an estimated 5.8 million Americans of all ages are living with Alzheimer’s disease, which includes 5.6 million aged 65 and older and approximately 200,000 under age 65 who have younger-onset Alzheimer’s, the most common form of dementia, the umbrella term. And what’s worse is that the number of related dementias is expected to double by 2060, according to a new study from the Centers for Disease Control and Prevention. Currently, there is no cure. 

Dealing with the disease for anyone can be unsurmountable but for loved ones who are not married—and may be living together under the same roof or periodically sharing their separate homes—there is another major concern. Will the healthy partner decide to stay in the relationship as the disease progresses? 

Without a doubt, the thought of pulling out of the relationship seems cruel. However, some may opt to do so because it’s not what they signed up for and because they’re not legally married. Before we rush to judge them, which is easy to do, let’s weigh in instead on a course of action that we think is far more constructive and helpful. Here are a dozen steps to help the person and others surrounding them start to proceed. These are only rough guidelines and conversations with an elder lawyer, financial advisor and therapist are also recommended: 

• First, what is their legal responsibility? If they’re the one in charge who’s been named the proxy or agent, according to a legally signed health-care proxy, they have a say in the health-care decisions, especially if the person with dementia can’t speak for themselves. This makes it difficult to walk away. It's time perhaps to talk to an elder lawyer or financial advisor who has dealt with this challenge many times. Perhaps, it's prudent to talk to both experts.
• What is their moral responsibility? This takes more in-depth soul searching and there’s no right or wrong answer. We know of legally married spouses who’ve decided to step away when serious illness occurs, for all sorts of reasons. When you’ve been with someone for a long time, married or not, you’ve seen them at their best and at their worst. Is this the time to bolt? Or is there an unwritten understanding, a resolve made and obeyed, that you will stick together regardless of the circumstances until death do you part. One good book to read to help get you thinking is How Good Do We Have to Be (Little, Brown and Company) by Harold S. Kushner, also author of When Bad things Happen to Good People. And remember that the steps forward don’t have to be either or, or a black and white outcome.
• What is the responsibility of the children of the parent with dementia? If they have grown children who have a healthy relationship with the parent with dementia, it may be time for a frank talk with them about what seems to be happening and how much they plan to be involved. In some cases, the grown children may be the proxy or agent and may be in full charge. In other cases, they may not want the romantic partner involved at all. Some children have even kept the romantic partner away for all sorts of reasons. It's time for a frank discussion with your loved one and later with the children alone or together.
• If there’s no proxy or agent, it may be time for one to be appointed. Here again an elder lawyer or financial planner may be needed, or both.
• It may be time for an honest, frank talk with a therapist, alone for the romantic partner to help sort out their options—bow out, stay in, be part of the solution or let the family members take charge, even if they’re not the proxy or agent. It also might be prudent to consult a financial advisor to see what financial resources are available to handle the disease and caregiving costs. They are often steep and quickly add up. In New York City, for instance, full-time help that’s been vetted by an agency can total $240,000 a year, and that doesn’t include all the groceries, diapers and other essentials.
• Depending on what’s decided, it may be time to go to a therapist with the loved one and decide how to proceed alone or together and deal with the relationship. Caregiving is hard work and more help may be needed daily or weekly to plan for the dementia patient’s safety. The caregiver—even if dutiful—may need to step away periodically and recharge—perhaps, once or twice a week, as well as have a planned longer vacation without their loved one. They need to keep enjoying activities that bring them joy and relaxation. Even without fill-time care, periodic professional help can be expensive. Again, in New York City for instance, caregivers get at least $20 an hour and more often $25 or $30 an hour. You may need to hire two, one for daytime and one for evening. They easily burn out and need breaks.
• In the meantime, it’s also time for a crash course on Alzheimer’s or whatever form of dementia the person faces and its effects. The good news is that there’s so much written help from the Alzheimer’s Association, including books such as The 36-Hour Day by Nancy Mace (Johns Hopkins University Press), articles, lectures and support groups. Chief among the association’s tips is that adjusting to a dementia diagnosis is an ongoing process and each person reacts differently as the disease progresses—both the romantic partner and patient. And few know in advance how they will react due to the different effects of the disease. Many will suffer from sundowning, which involves less sleeping at night, more confusion and agitation.
• If the person has long-term care insurance, read the fine print. Find out what prerequisites are required for it to kick in such as number of days, what daily living activities the person can’t perform, what it pays and so on. Not all policies are the same.
• Check out support groups. These can offer a lifeline since they are attended by a leader who’s knowledgeable about the prognosis and solutions, as well as attendees going through similar circumstances. It does help to hear how Jane Doe is handling her loved one’s tantrums and lack of sleeping. In this case, misery does love company and advice.
• For the caregiver, it’s important they surround themselves with friends and other family members who won’t shun them or the loved one. This illness can prove very isolating as it progresses, and cognitive abilities decline. Try to include visitors who are sympathetic; it will become easily apparent. And if any friend or family member starts giving advice—and excessively, the caregiver should learn to say if so desired that they appreciate their thoughts but prefer that they just listen since each case again might be very different.
• Remember, not all decisions are irrevocable. Those include deciding that someone can’t be at home any longer, even if care is great; some with dementia need to be in a skilled nursing home for their safety and around-the-clock attention. The key for a loving caregiver is being able to be honest with themselves and make changes along the way. Nobody knows how they may react until they walk in these very difficult shoes, and how they react may also change along the way. It’s typically a very long, difficult journey with lots of twists, turns and heartache.
• Finally, know that dementia causes your equal or almost equal partnership to unravel. You may find yourself in charge or choose not to be after years of shared decisions from what to eat to where to travel and how to spend your pool of money. But the inequality now is okay. Whatever your decision, try to remember the good times and do what’s best now for both of you in the days, months and maybe years ahead.