A Couple’s Guide to Coping with Spousal Dementia

As a spouse, you want to do everything in your power to keep your spouse healthy. But what happens if he or she suffers from dementia? A marriage with the potential to span years or decades becomes subject to enormous change, and that change is not a slow linear progression of predictability. Suddenly interactions depend on moments of clarity when your spouse recognizes and accepts you.

All people living with dementia will eventually exhibit combinations of three symptoms:

• Cognitive impairment (memory loss)
• Functional decline (changes in activities of daily living)
• Neuropsychiatric disease symptoms (fluctuating moods, behaviors, and psychoses)

These symptoms can leave the healthy, unimpaired spouse at a loss with communication and intimacy issues. While some spouses can cope with the monumental changes dementia brings to a marriage, many cannot. Feelings of hopelessness, inadequacy, and embarrassment are often hallmarks of the caretaker spouse.

Caring for a Spouse with Dementia & Alzheimer

Caring for a spouse with Alzheimer’s or other forms of dementia can be exhausting. It’s similar to watching a toddler; your spouse can’t be reasoned with or left unattended. People with dementia can live for many years, presenting a real challenge to care facilities as well as spouses.

What would you do if your spouse with Alzheimer’s was in a nursing home and started a romantic relationship with another resident? Would it change how you cared for them? Would it give you the freedom to reevaluate the relationship or your future emotional needs?

Everyone is different and has unique emotional tolerances. 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 tend to him, he eventually had to be moved to a care facility. It was in this care facility he began a relationship (a new attachment in the case of dementia) with a woman named 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 willingly embraced his new relationship, saying it brought him happiness while suffering from a terrible disease, and she was on board to support his choices.

Preparing for Dementia

Some states advocate and provide the legal framework for advanced care planning for individuals diagnosed with dementia. Beyond decisions regarding medical orders for life-sustaining treatment (MOLST) and do not resuscitate orders (DNR), couples are now encouraged to explore their expectations if one of them were diagnosed with dementia. What would happen if that person formed a new attachment outside the marriage?

As we age, there is an increased incidence of dementia. Due to advances in medical technology, we are living longer with dementia and other diseases. While a person with dementia may be stripped of their memories, they are still a human being who needs warmth, contact, and interaction. It’s a basic human need to love and be loved, and that connection can quell some of the psychological problems of isolation and loneliness many dementia patients experience.

Discussing Dementia

Having a discussion with your spouse or partner is certainly not easy. No one wants to imagine the possibility that this can happen to them, and yet the possibility is very real. Ideally, these wishes will be documented as part of a long-term care plan created with the help of an elder law attorney that also addresses the type of care desired and how to pay for it.

This article offers a summary of aspects of elder law. It is not legal advice and does not create an attorney-client relationship. For legal advice, you should contact us at (352) 565-7737! We look forward to hearing from you!