When a spouse is diagnosed with any of many diseases, the normal route for treatment is often through a hospital specializing in that type of care. But when the diagnosis is a form of dementia or cognitive impairment, diseases for which there are limited treatments and as yet no cure, the healthy spouse may feel it is their responsibility to step up and fulfill their marriage vows, specifically the one that states, “in sickness and in health.”
While this may seem like the right thing to do in most marriages, the reality is that it may have unforeseen repercussions. According to the altcp.org article, “Dementia Care: Filling the Role of Spouse and Caregiver,” a study by the Alzheimer’s Association showed the impacts of caregiving on caregivers included worsening health, emotional stress, depression, and negative effects on jobs. These impacts can last for months and even years as the study notes 86% of dementia caregivers have been in the role for at least a year and half for four or more years. Even considering marriage vows, caregivers should understand these possibilities.
When one spouse becomes essentially a parent to the other, it immediately redefines the marriage. What was once a joint effort quickly becomes a very one-sided relationship as the disease literally steals the personality and memories of the person and shared memories and dreams of the couple. Meanwhile, the other spouse must face the reality that the person they joined in marriage is no longer the same and that somehow this catastrophic change must be managed with love, compassion and empathy every day.
Within a marriage, the associated responsibilities can not only be physically overwhelming but are coupled with a range of emotions that can also be debilitating. According to the alz.org document “Caregiver Emotions,” these emotions include denial, false hope, anger, guilt, and sadness. Not unlike a death, spouses should face these emotions head on and accept them so they can continue to be a caregiver and live a healthy life of their own. This means understanding that these are normal emotions and essentially part of the grieving process and that they may continue or recur over time. The key is to allow grieving to happen and to accept it as a healthy necessity for the caregiver.
Another extremely important aspect of caregiving is to accept help when offered. Marriage does not preclude the love of other family members even though spouses may feel they are the only one who can provide the care needed. This however is not always good for the the spouse living with dementia or the healthy spouse. According to the healthline.com article, “Just 1 Hour of Social Interaction Per Week Can Help Dementia Patients,” one study in the United Kingdom showed lower levels of agitated behavior – a very common and disturbing symptom of dementia – in patients who received just 60 minutes of social interaction each week. When other family members offer to help, providing opportunities for them to spend time and engage with a dementia relative it may actually help the loved one with dementia feel better overall. An added benefit of having regular help from one or more people is that it keeps them apprised of their relative’s status so that in the event of a caregiver emergency, others who are familiar with the situation can step in and provide the care needed because they know the routine.
Of course, having help also means a spouse has free time to pursue their own interests and hobbies, go shopping, spend time with friends or anything else that takes them out of the dementia picture and lets them relax and recharge. More excellent advice can be found in the alzheimers.gov article, “Tips for Caregivers and Families of People With Dementia.”
As the number of people with dementia continues to grow, more and more support resources are becoming available for caregivers. These include:
Each of these offers help and support for caregivers that can help them over rough spots and to better understand the disease and how to manage daily care of the of a loved one living with dementia and themselves. Many Thrive Senior Living communities also offer monthly caregiver support groups.
When dementia becomes more than a spouse can handle, many families rely on a memory care community to keep a loved one safe, secure and as independent as possible. Memory care communities like Thrive Senior Living’s offer not only personal care, but daily therapies and activities, plenty of social interaction and welcomes families to take an active role in making their loved one’s life as fulfilling and independent as possible. Learn more by downloading our “Family Decision Toolkit” and contact us to schedule a tour for your transition team.