Today, about 15.7 million adult family members, many of them are spouses, are in the role of caregiving for someone who has dementia. While caregiving a spouse with dementia is common, it can come with some unique challenges.
Studies: The Psychological Distress of Caregiving for a Spouse
An analysis of 168 studies, Spouses, Adult Children, and Children-In-Laws as Caregivers of Older Adults (Pinquart and Sorensen 2011), gives insight into the struggles that spouses experience with caregiving. These challenges often play on the welfare of the caregiver. Studies report that spousal caregivers show more symptoms of depression, higher levels of financial and physical burden, relationship strain, and lower levels of psychological well-being.
Spousal caregivers typically provide more support, compared to other family members or caregivers, and demographics are a large part of this. Spousal caregivers are more likely to live with the care recipient, so they tend to provide more hours of caregiving, and they seek less respite time.
Higher levels of psychological distress in spousal caretakers are driven by the close relationship itself. The impending loss of the spouse, and the immense changes that take place in the person, can be incredibly stressful.
Intervention is recommended as a reduction in caregiver demands (e.g., respite), as well as increased resources, such as sharing the responsibilities between family members, and social supports (i.e., family counseling, peer support groups), as well as self-care (i.e., increased physical activity, healthy nutrition, and regular medical checkups).
Sandra Day O’Connor’s Personal Story of Caregiving and Alzheimer’s
As published by Forbes.com, former Supreme Court Justice, Sandra Day O’Connor’s husband was diagnosed with Alzheimer’s. She cared for him for many years, including moving to a new home to protect him from wandering and hiring in-home care. As her husband’s care needs increased, she chose to step down from her Supreme Court role. Within six months of her leaving the court, her husband “could barely recognize her.” She then made the hard decision to move him to an Alzheimer’s care facility.
After moving to the facility, he ‘formed an attachment to another woman.” Justice O’Connor wrote, “(She) would come in and find her husband holding hands with this other woman, and with her characteristic strength she would sit down and take her husband’s other hand.”
This can be a painful part of dementia, and it is often devastating for spouses. As memory is lost, the personality often changes.
The Impacts of Caregiving for a Spouse
There are three main areas of impact that caregiving for a spouse can have on a person, per Caregiver.org: social, emotional, and physical.
Spousal caregivers often experience depression at a high rate. It occurs due to a wide variety of emotional challenges, such as a spouse with dementia who no longer has the cognitive ability to relate to their loved one or are physically incapable of engaging in traditional intimacy.
Spousal caregivers can feel as if they have lost their partner, even as they try to adjust to the person that has changed dramatically. This can lead to feelings of guilt. These feelings are not easy to deal with, but they are normal.
Many of the changes that come with dementia can make an emotional impact on a spousal caregiver, for example, repetitive questions. The special person that the caregiver once knew so very well may now be asking the same things over and over again, and they may eventually become more confused due to impaired memory. This puts extra weight on the shoulders of the caregiver as he or she decides to stop telling their special someone that they have dementia, and they shift to focus on sharing life together and cultivating a quality of life despite it no longer looking like the same relationship.
Emotional strain can have a direct impact on a person’s physical well-being. Emotional stress can lead to poor sleep, increased blood pressure, headaches, and more. And it can increase the chance of developing other health conditions, such as diabetes and poor heart health.
The symptoms of dementia often affect the entire household. A spousal caregiver may be up during the night dealing with their loved one’s sleep problems with dementia, and this can leave the caregiver exhausted and in need of respite.
A spousal caregiver, especially a smaller wife, may also need to seek assistance to help their loved one with dementia move around.
Social life can take on a different look in marriage with dementia. And it is not uncommon for a spouse to feel embarrassed about explaining how their marriage is changing, and how dementia affects it socially. It can lead a spousal caregiver to feel isolated with the social challenges and stress of living with marital changes.
Paranoia, for example, is a common symptom of dementia that can make a social impact. Paranoia is an extreme and unrealistic distrust of others that leads a person to become suspicious, fearful, or jealous of people. Even though paranoia is linked to memory loss and is never caused by the dynamics of a marriage, it can feel especially painful for a spousal caregiver. Paranoia can lead a person with dementia to believe that the people closest to them (spouse included) are trying to do them harm, like stealing money, having an affair, or leaving them.
Take Care of You
At Sundara, we understand the significant stress, exhaustion, and overwhelm that can come with caregiving (especially caregiving a spouse with dementia). Preventive measures are required to avoid caregiver burnout. Many of the symptoms of caregiver burnout are physical, but burnout also leads to common psychological symptoms, such as feelings of depression, mood swings, worry, impatience, and anxiousness.
It is critical to engage in self-care if you are a spousal caregiver. You must care for yourself so that you can take care of others. This can involve respite care, setting up routines, restructuring schedules, and having mindful awareness of yourself via a Caregiver Stress Check.
Seek Help from Others
As much as you may want to be the sole caretaker of your spouse, please remember that “going it alone” can be very hard and can be detrimental to your welfare. You may need help so that you are prepared for the overwhelming changes and challenges that come with dementia.
You cannot pour (caretake) from an empty cup. You need the life-sustaining physical and mental capacity to be a spousal caretaker, and your cup is refilled by getting the support that you need.
If you are a caregiver in the Austin or Round Rock, Texas region, and would like to visit us and talk about the best options for the future, give us a call at 512-399-5089. We can help you every step of the way.