The Intersectionality of Spousal Caregivers

How Pastors and Therapists Can Inform Themselves and Do Better In Supporting A Partial Widow

Podcast Season 1 Episode 1.1

A spousal caregiver is similar to a widow in some ways, but not completely, she is a partial widow. Because she is within an intersectional group, she needs special attention. Her pastors, spiritual advisors, and therapists may be used to counseling either a wife or a widow, but are inexperienced with a wife who is a partial widow. They need to inform themselves so they can support her better. Researchers are making more data and information available on the topic of the intersectionality of caregivers, so pastors and counselors must continue reading and learning.

Pastors and therapists must learn to recognize if they are counseling a wife who has become an emotional widow. They can learn to assess if her spouse has mental illness, including dementia or even addiction (diagnosed or undiagnosed), which are often called “invisible disabilities”. In other cases, they may be counseling a wife who has become a sexual widow, if her spouse is physically and/or emotionally unable to partner with her sexually. They also may be counseling a wife who has become a co-parenting widow, if her spouse is no longer able to partner with her as a co-parent of their children. There are multiple ways, even beyond these examples, that a spousal caregiver might need intersectionally-sensitive support. It is up to the pastors and counselors to keep learning and educating themselves so they can be more sensitive and provide well-informed guidance and advice.

About Marriage Therapy or Classes for Spousal Caregivers

Some pastors or therapists may not be aware that the wife is alone in her marriage because her husband’s illness or disability is invisible or undiagnosed. In these cases, she may receive recommendations to get marriage counseling. If she pursues marriage counseling, she will become frustrated and angry because she is an emotional widow and does not know it, yet. Pastors and therapists need to inform themselves about how to recognize the signs that a woman is an emotional or partial widow in her marriage. Becoming more informed and sensitive will help them avoid subjecting her to the trauma of receiving irrelevant marriage advice.

Temporary or Chronic Spousal Caregiving

Also, some wives may experience these as temporary changes because her spouse is in recovery or rehabilitation. No matter how long this lasts, it is still important for her to receive support from informed experts and from a community that understands her situation because they have informed themselves well.

Yes, I said “informed themselves well” because the responsibility is NOT to expect the spousal caregiver to help you understand her better. Putting that expectation on her creates yet another burden for her to carry. Pastors, spiritual advisors, and therapists must do the work to learn about this intersectionality so they can provide better support for the wife and for the community (family and friends) that wants to support her.

Chronic or Degenerative Conditions Lead to Cyclical Grief

Spousal caregivers lose a part of themselves because they lose a part of their connection with their spouse, but it happens over time, even from before the diagnosis is given. This causes cyclical grief that occurs over and over again over time… sometimes over decades. They do not have one loss event to grieve as in sudden death, but have many events to grieve over time as their spouse continues to change.

For a wife who experiences these changes permanently and progressively over time, she needs to have a support system to help her cope with this cyclical grief. Ideally, she needs support with rebuilding her life re-framed in a way that is consistent with and relevant to her reality of spousal caregiving.

It is crucial that a spousal caregiver’s support system is not pressuring her to go back to being and living as she used to before she became a spousal caregiver.
~ Donna Marie Johnson, @bride2caregiver

This is unrealistic, and it’s cruel for family and friends to put this type of pressure on her.

For example, many spousal caregivers are told, “Take care of yourself” or “don’t let yourself go” without being supported in knowing what that will look like now as a spousal caregiver. If their homebound spouse cannot be left alone and no respite caregiver is available, taking care of themselves looks a lot different than it did before when they were able to get out of the house at will. They may need support around understanding how to make the most of exercise opportunities at home. They may need a care basket full of manicure tools to do their own manicures and pedicures. They may need support to understand how to handle emotional eating while they have cyclical grief for decades.

Suggestions for Pastors and Churches

From a pastoral perspective, there may be things that the congregation can do or give to support a spousal caregiver better, such as:

Learning what to and not to say to her, especially if her husband’s condition is chronic or progressively degenerative
- e.g., asking if her husband is better is not a good question
- Well-informed pastors can teach friends and family how to better communicate with the spousal caregivers they love.
Learning what the spousal caregiver’s needs are, instead of assuming that she wants a casserole
- e.g., offer to sit with her spouse while she runs errands
- Well-informed pastors & advisors can learn what her needs are and then suggest what friends and family can do to support her or what to give her.
  - (Hint: Money becomes a perfect gift for families where a mom with school kids is now a spousal caregiver and the husband used to be the primary breadwinner.)

About Mothers of School Kids Who are Spousal Caregivers

There is a specific segment of spousal caregivers that I really have a heart for, because, in some ways, this used to be me: a wife who is caregiving for her husband while also raising school-aged children. Pastors and counselors can learn (and keep learning):

These wives are sometimes military wives, but some are not.
- There are many resources available for military families which are not available to non-military families.
  - This is an opportunity for pastors and counselors to step into this gap.
Children of men who have “invisible” disabilities are often falling through gaps in many different ways because their mothers are struggling and do not have a good support network
- Emotional struggles that aren’t diagnosed or addressed can lead to anxiety and depression and affect their parenting and their health.
- Financial struggles that are not recognized or addressed can lead to homelessness and child malnutrition.
- This is an opportunity for pastors and counselors to step into these gaps.
For the wife who wants/needs to protect her husband’s health privacy rights, especially when he has an invisible disability:
- Let her know about counseling privacy privilege so that she will feel confident in sharing transparently.
- For those who still won’t share, but you have the expertise to assess her situation, step in and offer relevant support for her and her children without requiring a disclosure of what’s going on with her husband’s health.

RESOURCES

LEARN ABOUT DEMENTIA

There are excellent ministerial-pastoral resources available to learn more about dementia and how it impacts spousal caregivers and other family members. Learn more at:

lovingthroughdementia.org
- This organization also does conferences and workshops locally near Atlanta.
- They also have recorded webinars that are available to view on their website.
- They have upcoming virtual workshops you can register for on their website.

SUPPORT GROUPS FOR SPOUSAL CAREGIVERS

There are excellent private support groups available, many via Facebook, to support spousal caregivers facing specific situations.

Private Zoom Video Chat Group

Bride2Caregiver.com

Private Facebook Spousal Caregiver Support Groups

Wives Helping Wives (wives only)
WAGS of SCI (for wives, spinal cord injury)
Well Spouse Association (all genders)
Spousal Care Community (all genders)

General Caregiver Support

The Caregiver Space Community

Grief Support Group

Option B
- Started by Sheryl Sandberg after losing her husband.

Support for Moms

Spiritual Rest with Refreshed Moms (Christian Moms)
Boss Mom Local Groups* (Mom entrepreneurs)

Support for Mental Health and Substance Abuse

Tap into any behavioral health resources available at work, including the EIP program or via health insurance (no referral is needed)
Dementia is a behavioral health issue, but it is also neurological, so seek medical support for the sick spouse and behavioral health support for the spousal caregiver
There are many support groups for mental health and for substance abuse. They are usually niched for specific conditions. Search on Google and on Facebook for local and virtual groups that are more relevant for your specific needs.
- Note: many local groups meet virtually now due to the pandemic; so even if a location that’s far from you is listed, you should still reach out for support anyway

Financial Support Resources for Spousal Caregivers

These are just some of the resources you can lean into to begin to build your financial support network over time. If you have access to a financial coach who understands the nuances of spousal caregiving, then definitely go to them as your primary support. The following resources can be found via google, youtube, and social networks, or click on the links.

Social Security Disability: 1) know that SSI is not the same as disability social security (SSD); 2) make sure you have many years of medical documentation when you apply for SSD for your loved one… and take them with you to the appointment so the agent can see them; 3) SSI is supplemental income that is only approved at certain income levels
If your spouse has been paying for disability benefits along with their health benefits, get support from their human resources department with filing claims (i.e., short term disability insurance and long-term disability insurance)
Financial Software: for taxes (Turbotax), budgeting (Mint), business financials (QuickBooks), and other apps
Consumer and Personal Finance Authors and Speakers: Suze Orman, Clark Howard, Anthony Oneal, and others
Entrepreneurship Coaches: Dana Malstaff of Boss Mom*, Deanna Mason of Refreshed Moms, Donna Marie Johnson of Lead Like A Queen, and others

All of the aforementioned resources are suggestions only. You must do your own due diligence to learn more about any resources before you begin to use them or recommend them to others.

The examples given in this article are not necessarily applicable to our specific situation. They are a composite of situations observed during informal research that I have done to become better informed for myself and to be a better resource for my audience. ~ Donna @bride2caregiver

*Disclaimer: Affiliate links are used here for resources that I have used myself and that I trust. If you choose to use these resources, thank you, because I may be compensated for referring you, if you decide to use any of their paid services/products, and if so, there is no additional cost to you for my referral compensation.