There are marriage problems, and then there are circumstances that change the very nature of a marriage.

A stroke, dementia, Parkinson’s disease, traumatic brain injury, or another condition that causes cognitive decline can do that. The person you married is still there, but memory, judgment, communication, personality, behavior, or physical ability may have changed. Responsibilities that once belonged to two people may gradually fall onto one.

If you’re living through this, some of the usual marriage advice may not seem to fit anymore. You aren’t simply dealing with poor communication, unresolved conflict, or not spending enough time together. The entire dynamic of your relationship may have changed, and that calls for a different kind of help.

When Your Spouse Becomes Someone You Care For

Marriage is normally a partnership. You make decisions together, divide responsibilities, and depend upon each other in different ways.

Cognitive decline can dramatically change that balance. You may find yourself managing appointments, medications, finances, transportation, household decisions, and responsibilities your spouse once handled. You may be answering the same question repeatedly or making decisions the two of you would once have made together.

Eventually, you may find yourself asking a painful question: Am I still a husband or wife, or have I become a caregiver?

The answer may be both.

That can be difficult to accept. You still love your spouse and may still see much of the person you’ve known for years. But parts of the relationship you once shared may no longer be possible in quite the same way. Acknowledging that doesn’t mean you’ve given up on your spouse or your marriage. It simply means you’re being honest about what has changed.

Love and Resentment Can Exist at the Same Time

One of the greatest burdens caregivers carry is guilt. You love your spouse, so you think you shouldn’t feel angry. You promised “in sickness and in health,” so you think you shouldn’t feel exhausted. You know your spouse didn’t choose this illness, so you feel terrible when you become impatient or resentful.

But you are human.

Caregiving organizations recognize that anger, frustration, sadness, grief, guilt, loneliness, and resentment can all be part of caring for someone with cognitive decline. So let me say something I often tell caregivers: Don’t add unnecessary guilt to an already difficult situation.

You can love your spouse and hate what has happened to your lives. You can be grateful for a good day and still grieve what you’ve lost. You can be committed to caring for your spouse and desperately need a break from caring for your spouse.

Those things are not contradictions. They are part of living with an extraordinarily difficult situation.

You May Be Grieving Someone Who Is Still Beside You

When someone dies, people recognize grief. They send cards, bring food, call, and acknowledge that something terrible has happened.

Cognitive decline can create a different kind of grief. Your spouse is still sitting across the table from you, but you may miss the conversations you used to have. You may miss asking for advice, being cared for instead of always being the caregiver, or the physical and emotional intimacy you once shared.

You may simply miss who the two of you used to be together.

The Alzheimer’s Association recognizes grief and feelings of loss as common experiences for spouses and caregivers as cognitive decline progresses. Allow yourself to grieve those losses. Grieving what has changed does not mean you love your spouse less.

Your Marriage May Need New Rules

If your spouse’s cognitive abilities have changed, some of the ways you once related to each other may need to change too.

For example, repeatedly correcting a confused spouse may accomplish very little except increasing frustration for both of you. Sometimes reassurance is more important than correction. At the same time, don’t take over everything simply because it is faster or easier. If your spouse can still participate safely in household activities, decisions, hobbies, or familiar routines, look for ways to preserve that involvement and independence.

Ask a different question: What can we still do together?

Maybe it’s listening to music you’ve always loved, looking through photographs, working in the garden, taking a walk, folding laundry, or sitting outside with a cup of coffee. These things may seem small compared with the life you once shared, but they aren’t. They are ways of remaining husband and wife when so much of life is trying to turn you into patient and caregiver.

Don’t Disappear From Your Own Life

This is where devoted spouses can get into trouble. Someone you love needs you, so naturally you begin putting that person’s needs first. Their doctor’s appointments come before yours. Their medications, meals, safety, and comfort become your responsibility. Friends call less often because you’re rarely available, and eventually you may stop doing many of the things that once made you feel like yourself.

Little by little, the caregiver can begin to disappear. Please don’t let that happen.

Long-term caregiving can take a real physical and emotional toll. The American Stroke Association encourages caregivers to protect their own health, maintain medical appointments, stay connected with other people, get adequate rest, and ask for help. Caregiver burnout is real, and your health matters too.

Taking care of yourself is not abandoning your spouse. It may be one of the most important things you can do for both of you. If your health is beginning to decline, tell your physician what is happening and explain the caregiving responsibilities you’re carrying and the stress you’re under.

And when someone offers to help, give them something specific to do. Ask if they can sit with your spouse while you go to an appointment, pick up groceries, or give you a couple of hours to have lunch with a friend. People often want to help but don’t know how.

Tell them.

Find People Who Understand the Problem You’re Actually Facing

Traditional marriage counseling can be valuable, but cognitive decline creates problems that traditional marriage counseling may not be designed to address. You may need someone who understands neurological change, caregiver stress, grief, dementia, stroke recovery, or the particular condition affecting your spouse.

Start with the medical professionals already involved in your spouse’s care. Ask whether a hospital social worker, case manager, neurologist, rehabilitation specialist, or other professional can connect you with caregiver resources. Also look for caregiver and condition-specific support groups. Even when another person’s diagnosis is different from your spouse’s, you may discover that many of the marital and caregiving challenges are similar.

And sometimes the person who helps you most isn’t the expert with another set of instructions. It’s the husband or wife sitting beside you who says, “Yes. I know exactly what you mean.”

When Church Doesn’t Feel Like a Place of Support

For Christians, there can be another painful part of this experience. You may sit in church surrounded by people and feel completely alone.

Churches often know how to celebrate victories. We know what to do with the testimony after the prayer has been answered. We aren’t always as good at knowing what to do with the person whose situation isn’t getting better.

If that has been your experience, I’m sorry.

But don’t assume that because your church doesn’t have a program for what you’re facing, no one there can be a resource. Look for the people who can listen without trying to fix you. Hold on to the friendships that are valuable. Someone who can sit with your spouse, bring dinner, run an errand, pray with you, or simply let you talk may be providing a greater ministry than they realize.

And remember that God is not measuring your faith by how cheerfully you carry an impossible load. He knows what you’re facing. He knows when you’re tired. He knows the difference between a lack of faith and exhaustion.

You do not have to pretend with Him.

Holding Who You Were and Who You Are Now

Perhaps this is one of the hardest parts of loving a spouse through cognitive decline. You remember who you were together. You remember the person who made decisions with you, laughed at the same jokes, remembered the family stories, shared the responsibilities, and dreamed about the future.

And you are living with who you are now.

Don’t spend all of your strength trying to force today’s marriage to look exactly like yesterday’s marriage. Some things may improve. Some abilities may return after a stroke or respond to rehabilitation. Other changes may remain or progress.

Your task is not to pretend nothing has changed. It is to find the best way to love each other within the life you have now.

There may still be laughter, affection, music, touch, memories, companionship, prayer, and moments when you recognize something wonderfully familiar in the person beside you. There will probably be very difficult days too.

On those days, do what you can. Accept the help you can find. Take care of the person you love, and take care of yourself. Release yourself from the guilt of not being able to do this perfectly.

You are doing your best, and sometimes that is all you CAN do.

This problem is too big to face alone.

So don’t.

Need Support? Start Here.

If you are caring for a spouse experiencing cognitive decline, you don’t have to figure everything out on your own. These organizations offer information, caregiver support, and help finding additional resources.

• American Stroke Association — Resources for stroke survivors and family caregivers, including support groups, caregiver information, and the Stroke Family Warmline at 1-888-4-STROKE.
• Alzheimer’s Association — Support for spouses and caregivers dealing with dementia and cognitive decline, including a 24/7 Helpline at 800-272-3900, local resources, and support groups.
• Caregiver Action Network — Practical resources and support for family caregivers, including help with caregiver stress, navigating care, and caring for yourself.

If your own physical or emotional health is suffering from the demands of caregiving, please talk with your healthcare provider. Your health matters, too.