Caring for a Spouse with Dementia

According to a new 2026 AARP report, in MN there are 840,000 Minnesotans that provide care for an adult loved one.   Together they contribute 480 million hours of care each year worth 11.1 billion annually. It doesn’t say how many hours are spent by spouses, but I am sure it’s a significant percentage as spouses do around the clock care.

Taking care of a husband or wife who has dementia is documented to be the most difficult type of caregiving there is.   You’ve likely heard the term, the long goodbye. For a spouse this is heart wrenching.  A spouse is saying goodbye to a part of their life partner on a weekly basis through many years of care. They lose them through the disease process repeatedly.

Statistics show that spouses can often die before the person they are caring for due to the emotional and physical toll of caregiving.

Emotional Toll of Caregiving

• Ambiguous grief -grieving someone who is present but psychologically changing.    Feeling alone when physically not alone, mourning the loss of things they are no longer able to do, conversations and laughter they are no longer able to have. This grief can be daily and repeated as abilities are lost.
• Depression – Symptoms can be persistent sadness, loss of interest in once enjoyable activities, feelings of hopelessness, difficulty concentrating and sleep changes.
• Anxiety/stress –about their spouse’s safety, their finances, disease progression and their own ability to continue caregiving. Being alert all the time to what their spouse is doing or needs to feel comfortable or less anxious. Balancing all their loved one’s demands often with poor sleep.
• Loneliness and isolation –Their spouse is often avoided by people that were once his/her friends. Things they used to do with other couples or at church or volunteering stop.  Social activities become difficult.  Staying home and isolated often becomes the norm.
• Guilt –Spouses can feel a lot of guilt through this journey.  For losing their patience, for being quick to get angry.   They often feel guilt when they do have time for themselves. It may feel like they aren’t doing enough, or they need to do it better. Sometimes people regret that they made the wrong decision for their loved one’s care.

Physical Toll While Caregiving

The emotional burden often affects physical health.  Long-term caregiving stress has been linked to increased mortality risk.   Choice Connections often receive calls from an adult child when a parent dies.  The son or daughter tell us they were not aware their parent was caregiving for a person living with dementia. Hospitalizations for a caregiving spouse adds additional burden to the caregiving journey for all.  Often there is not a plan when this occurs.   Having plan B is critical and where Choice Connections can really help.

Tips to Take Care of Yourself During Caring for A Spouse

If there is one point that needs to be remembered from this article for the caregiver spouse it is this…you can get through this and be a survivor!    How much it takes a toll on your emotional and physical health is to a large degree up to you.

Find What Brings You Joy

Your emotional well-being is critical to staying physically healthy to care for your loved one.

What reduces your stress and makes you smile?  Is it a bird singing in the backyard, children playing at the park, laughter with friends-laughter is one of the best stress reducers. Find those things that bring you joy to lift your spirits.  Playing music for you and your spouse may lighten the mood.

Staying Healthy Emotionally and Physically

It’s hard to ask for help.  But when it comes to your health, it’s critical you stay healthy to care for your spouse.  Put on your life jacket and then the life jacket of the other person.

• Get your checkups, go for your mammogram, keep your appointments for your health. It’s important! Who can hold you accountable?  Who is your health care advocate?
• Consider and choose a counselor you can talk to about your journey.  There are things you need to share with them that you won’t want to tell friends and family.
• Schedule check in appointments with your pastor/priest or spiritual support person.  Prayer, let’s you turn your anxiety/problems over to God and he can lift your burden.
• Meditation/Breathing.  We forget to breathe deeply. Focus on that when feeling anxious/stressed.  Would you consider meditation to clear your mind? Apps and an Apple Watch can help with that.
• How can you get 150 minutes of exercise weekly? Raise your heart rate and try and keep your muscle tone.  One of our clients shared she walked around her house carrying weights every day.

Task Help

The saying that more hands make lighter work is true in caregiving as well.

What are the tasks you need done and who can help? Make a list and think of who can help complete these tasks or how to make them easier.  Examples:

• Finances: Financial advisor, Daily money manager, Attorney. Is there a family member you can trust with money?   Dealing with money can be a stressor so having help with it is critical to emotional wellbeing.
• Shopping/Errands: Meal prep? Let’s Dish has wonderful meals. Sign up for delivery from grocery stores or do curb side pick-up. Who likes to clean within your friends/relatives.
• Home Maintenance/Cleaning: is there a teenager that needs some spending money for lawn mowing or cleaning your home.
• Caregiving help: You need time for you which means you need help with caregiving.   There are wonderful adult day programs in the Twin Cities.  Check our resources page for those.   We are happy to suggest home care agencies.  If your spouse has original Medicare the Guide program can help pay for that.  For a Veteran, some dollars may be available to pay for home care. When money is tight then enlist a neighbor or church friend to stay with your spouse.

Be a Survivor

The journey is unknown and long.   You can get through it and do so knowing that you did your best.   If you are a Christian as this writer is, there is comfort in knowing that someday you will see your Whole spouse again in their heavenly body. You are never alone.  Above all, reach out for help to lighten your load so you can be there for the things that matter most.