Caregiving For a Spouse with Dementia

Caregiving for a loved one with dementia is a difficult, taxing, and stressful job.  When our loved one is also your spouse, many feelings can arise as we “lose” our husband or wife to dementia.  You might be accustomed to partnering with your spouse on activities or dividing household responsibilities, and now they are becoming dependent on you for everything. 

They aren’t the same

Your once strong husband who could fix anything is unable to recognize that the trash needs to be taken out or that a sprinkler head is broken.  His frustration results in verbal outbursts which make him difficult to manage. Your wife who was a prolific reader and could cook for an army can’t remember to turn off the stove top and keeps packing a suitcase to “get back home” and repeatedly for fear they will be taken away.  The daily and nightly demands of caregiving can lead to stress, social isolation, anxiety, and depression.  How do you run a household, get enough sleep, attend doctor appointments, AND supervise your spouse 24 hours a day, 7 days a week?  Usually, the caregiver’s physical and emotional health deteriorates.

Losing your spouse while they are still living

In addition to the custodial demands of caregiving to a spouse with dementia, caregivers are often mourning the loss of their marital relationship to the one they love.  Individuals with dementia can have personality changes and unusual behaviors that just don’t make sense to the caregiver which can be unbearably frustrating and sometimes dangerous.  Relating to your spouse in the way that sustained decades of marriage can be inexplicably and forever changed.  Often, the caregiver loses their sense of intimacy and familiarity with their spouse as they experience the death of their spouse as they knew them, while they are still here.

Conflicting emotions

Sometimes spouses find themselves in the caregiver role on the heels of an unhappy or complicated marriage.  There might be anger and resentment for a past with infidelity, substance use, or abuse.  These issues can exacerbate an already stressful situation and heighten the emotions surrounding caregiving.  Sometimes caregivers are juggling the additional stresses of adult children and their response, or lack of responsiveness, to their parent with dementia.  Medical and financial issues can become immobilizing as caregivers find themselves handling responsibilities their spouse always did or are taxed to fund necessary help.

What can you do?

1. Find ways to take a break. 

• Hire a “sitter” or ask a family member or trusted friend or neighbor to spend a couple of hours with the care receiver so that you can take a nap, pay bills, or get to an overdue doctor appointment. 
• If you can’t get away, put your loved one in a safe part of your home with something to occupy them and take a 10-minute break in the other room. 

• If your patience grows short and you feel like you are going to explode, walk away for a moment and take a mental “time out” by counting to 10.  Ask your loved one join you on a walk or drive in the car if they are safe to do so. 

2. Ask for help.

• Remember, adult children can be expected to participate in the care of your spouse to help shoulder some of the responsibility.  You do not have to be expected to care for your spouse alone. 
• If you still feel like your emotions are getting the better of you, that is when you need to seek help.

3. Consider using caregiver counseling services.

• Alzheimer’s Family Center has been awarded a generous grant by the Archstone Foundation to provide a fixed number of counseling sessions to caregivers free of charge.  Our licensed therapists who are specialized in the unique demands of caregiving to someone with dementia can help with problem solving and understand the disease process.
• In addition, our therapists can help you address your specific worries, as well as, work through the wide range of emotions that come with caregiving.  Let us help you to be the best caregiver you can be.   

Call Alzheimer’s Family Center at (714) 593-9630 today to take advantage of free counseling for all caregivers. Your loved one does not need to be affiliated with Alzheimer’s Family Center to partake in counseling services. They only need to be a caregiver to an adult with a memory impairment.   

This post was written by Andrea Lindquist, LCSW, Outpatient Clinical Coordinator at Alzheimer’s Family Center.