If you’re a caretaker of a loved one with dementia, you know that their confusion typically results in many different questions. The more disoriented they may become, the more questions they may ask. They may ask about a job they haven’t worked in years. They might ask about a home that they were forced to move out of due to their condition. They may even ask about a spouse or other loved one who has been deceased for decades. 

Reasoning with Dementia Patients Rarely Works

As logical people, we’re conditioned to want to answer questions truthfully. When it comes to caring for loved ones with dementia, you’ll quickly realize that they’re rarely thinking logically when it pertains to the specifics of their immediate surroundings. They may ask where their cat is—though they themselves had to take the cat to be put to sleep 20 years ago. If you were to answer them logically and thus truthfully, you would likely upset them very much. The next day, they may ask about the cat once again—and thus force you to repeat the painful and confusing truth all over again. 

Compassionate Responses Rather Than Truthful Answers

So, how do you respond to tricky questions when the truth would only upset your loved ones with dementia? By responding with a compassionate response rather than a truthful one. It is also helpful to pivot the subject to a new activity to take their mind off such questions.   

The following are a few examples: 

Your mother asks about her cat Mittens who has been gone a long time.

• Truthful answer: “Mittens had to be put down over 20 years ago, Mom.”
• Compassionate response: “Mitten is sleeping. Let’s go for a walk.”

Your father wants to go home, though he’s had to move in with you due to his condition. 

• Truthful answer: Dad, you live with me now. We sold your house to the McKinneys. 
• Compassionate response: That’s very far away. I made up a room for you at my house and I’m making dinner for us tonight. 

Your husband wakes up in a panic because he thinks he’s late for work, even though he’s been retired for 15 years. 

• Truthful answer: You haven’t worked at that job for 15 years. You’re retired. 
• Compassionate response: You’re off work today. Would you like to help me with this puzzle? 

For most tricky questions for which a truthful answer would only result in upsetting your loved one with dementia, there are likely an array of compassionate responses you can employ. It’s likely worthwhile for you to have a few such responses at the ready so that you can avoid confusing or upsetting experiences. It’s also helpful to keep your compassionate responses consistent in case they recall what you've said in the past.

Hospice & Palliative Care Services in Tulsa, Oklahoma

If you or a loved one is looking for professional and compassionate hospice and palliative care in the Greater Tulsa, Oklahoma area, look no further than your friends at Cura HPC Hospice & Palliative Care.

Are you experiencing caretaker’s guilt or burnout?

As the caretaker of a loved one in need—whether this is a spouse with dementia or a parent with a serious condition, you likely feel as though the weight of their entire world is on your shoulders. While there is some truth to the weight of this, you may be feeling a secondary weight—a self-imposed weight of unnecessary guilt over experiencing pleasure for yourself during this time.

This may be a state unofficially known as caretaker guilt. This type of guilt is normal, but when left unchecked, can result in caretaker burnout. Identifying unnecessary guilt is very important.

Have you found yourself...

• Turning down friendly invitations to enjoyable events you realistically could attend with the right logistics?
• Taking up friends or family on these invitations but not being present during these moments because you’re too wrapped up in guilt over your loved one not being able to have similar getaways?
• Ruminating about all the various factors that could go wrong in the care of your loved one rather than what actually is occurring on a daily basis?
• Not giving yourself breaks or restorative getaways from caretaking because you feel guilty about your loved one not receiving such breaks or getaways from their condition?

If this sounds like you, take a minute to consider the following: 

In the grand scheme of your loved one’s care, is your refusal to enjoy pleasurable experiences helping or hurting your ability to provide quality care? 

If you’re truly honest with yourself, you’re able to see that being engrossed in guilt, rumination, and round-the-clock focus is more of a recipe for burnout than a lapse in care. In fact, if anything, caretaker burnout should be a greater concern than any imagined unfortunate event. 

How to Alleviate Caretaker Guilt & Burnout

Turn Off Your Automatic “No, I Can’t” Mindset

As the caretaker of someone with a serious condition, you’ve likely turned your personal “We’re Open” sign to permanently “Sorry, We’re Closed” when it comes to invites to outings you would enjoy. While it’s true that you likely have to turn down the majority of invitations, “no” shouldn’t be your default reply.

• Take a moment to consider if you’re reflexively saying “no” or if you could actually make it work. 
• Weigh the cost-benefit analysis of arranging a few hours of relief from a nearby sibling or close friend. (Spoiler alert: it’s worth it.)
• Don’t assume that you’re burdening others by requesting relief. You may even be surprised by how many people care about you and would love to help.  

Arrange a Regular Getaway

By now (and likely even before reading this article), you probably understand that your existing or impending burnout is not helping anyone—not your loved one, not your family, and especially not you. And you’re probably already coming up with excuses for not taking a break:

• I don’t want to deal with the hassle of finding someone to relieve me. 
• I feel selfish asking someone else to give me a break. 
• I don’t want to subject my loved one to the idea of me randomly leaving to get a break.

It may be true that getting someone to tend to the needs of this loved one at a moment’s notice would be hard on everyone involved. However, with a little planning and explanation, you can generate the initial momentum necessary for you to have a regularly occurring time to recharge. 

• Step 1: Realize that you need periodic breaks or getaways from your role as caretaker—not because you’re lazy or callous but because you’re human. You likely already realize the need for these breaks or getaways. 
• Step 2: Reach out to your close friends and loved ones—preferably individuals familiar with your situation—to inquire about who might be able to relieve you for a few hours a week so you can recharge. This may be as simple as sending a group text message to a handful of close friends and family members or even asking a close friend to call around for you. You may be pleasantly surprised by how many people offer their help! 
• Step 3: Plan your regular getaways. It’s best to choose the same times and days of the week so that it doesn’t take anyone by surprise. These getaways don’t have to be anything extravagant—even just coffee at a friend’s house, a trip to the library, to catch a movie, or a bite to eat at a local café. It’s best if these getaways are truly away from the house or care center—otherwise, you’ll never fully allow yourself to separate your mind and recharge. 

Help is Closer Than You Think

It's one thing to recognize that caretaker burnout is detrimental to everyone involved—doing something about it is something else. As we’ve mentioned before, you’re not selfish for wanting to periodically treat yourself. Taking the appropriate time to care for yourself will make you a better caretaker for your loved one. 

Hospice & Palliative Care Services in Tulsa, Oklahoma

If you or a loved one are looking for professional and compassionate hospice and palliative care in the Greater Tulsa, Oklahoma area, look no further than your friends at Cura HPC Hospice & Palliative Care.