Demanding Dementia Arouses Divergent Emotions
- leannespencer1
- Oct 11, 2022
- 4 min read
Updated: Nov 7, 2022
Being a caregiver for someone with dementia can result in divergent emotions. Polarizing feelings of love and hate, compassion and repulse, confidence and apprehension can occur simultaneously. Maybe you've had a similar experience to mine.
Entering the tv room, I noticed he abruptly stood from his recliner. Fear was evident in his eyes.
"What are you doing here?" he shouted at me. "Get out! GET OUT!" he added, advancing toward me.
"Hey Simon, it's me, Leanne.
I came to see if you wanted to play a game of Bingo with a few friends and me," I replied.
He walked closer, his gait wobbly, and I feared he would topple.
Impulsively I wanted to rush to steady him, but I remained in place. Any further reasoning or movement by me would only escalate the situation. The hair on the back of my neck began to tingle as he continued to advance toward me. Concern and uncertainty were present in my eyes.
"We're closed," he continued to shout at me, "You can't break in here and expect me to feed you! If you don't leave right now, I'm calling the cops."
I then realized Simon's reality was somewhere other than the secure memory care facility he called home. His mind had gone to a place he knew well, the restaurant he had managed for nearly 30 years.
"I didn't realize you were closed," I replied, "I'll head out now. Can you walk me out and lock the door after I leave?"
He stopped and considered my request. "Okay," he mumbled. Saying nothing more, he followed me, not noticing me entering a secure door code
"I'm sorry for the mistake," I said as I left.
The door closed behind me. On the other side, I heard Simon mumbling about stupid kids and fiddling with the lock.
Delusions and hallucinations can be a reality for people with dementia. Simon believed I was an intruder, breaking into his restaurant after hours. My concern for his well-being had me torn with compassion, fear and empathy. So many conflicting emotions filled my heart. I was reminded that it didn't always go so well. Some days, medication was offered as the only solution.
Like my experience with Simon, you may also encounter erratic and unexplained panic and rage from your beloved with dementia. What might have once been okay may turn into a HUGE deal, with no visible reason. It is not a reflection on you. It is the uncertainty of dementia.
When caregiving becomes overwhelming or unsafe, find help. At that moment, it's okay to step away, take a deep breath and have a moment to yourself.
You may feel a gamut of emotions, and that's all right. Emotions are natural. Safely expressing emotion is beneficial to caregivers and their loved ones.
In a study on emotional expression, psychologists found that expressing feelings provides relief. Safely expressing emotions makes the feelings more manageable. Emotional manifestations also reduce the intensity of the feelings you’re experiencing.
Benefits of talking about feelings:
If you're unsure of your emotions, read each word out loud to help you sort out what you're feeling. There may be invisible emotions you didn't know existed inside you.
RESILIENCY RESOURCES
Caregivers need more resources to support them.
In a study on the emotional impact of dementia, researchers interviewed family caregivers and patients for their perspectives following a dementia diagnosis. They concluded there is a need for a "better understanding" of the experiences of dementia and "better supportive measures" set in place to meet the needs of patients and families.
Respite care for family caregivers resulted from studies like the one above. Non-profit organizations and government agencies often offer help. Some states include respite care as part of their Medicaid and Medicare benefits. Check with your state's department on aging to see what's available in your area.
Rachael Wonderlin, a dementia care professional, notes that everyone needs help when it comes to dementia caregiving. She gives four reasons for respite care:
It's an impossible task to do on your own.
It's healthy for you.
It's good for a person with dementia.
Everyone needs socialization.
If available, rely on trusted family members and friends. Having people who know and love you is an excellent resource, especially when feeling strong emotions. Trusted neighbors can also be your quickest support when a need arises.
Finding the assistance you need can feel overwhelming. If that's the case for you, here are a few beneficial organizations specifically for caregivers. Those receiving your call are knowledgeable and compassionate. They know the ins and outs of caregiving and are ready to help.
National Alliance for Caregiving 800-272-3900
Veteran's Caregiver Support Line 855-260-3274
AARP Caregiving Resource Line 877-333-5885
You may also find great educational information online. Here are a few online resources to help.
US GOV ALZHEIMERS.GOV
REACHING OUT
Even with all the planning, there will be times when you do not have the help you need. It’s acceptable to feel overwhelmed. Again, find a safe place to take a short break and seek professional help. Finding a reliable place for expressing your emotions is crucial to your health. Make it a priority.
If you or your loved one is in crisis, please call 988.
If you are considering taking your life or the life of another, please call 988.
You are vitally important.
Don't give up.
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