The title of this blog and its parent chapter in my book was something I heard from a support group member that really helped me understand what it must be like for a person living in the late stages of Alzheimer’s disease.
Put yourself in this scenario as I broaden the picture for you: Imagine waking up in a strange hotel room. Nothing looks familiar. You don’t recognize the furniture, the pictures on the wall, or even the scene outside your window. The television is playing, but it’s in a foreign language. You don’t know how you got there. A woman that you do not know enters the room without knocking. She’s speaking loudly in a foreign language as she walks closer to you. Still talking, she is now invading your private space. Then she reaches out and starts to untuck your shirt. You push her away and try to leave, but all the doors are locked. The strange woman undresses you and changes your clothes as you continue to resist her. In the end, you give up and sit on the bed and watch the foreign language television shows. The next morning, the whole scenario plays over again, but it’s in a different hotel room, with a different stranger entering your room. Every day. How would you respond?
This must be what it’s like to live with late stage dementia—confused, frustrated, and feeling violated by their surroundings every day. And it explains so many difficult behaviors in this stage. They fight or try to leave the situation. It can be dangerous for caregivers, if the loved one is home, or dangerous for residents and staff at memory care units.
Memory care units have an obligation to keep staff and residents safe. Staff are trained on how to manage these behaviors using different techniques. I witnessed amazing skill from staff who could swiftly change Harvey’s clothes, all while he was struggling against them.
If behavior modification doesn’t work and there is still concern, the memory care facility may send your loved one to a geriatric psychiatry unit to see if medication is indicated. If you, as a caregiver at home, experience behaviors from your loved one that are dangerous to yourself or to him or her, you should discuss it with your physician. If it’s an immediately dangerous situation, you should accompany your loved one to the emergency room where he or she will be examined and possibly admitted to a geriatric psychiatry unit.
So what kind of behaviors might trigger such an admission? Just as an example, Harvey had five such admissions in his two years in memory care: breaking a door while trying to exit a facility, not leaving another resident’s room when asked and redirected, gripping another resident’s wrist firmly enough to draw blood, “being in the middle of most of our behavior issues,” and causing another resident to fall out of bed when he crawled into her bed.
I had no control over how these situations were handled. I had no role in the decision making process. When I tried to ask for a certain geriatric psychiatry unit, I was always overruled for some reason or another. All of Harvey’s incidents were behaviors that would be considered normal and expected of someone living with dementia, but because they were placing the other residents at risk of being harmed, he had to be medicated out of them. I’m still not comfortable with this approach. It still makes me queasy. But I don’t know another option.
The exercise at the beginning of this post is an example of “entering their world.” It can lead to empathy and a better understanding of how best to interact with your loved one at this stage of the disease. A quiet tone of voice, entering their line of sight directly, asking permission to do things to them, and gentle touch all go a long way at easing their confusion. But even this may not be enough to keep everyone safe.