Dementia can proceed slow and steady, or it can often have steep inclines. I’ve recently learned that when we’re immersed in our environment day-in and day-out, we don’t always see the continued changes as clearly as when we’ve been away for even a short time.
Seeing my mother after just a short time away has enlightened me into just how fast things really are changing. Picking her up from Hospice after four nights was almost like picking up a different version of mom. Her behaviors, attitudes, and capabilities are all so very different than they were less than a week ago.
The Changes
As I write this, I realize that everything I write about my observations is… well, observational and subject to bias – even if it’s unintentional. Maybe I just wasn’t seeing what was happening as clearly as after I’d had some time away? Here’s what I do know… she’s different than before I left.
Mom’s memory recall seems to have deteriorated significantly over the last few days. Even before I left, she would often ask the same question several times in the space of a couple of minutes; still, it seemed to be more frequent and consistent, and more pronounced now in areas I’d never have anticipated. Mom’s lived in this town nearly 35 years, but no longer remembers many of the street names – but I’d never have expected her to forget what her house looks like.
After leaving Hospice, as we were coming up on the house I asked, “Do you know where we are?” She looked around, shook her head and said that she didn’t. I asked her again as we were stopped in the road to turn into our driveway, but she still didn’t know. What really let me know just how far along she’s getting is when we were sitting in our driveway, 10 feet away from the front door and she still didn’t know where we were. I told her we were home; she looked at the house and commented that it needed washed.
As we pushed her wheelchair to her favorite living room chair, I said, “But now you know where you are, right?” She said that she wasn’t sure, so I reassured her that she was home, and that this was her favorite chair.
At the end of the evening, after helping her to bed, I settled in – having no idea that the biggest changes were just about to show themselves.
Sundowning
This is a term applied to dementia patients who have gotten to the point where their body clocks are no longer synchronized with the world around them. They tend to sleep all day and stay awake much of the night. This was something that was present in mom before I left but was suddenly so much more pronounced. My first night back left me with just over four hours of sleep.
Mom fell out of bed twice on the first night, encouraging me the next day to ask Hospice to bring out the hospital bed they’d asked me if I wanted. After these two events, there was the 2:00 AM event of mom calling for me. I came to see what was happening and she told me she needed to go in to get her blood drawn or she wouldn’t get that job. At this point, I hadn’t learned yet how I should be responding to these events. My response was to tell her that it was the middle of the night and that she didn’t need to go anywhere. She responded angrily, telling me that I just didn’t want her to get the job.
Just after 4am, I woke to her calls again. This time she needed to go to a nearby town but wouldn’t tell me where. She said that if I wouldn’t take her, she’d call a cab or call her sister to come get her. Again, I responded poorly, contradicting her perceived need and telling her she needed to go back to sleep. I had two things working against me here… my lack of understanding of the best ways to respond to these events, and the fact that by then I’d had just over four hours of sleep from being kept up almost all night.
I stayed up; she was asleep again in a few minutes. She woke around 5:30 am furious with me and telling me I needed to pack my things because she was kicking me out. She even said she was going to call the police to have me taken away. By this time, I was at my wits’ end, and without knowing it, responded perfectly. I agreed with her and told her I’d get ready to go – that she could go back to sleep and when she woke, I’d be gone. When she finally woke around 7am, she had no memory of anything that had transpired from the night before.
Sleep is a luxury that I remember well, but my nights are much different lately. I now have her sleeping in a hospital bed with bolster sheets that keep her from falling out of bed, but she still calls out to me many times through the nights and I go to check on her. I’m getting better at the whole “going back to sleep” thing, but it’s still not easy, and I now consider even 7 hours of sleep to be a blessing.
Delusions and Hallucinations
Mom now has active conversations with people in the room that I can’t see. Her conversations vary from laughing and joking to angry and heated. The other day she looked at me and said, “Where’s Rod?” It’s not the first time she’s asked me this. I replied, “I’m Rod, mom.” She laughed, pointed over at the empty couch and said, “That’s his name, too!”
She’ll often ask me who someone is that she’s seeing in the room or point at things she sees and ask about them. In one case, she pointed to an empty spot on the floor and asked, “What’s that?” I walked over to where she was pointing and she said, “Yeah, right there…” When I moved my had across the floor where she was indicating, her response was, “Oh, it’s gone now.”
Combative Behaviors
After reading about how to respond to dementia patients’ behaviors, I’m learning not to provoke her, so this is getting better. Responding by challenging a delusional belief can provoke an angry and combative response. I learned this the hard way over the first few days of this change, but after researching a bit, I’ve learned that we can defuse these situations by not challenging their perception and redirecting attention. For example, a couple of nights ago, mom woke me needing to go somewhere downtown. My response this time was, “Ok mom, but you woke up early… it’s 3:30 in the morning so they’re not open yet. Get some more sleep and when it’s daytime, we can go.” Relaxing, she said, “Okay,” and went right back to sleep.
Understanding What’s Happening
Mom’s brain is changing. Vascular dementia can restrict blood flow to areas of the brain, damaging or killing brain cells. This causes her brain to not function in the ways it used to and can impact both her perceptions and her ability to process information correctly.
The requirement here is for me to become a better caregiver. I’m learning all I can, both reading and talking to the Hospice nurses. Mom will only deteriorate – I need to adapt to her changing needs and help reduce her anxiety. I can’t deny that it’s a little harder on 4 hours sleep than it would be on 8, but I’m working each day to help her have the best experience she can.
Yes, Rod, it can be a challenge. Have you considered going on YouTube and checking out 528 hertz? This is a free, 9 hour recording that when played softly can be very soothing.
I have a lot of experience with palliative care. I’ve learned that especially when women say they feel a certain way to just listen. Don’t tell them they don’t have to feel the way they’ve just told you they feel. You can just say, “I understand. Tell me more about that.” Then, just let them talk. You might want to set a time limit to take care of your own needs. To end the conversation, just say something like, “I’ve got to go check on the kettle on the stove. Be right back.” Something neutral.
You are a good man taking care of your mother. You’re obviously very compassionate. Your mom is lucky to have you tending to her.
Thanks for this, I hope it can help other readers as well. I’ll be posting an update soon, but my mother passed away on Saturday night so we weren’t able to employ this option.