slowing down

Being that I live a couple hours away from my parents I don’t get to see them as often as I’d like. I do call frequently but phone conversations are mostly for catching up. Just the usual check-in on the latest happenings, maybe some updates on the grandkids, small talk about the weather. For several years now Mom has been in the habit of keeping her phone conversations quite short, handing the phone to Dad to do most of the talking after just a minute or two. I’ve learned this is one of the signs of increasing dementia — pulling away from social contacts, friends and family alike. It makes sense when you think of it, when you know something of what’s happening in the brain of an Alzheimer’s patient. She struggles with conversation and remembering words, and now even remembering the topic at hand or the last sentence. It makes conversation often very frustrating and embarrassing for her. It’s much less stressful for her to keep phone conversations brief. When she first started doing this I struggled not to take it personally. Even my boys noticed her unwillingness to engage and would ask me why Grandma didn’t seem to want to talk to them anymore. I’m so thankful for the many resources available to educate me on what this disease does to a brain. We spend our lives living with ‘normal’ brains to the point where we take so many things for granted. It can be extremely difficult to understand the words and behaviors of someone living with Alzheimer’s because we operate with many unconscious and unquestioned beliefs on how brains operate. When someone’s behavior toward you changes, it’s natural to try to process it based on the largely unexamined beliefs and habits of interactions we all develop as we grow and live in the world. But brains which are changing due to Alzheimer’s, or some other form of brain disease, don’t operate like normal brains. This is a very important thing to understand when it comes to dementia. I encourage everyone who has a loved one dealing with this disease to do some reading and study into how the brain (and therefore interactions and words) change and why. It provides a gateway from frustration to compassion, from misunderstanding to understanding.

Yesterday my husband and I invited my parents to join us on a day trip to a small vacation town a few hours from where we live (they’re currently staying briefly at their second home which is not far from us), giving me the chance to spend the whole day with them. A few days before this I had been doing more research into Alzheimer’s and how it affects behavior after my Dad had called me with another story. Being her primary caregiver, there’s a lot on his shoulders. She’s so easily frustrated and agitated now, and in her confusion and frustration she lashes out at Dad. Although he knows this is common with the disease it’s still extremely difficult to deal with. Here’s an example — recently Mom opened some mail they’d received from State Farm Insurance. “What is this?” she began with Dad. “Why are you spending all this money?? You’re always spending money!! It’s out of control!!” She was very angry with him and could not be consoled (which is another hallmark of this disease — there is little-to-no chance of reasoning with a person who has Alzheimer’s as they no longer have the capacity to reason they once had). Dad responded, “This is our car insurance. We’ve had State Farm Insurance for years! If you look in your glove compartment you’ll see the State Farm insurance card in there.” But this only angered her more. Her emotions get stuck in her brain now like a stubborn skip in a record. She just can’t get past them no matter how reasonable or clear any facts or evidence to the contrary are. If you do some reading into how best to deal with dementia patients, you’ll see the standard recommendation is to not argue with them, no matter how crazy their rants, because they no longer have the capacity to reason or change their views. Trying to reason with them only makes them more agitated since their brains can’t process that way anymore. It’s far better to just do your best to go along with them. If their ranting is very angry and full of personal attacks (not uncommon!), the advice is to simply apologize (calmly) and then try to re-direct the person’s attention to something less distressing to them. It’s very sound advice and I can tell it you works. Still, it doesn’t lessen the stress on those who deal with this on a daily basis (thinking of Dad here).

As I was digging for resources to send my Dad the other day to help him learn to deal with her increasing episodes of difficult behavior, I came across this YouTube video — It has all the usual recommendations, but there was one part of the video I was particularly glad to have seen before our day trip yesterday. I watched it play out plain as the nose on my face as I conversed with Mom throughout the day and watched others trying to communicate with her. The part of the video I’m referring to starts just after the 5:00 mark. It describes how the brain of an Alzheimer’s patient is no longer able to process words and meanings as fast as it used to. There was a point yesterday when Mom practically articulated this very thing when Dad was trying to explain something to her. It was a long explanation, involving a lot of words and steps and she was having great difficulty trying to understand. As her frustration climbed she finally blurted out “Slow down! Go back to the beginning! I can’t keep up with what you’re saying!”. Dad wasn’t talking fast at all, and was trying to explain as clearly as he could, but Mom’s brain needed time to process each step of the explanation. I could see this in operation with her all day, in fact.

She’s so much slower than she used to be, not just with comprehending conversation but also with her body movements. It’s not that she’s any more physically feeble, but her confusion so easily overtakes her now, slowing down her pace and causing her stop often trying to figure out where she’s at, what she’s doing. She doesn’t recognize familiar landmarks or situations like she used to. I can see that certain situations make it worse, while others make it better. When she’s home and in a familiar place she’s able to function much better. But when there’s a lot of change happening (change of scenery, change of conversation topic, moving through crowds or in unfamiliar places) it triggers “lost mode” in her brain. She becomes confused, anxious and easily frightened or agitated. Our day trip yesterday thrust her into a lot of unfamiliarity. The sidewalks were crowded with tourists, the streets were unfamiliar. Even though she’s been to this town many times before, and even though she knows she’s visited there before, it’s not a place she’s spent a lot of time at so it’s slipping into the ever-increasing list of places and situations that used to be familiar but no longer ring a lot of bells for her.

Thankfully, much of the day yesterday was spent just sitting in the car making the long drive to and from the tourist town. My Dad and husband were in the front seats and I sat in the back seat with Mom. This allowed us to have some semi-private conversation. At one point Mom confided in me about her fright and worry over her condition. She reiterated her now-frequent plea to move into a retirement or assisted care facility, reminding me once again that she wants to move into facility on her own and doesn’t want Dad to move in with her. She’s been asking openly for this since last July. A full year now.

Her wish to move into a facility on her own has been something we’ve been thinking about and struggling with since she first brought it up. For a long time I felt resistence to it, mostly because it’s clear to me that she needs Dad’s help, and he needs hers as well. They support each other, and when Mom is not in the throes of a dementia-fueled episode of delusions and verbal attacks, she will easily and very sweetly speak of how kind Dad is, how sweet he is to her. And although I know Dad can sometimes struggle with handling her difficult behavior in the recommended ways (who wouldn’t? It’s perfectly understandable), he’s very, very good about being as helpful and as non-triggering to her as he possibly can. It’s clear they love each other, but when her dementia symptoms are triggered it’s a truly miserable situation for both of them.

Some months ago my opinion about whether mom should live on her own in a facility started to change. I can see that Dad’s stress and anxiety over what’s happening with Mom is really starting to affect his own health. He worries about her constantly. He walks on eggshells every moment of the day in his efforts not to trigger her. He’s reluctant to leave her alone because increasingly something will frighten her or cause a panic and she’ll call him, her voice full of distress, begging him to please come home quickly. Although I do my best to educate him about Alzheimer’s and how to deal with difficult behavior and hurtful words, he struggles mightily not to take it all personally, always feeling guilt and responsibility for her outbursts even though he knows “it’s the dementia talking, not Mom”. The fact that she wants to live alone, without him, is particularly hurtful to him, I know. Understandably, he has a hard time seeing her wish as anything other than a deeply personal rejection.

But after spending time with Mom yesterday, watching her struggle to understand words, seeing her so lost and confused so much of the time, I’m seeing now that her wish to live alone is not born of rejection, but of love. I know she can’t articulate this anymore, so I will speak for her. She loves Dad very much, and she knows he loves, her, too. But the Alzheimer’s is causing changes in her brain, her beliefs and reactions that she’s unable to stop. I know she’s aware, to some extent, of her behavior and words toward Dad. I know because Dad has told me that sometimes in her tears and raging she’ll lash out at him with words that say as much. But her dementia-altered brain is unable to change course. There’s no stopping it. She had a difficult time controlling her reactions anymore. This is both scary and demeaning to her.

When she confided to me about her fears yesterday she was very firm and clear that she’s not just ready to be in an assisted living place, but that she feels very much she needs to be. She told me how she’d gone to the gas station the other day to fill up her car, but when she got out and looked at the gas pump she had no idea what to do or how to fill her car up. She said she stood there a long time trying to remember but couldn’t. She had to call Dad to come and help her, and told me that they now have an agreement that he will keep her car gassed up so she doesn’t have to put gas in it anymore. This is just another of the increasing stories of how she’s forgetten how to do a task which she once did without much thought at all. This frightens her, and understandably so. Dad has also told me that cooking meals is extremely frustrating for her now as she forgets where things are in the kitchen, or will forget various ingredients at the store, or how to do certain things she always used to do. I know she also feels very bad about how much Dad is having to step in to do things that she can no longer do. This is another reason why I believe she wants to live alone – to relieve Dad of the ever-growing task of taking care of her. This is also totally in keeping with how she’s always been, even before the dementia set in. She hates to be a burden to others. Really hates it.