the insidious cruelty of dementia

Dementia is such a very cruel thing. I ache for my poor mother. She is frightened so easily and confused much of the time. Frightened and confused. Her emotional resources have never been strong or well-developed and the disease is wreaking havoc as a result, not only on her but on my father and I, as well. We are the ones who have been closest to her in recent years, and as many will tell you it’s the closest caregivers who bear the heaviest burden and the biggest, cruelest blows of the emotional lashing out, the harsh, abusive language and the most bitter tears. It’s a cruel, cruel disease, affecting not just the person with dementia but close family, as well, dragging all of us into the struggle in one way or another.

I’m learning that dementia can present differently in different people. While there are definite hallmarks of the condition, it expresses in ways as unique as the individuals themselves. In the case of my mother it seems the dementia has not changed her so much as greatly amplified the mental quirks and challenges she’s had all her life. For example, for as long as I’ve known her she’s struggled with anxiety issues, including a history of panic attacks. Fear has always been the cornerstone of her responses to anything unfamiliar. But as the dementia takes over she finds more of everything to be unfamiliar causing her even more fear, far more than she’s ever shown in the past. Her anxiety and panic episodes are now much more frequent and severe and only seem to be increasing. It’s heartbreaking to see.

It seems as though her window of reality is narrowing, as well. She doesn’t remember what happened just a short while ago, which makes each moment more challenging and confusing as she tries to figure out where she is, what’s going on, or even what she went to the store to get. This evening she called my dad, quite upset about a trip to the grocery store. Apparently it started when she got lost trying to drive to the store. This is a store she’s been to many times. Then, she went inside to buy a frozen dinner but couldn’t figure out where the frozen meals were. Finally, as she was making her way back to her car she couldn’t remember if she’d actually purchased the items, or if she had simply walked out of the store without paying. The whole incident left her very upset, confused and tearful. Episodes like these are happening more and more frequently. More fright and confusion. Sometimes these episodes bring her to tears and she seems to want to reach out to dad for help, like tonight, but other times it will trigger her and she’ll lash out in a rage. That, too, is a fear response, and I believe has much to do with her (again, lifelong) personality trait of hating to feel vulnerable and not wanting others to feel sorry for her or to give her help in anyway. Like I mentioned, the dementia seems to be greatly exacerbating her lifelong usual reactions, more so the negative ones than the positive.

Unfortunately for me, the combination of her dementia and its exacerbation of her personality quirks and neuroses has quite possibly spelled the end of our relationship. In the past few years as I’ve been researching dementia, people in the know have warned me that those closest to someone with dementia will very likely experience their loved one screaming the most horrible, hateful words at them. Still, no matter how many times you hear this it just doesn’t prepare you for the actuality of it happening. But this ended up happening to me just about a month ago, and to this day she is still refusing to have anything to do with me. We were hopeful at first that she would quickly forget the incident, but given her natural inclination toward fearfulness and feeling victimized, the emotional impact of the drama has imprinted deeply and here we are now, 4 weeks out and she still refuses to answer the phone when I call or open the letter of love and apology I sent when my calls went unanswered.

In my last post I mentioned the book and website titled ‘Contented Dementia’. I still believe it’s a beautiful and compassionate approach to take. I came across this article just today which follows along similar lines, “As Memory Fades Emotion Lives On.” I have been seeing exactly this with my mother, and was why I had been following the guidelines in the Contented Dementia material. Unfortunately in my mother’s case, she’s always had a natural disposition toward negative feelings in response to anything challenging or unfamiliar. It’s not that she’s always been a fearful, angry person. Most who have known her in her life would say she’s a very sweet person, and it’s true. It’s just that her default mode, when it comes to challenging or unfamiliar situations, has always been one of fearfulness and resentment. It seems now that the dementia has only amplified this. Despite the fact that she and I have had a very good relationship, especially in recent years as I put the Contented Dementia principles into practice, that brief episode last month which caused her to react so horribly has all but erased the many years of positive interactions and good memories.

I believe this is why she still refuses to talk to me, now a month since the incident between us. The emotion of what happened has imprinted in her mind. It’s all she remembers of it. Interestingly, even when the incident was happening I could see this unfolding as plain as day. Once her default mode of fear, anger and resentment took hold (pretty much immediately) there was nothing to stop it. No amount of “I love you’s”, no amount of gentle pleadings for remembrances of love and connectedness could break the dementia-fueled breakdown.

What’s done now is done. There’s no going back. As many will tell you, there is no reasoning with someone who has dementia. Dementia is a condition that affects, alters and amplifies that person’s lifelong identity and personality–it’s the raw material through which the dementia manifests. And it affects not just the person who has it, but the whole family and those who are closest.

It’s such a cruel, cruel thing.