I’ve been thinking of starting a site like this for several years, but how do you begin at the end? Let me be more clear about that. It’s not the end-end. Not yet. My mother is still very much alive and likely to live for many more years, but her mental state is changing. As the dementia becomes increasingly apparent it’s causing changes in her that are alarming and disturbing. We’re actually still very much at the beginning of trying to deal with it and manage it, but at the same time, whatever this disease is that has eroded her cognitive abilities (no official diagnosis yet) it has eaten away at the person we all remember her to be and has brought some painful endings to the mother figure I used to know. This blog will be my account of this journey we’re on — myself and my father, my sister and all of our loved ones — as we cope with and make our way through the challenge of seeing my mother (I’ll call her K) go through this.
Let me give you a little background which figures prominently in our story. My mom’s mother died as a result of what was likely Alzheimer’s. She was never officially diagnosed and no autopsy was performed after her death so we don’t know for sure, but in her final year or two she no longer recognized family members and was confused much of the time. At the very end she was unable to feed herself or even chew and swallow her food. Watching her mother pass away like this was utterly terrifying for my mom and it became her greatest fear that she would go the same way.
And now it’s happening to her. Her worst nightmare appears to be coming true. It started maybe 5 years ago, maybe 6 or 7. Like so many of us, she started having trouble finding the right words during conversation, or forgetting small things. At the time we all chalked it up to old age. It didn’t seem all that abnormal. But over time the problem got worse. More words were forgotten more frequently, the small forgotten things started to grow into forgetting place names, forgetting directions and familiar landmarks. But the more these ‘forgetfulnesses’ started piling up, the more fiercely K denied them, quickly pointing out that her husband (I’ll call him A) forgets just as much as her. For several years this was her ‘out’ — deflecting from her forgetfulness by pointing the finger at A. We all played along with this and didn’t argue or challenge her. We just laughed and joked about it, but in private we all agreed that K’s memory was getting worse and worse, and it was looking like more than the usual old age stuff.
Some years before any of the word-dropping and forgetfulness began, my mom gave me a book — “Still Alice” by Lisa Genova. As she handed it to me she told me she wanted me to read it so I would know how to handle her if she were to ever get Alzheimer’s. I read the book and have read many more since, but while all were insightful in their own way none prepared me for what we find ourselves dealing with now. I think it’s partly due to the fact that dementia affects different people in different ways. It’s also partly due to the difference between reading someone else’s story where you’re nothing more than an observer, versus finding yourself facing the very real loss of someone you love, and all the accompanying personal challenges and issues it invariably brings up, not just for the person dealing with dementia but for close friends and loved ones, as well. I remember being similarly blindsided (though in a good way) when my first child was born. During the pregnancy people would tell me how I would love my child more than anything I could imagine. So I tried to imagine it. I tried to feel just how much love I could have for this soon-to-be-born child, and–do you know?–I actually thought I had a pretty good idea of what to expect! But no, I had no clue. Not even close! No amount of testimonials or reading parenting books or vivid imagination could give me even an inkling of the actual experience of the love I felt for my newborn child.
And what’s happening now with my mother? Not good things, I’m afraid. It’s been tough. Very tough. About a year ago I found a wonderful resource in the website and book, Contented Dementia. It struck me as a profoundly compassionate way to deal with dementia and it filled me with great hope that we could all accompany K through this journey in a way that would leave her happy and smiling. In fact, both my father and I had already adopted many of the suggestions in the book, just by our natural efforts in trying to keep her calm and not trigger her. We learned not to argue with her. If she reported something we knew to be incorrect we’d just go along with it and not challenge her story (because increasingly, in someone with dementia–at least with K’s dementia–arguing or trying to reason with them is nothing but an exercise in futility and only serves to get them very agitated and upset). If K did happen to get upset about something, we learned to simply apologize even if K was in the wrong. The apology was nothing more than placating to whatever delusion K was operating under, but it was far easier to simply apologize and play along than try to reason or argue. We all got very good at this, but my dad (being her primary caretaker) has to practice this with her daily. It’s not an easy task to live with someone who increasingly distrusts you, increasingly attacks and accuses you, saying some very terrible things at you and about you. It’s really beats you down emotionally to sit there time after time, listening to these attacks with head bowed, quietly repeating apologies. It’s come to the point now where apologies have no effect. When she’s on one of her ‘rampages’ (as we’ve come to call them) there is nothing that will stop them, and they can get quite bad. I’m afraid my mother is in a period right now of very difficult behavior.
You’re probably wondering about now, just what are her doctors are doing about this? Is she on any medication? Mood stabilizers? Here is something I can tell you for certain about dementia. It’s very, very messy. The more I talk with others and hear their stories, the more I realize it’s only the extremely lucky ones who go through this without much struggle. There’s also the complicating matter of good medical care, which seems ever harder to find these days. I can tell you we’ve been very frustrated with her doctors, but her own fear and denial is just as much to blame. Last year, without any testing (as far as we can tell) or even a well-documented visitation note from her doctor, she was prescribed the drug Aricept. But one of the peculiar hallmarks of K’s dementia is her increasing obsession with reading the fine print and warning labels on everything from pills to benign household items and then getting terribly scared. When she got her Aricept prescription filled she brought it home and then read through the fine print on the label insert. She didn’t like what she read and refused to take the pills. Her doctor noted on subsequent visits that she was not taking the pills but didn’t challenge her on it or follow up at all.
Recently–just a few weeks ago, in fact–I wrote a letter to her doctor detailing the changes we’ve seen in her memory and mood over the past 5 years. I had my Dad and sister look over it too, before sending, to be sure we were all on the same page about what’s happening. The letter finally prompted her medical clinic to call her in for appointment so they could conduct a proper cognitive assessment test with her. I had asked for this specifically in the letter, and also that she be referred to a neurologist for further testing if she scored what I expected she would. Sure enough, she scored solidly in the dementia range and was given a referral. But either she’s forgotten about it, or she’s choosing not to follow through. This is all further complicated by the fact that we’ve had to intervene in this way, with this letter, without her knowing. Because another hallmark of K’s current struggle with dementia is her strong belief, and subsequent anger, that A is conspiring with others and turning everyone against her. If she were to learn we had been in contact with her doctor about this it would mean a holy living hell of the mother of all rampages from her, and NONE of us wants to endure that! (See? I told you it was messy) So, as of now we’re trying to figure out what the best next move is. We’re not supposed to know about the cognitive test or the neurologist referral, and she didn’t tell anyone about it so we can’t very well say, “So, have you called to make an appointment with the neurologist yet?” Probably what I’ll end up doing is writing another letter to the doctor informing him of what’s happening, and asking the clinic to please call her to set up the appointment rather than waiting for her to do it. In the meantime, she is taking no drugs that might help, and any anti-anxiety drugs she used to take she is either no longer taking (probably because she got frightened from reading the inserts), or they’re not working for her like they used to.