We are in a new land this week; Mama has tumbled down the rabbit hole as unexpectedly as Alice did, and we are trekking through unknown territory on our way to Oz. It is strange and frightening. Confusion, agitation, fabrication, paranoia, accusation. She is not herself.
The details are not important. What is important is to try to untangle what might be the (w)holey rationale behind what she says, and how to respond to it. I hope I can shine a small circle of light—for that is all there is moving forward—on the uneven bricks, as those who have gone before shine it for me.
The hospice nurse came yesterday. Mama recounted conversations and events step-by-step: “I said…she said…I did..then this happened…they forgot.” She is very creative, I’ll give her that. She is not, I’m sorry to report, blissfully unaware. Laurel told us the long (fabricated) explanations of how something went down is her attempt to tell herself that she remembers details.
So how to respond when she tells me I did or said something I did not do or say? Or that she told me to do something that she did not tell me to do, and so I hadn’t done it and now she is angry? “It’s better to be kind than right; and you will lose all points of fact anyway” is number nine on my friend Elizabeth’s “Top Ten Tips for Dealing with Dementia.” Elizabeth walked this road with her father for many years, and continues it with her mother; she is a Friend of the Way. (More will be found here as time goes on; #10 is drink lots of wine.)
Let go of needing to be right. That. Is. So. Hard. Especially given all my life I have felt “not good enough” in my mother’s eyes. I spent a childhood trying to prove to her that I could get it right. I think I came here to live with her at least partially in an attempt to show her I could get it right. I have engaged in combat every time she tells me her way is the only way to do something, and I did it wrong. And now I have to flat out tell her I did get it wrong, when I didn’t? Oh, I never did get it wrong.
Rebecca shared this:
“In the months before death, we need to let go of all those things we wish we had or thought we needed in our relationship from our mother, father, husband or wife, children (whoever it is that we are dealing with losing), but didn’t get. It is too late. The person who is dying doesn’t have the energy or the inclination to address those issues. At this time I recommend we give what it is that we wanted. Turn the tables and give what you didn’t get but still need.”
I have felt for sometime that it would be easier to be patient if my mother’s cognitive dysfunction was more clearly dementia. We are there, and I think I was right. What I didn’t count on was that it would be so sad. If she were unaware, I could just be sad for those of us who love her. But it’s a double whammy having to be sad for her, too. This is not a new reality that she doesn’t know is different; she is desperately trying to cling to her old self. Saying, in the face of proof that she was fabricating an event, as she did yesterday, “I guess I have lost my mind,” might be helpful to someone willing to let go and trust others to take care of them; probably not to her. (And that was yesterday, not today.)
“The truth is that they are changed, but they are still very much here. We just have to meet them in the present, which requires a rewiring of sorts on our part. Our expectations must change.”
Dr. Bill Thomas, on his “Age of Disruption Tour.”
Dr. Thomas’s remarks in the quote I ran across are more about people who have forgotten who they used to be, and not—at least yet—applicable to my mother’s condition. Perhaps it will be later, and I will hold on to it and share it. But we are having to rewire ourselves to meet her where she is. We will pour out affirmation if that is what it takes. We will leave it to others to validate us. The time for her to do that is past. And when she does have moments of clarity, we will be grateful.
Handy Man Dan, who is helping her record thoughts and stories about her life, tells me they are full of the praise for me and my sisters that she has rarely told us to our faces. So, we will wait for the movie, knowing that deep within, she is proud of us.
I am hanging on to hope today that this tumble was due to the stress of the month—changing heating systems, her caregiver’s vacation, my vacation, new people around—and that she will get back to Kansas. Not pretty, but more real. Of course, Mama believes it was the small-dose anti-depressant she was on very briefly. Only time will tell if recovery hope is fantasy.
Julia, my sister caregiver in England, writes, “The basics: deep breathing, grounding by literally holding rocks, whatever it takes for her to feel heard; reminding yourself that even though it all seems to be going to hell in a hand basket, there’s a bigger picture and you just need to take care of you and be there for the ride with trust.” She reminds me that my people are out there holding onto the rim for me.
I am immeasurably thankful, on this day before Thanksgiving, for my mates on the yellow brick road. For my sisters: Rebecca, five minutes and a text message away; and Jo Ann for being willing to cross the country so I can have breaks like Hedgebrook and so she knows first hand what it’s like in the rabbit hole. For hospice, and for Mama’s doctor who listened to me and made it happen (asking to get us into the program when it was not clear Mama needed to be is the best thing I ever did for us). For Elizabeth and Julia and others who have gone before me and who are walking parallel brick roads. For you who read and for those who comment, making me know I am not alone at the tea party. For writers who have shared their experience in books.
“Everyday, at the moment when things get edgy, we can just ask ourselves, ‘Am I going to practice peace, or am I going to war?’”
To be perfectly honest, it’s exhausting doing battle to be right; and especially with someone with dementia, it’s been pointless anyway. My warring with Mama is over, her war with herself is in full swing.
And the sun keeps rising and the sun keeps setting.
Note: This blip turned out, we think, to be due to an anti-depressant hospice tried her on. She was on it only briefly, then covertly didn’t go off of it according to protocol. When it was out of her system, she returned to her pre-med self, depressed but more lucid.