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.
24 thoughts on “Be Kind, Not Right”
So glad I know you now and can be experience these exquisite, authentic renderings of a difficult path–and lend you any support I can from here.
Thank you. I guess we always knew this day would come. Kinda hoped it wouldn’t though. (Is this Nancy L or W?)
I gave you a little something…and then you doubled it and gave it back. Thank you for always enriching and “regifting” with such powerful insight and honest vulnerability. This quote from Rebecca—“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”—well, that explains my last 16 months and brought strong tears of stunned realization. What a long strange trip it’s been. ❤
I’m glad I could give something back to you. You have been so helpful to me. My sister Jo Ann thought your ten tips were brilliant! And that I’m lucky to know you. I am lucky! Thank God for rocking chairs, and that we chose the same moment to occupy them. The moment could have so easily bypassed us. It was meant to be.
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Gretchen, So sorry this week has been a turn into uncharted territory. Just want to give you an encouraging word to keep on keeping on, right or wrong, kind or impatient, trying to let go… It’s very hard work and i applaud you on your journey, being there for your mother thru the confusion, fabrications, accusations. You haven’t mentioned ‘inflection’ but i always found with patients who had dementia / alzheimers, they were so able to sound convincing about things you knew better about and could be so accusatory. So hurtful. so sad. May your day of Thanksgiving include gratitude for this time of communing with your mother and may there be grace for this particularly challenging time.
Thank you, June. I didn’t know the word “inflection,” but now I do! Yes, that, too. Happy Thanksgiving to you. I’m grateful for your friendship.
You know I’m with you so just let me say that you found a beautiful, sensuous (in the sense that it can be experienced viscerally through your words) way to share with those of us who love you, travel with you, or just read you your experience at finding yourself in this new place of dagger sharp sadness and new requirements that ask you to stretch your Spirit and Psyche yet again.
Not the last day
But a new day
Is it Tuesday?
I’m here, Mother.
You know, you and your Mother together have given birth to something that matters. Your words, that clearly matter. She likely may not ever understand that, and right now you may think you are just living it. But it is no small gift to have given the world or at least given to those of us who love you or follow you or just read you.
May God fold you in Her loving arms tonight and always.
You know I love you, right?
The journey of “following” her lead…that’s it…the path of kindness. Hmmm…it’s hard, THIS part of the journey to surrender. I am SO grateful you have all those around you who are witnessing your mom WITH you…hospice, your sisters. Please know I think of you often and in my imagination, envision both moments of tender connection for you and your mom, as well as grace to be with what arises. May the fullness of this full moon this eve, touch your soul lightly. Hug!
And you, who knows and understands, with me on the journey. I will look for the moon. I hope it’s one that shines down the valley out my bedroom window. Sometime it’s high over the house and I don’t see it. Maybe I will go looking for it. I think it’s getting time you made a Centralia visit :-D. xoxo
Your thoughts and thinking and living right now are so close to the bone you breathe God. You are sharing a thin place with us and I am listening.
Well, that made me weepy. Thank you, dear Amelia. My journey doll has been sitting in my bedroom window sill since I moved back here. She’s getting faded, I’m afraid, but I think of you every time I see her watching over me. Which is every morning and every night.
I just have to say that this comment touched me, too, in thinking about you, Gretchen. The best description I’ve seen of your sharing
Even putting on someone elses shoes is hard, tying the laces harder, walking nigh impossible. Know that you are lovedxxxxxxxx
Thank you, dear Lou. I miss you so.
Your situation sounds very familiar. When my mother-in-law was slipping ever deeper into dementia (and Alzheimers) she tended to periodically sort of fall off of a mental cliff separating two plateaus. The event of each fall was pretty traumatic to those around her, but each time she developed new mechanisms to deal with her new “lower” plateau.
It can be hard to deal with someone who “remembers” things that didn’t happen, but it is possible, although painful. As I can see your are experiencing, the hard part is letting it flow over you by admitting your perceived, but not actual, failure. Don’t ask how I know this.
Just remember, you are doing your best.
I survive on truly believing I’m doing my best, however imperfectly. Thank you for the reminder. And I know how you know 🙂 Tonight my mom was upset that no one told her she had dementia, she learned on a tape she’s listening to, she said. (I don’t think that’s current, if at all.) What do you say to that? I asked if it would make a difference if she were told that (not that she hasn’t been, though not in so many words). She said yes, because she didn’t want her daughters to have to take care of her. I said we chose to and it wasn’t her decision. So there you have it.
There is seldom a week that goes by that I do not tell your story, albeit briefly, to someone. Every post resonates with me here in NC, providing either assurance that this is possible or a more reasoned way to look at the responsibilty of caregiving. Even your recent listing of helpful books has made its way, in part, to my Christmas wish list!
Know that you are part of my journey and I am part of yours, both seekers of stamina, patience,
and understanding. Thanks for the companionship.
I wish we could have known each other, Lynn. We do have stories to tell, do we not? I’m glad the book list was helpful! Knowledge is power. I’m glad to be on the journey with you. I don’t believe I will ever say I was grateful for this time; I will say I learned a lot. And perhaps I will be grateful that I didn’t stay far away. Hmm. That’s different from saying I’ll be glad for the opportunity, right?
When my father took a turn for the worst in England, I jumped on a plane and went to him. Initially he was so happy and grateful as I cooked and cleaned for him. This for me was when “we could finally get to know each other”….I was willing to drop my life in the States to gain something I had never had from my father..his attention and his love. But, as time went on – just a matter of days his behavior returned to his normal self…dementia set in just enough for me to know I must excuse his mean words – his eyes would burn holes in my brain as he spat out his insults into my face during his temper tantrums.
I am not strong enough to care for my father….He is way stronger than I am because he doesn’t care. (or thats how it seems). He experiences no remorse or guilt. Just wakes up the next morning like nothing happened whilst I am left nursing myself rocking back and forth in a corner somewhere. I tried, my brothers have tried, but the price is far too high and I am not proud of that.
You are being strong Gretchen. And you are both being Kind and doing the RIGHT thing. I commend you.
Oh goodness, Jo; what a sad story. I’m so sorry. I couldn’t do it if my mother were like that. And we should not expect it of ourselves. It robs us of the relationship we once had with our parent, flawed though it may be. My mother could not take care of her mother for the same reason. She is still flogging herself for it, but that was her truth. She tried, it wasn’t possible; so they moved on the Plan B. And that is okay. Love to you.