Today is the worst day of Alzheimer's. Until tomorrow.
While you are in it, as a caregiver - and I think, too, as a dementia victim - the worst of it is always what you're experiencing at any given time on any given day. I used to go through stock answers when people asked me "how is your mom?" and one of those was "there are good days and bad days." But that was really a lie to make them feel better. Because there definitely comes a time when there are only bad days. There is surviving those bad days, but that by no means equals good.
It is human to lie. It is human to say "I'm fine" and not mean it. It is human to sugar coat. It is human to be empathetic and not want to impart your own grief on another person. It is human to protect their feelings while you're drowning in your own.
It is human to be jealous.
I recently found myself immersed in an Alzheimer's jealousy sandwich. This happens a lot, and I want to confess this flaw to you because I want to admit that I am human.
(Above images - - Left: Mom in 2013, early in her diagnosis,
Center: Mom and me holding hands 2019,
Right: Me and mom 2020, 2 years into hospice.)
I'm in a few different support groups for Alzheimer's disease, caregivers, and PCA (Posterior Cortical Atrophy). I am in a Facebook group for PCA, I belong to a monthly google hangout group for young women who are caregivers for their mothers (Thank you sponsor Seth Rogan and Hilarity for Charity), and I follow lots of hashtags on Instagram: #endalz #alheimersawareness #alzheimers #dementia #hospice #caregiving #thisisalz #alzheimerssucks #hilarityforcharity
Inevitably, amidst the other people walking this similar rocky path, there is someone further along in their journey with Alzheimer's, and there is also someone behind me on the rough climb. I realized recently that while I wallow in the misery of today, I have the capacity to be debilitatingly jealous of both those in the before and after.
I read a very touching tribute from a caregiver who had recently lost their loved one to Alzheimer's disease. I felt so deeply the pain and loss and sadness of this caregiver. This individual expressed what I know I will someday experience. That even when you are prepared for this loss, in some ways even yearning for it, it still comes as a shock. This family member that you loved for your whole life is gone. Even if they have been on hospice for months, or in our case years, it is still a surprising gut punch when they take their last breath. You can't really prepare for death. It is always going to feel like a loss that sucks all the air out of the room.
As I read this person's brave expression of grief, I very quickly went from gently, crying sympathetic tears to being consumed with raging jealousy. Why them? Why not me? We have been on hospice with mom for 26 months. We are on a first name, share vacation photos, and give each other birthday presents basis with our hospice nurse and CNA. They never get the opportunity to know their home hospice families like they've gotten to know us in over two years. It's practically unheard of. So here is my human flaw everyone. I love my mom. I deeply love my mom, and I do not want to lose my mom. But I am so jealous when I hear of any caregivers who experience the death of their loved one with Alzheimer's. Because it's been so long. It's been too long. My dad and I are exhausted. My husband and I feel trapped. We have emotionally prepared for this [imminent] loss for years, and the waiting is destroying us all while we feel stuck in a limbo because we cannot move on with our lives while she still breathes. It is a terrible, awful, hateful feeling to wish your own mother dead. I admit it here only to comfort the other daughter in my shoes who thinks she's the only one who has ever thought this. You are not alone. You are human.
Today is always the worst day of Alzheimer's. Until tomorrow.
I know that today, day 782 of hospice, day 2,551 since my mom's diagnosis, is another nightmare day. I can hardly bear it. Until tomorrow. Until the day she dies. When I know that something that I am scared to desire, will ultimately leave me helpless, sobbing on the floor, unable to make my legs work to pick me up again. It is horrifying to yearn for a grief that you know may destroy you...
On the flip side of the jealousy sandwich is when you take a minute to look over your shoulder. To hear the panicked stories of caregivers trying to navigate the earlier troubles of Alzheimer's. The wandering, the hallucinations, the refusal to eat, the falling accidents. These things haven't happened to us in a really long time. But while we were in it, it was the WORST. I spoke to another caregiving daughter whose own mom is a year or two behind my own in this journey, and her stories, paired with my own, (delving into the past through some old journal entries I revisited lately) flared up some new jealousy. In the same breath, literally the same day, of being jealous of a family whose loved one passed away, I was also jealous of this daughter who still has a mom who she can make eye contact with, who responds, who walks, who talks.
As I empathized with this woman, I also realized how insane it was to be jealous because for her TODAY IS THE WORST DAY! And wow, do I remember why. There was a year when my mom cried, sobbed, uncontrollably for at least 8 hours a day. I was hopeless to help. We went through a box of tissues a day, and no matter what I said or did, I could not help her stop. It was an excruciating feeling. Other days she wandered the house, trying to escape from me as I followed her around, trying to maintain her safety. She begged me to leave her alone, she demanded that I tell her who I was and why I was trapping her in this place (her daughter, in her own home). Those days when she didn't know me, and she yelled at me and screamed that I was a horrible person and I probably had no friends because no one could like me, such a "nasty person." Those days were hard slaps in the face. She would often crumble to the ground at these moments and while in the fetal position cry, pleading for her grandma, dead these 55 years, to please help her. And if I tried to lay next to her and put my arms around her to comfort her, she would flinch and pull away and meet my tenderness with hostility. My, perfect, angel of a mother - so cruel at times, trapped in an Alzheimer's prison.
When she wasn't crying she would frustrate me in other ways. She'd push me away and flail her arms if I tried to help her pull her pants down in the bathroom. She'd snap at me when I tried to stop her from using half a roll of toilet paper to wipe herself. She bemoaned my dad's abandonment of her on afternoons when I shared her time and space. "He's been gone for weeks! He doesn't love me anymore!" And no matter how many times I tried to tell her that he had only been gone for an hour, grocery shopping and that same morning he had helped her get dressed and changed out of her pajamas, she didn't believe me.
While I was in it, this phase was the worst. I wanted to be patient and love her, but mostly I was frustrated and at my wits end, an exercise in insanity when nothing you try to appease the situation makes it better. And yet, now, looking back, while I'm in the phase of feeding and changing the diapers of a vegetable who can't see me, greets my "I love you's" with silence, and continues to live and breathe with no quality of life left, I am jealous. I am jealous of the me from three years ago. Those situations were excruciatingly stressful. I even listened to a recording I made on my phone recently, and I was very angry at myself to hear the frustration, impatience and even a little cruelty in my voice.
I was not as kind to my beautiful, sweet mother in those moments as I wish I had been. Looking back, I wish I could go back. I wish I could do that again. I wish I could just hug her and love her and talk to her as much as possible while she could still answer back. Even if her answers weren't what I wanted to hear; hearing her voice would be amazing.
As I write this blog about my experiences as an Alzheimer's caregiver, I am feeling my way a little bit. This post about my "jealousy sandwich" is an effort to be more honest about my truth. I realize not everyone may relate to this, even those on a similar journey with their own parents. But I hope that this does help you if you ever feel jealous, if you ever feel angry, if you ever have "bad thoughts." I have been able to forgive myself today for being human, and I hope you can too.
Please email me if you need someone to confide in or have comments you wish to not share publicly. My email is firstname.lastname@example.org