A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.
1. Diminish distractions.
2. Converse one-on-one.
3. Keep things simple.
4. Avoid arguments (this should be number 1).
5. Just keep talking.
I would also like to add:
6. Walk in their shoes.
7. Step into their world and speak their “language” (even if it makes no sense………………… my mom was only able to articulate herself using the words, “despierta America” and “la fruta”).
8. Take a deep breath if you get frustrated (because you probably will).
9. Talk to other family and friends about how to best communicate with your loved one. They might keep visiting if they feel like they’re actually helping or supporting the person with dementia.
It was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.
And they wonder why caregivers lose their minds…………………………
As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.
Haven’t you ever seen a baby cry?
No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.
I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.
So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:
Is she wet?
Is she hungry?
Is she thirsty?
Is she comfortable?
Is the music too loud?
Is she cold?
I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.
Or at least that’s what I think. I have three cats and a dog.
There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass.
It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.
We’re not meant to live in some damned and demented limbo-land.
And you people want to live to be 150 years old.
The mere thought of living to be 150 years old makes me want to cry.
Caregivers bear the brunt of a lot, which is why, in the process of caring for our loved ones, we need to take care of ourselves, too. Or so I tell myself every single day.
When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”
Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.
Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.
Letting go is not my thing.
This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.
Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….
I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.
I don’t expect either parent to be alive when I turn 40. That’s four years from now.
A reverse empty nest.
Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.
I am perpetually drowning in the minutiae.
“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.”
“Hi Kathy, Sure. How are you feeling?”
“I’m OK. I just miss my mom is all.”
“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”
“Should I leave my bag here?”
“I don’t think that’s necessary.”
My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.
A few seconds pass and she starts yelling.
“It’s me! Your daughter! I love you.” She’s either horrified by my presence or saying hello.
Hard to tell.
Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.
“Hey Margie, how are you? Have you been taking care of my mom?”
I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.
She obliges, of course.
I walk outside, talk with some of the caregivers, get in my car and drive to the office.
Just your typical Monday morning.