Grandma and Lionel ate Burger King kids meals tonight. They bought Lucy the Jack Russell Terrier one too.
“I don’t cook anymore because Lionel can’t chew!” Grandma explains to me.
“I thought he just got new teeth, Grandma?”
“Yeahhh, but they hurt. They don’t fit him right.”
She had already changed the subject three times. Grandma didn’t want to talk about the elephant in the room.
I don’t even particularly want to write about it.
“What did Lionel’s son say, Grandma?”
A pause, then my grandmother’s familiar shielded acknowledgement and dismissal of my question due to Lionel’s close proximity to her.
“Mom said he wants to put Lionel in a home?” I ask quietly.
I hear Lionel’s booming voice in the background, asking for mock help as Lucy tongue whips his face.
“Hold on a second,” my grandma says as I hear her small footsteps walk towards the bedroom.
She gets really quiet. “They want to put him in Walden Oaks. We went over there today to take a look, ” her voice quavers a bit, “but I don’t think he’s ready. It’s not time yet!”
My grandmother rarely cries. She comes from a generation where you don’t “burden” others with your emotions. You stay strong. Always. Maybe it is the pain she is experiencing with a recent bout of Shingles that is making her break down? Or maybe it’s her fear that once Lionel leaves the house she will be all alone? Or maybe, despite all the yelling and screaming at him, despite all the years of frustration, she simply will miss Lionel the person once he is gone.
“Grandma, but you yell at him all of the time because he’s not able to help you. He’s sick. It’s not a good situation. Won’t this be better?”
She has already regained her composure and changed the subject.
“Let’s talk about you. Why are you feeling so anxious?”
Why am I feeling so anxious? This is a question that I’ve be asking myself a lot lately. Though my anxiety has manifested into a concern for my safety due to living in the more “rugged” part of Austin, I can’t help but feel that it’s been compounded by my family’s new found realities that I’m having difficulty accepting- Lionel is sick. His Alzheimer’s will only get worst. Lionel will be put into assisted living. Grandma will have to adjust to this. Grandma is 84. Though she is in good health for the most part, Mom fears she can’t live alone. Maybe she will move into my Mom’s house across the street. Maybe the time has come when the child parents the parent. My Mom is 60. She is bored. She is tired of the small town she was raised and stay in. My mom and grandmother should leave and come here, but I’m not sure they ever will. I am 1,721 miles away and I’m physically unable to help with any of this. All I can be is emotional support over the phone and sometimes that is difficult for me.We expect our parents to be the rock- but my mom is scared of what the future holds and my grandma is scared of what the future holds and I guess I should be too?
But when I was talking to Grandma, I didn’t want to talk about my anxiety- though it had consumed a part of me yesterday. I wanted to change the subject.
“Grandma, I want you to know that you can talk to me about this at any time. I don’t want you to keep it bottled up. I want you to feel free to share how you feel, ok?”
I worry about her. Because of her idea that you must keep things in, because of her idea that if you are feeling sad or are in pain and shouldn’t talk about it, she has been miserable. She’s frustrated. She hates herself, she says.
“I can’t move like I used to and Lionel is of no help! If I wasn’t in pain it would be ok, but I don’t think the pain is ever going away!”
She yells at Lionel when he forgets to take out the trash. She yells at Lionel when he falls asleep again and again on the couch. She yells at Lionel when he hits the wrong buttons on the coffeemaker.
“Grandma, you have to stop doing this. He’s sick. He forgets. He can’t help it. Yelling at him will do both of you no good.”
And it won’t. Alzheimer’s support groups will tell you that trying to combat with a person afflicted with the disease will not work. It will make them angry and sad and more confused. It will only make the opposer more and more frustrated. It is not like Grandma to yell at someone but like anyone in pain- emotional or physical- you are not always yourself.
Neither Lionel or Grandma are the selves they were 50 years ago or 25 years ago or even 2 years ago. Last year there was no diagnosis to the evident memory loss that Lionel was experiencing. Now, now things are changing so quickly and none of us can hold on.
Already crying. When I lost Nanny a few months ago, we were sad, but we were all more worried about Papa & how he was going to live on.
I am an only child and I've seen my father die and watched my mom see both of her parents go thru all of this and it's just hard. Keep offering your heart and long distance love, while knowing deep down, that you'll see all of this again with your own mother. The circle of life.
I am so sorry your family is going through this. I think April is right about continuing to offer your "long distance love." I don't know what else a stranger can say to comfort you or help you, but I'm thinking about you and your family. Stay strong.
i'm sorry you are dealing with these things. It seems like it all crashes in at once, and it's easy to get overwhelmed. I live very far from my Moma, as well, and it's hard because she isn't well. But your family knows how much you love them, and you seem to be helping in any way that you can, don't beat yourself up.
And just like you told your Grandma, YOU don't need to keep things bottled up, either. You're feeling anxious for a reason, and should talk about it, too.
Sending thoughts and prayers your way, for you and yours.
Few things in life are more stressful and difficult than dealing with the declining health of a loved one. As tough as it is, I encourage you and your family to face it head on — as much as you can. I know from experience the penalties that come from denial and avoidance, and they can linger for a long time.
My best wishes and deepest thoughts are with you and your family.
Alzheimer's is a horrifying and surreal thing; I'm sorry you have to go through this. Every time my family visits I end up thinking about their mortality and the changing roles we have towards one another. Ugg, best of luck.
The dynamic in a partnership shifts so drastically when one member is sick. My mother told me today that my grandmother (who has Lewy body disease – Alzheimer's with a dash of Parkinson's) forgot my grandfather's name! Just keep being available for your mom and grandmother to talk and vent. Thanks for sharing, cause everyone deals with this-but not everyone wants to talk er, write about it.
My grandpa is currently going through this, and it scares me. My grandma is having a hard time not getting mad at my grandpa, and its taking a toll on her. My mom just signed my papa up for hospice yesterday, and with that it seems like everyone has to truly understand that he will never be the same again.
He used to ask me when I was getting married, or ask me about my friends.. that doesn't happen anymore. He has warm eyes, but he just looks lost.
I feel almost selfish for not being at home with him (I am three hours away). When I go to my hometown, its so much worse every time I see him. I just really want him to be at my wedding one day.
I am sorry your going through this, and I needed to hear your post.. it makes me feel like I am sadly not the only one. You and your family are in my prayers, and thank you for your post. I needed it.
This unsettling post is so lovingly written, and it has your style stamped all over it.
I work with end-stage Alzheimer's patients and their families in my work in hospice. The patients and families who can deal with it without yelling are few. The adult children seem to be able to maintain some semblance of calm, but for the most part, the spouses are old and unable to control their emotions like the once did.
And they are angry. They are mad as hell that this horrible diseased as manifested itself in their loved one.
I agree with the advice to remain available – from a distance. I will be thinking about you.
@april- ugh. i guess that's part of growing up. it's so scary. i'm sorry that you lost your nanny and your dad. i can't imagine…
@nicole- thank you so much, nicole!
@amanda- thank you, amanda! i try not to keep things bottled up. in fact, i'm a big believer in therapy. it's important that we express our feelings. i appreciate your comment!
@bard- thanks, bard. it's scary. being an only child, i used to stay up at night crying worrying about these things. now i'm no longer a kid and these things are more of a reality. sigh…
@annette- yep. that sounds like me too.
@christi- gosh. i have never heard of lewy body disease. that sounds rough. my uncle had parkinson's. parkinson's is terrible. at least with alzheimer's you aren't aware of the changes after awhile. with parkinson's your mind works, but not the body.
@navy- thank you so much for stopping by! it's comments like yours that keep me writing. good luck to you and you're in my thought too.
@cj- it must be difficult watching that on a daily basis. i give you credit for working in the medical industry. i'm not sure i'd have the stomach for it. :/
*sigh* As someone who is staring this diagnosis straight in the eye, I was really moved by this post. I wish that I had caught it when you first published it.
This is so real and many people who read your journal hopefully gained something from your honesty. This post was a public service and I thank you for honestly sharing your experience.
This makes me so sad. My dad is almost sixty and keeps telling me he forgets things all the time and it scares the shit out of me.