Saturday, June 4, 2016 mid-morning
This is the view I see each morning at my new rental place. This is the view I need to see each morning. I feel so fortunate to have Mom’s neighbor, Kevin, as part of our self-made care team. With his assistance, I am able to continue my schedule of going up every 5 weeks or so and still come back to my regular life in Columbia.
Have had a few calls from Mom and made a few calls. Highlights:
May 24 – “I thought you were coming up for Dad’s birthday.”
“It’s July first, Mom, not June first. I’ll be up in late June.”
“Oh…okay. There must be something wrong with this calendar.”
May 25 – “I thought you were coming up for Dad’s birthday.”
“It’s July first, Mom, not June first. We talked about this yesterday…but that’s okay. I’ll be up in late June. Check the July calendar. It should say “Dad 94 on July first.”
“Ok…oh…yes. There it is. Sorry to bother you.”
Shortly after I returned to MO – “I just want you to know Dad is leaving me. He’s coming over with his girlfriend and told me to get his clothes. I have them on the dining table. I think they’re coming over later this morning, so I’ll just wait. I just want you to know.”
This is a common delusional thought, and I’ve learned not to dispute it. I said things like, “Oh….gee” while she gave me the news. I ended with “I don’t know what to say,” and she stressed that she just called to let me know.
Of course, I get on the phone and call Kevin who goes over to say hi and check in on her. He, too, did not dispute her claim. Later that afternoon he went back to ask if anyone stopped by to get Victor’s clothes. No. Kevin told me he then told Mom that whenever he visits with Victor, Victor always said how much he loves Mom. With that, Mom agreed to put the clothes away and go see Dad.
A few days ago – Call from Kevin saying Mom was not reacting well to beginning doses of generic Aricept. “Don’t give it to her,” I said. “There’s no guarantee that it will help…and even if it does, it will not help for more than a year or so. She takes the blood pressure and cholesterol medicine…and that’s what is most important.”
Mom was miserable with nausea and dead tired when she started the new med right before I returned to Missouri. I mean miserable! She’s almost 90. It’s more important for her to feel physically well. A secret dose of antidepressant I would love to sneak into her morning oatmeal…but the Aricept substitute isn’t worth the discomfort.
A couple days ago -“I need money to get the car fixed and I don’t have any money.”
“Sure you do, Mom. Remember, you have the red box with some cash in it. You also have a checking account book. It has a note written on it: ‘Mom’s checking.’”
“Well, where are they?”
“Wherever you put them.”
“Okay. I’ll go look.”
She called back. “Ok…I have the checkbook. I’m so relieved. You know, I don’t spend a lot of money.”
“No…I know you don’t, but I hope you know that if you need anything, you can buy it. Kevin can help if you need to write a check.”
The car needs to be fixed because in driving it out of her tiny garage, she once again broke the side mirror off and apparently other glass was shattered. Kevin discovered the glass in the morning when he went over to get her car out of the garage for her, but independent gal that she is, she had already left. When she returned, Kevin took charge of the repair. According to Mom, though, even Kevin has difficulty getting her car out of the garage. “He almost did the same thing I did a couple times” This was her 4th or 5th time, according to Kevin…only with more damage this time.
Late yesterday afternoon – I received a call from a lady filling in for the receptionist at Victory Lakes where Dad lives. She told me Mom called and asked to speak with Victor. Mom was told he was at dinner. “She sounded kind of upset. I guess she’s having a bad day.” I thanked her for calling and promptly called Mom.
She answered the phone quickly and was crying. The evening news was summarizing the day in the background.
“Hi, Mom. Just called to say hello,” I said. “I’m having a plate of spaghetti now.”
“I’m okay,” she insisted, but eventually she opened up and talked about being so tired of “all this” … Dad doesn’t appreciate her visiting and doing his laundry every day…she has to figure out what to do but she likes her home…how bored she gets sometimes…all the topics we cover over and over and over as she rants and I listen. Suggestions don’t go far. She’ll either agree and forget, or she’ll dismiss a suggestion with a reminder that “I’m perfectly happy.” But we chatted for almost an hour, I think, and I eventually got her to chuckle and laugh. By the end of the conversation she was bragging that she was doing just fine and asked me if I was doing fine. I said I’m enjoying my first ever adventure in living alone…and she joined in saying how much she enjoyed living alone, too.
I’m sure Mom enjoys times of just doing what she wants when she wants the way she wants. We share that genetic trait. That said, she misses Dad terribly. They’ve been married 59 years…a second marriage for her and a good one. She grieves continually.
And while she grieves, I have to get away. Thanks to Kevin, I am able to do so. I am able to return to Missouri to clear my mind, lower my blood pressure, spend time with family and friends, see movies at Ragtag, garden, listen to music I love, and feed birds. I revel in the quiet. I milk all I can out of my alone time, because I know things are going to get far, far worse.
A deep bow of gratitude to Kevin for the arrangement we have set up to help Mom live as independently as possible while I try to do the same.
Another deep bow of gratitude for all the folks who share their experiences with dementia/Alzheimer’s as caregivers, nurses, doctors, patients, and family members. I don’t know about others, but I find myself almost obsessed with reading about this condition. With morning coffee, I read message board discussions on the AgingCare.com and Alzheimer’s.org websites. I listen carefully to NPR interviews. With Mom’s recent diagnosis, I’m googling “vascular dementia” as I try to figure out what to expect. Over a year ago, I inhaled The 36-Hour Day. More recently I’ve been immersed in Bettyville, the funny, tender, and honest memoir by George Hodgman.
If anyone has other books to recommend, please share.
As my generation ages, the population of “senile” folks is going to explode. We better get prepared. It’s gonna be a long, bumpy ride with terrifying highs and lows. Just part of being human…for some of us.
And while I’ve been home a while recharging my battery, my grandson and I went on a nature walk recently at Pinnacles Youth Park a few miles north of Columbia. Photos like these help me breathe and remind me to be present.
Photos are stunning. The green is so refreshing. Am sure it refreshes your spirit
I find facebook dementia groups helpful and read everything i can find too
Yes…the green around these parts in Missouri is a life source. I truly enjoy the back yard at my rental…and you are right, the spirit is refreshed each day that I wake up to birds and step outside.
Reading early morning posts and responses on dementia groups’ sites is part of my morning coffee routine…as well as at other times. I’m part of a unique community where so many caregivers endure so much suffering and sacrifice…much more than I do at this time. Plus I’m just so damn fascinated by how our brains can change…the behaviors and thinking that results from dementia.
Thanks for sharing.