I wasn’t raised in a barn…
Valley Road, Montclair, NJ. That’s where I was raised. It was a big, old house filled with people and love and tons of teenage angst. My parents bought that house a few years before I was born, and I lived there until I got married at 24. Through the years, my siblings came and went depending on how their lives were fleshing out, but I stayed. I’ve got an amazing wealth of memories of Valley Road, of my parents, of my relatives.
During those decades, my parents raised five kids. My oldest sister moved out when I was five, so I don’t have any recollection of her living there, but all three of my brothers were in and out through the years, and I have memories of great—and contentious—times with them.
But…we were kids. It never occurred to us that caring for my aging parents would come sooner than we thought. It never occurred to us that we would be forced to make some hard decisions, face some hard times, in the not-so-distant future.
Talk as early as possible
My parents bought a retirement house in Florida when they were 57. They retired at 60 in excellent health, ready to enjoy themselves without us. They retired and sold the house, literally, the week I was on my honeymoon in 1990.
All five of us were living independent lives at that point, getting together when we could, but not having any large family meetings.
But Sweet Husband and I were having meetings with Mom and Pop. We knew, even before we were married, that the ultimate care of my parents would fall to us when they weren’t able to care for themselves. Even in these early years, as they enjoyed incredible health and vitality, Pop had the premonition he would go first, and he wanted to make sure I would care for Mom properly.
These early meetings included the basics of their life, and the basics of how we would operate moving forward. While we talked honestly and bluntly about finances and insurance and documents, I did not have any passwords or access to any of the actual instruments we discussed. At this time, the Living Will included both me and my sister in charge, which seemed to be a logical choice. My parents started “snowbirding” to our house when we relocated to Nevada, and spent months at a time with us. They still maintained their own residence in Florida, but as the first cancer hit (prostate), it compelled Pop to start implementing the plan we had long considered.
It was Christmas of 2000 that Pop sat us down to make sure we were still onboard with everything we had discussed for years. At that point, we had three children under six, and were intensely focused on raising our family. But we never wavered. We were ready.
Telling everybody the plan
Pop called a family meeting at the Family Reunion for their 50th anniversary. My siblings were surprised by the announcement, but were given the chance to respond or ask any questions they had. When they questioned why I was chosen, Pop asked them if they wanted to throw in an application. Nobody did.
Talk as often as possible
What followed were years of peace and calm, as Pop and Mom lived their retirement on their own terms. When things started to turn bad with the heart in 2007, they closed up their home and came to live with us permanently.
Throughout the following years, I maintained a strong, working relationship with my siblings as my father faltered. We spoke individually and collectively as necessary, since they were all on the east coast and we were in Nevada.
It wasn’t always easy—especially during times of stress—but we managed to maintain communication throughout. During this time, the decision was made—strictly for logistical reasons—to make me the sole person on the Living Trust, Power of Attorney and DNR. With my sister across the country, and decisions coming fast and hard, there was no way I could wait to discuss things with someone else. My siblings, seeing the logic in this choice, voiced no concerns about the switch.
It was the single best thing we did, in retrospect. There can only be one Mayor of Crazytown.
Pop chose to not share any private information with anyone but me all the way through the end. While everyone knew the basic outline of what they had, I was—and remain—the sole Keeper of the Keys in the family. I’ve got all of the information, all of the passwords, all of the responsibility for keeping Mom safe and comfortable for as long as she lives.
But, I’m available 24/7 if you have any other questions. .
Keep everybody informed
Then, the dementia hit. It seemed hard and fast, but Mom was really good at covering up her symptoms. In retrospect, there were definitely signs much earlier than we caught. Things Mom would do that we would just attribute to forgetting something just one time, or not hearing us when we told her something.
We didn’t want to believe. Neither did she.
While Pop was still alive, so prior to 2017, there were definitely many signs of beginning dementia. I’ve often wondered if Pop knew more than he told me. He definitely mentioned near the end to “keep an eye on Mom” or “don’t let her go places alone” that I merely took as concern and love for her, not realizing that what he was seeing was the beginning of a decade-long nightmare.
After Pop died, and I focused hard on Mom’s health, the diagnosis came out. This was 2018, and she was diagnosed with moderate dementia. This was based on anecdotal information from me, and some testing they did on her memory and some clinical tests.
So, yeah, she basically hid mild dementia from us completely.
It fell on me, the Mayor, to share this information with my siblings. Obviously.
Just in case…
Sharing information like dementia is a different kind of beast. When I said “kidney cancer” about Pop, there was an obvious enemy to fight, and a plan to get better. Not only is dementia not always obvious, but there is no coming back from it.
It’s a killer. It’s just a matter of time.
So, I faced a lot of pushback from my siblings. Literally for the first time, my qualifications and intentions were questioned with Mom’s diagnosis. It wasn’t an easy time for me, and I know it wasn’t easy for them to hear. Here are just a few of the hurdles you might face in discussion a dementia diagnosis with your loved ones:
They don’t believe you
I was an emotional, excitable kid. I was a mess, and I was the youngest, and I was favored. I didn’t have a whole lot of respectability with my opinions—I had cried wolf too many times as a child. When I told them about the symptoms I was seeing, and how Mom was changing, they flat out didn’t believe me. “You’ve always exaggerated, Pat” is what I was told. Unfortunately, time has proven them wrong, as much as I wish I weren’t right. If this happens to you, I suggest you try very hard to remain neutral and clinical. I would give my siblings concrete examples so they would understand that I wasn’t exaggerating. They couldn’t argue with “left the stove on…” and “lost her purse again…” and “couldn’t find her car in the parking lot…”
They refuse to have the conversation
What you are sharing is devastating news, and I can completely understand someone wanting to completely ignore the topic. If they are five. But, in my family, we were all adults, so I forced the issue with everyone. Time is not on your side with dementia, and allowing loved ones to simply ignore the symptoms will rob them of the opportunity to maintain a strong relationship as long as possible, and—more importantly to me—rob Mom of seeing her kids and grandkids. In my case, I enlisted the help of Big Brother Bill to intervene with information. My point is this: Do whatever you have to do to make sure everyone has as much information as you can.
They don’t agree with your plans
This one did actually smack me right in the face a few years ago, and it wasn’t an easy time. After years of getting full support of my caregiving techniques, all of a sudden there was dissension in the group! Suffering from severe dementia, Mom had her fall in 2020, which terribly exacerbated her dementia symptoms. While she was in a rehabilitation hospital, I made arrangements for full-time care with her nurse, and adjusted my schedule so she would not be alone. Some of my siblings thought it was time for her to go into a facility. I was shocked by the idea, but let them share their feelings and opinions as clearly as possible. At the end of the day, I brought her home.
They threaten a lawsuit
I can’t imagine the pain and devastation of having your own relatives try to take you to court over the care of your parents. The idea is so repugnant to me that it isn’t even easy to write about. If this had happened to me, I guarantee I would have dug my heels in and fought as hard as I could. I can say this because I know I have always acted honorably, and, more importantly, I’m doing The Job the way I promised my father I would.
They won’t help. At all
I’ve got a friend who cared for her mom through the end of her life. She was an only child. I can’t even imagine not having anyone to support me through this experience, and if this is you, I hope you’ve built a strong network of people who make The Job a little easier in their own way. In my case, I do have a widely different level of assistance from my four siblings, so I know what this is like. Here is what I’ve learned through the years: I can’t change anybody. I only control myself, and on the day I am standing over the casket, I will know I’ve done the very best I could. Live with no regrets, and let them live with themselves.
Ongoing Communications
So, I did move Mom to a facility in early 2022, after things became unmanageable at home, and I started to feel like things were outside of my control.
Since then, she continues to decline, and I continue to be the bearer of bad news in my Pilat family.
The best thing I learned was back in the beginning, when people thought I was exaggerating everything. I give concrete examples of behaviors that are clearly unlike our dear mother. I try to call people and share her good days, but they are coming less and less frequently. So, I also share some struggles and new symptoms that I see, just so they can be in the loop.
I told you, dear readers, about the day she didn’t recognize me and it broke my heart. I also shared that with my siblings, because they need to know where we are in the progression of the disease. It isn’t all good news and good days anymore.
But…at the end of the day…
There’s only one Mayor of Crazytown.
Share the burdens of The Job as much as you once shared the joys. Just keep sharing, and let them participate in ways they are comfortable.
No matter what, I’ll be over the casket in peace. I’m doing a fantastic job, and so are you.
THANK YOU FOR READING THIS FAR!!!
Wow! You made it! Thank you for reading about talking to your siblings about dementia!
Hey, since you’re here! You may as well check out things to avoid talking about, here, or if you’ve read that, check out managing medicine strategies, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!
Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!
Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.
Oh! And don’t forget to check out my video series by CLICKING HERE!!!
Resources
https://www.joincake.com/blog/how-to-talk-to-siblings-about-aging-parents/
One thought on “Talking To Your Siblings About Dementia”