My Hoarding Tendencies

Robert died just over 10 months ago and I just yesterday boxed up some of his clothes. 

When he first died, people from his facility and day program wanted a memento to remember him by and I was so touched by their requests. People wanted a piece of Robert because he meant so much to them. 

I gave the Director of Nursing one of Robert’s Hawaiian shirts. A beloved staff member of Robert’s got one of his many 49ers hats. Robert’s lunchbox was given to his sweet day program administrator and she still sends me touching messages about how she often thinks of Robert during her lunch break. Robert’s bingo chips went to his lovely activity director. 

We gave wonderful Pattae one of Robert’s 49er sweatshirts. We still keep in touch with Pattae and I send her caregiving jobs information when I get wind of them. How can I not keep in touch with Pattae? 

Soon after Robert died, a friend’s dad fell on hard times and needed warm clothes. I boxed up a few of Robert’s sweatpants and shirts and gave them to her for her dad. 

The rest have sat in Robert’s dresser drawers or in his closet. Shorts he stopped being able to wear years ago, PJs he wore when he lived with us (I still picture him wearing these long back-closure pjs pushing his walker down the hallway), camp shirts with the Velcro buttons – even his Velcro close shoes. I have a drawer full of t-shirts he got from day program events and for each year of Epilepsy Awareness Day. He has a couple of ties – a 49er one for game day (of course) and another he wore to our dad’s funeral. 

We have his 49er blankets (yes, there are many) and dozens of reading glasses (I always had to have back-ups with me, in his room, in his go-bag – everywhere!). At least the glasses are now in a bag ready to donate to an organization that reuses frames and lenses. 

I was able to box up his shorts, a pair of sweats, knee-hi 49er socks and a few of his camp shirts. He was particular about his shirts. They had to have a pocket so he could keep his glasses in them. They needed to be Velcro-close to make dressing easier (first, when he could dress himself, then for me when he couldn’t any longer and finally for the Skilled Nursing Facility staff when he lived there). 

His red shirt still smelled like him. He loved that shirt and was in it often. 

I left that shirt (and his Route 66 shirt) in a drawer. His shoes are still there too along with a 49er jacket and those ties. 

Grief shows up in different ways and there is definitely no timetable for it. No “normal” way to grieve. There is no “normal’ way to part with a deceased loved one’s things. 

I recently read an article about this very subject in which Dr. Jason Singh explains that “getting rid of their things may feel like participation in their erasure.” I certainly don’t want to “erase” Robert and know that I won’t given our continued connections to those who loved him. Keeping those friendships reminds me how much joy Robert spread to everyone who knew him and how loved he was. 

Keeping those connections is more meaningful than keeping his shoes but I don’t think I will ever be ready to get rid of all of his things. Heck, I still have some of my mom’s shirts and she died 27 years ago. 

Do I have some hoarding tendencies? Sure. It’s not all bad, though! I am the person who people come to at work when they need a document from 25 years ago or wonder where our summer picnic was held in 2007 (a local bowling alley, in case you’re wondering).

Whether you dispose of or donate your loved one’s things soon after they are gone or you hold on to them for years (or something in between), know that you are doing exactly what is right for you. 

There is no right or wrong when it comes to grief. 

Epilepsy Awareness Month: Loneliness and Friendships

We had a wonderful dinner with friends on the first day in Southern California for our Epilepsy Awareness Day trip. We can only see them a few times a year so our get-togethers are non-stop talking and laughing and warm hugs!  We planned to finally take a picture of the four of us but completely forgot with all the chatting, laughing and eating way more than we should!

This made me think of how social Robert always was. He had a wonderful group of friends in school, was active in his church as an adult and then, when he lived with us, had so many friends at his Day Program and eventually at his facility. He was very social his whole life.

But Epilepsy can be lonely and isolating. Stigma still exists and people can also be uncomfortable around seizures.  People with Epilepsy may feel embarrassed when they have a seizure in public leading them to hesitate to go out with friends and family.

Anti-seizure medications can also contribute to these feelings. They can alter a person’s mood or make them drowsy which affects if a person wants to socialize.

A logistical reason for loneliness is some people with Epilepsy cannot drive. Sure, it’s great to have ride-share options these days but that costs money so it’s not an option people can use all the time. Public transportation can be available but that doesn’t lend itself to a spontaneous visit with friends and options in rural areas can be limited.

So Epilepsy can be lonely.

The Epilepsy Awareness Day at Disneyland Expo is not only about education but about community. Seeing people walk into the event I can tell they feel like they have found their people. Attendees have hope for seizure control for themselves or their loved one and with so many hospitals attending and doctors giving seminars and non-profits sharing information, the options are plentiful (although a bit overwhelming).

Richard and I and one of our other co-authors, Gincy, brought our 365 Caregiving Tips books to the event and thanks to a sponsor, NorthShore Supply, were able to give away our “Caring for Yourself” book at a table generously paid for by Other Brother.

The individuals and families stopping by were all looking for answers and support and they found it at this expo. Their strollers, wheelchairs or bags were overflowing with pamphlets, books, and trinkets and flyers from all the vendors.

People attended with their support group or their significant other or the entire family. It was clear how much people cared for each other and how they all wanted the best for their loved one. So many visitors at our table shared their story of medication changes, surgeries, seizures, and their own feelings of overwhelm.

Yes, Epilepsy can make a person feel lonely but people with Epilepsy can also be resilient and compassionate and caring and have terrific support systems. Robert loved attending these expos and it was weird not having him there this year. He was always the greeter at our table and loved to talk to the visitors at the table and even the people walking by! He would just talk louder if people walked by without stopping to chat – he assumed they just didn’t hear him!

Robert was our social butterfly.

 

 

Epilepsy Awareness Month: Excited for EADDL

 

Richard and I are excited! We leave tomorrow for Epilepsy Awareness Day at Disneyland! We started going to this event in 2014 and Robert went with us. I remember being nervous about traveling with Robert but it was easier than I had feared (isn’t that always the way?) and we kept going back!

We couldn’t take him in 2023 because he was in the Skilled Nursing Facility and physically it would have been too tough for us. That was the year I had two cataract surgeries and two Mohs surgeries and I just didn’t have the energy it would take to care for him.

I really missed not bringing him that year. Last year only Other Brother attended the event because of that darn heart attack Richard had! (Although, frankly, I am relieved that if Richard had to have a heart attack he had it in front of an emergency room instead of in Disneyland!) Timing is everything.

This year we are going and we couldn’t be more excited. Our daughter, her husband and our grandson are going and Other Brother and his wife will be there too! Robert will be with us in spirit (and in photo form) so he can join us for our traditional photo in the Tea Cups!

I am grateful for the memories of visiting Disneyland so many times with Robert. He enjoyed every minute of it even though he always, always, always had seizures during the days in the park. Unfortunately, excitement was a reliable seizure trigger for Robert and it is pretty much impossible to keep someone from getting excited about Disneyland!

I wondered if taking him to Disneyland was worth the seizures. I was always considering Robert’s quality of life when I cared for him and even though the seizures were rough on him, I just couldn’t take that joy away from him.

We did our best to manage the excitement. The first year we went, we counted down the days on a chalkboard in his room. Two days before our flight was scheduled to leave, Robert ended up in the emergency room with a cluster of seizures that wouldn’t stop!

We never did the countdown to the trip again. In fact, Richard and I would be super low-key and casually mention we were going on a trip to Disneyland only when we were close to the departure date. We did our best not to show too much excitement when we entered the park but, I admit, that was tough.

Robert never ended up in the hospital again due to all the seizures (at least not around Disneyland time) and I have plenty of photos showing Robert smiling from ear to ear the whole time we were there.

I definitely think it was worth it.

Richard said today that going to Disneyland without Robert will be strange. Yes, it will be different and Robert will be missed but I am so happy we will have family there to enjoy it with us!

Epilepsy Awareness Month: Interview with Robert

 

In November 2012, I did several interviews with people for Epilepsy Awareness Month and Robert was one of those interviews.

I’m pretty tired tonight so instead of writing a whole new blog, I want to share that interview with you. I hope you enjoy reading it as much as I did! (The original post can be found here.)

Robert’s Sister:   How does it feel to have epilepsy?

I don’t want to have epilepsy.  I want it to stop completely.  That’s one of the main reasons why I had the brain surgeries. 

Robert’s Sister:  How did your family treat you when you were growing up?  

They treated me pretty good.  I tried every medication but nothing was ever able to stop me from having seizures.  They kept an eye on me.

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy? 

I had a lot of nice friends when I was in high school.  A lot of them were handicapped also and we went to gym.  In the back room we were able to play pool and I even taught some of the guys how to play pool.  Some didn’t know how to play right so I taught them correctly.  They really liked it too and thanked me a lot for that too.   My classmates were nice to me and nice to each other.

Robert’s Sister:  Do you think the medications affect how you feel?

It doesn’t hurt me any.  When I was younger, I was still having seizures at times before the brain surgery. I always controlled my mood.  I thank God for that.

Robert’s Sister:  How do you feel about having brain surgeries?  Do you think they helped? (Note: Robert has had two brain surgeries)

The brain surgeries did help a lot. The first one was January 4, 1990.  I remember I was awake during the brain surgery.  The surgery was ten hours long and I was awake and the doctor showed me 3 x 5 cards, back and forth.  He had me move my fingers and toes. 

Robert’s Sister:  What made you want to be involved in research studies?  (Note: Robert was involved in a research study for the Deep Brain Stimulator at UCSF as well as a variety of new medications)

To see if they would stop me from having seizures or not. 

Robert’s Sister:  How did it make you feel when Dad said he didn’t want you to participate in the research studies? (Note: Our dad didn’t like the idea of Robert participating in research studies)

I felt like Dad didn’t want to help me.  I believe I did the correct thing. 

Robert’s Sister:  How do you feel about living in a care facility?

It’s okay.  The people are nice there.

Robert’s Sister:  What is your favorite memory? 

I like to remember Mom.  I still remember her in my mind.  It’s too bad she had cancer in her stomach and passed away early.  (Our Mom passed away from liver cancer in 1999 when she was only 56 years old). 

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

Yes.  I remember when I was 15 I was at Dad’s house in Modesto.  Dad took me to a friend’s house and we went to the Jacuzzi for a while.  I told him I was going to do a couple of laps in the pool and went to the deep end.  A seizure hit and I fell in.  My friend saw me lying at the bottom of the pool and told my dad.  Dad dove in and he was still in his work clothes.  He dove in and pulled me out.  The paramedics had to start my heart again and the Lord told me it wasn’t my time to die yet and I was here for a reason.  

Robert’s Sister:  What do you think that reason was?

To help other people. 

Robert’s Sister:  What do you want people to know about epilepsy?

Epilepsy is a seizure disorder. A person could have a seizure and fall down. They may injure themselves also.  I remember I cracked open my head 36 times in the past. (Note from Robert’s Sister: he wears a helmet now; probably about 35 times too late).

Robert’s Sister:  Is there anything else you want to say?

I thank God for saving me in everything so far. 

Robert’s Sister:  I have one last question and it’s a really hard one.  You better take an extra drink of your shake for this one.  Who is your favorite sister?  J

(Laughing) – You!  (More laughter)  No, George Washington!  Only joking!  (Still laughing)  You’re my favorite sister.  My only sister also. 

Robert’s Sister:  Many thanks to Robert for answering my questions!