Create! In Spite of the Doubt

One thing I remember about my mom is how she loved to write poetry. She would write poems or lengthy thoughts from her heart in birthday cards, in her journal, and I suspect in her anniversary cards to her husband(s).

Two of Mom's photography pieces

We would joke about the “book” mom would give us on each occasion. 

I would tell her how good her poetry was; how raw and open and soul-baring yet she never believed it. She didn't think she was good. She didn't try to get published because she didn't believe in herself. Publishing isn't the absolute goal for artists but she didn't even write as much for herself because she didn't believe in herself.

She lived with doubt enveloping the creativity within her.

Yet she continued to create. 

Photography was Mom’s passion. She didn't think she was good at that either but her love for it seemed to be greater than her insecurity. Other Brother and I are fortunate to still have her some of her photographs and I think he even has some of the original negatives (this was a pre-digital age!).

Mom was not content to just take pictures – she wanted to have a hand in developing them too.  She turned a built-in room that was intended to be used as a bar (hey, it was the 70s) into a dark room and loved to spend time processing her photographs.  (Now that I think about it, it was most likely a “dual purpose” room.)

The door would be closed and we had strict instructions to stay out until the developing process was complete.  Sometimes Mom would allow us a peek and I remember seeing the photos soaking in bins of solution and then hanging like laundry across the room.

Mom would haul us to parks and lakes and goodness knows where else in order to get the perfect shot. I don’t recall a lot of candid shots but know there were plenty of staged shots and several “takes” until Mom was satisfied with the moment she was trying to capture.

If the photography thing didn’t work out, she certainly could have been a director. 

Mom chased storms before storm-chasing became a thing and loved to find a bigger and better camera lens, various filters and other equipment.  She was easy to buy presents for at Christmas – anything photography related made her happy.

It's ironic that the people who are born to create are often times also riddled with insecurity.

Mom continued to indulge her artistic passion but always with the nagging belief that she was not good enough to show her writings or her photos to anyone other than family and friends.

Even opening up that little bit took guts.  Mom did not completely let her doubts and fears keep that talent inside of her. She was able to create, keeping her doubts beside her, and allowing herself to be vulnerable anyway.

Her photographs are special to me so I am very grateful she did not let her fear stop her from creating.

I must be thinking about this because, today, the Oscars will be broadcast. I love the movies but since caregiving duties have increased, I haven't been able to see as many as I would like. I do love to watch the awards, not for the celebrity aspect, but because I love seeing the snippets of the work and hearing the speeches from people who are passionate about creating.

I love the creative process of it all – not just acting but the behind the scenes work: the directing, the writing, the photography and the collaboration.

Whether it is a movie, a painting, an illustration, a dance, book, screenplay, poem, song or photography, it's all about creating in spite of the doubt.  It is about the making of something that shoots out of your soul and sharing that with the world, even if that world is just your family and friends.

Sorry, Not Sorry

I have a friend who is a caregiver to her husband who has Early Onset Mild Cognitive Impairment. G-J is a dynamo! She cares for her husband which involves numerous doctor’s appointments, medications, classes to help brain function as well as many, many other tasks. She teaches at a local senior care home, is a freelance writer, manages to spend time with her college-age son and is a busy volunteer with the Alzheimer’s Association. 

Other Brother and I after a wild ride on a roller coaster

in Santa Cruz (2007)

Like I said, she is a dynamo.

She is also one of the authors (with me and three others) of the book 365 Caregiving Tips: Practical Tips from Everyday Caregivers (which is on sale now!!).  Our emails to each other regarding this book and our next book project (regarding travel tips for caregivers) or just to say hi sometime start with “I’m sorry I haven’t responded sooner.”

She is busy; I am busy; caregivers are just really busy. 

We are busy caregiving, advocating, planning, chauffeuring, managing a crisis or three and trying to maintain friendships, relationships and balance.

We end up saying sorry – a lot.

G-J and I finally decided we did not need to apologize to each other any longer.  I have this agreement with all of my other friends who are caregivers as well.  We might be late in responding to emails, phone messages, self-imposed deadlines or a check-in text.  Now, we may be late in responding but apologizing is no longer a part of the conversation (or at least we are trying to eliminate it from the conversation).

Sorry, but not sorry.

I tend to feel responsible for anything and everything which leads to a great deal of apologizing. No more.

Sorry, not sorry.

(This is hard for me, actually. I want to apologize, I feel the need to apologize but I can’t continue to apologize for things that are many times out of my hands.)

Caregivers are busy but we do not intend to be late in responding. We do not mean to slide in at the last possible moment to a doctor’s waiting room (yes, I had Robert use the bathroom before we left the house but he either needed to use it again once we arrived or had an accident on the way and needs to be changed). I am not intentionally late nor am I so disorganized that I arrive late. I plan ahead and give us plenty of time to get to appointments but there are times when we will be late.

Sorry, not sorry.

(I think maybe this will be easier to say the more I say it.)

Of course that pang of guilt hits me in my gut when I realize I haven’t talked to Other Brother in six weeks or when I am late for a hair appointment because Robert was in the ER all day (and there was no way in hell I was going to miss that hair appointment after that stressful day!). Or when I realize I only wrote one blog post in a month. Ugh!  I do wish I could do everything I intend to at the time I want to but sometimes that just isn’t possible.  

Sorry, not sorry. 

(Oh! But I am sorry but I just can’t continue to feel guilty about the things I am not accomplishing right now.)

Caregiving is certainly not an 8 to 5 job.  It is unpredictable, stressful, relentless and exhausting. Add to that a passion for advocacy to help other caregivers, a passion (and need) to write and then squeeze those in between caregiving tasks and working full-time.  Other caregivers understand this so know that no apology is needed when an email sits unanswered or a project deadline passes or our tone gets a little terse.

“Sorry” is not needed. 

I will certainly do my darndest to make it appointments on time, answer emails and keep my projects on track. I will do my best to be sure my frustrations don’t leak out in the form of snippy comments. I will even be mindful of the promises I make to myself whether it is regarding writing or self-care. 

If I slip, know that it is not intentional. Know that my “Sorry, not sorry” is about me giving myself the grace to slip.  Know that I might be saying I am not sorry but we both know I am. 

At the risk of making more promises I can’t keep, I think I will at least promise Other Brother a phone call.  Well, at least a text.  A text I can do.  Just in case that doesn’t happen, let me just take care of that now:

“Hey, bro! How are you? I miss you!”

See?  No sorry needed. 

Love Is All Around Us

It is Valentine’s Day so why not talk about love? There are many examples of love that I have been privileged to witness and not just the lovey-dovey kind found in commercials for Valentine’s Day chocolates or Viagra.

Love is going through life knowing you have someone on your side. Even when they drive you crazy sometimes.

Love is sitting by a friend’s side in spirit, through text, phone and email while her husband dies after putting up a valiant fight to live.

Love is another friend (GJ) finding creative ways to boost the spirit of our friend, Kathy, as she maintained a vigil as her husband passed after a brutal fight against Lewy Body Dementia. Then seeing that creativity take off in social media with a ritual of #coffeewithacaregiver.

Love is the persistent cat who thinks you should be petting him instead of pounding on the keyboard. And will lie down on the keyboard to prove his point.

Love is the outpouring of concern and worry over a social media friend who was in a very bad space. His friends and family were alerted and he was able to get the help that he needed in time. The kindness of “strangers” was such an example of pure love that it sticks with me to this day, several years after this happened. Those online connections cannot be dismissed.

Love is not only a gift of flowers and chocolates but the willingness to do the day to day care of a loved one.

Love is coffee dates, shopping and belly laughs with my daughter.

Love is a romantic proposal in the snow and puppy kisses to boot.

Love knows Other Brother is a phone call or text away and that he will answer every single time.

Love is a son who takes his mom to breakfast regularly and sees it as a blessing and not a chore.

Love is sisters being silly together – sometimes at a time others would consider inappropriate but we consider hilarious.


Love is seeing a son grow from a young man enjoying his party years to a young man with a passion for helping those in the military with depression.

Love is seeing Robert have a seizure and mid-seizure determinedly try to tell me he is NOT having a seizure. His speech was incoherent but his message was loud and clear in his eyes: epilepsy, this seizure, will not win!

Love is waking up to two big dogs, hogging the covers and the bed and not wanting to change a thing.

Love is being tired and exhausted but not wanting to be anywhere else. (Except the ocean; not going to lie.)

Love is sharing a closet 50/50 but letting it get to 75/25 without grumbling.

Love is sitting bedside with each parent as they pass from this life to their next. It is not easy to do but easing their transition was the most loving act I could do for them and them for me.

Love can be quiet, loud, in person, online, during happy times or difficult ones, while being silly or serious.

No question. Love is all around us.

Embrace every moment of it.

Happy Valentine’s Day!

With love,

Robert’s Sister

Help and Hope

I just love leaving the neurologist’s office with such hope.  Robert’s seizures have remained largely uncontrolled his entire life; his seizures changing over the years but never going away after numerous medications changes, surgeries and the use of various medical devices.

Between seizures - declaring himself excellent

Robert now has seizure clusters just about every two weeks.  These are Complex Partial Seizures and last anywhere from a few seconds to five minutes. They come one right after another with a few minutes in between to just 10 to 20 seconds in between them.  His postictal period is usually very brief and he can answer questions almost immediately.

Questions like: “How are you doing, Robert?”

Always with an answer of: “I’m doing excellent.”

And then another seizure comes.

Just before another seizure

Thursday night this scenario played out during dinner (which, of course, shortened dinner  because we don’t want Robert aspirating on food or drink). I gave him his rescue medication and the seizures slowed. This gave my husband and I time to get Robert ready for bed and in the safety and comfort of his bed.  (My comfort and his – I am comforted knowing he is safe in bed while keeping an eye on him either in person or with the camera.)

He had a couple of more seizures so I gave him the next dose of the rescue medication.  It was late by this time and I watched him on the camera until I was certain the seizures were gone.

Robert woke up the next morning pretty sleepy (seizures and rescue meds will do that to you). I started to get him ready for the day (bathroom, bath, etc.) and the seizures started.

Again, I gave him the first dose of the rescue medication. (We are at 3 mg of Ativan for the first dose and the rule is no more than 6 mg in a day. I was concerned about giving him the meds in the morning since he just had them the prior evening but the neurologist told me every day “restarts” the 6 mg rule.) 

We have to stop the seizures so 3 mg of Ativan it is.

Finally at home after a long day in the ER

Variation of the usual questions were asked during the recovery periods: “Do you know where you are?”

At home.

“Do you know who I am?”

Trish.

“Do you know who he is?”

Richard.

“What is the dog’s name?”

Taz.

“How are you doing?”

Excellent.

The seizures continued.  Step two of the rescue meds (2 mg of Ativan).

And continued. One more mg of Ativan.

The seizures would not stop.  The Ativan did not touch them, slow them or stop them.

I called the neurologist’s office when they opened.  They recommended going to the ER since there could be an underlying infection that wasn’t showing up yet. Plus, you know, the seizures weren’t stopping and there was concern about Robert going into Status Epilepticus.

That would definitely NOT be excellent.

I called the paramedics and they remembered us from the last time.  We also thanked them for participating in the neighborhood Santa visit and told them how much Robert enjoyed that. I was amazed at how they could be so friendly and professional all the while taking vitals and moving Robert from the bathroom to his wheelchair while we waited for an ambulance.

Apparently it was a busy morning for ambulances as they were on their fourth ambulance call of the morning and we had to wait for an ambulance to come from 15 miles away (in traffic, no less).

We waited. We talked. We watched Robert have seizures and tell the paramedics in between that he was excellent.

 

Enjoying Christmas with the Day Program staff

Once he was on his way to the hospital, I followed and thought about how this was the absolute worst seizure cluster Robert has had.  The possibility of him going in to Status Epilepticus seemed very real to me. I teared up and wondered if this was it for Robert.  I didn’t know what the rest of the day would be like. Would he continue to seize? Would I have to make all kinds of life or death decisions for him? Would he be able to tell me he is excellent again? 

The last time his seizures were this awful was when we were in Disneyland for Epilepsy Awareness Day so I could point to over-stimulation as the cause.

This – this was baffling as I had nothing to point to other than he had been super tired all week. I didn’t even have Disneyland as my consolation prize for dealing with such a stressful situation!

Thankfully, the seizures stopped fairly quickly in the ER. The doctors ran tests for an infection and checked his ammonia level because of the report of tiredness. Everything came back fine (even the ammonia level which was surprising because it is always high).

There was nothing we could point to and say that was the cause. The only nagging thought was that he had been very, very tired that whole week.  Even Day Program reported Robert was sleeping more than usual, taking two hours to eat lunch or not finishing his lunch. 

Now that is a definite sign of a problem.  Robert loves his food!

Robert’s case manager at Day Program is a good guy. So sweet and good-natured and very patient with Robert.  He also has epilepsy so I think that gives him a great connection with Robert. The director couldn’t be nicer either. Everyone at Day Program loves Robert.

We talked about Robert’s seizure cluster when I picked him up for his neurology appointment.  They both suggested that maybe he isn’t sleeping well and that perhaps he has sleep apnea. 

That could explain his tiredness so I mentioned it to his neurologist (actually, the Nurse Practitioner who then discusses things with the neurologist – I am perfectly happy with that arrangement as I love his NP.)

She thinks that could be causing his tiredness and his seizure clusters.  The neurologist doesn’t want to change the medication regimen until we get the results of the sleep study. (They’re testing his thyroid levels too since that can cause tiredness.)

I love the simplicity of that possible solution. What if he has sleep apnea? We can manage that and maybe, just maybe, his seizure clusters will be reduced or go away all together!

I just love leaving the neurologist’s office with such hope!

 

With the great help and support of the paramedics, Richard, the Day Program staff, the Nurse Practitioner, the neurologist (not to mention all the love and support from people that care about Robert), Robert just might get some relief from these seizure clusters.

Now that would be excellent!