Sunday, February 14, 2016

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

Wednesday, January 13, 2016

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?”


“Do you know who he is?”


“What is the dog’s name?”


“How are you doing?”


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!

Monday, December 21, 2015

365 Caregiving Tips: Practical Tips from Everyday Caregivers

Life is funny sometimes. 

When I started caring for Robert seven years ago – and believe me, it does not seem seven years has gone by since then – I had no idea what the future had in store for me or him.  I did not know what I was doing and certainly did not realize I was one of 65 million people providing care for someone.

Available in PDF or Paperback
While I did not feel alone, I felt I needed to share some of the problems I was experiencing to see if others had gone through the same thing.  My first blog post was about trying to change Robert’s address for his Social Security and Medi-Cal benefits.  What a nightmare!

Eventually, I stumbled across the caregiver support website, and asked Denise Brown if she was accepting submissions and if I could write for her site.  (I am always looking for ways to make money by writing.)  I did not fully grasp the supportive network Denise had created and she encouraged me to post on her site and connect with others. 

The people I connected with on that site remain my friends today. We have been through a lot of caregiving and caregiving changes through the years and we have shared laughs, tears and frustrations through it all. 

Four of these dear friends (one of whom is my husband) decided to create a series of books to help other caregivers. We have several years of experience between us and have learned “on the job” so wanted to share what we have learned with other caregivers. 

Some of our tips have been shared on our own websites, some on or other websites such as Assisted Living Directory (a terrific website with caregiving resources).  Life is funny: I connected with David Besnette who created Assisted Living Directory and he offered to pay me to write for his site.  Getting paid to write is certainly a dream come true but I love what he is creating with the website so much that I would probably write for it for free (shh! Don’t tell David). 

Pegi Foulkrod, Gincy Heins, Richard Kreis, Kathy Lowrey and I have accumulated so many caregiving tips through the years and are now sharing our tips in our first of (hopefully) many books designed to help the caregiver.  365 Caregiving Tips: Practical Tips from Everyday Caregivers is an easy to read, short reference book covering a variety of caregiving topics.  From advocacy, meal time, incontinence to travel (and even incontinence while traveling), no topic is too sensitive!   

Life is funny.  You never know where life will lead you. When I first met Pegi, Kathy and Gincy, I had no idea we would be lifelong friends creating a book for other caregivers. This book means so much to me because it was created with people I love and respect and admire.

While creating this book, life continued: caregiving did not stop; life did not stop. Between us, we were involved in fundraising for organizations we are passionate about, one of us sat bedside by her husband as death was knocking on his door (he is now at home, on hospice), we were working, caring, enjoying the news of an engagement (!) and laughing, sharing and loving.

These people inspire me every day to be a better caregiver.  To be a better person.

If there is one thing I have learned from these people it is never to lose hope and that miracles do happen. 

Pegi is the artist of the group and created a stunning cover for the book. In fact, her artwork is so beautiful it must be shared! We are finishing up a calendar to do just that so please watch this space for more information on the 2016 Caregiving Calendar.

Please consider purchasing the paperback or PDF version of the book for yourself or for a caregiver you know. The book will soon be available for e-readers as well!  Please also share the information about this book because you may not know if there is a caregiver in your circle of friends.

Thank you so much for your support! 

Wednesday, December 9, 2015

Holidays, Decorating and Caregiving

Readers know how much I love to decorate at Christmas time! This passion for lights, snowmen and holiday cheer could be called over the top or slightly very excessive (Exhibits A, B and C) but I like to call it “normal,” “spreading Christmas joy” and “oh so much fun!”

Santa visited our neighborhood early
Since caregiving started I have found decorating just as much fun but adding just a smidge of extra stress to an already busy time.  Last year I was very stressed out with the ever-increasing personal care needs of Robert, work was extremely busy and we were in the middle of trying to sell our house and find a new, more disabled-friendly house.  The mere thought of downsizing the decorations was depressing and a near impossible task for me.

It is not uncommon to have to downsize when caregiving or when someone is ill.  While getting our trees this year (yes, trees – more on that later), I overheard a woman tell her husband and adult daughter they used to get the biggest tree in the lot. She was saying this as her husband tossed a mid-sized tree in the back of their pick-up but she seemed to accept this was the year they were downsizing.

Richard’s mom has boxes and boxes of Christmas decorations at her house but hasn’t had the energy or desire to unpack them the last few years. Last year, Richard snuck over on Christmas morning and set up a tabletop tree and strung a few lights so she would wake to a magical Christmas morning.

I still get a little teary-eyed just thinking about that generous gesture.
Carol's finished product

This year, Carol was again not interested in decorating. It could be her depression. It could be hauling boxes out and decorating seems too overwhelming. Whatever the reason, we wanted to bring her some Christmas cheer so surprised her with a decorating party.  Richard, Robert, Rachel and I set out with another tabletop tree, decorations and our Christmas spirit. We surprised Carol who was grateful and ready to decorate with us. She jumped in and went through her own boxes of holiday decorations and pulled out what she wanted to set around and found ornament hooks since we forgot to bring them. 

She let us know when she was satisfied there were enough decorations – we wanted to follow her lead and not overwhelm her. After all, this was her house and we didn’t want to overstep our boundaries but wanted to bring some Christmas cheer.  When we were finished, she left for church and called once she returned home.  She expressed her gratitude and joy at coming home to a tree and a living room full of Christmas lights.

Choosing the best tree
It was a fun afternoon for all of us and Carol was pleased with the decorations. Success!

For our own house, Richard and I have been decorating a little at a time. Instead of taking a full day (or two or three) to decorate, we have slowly put out a few items each day. We even did our own version of downsizing: instead of a very tall tree which is difficult for the two of us to haul in and decorate, we opted for two smaller trees. We have done this for a couple of years now and it works out much better for us. Richard is not in as much pain while stringing the lights or trying to get a 10 foot tree straight in the stand.

The bonus of having two trees is we can use most of the ornaments we have collected through the years! Last night, Robert ate his Rocky Road ice cream and watched us string the lights on one tree and tonight we will tackle the other one. Robert enjoyed helping pick out the trees and will help put on a few ornaments as well. 

We don’t have him help with the lights as that is a very delicate operation that Richard and I have tried perfecting over the years. By perfecting, I mean we try to hang the lights and continue to speak to one another for the rest of the night.  (There’s something about stringing those lights . . . as a friend said, “hanging lights can make or break a family!)

Stringing lights on Tree #1
Again, success! J

Caregiving brings challenges and change and sometimes even downsizing but it can also remind us how precious time with family is and that change can be embraced.

Here’s hoping you enjoy your holidays and decorating too!  Just watch out for those Christmas tree lights . . .