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, CareGiving.com 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 CareGiving.com 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! 

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 . . . 

Caregiving Blog Party 2015

It is that time of year! Grab a cup of hot cocoa, a bag of tiny marshmallows (oh yes, I said a bag) and a few candy canes.  We are going to have fun this week!

Every year, Denise Brown hosts a Blog Party through her site for caregivers, CareGiving.com.  There are several other participants, including my husband who writes at PickYourPain.org and friends Kaye Swain (SandwichINK.com) and Shelley Webb (The Intentional Caregiver) along with many others.

Of course, no party is complete without prizes and presents! 

This week I will be talking about holidays, decorating, medications and advocacy and anything else that might come up (in caregiving, you never know). Each day I will give you a chance to win a copy of my book, “Forever a Caregiver,” – all you have to do is leave a comment on one of the blog posts.  At the end of the week, Richard and I will give away a grand prize of a $25 Amazon gift card. Visit either one of our sites to enter – just make sure you leave a comment in order to be eligible to win!

I am excited to participate again in this fun event and looking forward to reading the blogs of fellow caregivers. Getting a variety of perspectives during the holidays and during a caregiving situation is both helpful and unifying. 

To me, this season is all about being helpful and loving and giving and hopeful and bringing people together.  (I don’t expect much, do I?)

These may be high expectations for the season but we need as much goodwill and kindness now and all year long!

We just might need two bags of marshmallows . . .  

Epilepsy Awareness Month: CTE and Epilepsy – Making the Connection

The connection between blows to the head (even those not resulting in a concussion) and Chronic Traumatic Encephalopathy (CTE) is clear thanks to the persistence, innovation and research of Dr. Bennet Omalu, a forensic pathologist and the doctor who wrote the book, “Play Hard, Die Young: Football Dementia, Depression and Death.”

CTE is quite the hot topic right now because of the number of high profile NFL players confirmed to have CTE (including Junior Seau) and the NFL finally recognizing the dangers of repeated concussions. It doesn’t hurt to have Will Smith releasing a new movie, “Concussion”, which is based on Dr. Omalu’s work.

What exactly is CTE?

The UC Davis Medical Center (a university at which Dr. Omalu is part of the faculty) describes CTE as a “progressive, degenerative disease that results from repetitive brain trauma that can only be definitively diagnosed after death.”   CTE cannot be confirmed until a post-mortem brain analysis checks for tau proteins but brain imaging while the person is alive can be reviewed for “markers” of the tau protein. Interestingly, tau protein is “an abnormal protein common in the brains of elderly Alzheimer’s patients.”

The CTE Center at Boston University describes the symptoms of CTE as including “memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, anxiety, suicidality, parkinsonism and, eventually, progressive dementia.”

Robert has (or has had) every single one of those symptoms.

I am convinced there is a link between CTE and epilepsy.

I am no scientist. Heck, I couldn’t even take biology because I refused to dissect a frog. But I am pretty good at observation. And research. And taking notes. And being pretty darn persistent.

I know what Robert was like as a child. His motor and verbal skills were perfectly normal. He had trouble in school but mainly because he missed quite a bit of it because of doctor appointments and medications and seizures and he also was diagnosed with ADD (probably ADHD, now that I think about it).

Robert grew up on a variety of anti-seizure medications and did not wear a helmet until he was well into his twenties and continued to have uncontrolled seizures and falls.

There were a lot of head injuries and concussions. He had numerous falls resulting in all kinds of injuries (including a near-drowning) and more head injuries than any of us could count.

Robert’s head injuries alone could be the reason for the symptoms he now has.  The depression and attempted suicide Robert experienced as a teenager could have been the result of medications or epilepsy.  Or was it CTE?

More than a year ago, Robert was hospitalized for a few weeks because he could not use his legs. At the time, he was using a walker and we had to make the switch to a wheelchair. He quickly lost the ability to even transfer from the wheelchair to the bed or to another seat. He was sleeping constantly. He was very, very sick and his neurologist thought he might have “cervical disk disease with myelopathy.”  A CT scan showed he does have that but while in the hospital, the neurologist on rotation also diagnosed him with Parkinsonism. I asked about CTE and she agreed with me about seeing the symptoms.

Let’s include epilepsy in the discussion about CTE.

What if the falls and head injuries are not the only contributing factor to CTE?

What if the uncontrolled seizures are causing CTE?

What if the depression associated with epilepsy is actually because of CTE?

What if epilepsy itself is a cause of CTE? 

When I broached the subject with Robert’s Neuro Nurse Practitioner, she thought these were great questions. The neurologist, probably playing devil’s advocate, asked something to the effect of what good it would do to know whether epilepsy can result in CTE.

My answer:  PLENTY!!!

If there is a connection between epilepsy and CTE then the research can move in a whole new direction, possibly finding new medications and treatments for epilepsy.

If that is not reason enough, then consider:

If there is a connection between epilepsy and CTE, parents may be more inclined to make their kids wear a helmet. Our parents did not make Robert wear a helmet because he didn’t like it – it made him look different. (Keep in mind, this was before kids even wore helmets to wear a bike or before motorcycle helmets were required.)

If there is a connection . . . helmet technology would have even more reason to improve! Let’s make more improved helmets to better protect those precious brains during a fall.

If there is a connection . . . there is even more reason to strive for a cure. To reach 100% seizure control. If uncontrolled seizures can take Robert from a lively, outgoing, mobile rascal of a kid to a depressed teenager to a 50 year old who cannot remember what he did earlier in the day, then it can happen to others with uncontrolled seizures too.

If there is a connection . . . the availability of caregiver resources and respite will need to rise to the occasion. If we, as caregivers, are managing the health and well-being of a person with uncontrolled epilepsy and know that in the future there will be more and more care needed, then we have to be prepared. I would have loved to have known that Robert’s steep decline was just ahead as I began to care for him. Not because I would have refused to take on the job but because I would then know what I was in for and could plan for it.

If there is a connection . . . the availability of social services will need to increase. Day Programs and social service agencies handling an increasingly needy population will be understaffed and underfunded if we do not recognize the decline in people with uncontrolled epilepsy. These agencies are already understaffed and underfunded but gathering data about the impending increased needs of consumers will allow these agencies to plan for it.

If there is a connection . . . research will have to improve and become better funded. There is already an enormous burden on the healthcare system to care for the chronically ill, disabled and elderly. Robert’s care is paid for by Medicare and Medi-Cal – I know the extraordinary costs associated with his care and know the government (and, frankly, the people) are paying for it. Multiply his costs by a million (a third of those with epilepsy do not have seizure control) and the numbers are . . . , well, ridiculous. (I am not a mathematician either.) 

I am not trying to alarm anyone who has uncontrolled seizures or who is caring for someone with uncontrolled seizures.

I understand no one wants to talk about the long-term effects of uncontrolled epilepsy. We want to be in the category of those with epilepsy living long, productive lives. The long-term effects can be scary as hell.

However, just as many people don’t realize SUDEP is a very real risk from uncontrolled seizures, a possible link between epilepsy and CTE needs to be discussed and researched.

Let’s at least include epilepsy in the discussion of CTE. Let’s do some research to see where this takes us.

Let’s give families another reason to find a cure for epilepsy and to get the support and help they need in treating epilepsy.

Let’s not be alarmed – let’s do something about it.

Epilepsy Awareness Month: 30 Facts about Epilepsy

A reader of the Robert’s Sister Facebook page recently asked if she could share the epilepsy series I did a few years ago (30 Facts in 30 Days). (Of course I said yes!)

Bonus fact: First Aid for Seizures
(courtesy of the Epilepsy Foundation
of Greater Los Angeles)

A friend of hers had epilepsy and she wanted to spread awareness in support of her friend and even contacted a television station to ask if they would feature a story about epilepsy.

What a terrific friend!  This reader not only was there to support her friend with epilepsy but wanted to share information with the world in order to spread awareness and education about epilepsy. She didn’t have to spend extra time doing that but she did.

Many people with epilepsy lose their friends or feel overwhelming isolation – even ridicule. I believe that is changing as more people start to understand epilepsy and advocate for themselves and their friends.

The last I heard, the television station hadn’t responded to her but I greatly admire her efforts!

It has been a few years since I posted the facts about epilepsy so think this is a perfect opportunity to do so again. I have double-checked and updated the facts (adding new ones and removing others) from my previous posts and am posting them all at once.

Please feel free to share these facts in order to help spread epilepsy awareness. The more we talk about this disease, the more comfortable people will be hearing about it and the less isolated those with epilepsy will feel.

Here we go:

Fact 1:  Epilepsy is the 4th most common neurological problem behind migraine, Alzheimer’s disease and Stroke.  (www.epilepsy.com)

Fact 2: 3 million people living in the United States and 65 million worldwide have epilepsy.   (www.cureepilepsy.org)

Fact 3: Epilepsy is not contagious. (www.cdc.gov/epilepsy)

Fact 4:  Seizures can be as simple as what looks like a brief lapse in attention to muscle spasms or convulsions.  (www.cdc.gov/epilepsy)

Fact 5:  Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  Yes, COMBINED! (www.cureepilepsy.org).  

Fact 6: It is a MYTH that a person can swallow their tongue during a seizure. THIS IS IMPOSSIBLE!  Also, nothing should be placed in a person’s mouth during a seizure. (www.epilepsy.com) 

Fact 7: Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, brain infections and many other factors. (www.epilepsy.com)

Fact 8: Famous people who have or had epilepsy:  Vincent Van Gogh, Bud Abbott (of Abbott & Costello), Danny Glover, Margaux Hemingway (granddaughter of Ernest); a Pope (Pius IX); royalty (Prince John); a former congressman (Tony Coelho) and musicians (Adam Horovitz of the Beastie Boys and Prince). Harriet Tubman, Socrates and Julius Caesar are thought to have had it as well.  (www.en.wikipedia.org)

Fact 9:  In 1990 Congress passed the Americans with Disabilities Act but according to the World Health Organization, as recently as the 70’s it was legal to deny people with seizures access to restaurants and theatres. There were even laws forbidding people with epilepsy to marry or become parents and some states allowed sterilization!  (http://www.who.int/mediacentre/factsheets/fs999/en and www.epilepsy.com)

Fact 10:  Most people with epilepsy live a full life but the mortality rate among people with epilepsy is approximately 2 to 3 times higher than the general population. Up to 50,000 deaths occur annually in the U.S. from SUDEP (Sudden Unexplained Death in Epilepsy), prolonged seizures, and other seizure-related causes.  (www.cureepilepsy.org and www.sudep.org)  

Fact 11:  Epilepsy surgery, medication (anti-epilepsy drugs or AEDs), Vagus nerve stimulation and dietary therapy are treatment options available for people living with epilepsy.  (www.epilepsy.com and www.epilepsy.org)

Fact 12:  Many people with poorly controlled epilepsy also have depression and feel isolated. Personal friendships help develop good self-esteem which reduces depression.  (www.epilpesy.com)

Fact 13:  Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  (www.epilepsy.com)

Fact 14:  In over one-third of people with epilepsy, seizures can’t be controlled with treatment which can lead to brain damage and death.  (www.epilepsy.com and http://www.ncbi.nlm.nih.gov/pubmed/14999166)

Fact 15:  Approximately three-fourths of people with epilepsy world-wide, living in lower to middle income countries do not get the treatment needed. (www.who.int/mediacentre/factsheets/fs999en) 

Fact 16:  Mood disorders are related to epilepsy and can be a side effect of either the seizures and/or the anti-seizure medication. (www.epilepsy.com)

Fact 17:  The word epilepsy is derived from the Greek word for attack and was one of the first brain disorders described (it was mentioned in Babylon more than 3,000 years ago). Hippocrates, in 400 B.C., was a forward thinker – when others thought those with epilepsy were “possessed” with this “sacred” disease, he suggested epilepsy was a disorder of the brain. (http://www.epilepsiemuseum.com)

Fact 18:  Seizure Response Dogs can assist a person with epilepsy by pushing a life-alert button, retrieve a phone for the person as well as comfort and protect the person during a seizure.  (https://www.pawswithacause.org)

Fact 19:  “Ten million people in Africa are affected by epilepsy, and 80 per cent of those are not treated with readily available modern drugs.”  Professor Ley Sander, Epilepsy Society’s medical director. (http://www.epilepsysociety.org.uk)

Fact 20:  1 in 26 people will develop epilepsy in their lifetime.  (www.epilepsy.com)

Fact 21:  Epilepsy research needs better funding.  The 2013 Estimated National Institutes of Health Research and Private per Patient Funding Statistics outline this need (www.cureepilepsy.org ): 

Epilepsy:  $74 per person

Alzheimer’s:   $189 per person;

Autism: $464 per person;

Parkinson’s:  $603 per person;

Fact 22:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a certain period of time, ranging from a couple of months to over a year, before they are able to obtain a license. Check the DMV in your state to get the specific rules.  Epilepsy Foundation also has a database with driver information by state. (https://www.epilepsy.com/driving-laws)

Fact 23:  A seizure can be described as an electrical storm in the brain. Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain. (www.epilepsy.com)

Fact 24:  In two-thirds of cases of epilepsy, no cause can be found. So many conditions can cause epilepsy or are related to epilepsy that it can be difficult to track down the exact cause. (www.cureepilepsy.org)

Fact 25:  Women living with epilepsy have unique issues to manage. Some antiepileptic drugs can interfere with the efficacy of oral contraceptives and have a greater risk associated with birth defects. Half of women with epilepsy report increased seizures around the time of their menstruation and it’s been found that menopause and perimenopause can cause changes in seizures as well.  (www.epilepsy.com)

Fact 26:  Men with epilepsy have their own hormonal changes which can be caused by both the seizures and from the antiepileptic drugs. These changes can affect mood as well as reproductive function and fertility.  (www.efepa.org)

Fact 27:  Epilepsy results in direct and indirect costs of nearly $15.5 billion yearly. (www.cdc.gov/epilepsy)

Fact 28:  The strongest risk factor for SUDEP is having frequent, generalized tonic-clonic seizures. (www.chelseahutchisonfoundation.org)

Fact 29:  Seizures have three parts: a beginning (sometimes involving an aura), a middle (the “ictal”) and the end (postictal) which can involve confusion, sleepiness and memory loss. (www.epilepsy.com)   

Fact 30:  Inspiration and motivation to help sometimes comes from having a personal experience with epilepsy (and other conditions or diseases). Various organizations and resources are available and were formed after having a personal experience with epilepsy (many of whom are cited in this post):  CURE: Citizens United for Research in Epilepsy ; Talk About It Organization; Epilepsy Foundation;  International Bureau for Epilepsy;  International League Against Epilepsy; Chelsea Hutchison Foundation.  

Help spread the facts! Whether you post on Facebook, tweet a fact or two (or all 30) or talk about them you are helping spread education and awareness about epilepsy.

And THAT’S a fact! 

Epilepsy Awareness Month 2015: A Sea of Advocacy

Our recent trip to the Epilepsy Awareness Day at Disneyland brought us face to face with many wonderful and inspiring advocates – all full of life, laughter, education and a passion for managing and curing epilepsy!

Epilepsy Awareness Day at Disneyland not only is a way for families affected by epilepsy to connect with others while being at the Happiest Place on Earth, it is also an educational opportunity.  EADDL was started three years ago by Brad Levy and his wife, Candy, along with the enthusiastic support of pediatric neurologist, Dr. Diane Stein. These three are tireless advocates not just for great epilepsy care but for a cure for epilepsy.

Dr. Diane Stein and Robert

While I did not have an opportunity to meet the Levy family (next year for sure!), I did meet Dr. Stein as did Robert. They became fast friends and we promised to participate in the International Epilepsy Day which is February 8, 2016. 

Fact: There are approximately 65 million people world-wide living with epilepsy (Epilepsy.org). 65 million people affected by epilepsy – not even counting families, friends and caregivers!

There were so many advocates at EADDL!

Julie Hutchison and
Robert in a  Mickey Mouse nose

Seeing Julie Hutchison, founder of the Chelsea Hutchison Foundation, is a delight for me (and obviously Robert). Julie’s foundation is a founding partner of the EADDL and has raised money to bring several families to the event each year. Also, through their advocacy, CHF recently gave their 84^th grant for a seizure response dog! Julie’s story is one of resilience yet is heartbreaking. Julie and her husband, Doug’s beautiful daughter Chelsea died from SUDEP.  They walk through that unfathomable grief to help others. Julie shared with me during one of our chats, “It is the reason I get up in the morning.” That kind of advocacy is an inspiration.

Julie is an inspiration.

Fact: Epilepsy is also a disease that can be deadly.  According to CURE Epilepsy, “It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents." 50,000! This number stuns me every time I read it.

The EADDL Educational Expo brought a day of speakers and a large conference room of advocates and exhibitors. The Expo was full of a wide variety of organizations sharing information (medical professionals, dietary experts, medical technology companies, service dog companies and many, many others. You can see the complete list here.) 

EADDL 2015: Expo Room

Another EADDL founding partner, the Danny Did Foundation, was at the Expo. CURE Epilepsy was there. The Purple Peace Foundation was there. Livy’s Hope, Sophie’s Journey, International League Against Epilepsy all were there.

EADDL 2015: Expo Room

Families visited each booth soaking up the information so they can be the best advocate they can. 

Fact: While two-thirds of people with epilepsy are able to find good seizure control, the fact is one-third do not (Epilepsy.com).  That is one-third too many!

Many advocates and organizations were borne out of the loss of someone to epilepsy or have been affected by epilepsy in some way and are advocating for the cure or management of epilepsy.

All an inspiration. All doing something to manage or cure epilepsy.

The day in Disneyland did not have had exhibitor booths but there were probably a couple of thousand families enjoying the park in their EADDL purple shirts. Each one of them an advocate in their own way for their friend or loved one with epilepsy.

Watch out, Epilepsy! You cannot win against this much advocacy.  

EADDL 2015: A Sea of Advocacy

Epilepsy Awareness Month 2015: Caregiving. Family. Advocacy.

It is hard to believe it has been seven years since I first started caring for Robert.  In the fall of 2008, Robert had recurring infections and allowed a stranger to live in his house (a homeless woman he and his companion, Judy, met while picking up their prescriptions).  By Thanksgiving, this woman had given Robert a black eye, Robert’s infections continued to recur and I realized he was eating expired food and living in less than clean conditions.

Mere weeks later, Robert was living in a Skilled Nursing Facility near my home on a long-term course of antibiotics, the new “roommate” had been given money by Other Brother and strongly encouraged by both of us to find another place to live and I was faced with the reality that Robert could no longer live independently.

It was a giant snowball of a mess, quickly gaining speed and intensity into full-time caregiving. 

I did not even realize what I was doing or that “this” was caregiving.

And that I was now a caregiver.  

Robert’s decline from a lifetime of uncontrolled epilepsy, almost daily seizures, dozens of medications, surgeries, falls and infections have resulted in a fast and furious decline in cognition and mobility. Eventually, his decline was labeled as “CTEM” or “CTE,” Cumulative Traumatic Encephalopathy (brought into awareness recently by football players who have suffered from repetitive concussions). 

(I will talk more about this later in the month.)

I started this website in 2009 thinking it would be used to update family and friends. I soon became passionate about spreading awareness about epilepsy and, frankly, was getting pretty darn irritated with the stigma it still carried.  Not to mention the underfunding of research to find a cure!

It did not take long for me to realize my focus of the website but, more importantly, a passion and purpose: Caregiving. Family. Advocacy.

What do these mean to me? (Thanks for asking!) J

Caregiving. Hard work and requiring a lot of learning on the job flying by the seat of your pants. Caregivers help each other and are the hardest working people I know. It is hard work whether from daily tasks (many of them unpleasant) to fighting for quality care and resources.

Family. Not always unicorns, puppies and rainbows.  Well, rarely unicorns, puppies and rainbows but always, ALWAYS love. Being there for one another – not necessarily daily but when needed.  Anyone in a family can attest to how messy relationships can be! And, yes, sometimes there are also unicorns, puppies and rainbows.

Advocacy. Making change, educating, helping others when they cannot help themselves. Relentless pursuit of quality care, resources, answers and a life lived to the fullest (for both the caregiver and caree). 

For the past several years, I have participated in the efforts to raise awareness and spread education about epilepsy during Epilepsy Awareness Month. You can read a few samplings and recaps of past years here, here, here and here. 

I asked readers what they wanted to see this year and the response was: What is the impact of epilepsy on the caregivers?  What is life like for Robert? Repeat the educational series for those who might have missed it.

In other words, Caregiving. Family. Advocacy.

Before we get into the education, the impact of caregiving and more about Robert, let’s start with a reminder of who Robert is (“Mr. Excellent” for those familiar with him). Robert describes everything as excellent at every opportunity. Whether he is in the ICU sick with pneumonia and sepsis or enjoying his Rocky Road ice cream, Robert has taught me and many others, The Magic of Excellent, (which helps when he is driving me crazy - because that is part of caregiving, too). 

Richard, Robert and I created this video earlier this year and I think it is the perfect way to kick off Epilepsy Awareness Month 2015. 

Wishing everyone a month of Excellent!

Preparation for Respite Weekend

Respite Weekend was a definite success but getting here was no easy feat!

Even though we are officially “entitled” to twelve respite nights per year from Robert’s social services agency, we have not even come close to taking advantage of that.  

Dropping Robert at respite. 

It isn’t even all our fault.  The social worker flat out told us that, yes, we are “entitled” to twelve nights (and I put that word in quotes because I pretty much hate the concept of being entitled to anything but that’s what they call it).  However, there are fewer and fewer care homes that are open to taking clients for respite.  These facilities make their money on permanent residents so the availability for a few respite days in a dwindling field of options is slim. 

We lucked out, though.  We were flexible with our weekend and it only took six weeks to find a facility that was able to care for Robert’s growing needs. 

Step one, complete.

Time to visit the facility. This usually would include all three of us but on the day it was set up, Robert was going into a tailspin from his new medication.  So, party of one (me) visited the facility. The staff was nice; the owner answered all my questions; it was quiet and clean. Robert would even have his own room which was an added bonus.

Step two, complete.

Next, there was the paperwork. No problem!  I can slay paperwork with two hands tied behind my back (yep, that’s me typing with my nose). 

Paperwork for the social services agency and paperwork for the care facility – done and done.

Step three, complete.

Time to send the care facility my “Getting to know Robert” document and his one page summary sheet.  Both of which are meant to avoid any medication or behavior confusion or problems. Information such as “He prefers to be called Robert and will remind you of that if he is called anything else” and “Robert loves to brush his hair and shave and would do so several times a day if given a chance” as well as a breakdown of our usual schedule and medication dispense times are included. 

(Updating this document was actually surprisingly sad. The last time we had taken Robert for respite was May 2014 when we repainted our house before selling it. Robert was still using a walker full-time and even dressed himself with just a little assistance from me. He now uses a wheelchair, only using the walker for short distances and he needs almost complete assistance dressing. The decline is much more dramatic than I would have thought if I hadn’t read it myself!) 

Unintentionally, these documents raised more questions for the facility than they answered. He uses oxygen at night which caused all kinds of concern and created a lot more paperwork. “Oh! I didn’t know he used oxygen!” “We need a special form for the oxygen use!” Somehow the case manager hadn’t relayed the information about Robert needing oxygen to the care facility. Argh! Coincidentally and something of a miracle, Robert had a pre-scheduled pulmonary appointment a few days before going to respite. The facility sent over a form for the doctor to sign regarding the oxygen plan and the social services agency sent me over a form for the doctor to sign. Hashtag overkill! (I hope I didn’t say that out loud.)

Out of the blue, the new pulmonary doctor decided to try out a different oxygen plan – let’s discontinue the oxygen for a trial period.  He doesn’t want Robert on oxygen at night because he thinks it actually may cause more breathing problems instead of helping him.

Fantastic. Can you please write that down and sign here? And here?

Step four, complete.

Laundry, packing, counting medications and re-counting medications, completing the medication form, loading briefs and disposable pads were next. Whether Robert goes for three nights or seven, the amount of supplies he needs would supply a small village. A very incontinent, small village.

Or fill a small Jetta.

Step five, complete.

The easiest step was dropping Robert off.  He is such a good sport and makes friends so easily!  One of the staff members actually knew Robert from his time living at the Board and Care Home. Everywhere Robert goes, someone seems to know him. He delights in this sort of “celebrity.” 

While I finished signing more paperwork (I am not kidding), Richard ran to the store to get some chocolate ice cream. We couldn’t bring Rocky Road because someone in the house has a nut allergy but I am sure Robert was just as happy with the chocolate.

Richard and I said our goodbyes to Robert and he smiled and said, “God Bless You.”

Step six, complete.

After all this, I really did need respite!

Respite Weekend: Declared a Success!

Getting to respite was not easy but let’s not focus on that.  (You can read about that on Tuesday.)

Today we are jumping for joy because respite weekend happened and it was a resounding success!

Sure, my plans for respite looked like this in my head:

See a couple of movies;

Go out to eat several times;

Sleep in;

Catch up on writing;

Work on the caregiving book I am creating with some caregiving friends;

Submit two articles;

Redesign/refresh the blog;

Fully clean the house;

Unpack all the rest of our moving boxes;

Reorganize my closet;

Go shopping for new boots;

Catch up with Other Brother;

Finish organizing our trip to Disneyland for Epilepsy Awareness Day at Disneyland;

Laundry;

Do my nails;

Get a massage;

What my weekend actually looked like:

Saw one movie (The Martian – amazing, funny, heartwarming and worth it!);

Ate dinner out (or brought it in) every night. Ate leftovers during the day;

Woke up at the usual time because my cat is used to eating at that time and is, well, persistent;

Did some writing (you’re reading it);

Worked on the book (yay);

Updated a small section of the blog. Okay, I revised my blog list on my blog. It counts;

Swept two rooms of the house;

Watched Richard move the full boxes from the living room to the garage;

Organized one corner of my closet. Okay, it’s a very tiny corner. Oh, alright. It was just organizing my unmentionables;

Thought about shopping for boots. (A lot);

Thought about Other Brother. (Not as much as the boots);

Bought t-shirts for Epilepsy Awareness Day at Disneyland;

I think I did a load of laundry;

Oops, forgot about my nails;

Got a massage (90 minutes long! Someone is spoil-ed!)

Richard and I even held hands walking to dinner and the movie! We never get to do that since one of us is always pushing a wheelchair.

Yep.  It was a success!

I admit, I was a little worried about Robert and I didn’t intend to call to check up on him but I did.  I was slightly worried about him since he still has a cough, he is “due” for a seizure cluster and he also has what looks like a boil on his shoulder which I haven’t taken him to the doctor for yet. 

(Do you know why I haven’t yet taken him in?  Confession! Because I was worried it might interfere with respite. Bad sister! But seriously, I didn’t want to add any medications to the list and knew this was not a life-threatening skin problem. Don’t worry - he will see a doctor about it next week if it hasn’t cleared up.)

Robert was enjoying lunch when I called and had slept in until noon.  Sounds like he is having an excellent weekend! 

I pick Robert up in the morning and am excited to hear all about his weekend. 

I feel refreshed and happy with what I did accomplish this weekend, the time spent with Richard and the ability to just turn off the medication alarms on my phone.  Even if my cat wouldn’t allow me to sleep in, it was nice not to be tied to the medication schedule.

Yes, success!

I wonder if the shoe store is still open . . .

Oh God! We’re Talking About Sex and Caregiving

I am seriously uncomfortable talking about sex. To me, this is something that is private and should never be discussed. Ever. Not in a million years. Well, okay, that is an exaggeration.  Of course I talked about sex with the kids – heck, even around the dinner table. But certainly not in every day casual conversation or on a public blog!

And, yet, here we are.

Talking about sex.

Caregivers handle a variety of tasks, problems and situations. We wipe bottoms, change wet adult briefs, give baths, clean wounds, fight with social service agencies and insurance companies, provide special diets, find the right living situation or day programs, shuttle to and from numerous doctor/specialist/lab/imaging appointments, manage medications and do the best we can to keep our caree happy, healthy and safe.

And many have to navigate the delicate subject of sex and their caree.

Count me in that group now.

We recently changed Robert’s medication in order to get better seizure control and bring his ammonia level down. One of the side-effects of a high ammonia level is excessive sleepiness. Robert wouldn’t admit to sleepiness yet would fall asleep at the drop of a hat.

The neurologist’s nurse practitioner (the person we usually see at the appointments and who is terrific), agreed that sleeping through life was no way to live.

We decided to try something new even though I loathe medication changes. There is ALWAYS a problem. However, the high ammonia level was concerning as was his seizure clusters.

The neurologist’s NP reduced his Depakote which was the cause of the high ammonia levels and added a recently FDA approved drug, Fycompa. The change was dramatic! The seizures are few and far between and his ammonia level is going in the right direction. Robert is awake although still requires a great deal of sleep. 

At first we did not have any of the difficult side-effects of a medication change. I even sent a note to the neurologist’s NP exalting the miracle of this new drug regimen! Robert was awake, there was not a terrible change in his personality as there was with the Trileptal nor did his balance seem affected at first as it was with Vimpat.

Robert started out slow on the drug (only 2 mg in the evening) and then it was increased to 4 mg in the evening. Soon after the increase to 4 mg, Robert developed a terrible cough and I assumed he was headed toward pneumonia. He could barely walk as his balance was completely off and his legs seemed weak. As he walked he sank as if he was going to sit down. It appeared he had no strength in his legs and he needed a lot more sleep. I also noticed a huge increase in his water retention making his feet look like clubs!

He had the usual symptoms of when he is headed toward pneumonia (terrible cough and problems walking) but his pulse rate was not consistently high, his cough was not producing any mucus, his blood pressure went a little low but not “look out for sepsis low” and his oxygen level was only marginally lower than normal. His temperature was also normal but this is not unusual for him, even with pneumonia (it is also common for the elderly not to run a fever with pneumonia).

However, I was confused. Even though some symptoms indicated he was headed toward pneumonia, it was without the usual consistently high pulse and colorful mucus.

He also seemed to be developing a yeast infection on his penis because he was frequently rubbing it when going to the bathroom. His penis was red and he said it itched and was slightly painful. During this same weekend, he also started on a strong dose of antibiotics for the pneumonia symptoms. I was certain these couldn’t have caused a yeast infection since the “itching” started before he was on the antibiotics.

A few days after starting the antibiotics, Robert was difficult to wake up for his Day Program. He was groggy, slurring his words, and couldn’t keep his eyes open. An altered mental state and difficulty waking is just one symptom of sepsis and since his pneumonia and sepsis seem to go together like peanut butter and jelly, Richard and I made the decision to send him to the ER.

Robert during his recent visit to the ER

After spending an excruciating 10 hours in the ER and checking for a UTI, pneumonia and any other type of infection, as well as blood clots (because of his severe edema), and describing a possible penis problem (I have never had to say “penis” more often than during that visit), we were sent home with Lasix and a yeast infection cream. 

Almost immediately, the Lasix did the trick with his edema. The cough, the balance issues and what I started to refer to as the “PP” (penis problem), persisted. I checked in with the neurologist’s NP and she suggested the problems were due to the Fycompa. As with many anti-epileptic drugs, balance can be affected as can the mucus membranes. Within two days of taking him off the Fycompa, Robert’s cough all but cleared up and he was walking with much less difficulty.

Yet, Robert continued rubbing his penis.

Oh. Ewww. God.

I slowly realized there was not a yeast infection problem but Robert was engaging in a behavior rivaling any teenage boy.

Please hold while I check my caregiving manual. Nope. Not in there. 

Seriously? Robert is more awake now that his ammonia level is going down but this is what he wants to do with his time?

Oh. My. God.

Once Richard and I realized what was going on, we also realized this was happening for hours at a time. No wonder he was so sleepy in the morning! We realized this wasn’t just about newly awakened feelings but appeared to be a compulsion.

After some research, I found that epilepsy in the temporal lobe region can cause hyper-religiosity and hyper-sexuality. For some reason – perhaps the new medication, the reduction in the Depakote, a change in his seizure activity – something is causing Robert to have this sexual compulsion which is affecting his daily life.

And now mine!

As a caregiver, it is affecting my ability to care for him in several ways.

First is my extreme discomfort with this behavior. I have seen Robert have similar impulse control issues when he was a teenager and I am not very comfortable reliving this behavior. It became so bad thirty-plus years ago that Robert actually tried to sexually attack me when we were alone in my dad’s apartment. Robert seemed in a trance-like state as he came toward me when I was in bed and I had to physically punch him in the nose and run out of our dad’s apartment in order to get away from him. Our family went through much hand-wringing and had many family meetings about what to do with Robert at the time. Should he be placed in a group home? Why is he doing this? What should be done? 

The solution was for me to cease contact with Robert for at least several months and, as far as I know, Robert’s medication was changed. He and I never talked about it again.

It was a terrible time in our family history which I am sure is what is contributing to my extreme discomfort with this current situation.

Richard and I also have cameras in the house so if we are not in the same room as Robert we can still keep an eye on him and monitor any seizure activity. This is how we came to realize what was going on.

Ack. The things I cannot unsee!

Obviously, we can no longer monitor the camera in Robert’s room once he goes to bed. I am sure we are missing seizure activity.

Another concern for me is a lack of sleep is a seizure trigger for Robert. While we have not yet seen an increase in seizure activity since he has gone off the Fycompa, I expect it at any time. The lower dose of Depakote and the lack of sleep is a recipe for a seizure cluster if I ever saw one.

While we sort through Robert’s new behavior with his neurologist to determine if this is neurological, medication or seizure-activity related, the reality is that caregivers do sometimes have to deal with the sexual side of their carees.

This could be a loss of sexual intimacy between partners or spouses when one is caring for the other; a son or daughter might have to deal with this issue with their opposite sex, still sexually active parent and assisted living facilities may have situations come up between residents as well.

While this particular situation is a challenge for me right now, it is one of the many challenging aspects of caregiving. No matter what new challenges are presented to caregivers, they are met with research, conferences with doctors, possible medication changes and fierce tenacity.

Generally, I would add patience to that list but find myself currently challenged in that regard.

For me, even when my patience is waning I know that my persistence in finding a solution will get us through whatever challenge we face.

When a caregiver sees a new behavior – regardless of what that is or how uncomfortable we are with it – we have to figure out what is causing that new behavior, how serious of a problem it is and if it is affecting quality of life. I may have to eventually accept Robert’s new-found activity as a “new normal” but I won’t until I have ruled out that it is not indicative of a serious neurological problem.

Phew, we got through this! Talking about sex and caregiving wasn’t so bad after all was it?  

Death, Grief and Dreams

September 21 was World Alzheimer’s Day.  Alzheimer’s was not something that affected my parents or grandparents or other relatives but it has affected dear friends, their relatives and my dear, delightful, vivacious first Mother-in-Law. 

In honor of this beautiful woman, who was affectionately called “Bib” growing up (and for some reason, I always called her that as well), I posted a picture of her on Twitter with the hashtag #Take1Moment. This is a campaign that Caregiver Action Network created to “recognize caregivers who support their loved ones with Alzheimer’s disease.”

Bib (Betty) - Her birthday celebration in 2012

While I didn’t provide care for Bib, I saw how the disease affected her children and grandchildren and others who loved her and were her caregivers.  It was devastating to see this woman who was quite the fireball become lost in this awful disease. Bib ran a daycare most of her life and had such a wonderful connection with the children, they would come visit her years later.  She was a “glamorous grandma” and even took up modeling well into her sixties – fulfilling a lifelong dream of hers. She loved her friends, her family and even her beer and Seven & Seven.  She always had a twinkle in her eye and delighted in being mischievous. 

She once confided in me that the secret to her delicious green salads, aside from home-grown tomatoes and various other garden vegetables, was a sprinkle of sugar over the entire salad. 

Yep, that explains why her salads tasted like no other I had ever tasted. 

Bib was on my mind on September 21 but the entire day I had a nagging feeling there was something else I was supposed to remember about that day.  I felt like I missed someone’s birthday.  We have a lot of September birthdays in our family so I ticked them off in my head: Robert, Richard, Rich, Caty, Mark – nope.  None on September 21. 

Only in my dreams that night did I realize what my brain was trying to tell me. 

Rach, Trish, Mom, Grandma - August 1999

I woke up with a horrible feeling the next morning.  I had dreamt of my mom.  It had been a very long time since I dreamt of her (or, as I like to view it, since she visited me).  My dream was terrible, though.  I found out that mom, who died in 1999, had been alive this entire time and I didn’t know it.  I was horrified to find out she was living with Alzheimer’s in a care facility and that I had not visited her in 16 years. Oh, I was sick to my stomach! 

Bib’s daughter told me where my mom was and I finally found her.  I visited her and saw her living in a run-down facility but laughing with the other residents while keeping a beautiful, white puppy by her side.  She looked at me and didn’t seem to recognize me but then said to the other resident, “That’s my daughter. Just joking!”

She pulled a Robert.  Sometimes Robert will know something but say he doesn’t and then say it in a joking way. 

I knew Mom recognized me when she “joked” about it.

The guilt I felt was overwhelming.  (Seriously? I feel enough guilt during my waking hours and now I have to feel it in my dreams too!!?) 

The dream was vivid and real and Mom looked just as she did 16 years ago. It was no surprise she was with a puppy (I was surprised it wasn’t her beloved Sassy, though!). 

I woke up feeling exhausted and out of sorts.  Why did I have this dream about Mom?  Of course I still miss her after 16 years and as I approach my 55^th birthday, I am struck more than ever by just how young 56 years old was when she died.

Mom, Trish, Rachel - Monterey 1994

The guilt crept back that morning.  When did mom die, exactly?  How do I not remember the exact date?  It was in September.  It was after Caty’s birthday. 

Was it really September 21?  Is that why I had this dream?  Did I jumble the World Alzheimer’s Day and the day she died into a gigantic, confused ball of emotion? 

I frantically searched my files for the date she died.  My files are still not quite completely organized since we moved so I was becoming quite exasperated.  Even without confirmation, I knew September 21 was the day she died.  I finally did find my files and confirmed September 21 was indeed the day she died.  The entire period of her illness has not been forgotten but the exact date she died was tucked too far away for some reason.  Diagnosed in July 1999 and gone two months later.

Much too quickly.  Much too soon.

Grief is an unpredictable, wild ride.  Grief will rear up from the background completely unexpectedly but memories of Mom, Bib and others will always have a place safely kept in my heart and surrounded by love. 

Details may fade, guilt lessons, grief will soften but love will always remain strong.

Thank you for the visit, Mom.  

Tara, Rich, Trish, Robert, Mom - 1973(?)