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.