Helping Working Caregivers to Legally Expand the Definition of Family

Denise M. Brown, founder of Caregiving.com, caregiver advocate and my good friend was recently quoted in a New York Times article addressing the challenges of caregiving while working. As a caregiver who is both an employee and a manager, I have a bit of a unique perspective about caregiving while working. While caring for my brother, I manage a law firm but also have several employees who are or have been a caregiver to a family member.

As a manager, I am personally very supportive of my employees when they have these situations and work with them so they know how important they are to our firm but also so they don't stress about not being at work while handling caregiving duties. It may sometimes involve me running a little interference between the partners (my bosses) and the staff member but it is worth it. I have talented people working for me and I like to think we can work together to come up with a solution that works for both the business and the employee.

I feel lucky that my position can be somewhat flexible because I can bring work home or work on a weekend if I have to miss a few hours for Robert's doctor appointments or take a day off to move him (or meet with his care facility). As Denise suggests in a related post, I keep the partners who "need to know" in the know about my situation and they have been very supportive and understanding.

One of the issues I've run across as an employee is being able to take sick time to care for my brother. The definition of "family" under the Family Medical Leave Act (FMLA) and the California Family Rights Act (CFRA) includes caring for parents, children or a spouse. Siblings and grandparents are excluded at this time and many employers (including mine) follow the FMLA and CFRA definition for our sick time rules. Since I began caring for Robert, I've had to take vacation days to handle Robert’s doctor appointments, helmet fittings, emergency room visits as well as the time spent placing Robert in a care facility and all that entails (which adds up to a lot of hours!). So while my bank of sick time is maxed out (because I rarely take a sick day), I have exhausted much of my vacation time (and not because I take a lot of long vacations).

The Split Personality of Vacation

Some people call me a Pollyanna (okay, I call myself that sometimes too). I prefer to think of this trait as being “positive” and “optimistic” and not “naïve” or “completely out of touch with reality.”

Any situation can be viewed from different perspectives leaving some people happy as clams (hey, don’t knock it ‘til you’ve tried it) or Gloomy Gusses (and everything in between).

Vacation is rife with opportunities to see things in a positive light, letting one enjoy a break no matter what happens or to see all the obstacles standing in the way of a relaxing, enjoyable time.

Which would you choose? (In case you didn't guess, I chose Option B in each scenario).

Situation #1 (we’re going in chronological order here): On our way to the beach, we drop off our Princess Sassy at Other Brother’s house (Sassy is our Toy Pomeranian, and yes, she prefers to be addressed as “Princess”). Sister-in-Law engages in a very frank discussion (aka, intervention) about moving Robert into our house and lays out the reasons why it is not good for me, my health, my family or the health of my family.

Option A: Engage in an argument, be hurt and let this discussion temper the excitement of the beach (which is so close!).

Option B: Since I’ve known SIL for over 25 years, know she is coming from a genuine place of caring and of being a real sister to me. Wonder why the heck it took so long for Other Brother to tell her of these plans (okay, this was a minor distraction). Seriously consider every point she brought up and discuss the decision with Hubby again, revisiting each point (after vacation). We came to the same conclusion (moving Robert in with us but more resolved to have it be temporary if it affects our own health or well-being or family). Thank you, SIL, for making me think this through even more.

Situation #2: While I am sitting on the beach ten minutes after arriving to the coast, Robert calls to tell me he’s out of day time briefs (I had just visited him the night before and he was completely stocked with everything I provide for him. New Home provides the daytime briefs). I confirm the situation with the aide who tells me the shipment hasn’t arrived yet. House Manager is my next call and we have a discussion about (1) how in the world this could happen and (2) how she is going to get him more briefs (because putting him into the tape diapers instead of finding him pull up diapers takes away his independence and is not acceptable to me). After a discussion about why she can’t use his “P&I” account to go to CVS to purchase pull up briefs (it apparently takes a week to get proper authorizations), she agrees to get a few from Day Program that were there for back up.

Option A: Become angry, hostile and irritated. Sulk for the rest of the afternoon about the incompetence of whoever was in charge of ordering the briefs which completely distracts from the beauty of the day.

Option B: Recognize that I couldn’t be in a better place to solve this problem. Sitting on the beach, looking at the ocean, scouting the sea for sea lions while helping House Manager come up with a solution so Robert is dry and in briefs he can pull up and down when needed. I’d like to solve problems like this every day!

Situation #3: Good Lord, my step-daughter wants to get a tattoo!

5 Quick Tips on How to Help a Caregiver

Caregivers are a stubborn bunch (or so I’ve heard!). We take on caring for loved ones (or sometimes friends) even if it seems to others like an impossible undertaking. We may not always ask for help (in our defense, sometimes we don’t know what help to ask for) but there are ways to offer assistance that will be both welcomed and appreciated.

1. Ask what help the caregiver might need. You may have the best idea since the invention of the iPhone (faithful readers know of my phone addiction), but if it doesn’t work for the caregiver or their loved one, then it’s not a good idea! Ask the caregiver what she needs help with, not what you think she needs help with.

2. Offer to visit with the caree. A visit doesn’t have to last all day (and, in a lot cases, that may not be welcome anyway). There are caregivers who are with their loved one all the time. No, really. I mean All. The. Time. Offer to visit with the caree (or in the case of a certain someone, play cards) for thirty minutes or an hour so the caregiver can run to the store or can go to another room and call a friend – without worry tagging along.

3. Offer to grocery shop. It doesn’t have to be a full shop (and that offer would probably be met with resistance, anyway). Call the caregiver and say, “Hey, I’m going to the store. Can I get you some milk/bread/bananas/chocolate?” (Not necessarily in that order). The caregiver may take you up on it if they don’t think it’s a special trip you’re making for them.

Memories

Robert spent the day with us but it wasn’t until the drive back to New Home that we actually talked a lot. “A lot” being relative since Robert isn’t usually very talkative and the day didn’t allow for much talking time.

I picked him up after breakfast and he worked on his word search puzzle on the way back to my house (complaining about the shaky car – hey, it’s the road, not my driving).

Once we got home, he watched church on television which I had set to record before leaving the house to pick him up. (Okay, no judging! I realize it sounds odd that I make him watch church on television instead of splurging and taking him to an actual church but he likes it. Really!).

Robert then napped. (I’m not saying the two things are related. Just reporting the facts here.)

Next up, it was time for medicine and lunch. Oh, I hear you asking if I actually let him eat meat today. No, I did not. It was PB&J, chips and Rocky Road Ice Cream. (Wow. That sounds terrible in print. Does it help that it was whole wheat bread and organic jam?).

There was a bathroom break and then brushing his teeth (his dental hygiene habits are fabulous which is probably a good thing considering the lunch I just fed him).

Playing cards was next on the agenda. I won the first game (I know, look up and you just may see pigs flying around). He beat me the next game. (Phew – the world isn’t coming to an end!)

More meds. Thankfully, he reminds me! (I tend to forget the 2:00 p.m. dose.).

Time for the store. I want to make sure he has enough back stock of supplies to last while we’re gone for a few days. 7-Up, toothpaste, nighttime briefs and pens. (The last time I was out of town, his pen ran out of ink. What are the odds?).

Writer’s Block, Gratitude and Inspiration

It is Day 7 of the Blogging Challenge I am participating in and I have writer’s block. It’s the last day!! How could this happen to me!

Wait a minute . . . First of all, I don’t believe things “happen to me” – they happen and I deal with them. I am not one to wallow or wonder “why me” because I am too busy solving whatever problem has “happened” or enjoying whatever gift life is giving me.

I have writer’s block because I have told myself that on this last day of the Challenge, I need to be Brilliant (yes, with a capital “B”)! I need to be Inspirational!! I want to be Memorable! I need to go out of the Challenge with a Bang!!!

Nothing like a little pressure to stop my fingers in their tracks, refusing to type! Write something? Nope. Let’s clean. Let’s play Word with Friends. Let’s catch up on the news and banking. Let’s read other people’s blogs! I kept going back to look at a blank page and the words would still not come. (I assure you, this is a rare event. I am never at a loss for words – just ask Hubby!).

Because I recently watched a friend’s inspiring video on those destructive thoughts our brain sometimes peppers us with, I decided to acknowledge the self-sabotage I was engaging in.

I have writer’s block. Gee, that’s interesting! Thank you for being there today. Now, just move over so I can write. That wasn’t so hard. Still there? Just shush for a minute – I’m busy writing.

Today is all about gratitude and inspiration! I want to share what I am grateful for and why I am inspired.

Epilepsy: Social and Economic Ramifications

What better week to discuss social and economic turmoil! The stock market has had more ups and downs than the Giant Dipper in Santa Cruz (I don’t even want to look at my 401(k) right now), the rioting in London was pretty darn scary and congress is acting like a bunch of preschoolers fighting over the last cracker at snack time (and giving preschoolers a bad name in the process!).

The big picture seems a bit grim but I have to believe things will turn around and people will again regain their sanity and stop looting and rioting, the market will regain stability, congress may even start to work together out of necessity (and the threat of being voted out). Heck, the housing market may even improve. (Hey, I can dream).

While the world seems to go mad on a large scale, there are people on an individual level continuing to do the best they can to manage their own crises and daily lives. People caring for their disabled or elderly spouse, parent or other loved one cannot stop doing so because the stock market took a dive or congress is squabbling. It might actually create extra stress, however, because caring for a disabled or elderly family member is not only hard work, it is expensive.

Any chronic illness or disability has serious economic and social ramifications. Epilepsy is no different.

Even people with well controlled seizures may have problems holding a job. A person may only have a seizure once or twice a month but, at this rate, the person with epilepsy will not be allowed to drive, could be deemed to have an attendance (or tardiness) issue at work and be dismissed. (Fortunately, the Americans with Disability Act, enacted only as recently as 1990, protects persons with disabilities from discrimination in employment, access to transportation as well as access to state and local government programs.). Even with this protection, people living with uncontrolled epilepsy (estimated at 30% of those with epilepsy) will find it difficult to find and keep a job.

Anti-seizure medications may affect a person’s memory and ability to function not only at a job but in school as well. An advanced education may be out of reach for much of this portion of the population. Robert managed to get through high school (with great effort and much to the relief of our mom) and was even able to take some courses at a community college but because of the effects of the seizures and medications, he was unable to complete an advanced degree. (He still believes he has a “BA in Psychology” which had been an important goal of his.).

Vacation Without Guilt

Our family is going on vacation soon! We make an annual trek to the ocean to relax and recharge while indulging in dreams of living near it one day. I cannot wait to smell the fresh air, put on a sweatshirt in the cool morning, hear the waves crash along the shore and scout for sea lions lazily hanging out under the pier or out for a swim. Strolling through the shops of a little seaside town and feeling the relaxation wash over me while giggling with my kids and Hubby brings such bliss!

I mentioned our upcoming trip to a friend who innocently asked, “Is Robert coming with you?” My guilt (an ever present companion in my life) immediately sprung up and settled in comfortably, expecting a long stay.

No, Robert is not coming with us (it stings a little to say that).

The truth is, caregivers need a break sometimes. Robert lives in a care facility now but I visit him two to three times a week, bring him to our house every other weekend, keep him stocked full of supplies, take him to doctor appointments, order new equipment and make sure his facility is adequately caring for him. My phone never leaves my side in case I am called to the hospital because of a fall or asked to talk Robert into taking a shower. I am always “on” – ready to spring into action at any moment.

Compared to other caregivers, though, I have it pretty easy!

One in five households in the United States is involved in caring for someone sick or disabled (that’s over 44 million Americans!). An average of more than 20 hours per week is spent caring for a loved one and 60% of those providing care work (or have worked) outside the home while providing care.

Well, after reviewing these stats, it appears I’m the “average” caregiver. Heck, I’m even close to the average age range for a caregiver (46 years). (For those of you who celebrated my 50th birthday with me last year, I did say “close!”).

Am I up to the Challenge?

My regular readers are probably wondering what the heck has gotten into me since I’ve been posting every single day this week! Other Brother most likely can’t keep up (but I know he will eventually because he’s a good brother like that), Hubby is wondering when we might be able to spend a few minutes together and my lunch break consists of madly trying to cram in reading other blogs (a requirement of the Challenge) and figuring out what to write each day (if only that led to dropping a few pounds!).

Sheesh, even my cats are wondering why I won’t share the computer screen with them as much any longer (my cats love to take over my desk when I write).

What’s behind all this insanity? I have committed to take part in a 7 Day Blogging Challenge! Can I write something every single day? I wasn’t sure but wanted to give it a try. Before accepting the Challenge, I expressed my doubts to Hubby and Daughter and they looked at me like I was crazy (for some reason they think I am never at a loss for words).

I really want to complete this (not just for the fabulous prizes) but to prove to myself that I can. The only dilemma, like everyone else, is I can’t let go of my other commitments. I still work; I still visit Robert; I still want to spend time with my family and I have to tend to those pesky other things like eating and sleeping!

This actually sounds a lot like a problem faced daily by caregivers, not just those of us accepting a new commitment to blog every day for a week. Caregivers accept a challenge to take care of a loved one every day and still cram in all the “normal” stuff – many times it’s raising a family and working as well as caring for a family member! And they do it without seeing an end in sight or the possibility of winning great prizes.

Caregivers accept the Challenge every day and I am in awe of the strength shown by all of the caregivers I know.

I could go on but I have a deadline to meet!

Ice Cream and Emus

Going to the California State Fair is one of my favorite summer activities. I can’t explain it but am pretty sure my love affair with the State Fair began when my daughter was just two years old. We would go on “kid’s day” so admission was manageable (free) and we would bring in our own food (oops, did I say that out loud?! Isn’t that against the rules? What is the statute of limitations on that?).

Daughter and I would meet friends and see all of the animals – petting zoo, livestock, baby animals, horses and elephants (my now grown, college-age, Animal Science major loved animals even back then). We would sometimes drag my Mom with us who, after a couple of years of walking around in 110 degree temps at our hyper-speed pace, was suddenly “busy” with “other plans” during every single day of the State Fair. What are the odds?


Hello!

This year, Hubby and I attended the fair with Robert. A few things have changed since Daughter was little and Grandma trekked through the fair with us – the weather was milder, I signed a petition to remove the live births from future fairs and, in my own version of a protest, refrained from seeing the baby animals (but, I confess, couldn’t stay away from the kangaroos and emus).

I’m happy we didn’t skip the emu because Robert was fascinated with this creature! Every time the emu ventured over to us, Robert would say, “hello” in such a way I expected the emu to respond back!

Living with Epilepsy

When I started my latest educational series about epilepsy, I wanted it to contain as much information as possible so people were more aware of this disease. What is it? What do I do if someone is having a seizure? How is epilepsy treated?

I looked up statistics and facts and research studies (learning a lot along the way!) but I also wanted to tell people what it’s actually like living with epilepsy. Since I don’t have epilepsy myself but my youngest brother does, all I can do is share his personal experience of living with epilepsy his entire life. Forty-five years of epilepsy and, in his case, uncontrolled (also called “intractable”) seizures.

Robert’s case is a “worst case scenario” since only 10% of newly diagnosed cases of epilepsy fall into the uncontrolled category. Many, many people have their seizures controlled with medication, surgery, diet (or just stop having seizures for no known reason!) and are able to hold down a job, get a driver’s license and raise a family. Those with controlled epilepsy live with it by managing their rigid medication schedule and frequent visits to the neurologist in between soccer games, date nights with their spouse and grocery shopping (“normal” stuff). Of course, there may be breakthrough seizures that put a glitch in these activities but the seizures are manageable for many people living with epilepsy.

How does someone with uncontrolled seizures manage to live with them? If there’s one thing I’ve learned from Robert it is that you play the best hand you can play with the cards you are dealt – and you will always come out winning! (Unless you’re me playing an actual card game against Robert and then, well, I’m losing).  :-)

How is Epilepsy Treated?

At Robert’s recent EEG appointment, I overheard the nurses talking about epilepsy and how it is a “forgotten disease.” They said someone needs to shine a light on epilepsy and thought if a celebrity had a child with epilepsy it would help raise funds for research. I don’t know about that since there are celebrities with epilepsy in their families and the disease still hasn’t really been one to “catch on” as far as funding.

I’m not a celebrity but am all for shining a light on epilepsy!

Epilepsy is the third most common neurological disease in the United States behind Alzheimer’s Disease and stroke. According to the Epilepsy Foundation its prevalence is greater than cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

Before getting side-tracked with a slight challenge presented by the Building & Planning Department of our city, I was in the middle of an educational series about epilepsy which started with what it is and how to not be fearful of seizures (and even how to help if someone is having one).

There is so much to discuss about epilepsy but people first searching for help want to know about treatment options.

Robert falls into the 10% of those whose epilepsy cannot be controlled even with optimal medical management. Robert has probably tried every possible treatment available but continues to have several seizures a week (most likely several per day but many of the absence seizures go unnoticed). Robert has always been willing to try new medications or to participate in research studies in order to find a way to stop his seizures and to help others.

Like any medical challenge, treatment of epilepsy has evolved over the years and, with any luck, will continue to evolve until everyone is able to enjoy complete seizure control (hey, I can hope!).

Never Take “No” For an Answer

We found the Golden Ticket! We found the Golden Ticket!

When the Building & Planning Department told my Hubby garage conversions weren’t allowed in our city unless we constructed a paved car port elsewhere on our property (not in front of our house, but on the side where there’s actually no room for two cars) and then told him variances were denied “99.9 percent” of the time (even after Hubby explained the conversion was for his disabled brother-in-law, I felt defeated. My eyes welled up, not believing that after carefully weighing the decision to move Robert into our home, we would be stopped from doing so by a nonsensical city code.

The tears lasted all of 30 seconds and were quickly replaced with anger and a call to action. How can we get around this? What is the best way to be in that tiny, tiny percentage to successfully lobby for a variance? Certainly they can’t make me almost double the cost of a garage conversion with their paved carport requirements (not to mention it being physically impossible to squeeze in a carport where they insist it be located)!

I talked to a few of the attorneys I work with and they came up with a variety of ways to design the garage and our side yard to meet the requirements (leaving Robert with little room) and suggested ways to ask for the variance. The best suggestion of all was simple: start with the basics. What code are they referencing to deny us a variance? The code the clerk handed Hubby wasn’t explanation enough for me.

I found the Rancho Cordova Municipal Code and scoured it from the beginning. Finally, I found the code addressing “Reasonable Accommodation” which provides a process for requesting “reasonable accommodation for persons with disabilities seeking equal access to housing under the Federal Fair Housing Act and the California Fair Employment and Housing Act in the application of zoning laws.”

Hallelujah! “Reasonable” is mandated by code! From what I can tell, this means we do not have to apply for a variance, we can just apply for the permit to convert the garage without jumping through the hoops of building a second garage. This is the common sense provision I was looking for.

Robert’s Renovation – Update

Many of you know I am not a fan of nonsensical rules whether it’s from New Home, our healthcare system or government agencies. I love simplicity and although creating both a bathroom and bedroom out of a garage isn’t completely simple, it seemed easily doable. After all, millions of garages must have been converted into living spaces over the years.

Apparently, not always with the proper permit.

Okay, okay. I have a confession to make before going any further. In the interest of full disclosure, my Hubby and his brothers actually constructed a wall in the garage a few years ago when Hubby thought having space for an office in which to do homework for him and the kids (he’s in school too) sounded like a good idea (and no, like thousands of other families, we didn’t get the proper permit for it). The “room” was created but without finished flooring, ventilation or heating and air. There were, maybe, two months out of the year comfortable enough to be in the room so homework was back inside the house being done at the dining room table. The “room” evolved into a work out space (for about a minute) to its current use as a storage space for all puzzles and games and crafts and party supplies and old furniture and (oh, yeah) exercise equipment that I knew ONE DAY I would use again.

Finishing the room and adding a bathroom seemed like a natural solution when we decided to move Robert in with us (not to mention an excellent excuse to sell off that exercise equipment). We don’t have a shower or bedroom downstairs in our house and Robert can’t manage stairs so this seemed like such a simple solution. How hard could it be to finish the room by adding a/c, plumbing and cable?

Apparently, pretty darn difficult if you live in the city of Rancho Cordova, California.

Hubby decided to help out the contractor by investigating the permit fees for garage conversions. He was quickly told garage conversions are not permitted unless there is also covered parking provided for two cars.

Gee, that sounds a lot like my garage. That I’m trying to convert.