Tuesday, July 31, 2012

State Fair – Why Do I Love it Again?

I think we established how much I love the State Fair last year.  There’s really no explaining it other than my love of baby animals, ice cream, high-priced deep-fried food, bungee jumping (clarification: watching bungee jumping), magical mops, gigantic trucks, milking goats, outdoor stage shows, crowds, electronic foot massagers, blue ribbons and Ginsu Knives. 

Well, I love a few of those things anyway.

Re-enactment of Robert's Sister at the Fair

And there’s absolutely no explanation for why I decide to go to the Fair when it’s at least 100 degrees outside. 

I really love the State Fair; I just don’t know why.

This year, Hubby and I took Robert to the Fair one Saturday evening.  It was after a week of running around for Hubby and his back was killing him but he was sweet enough to go with us.  I promised to push Robert in the wheelchair and not stay too long. 

Robert was excited (as excited as he lets on, anyway) and after packing a ‘just in case of an emergency” bag and loading the wheelchair in the car, we were off. 

Once we got to the Fair and parked, Robert sat in the wheelchair and we made our way to the admission line. 

Oh wait.  It’s the “we have to search your bag and run you through a metal detector line.”

They search my purse and Robert’s emergency bag (looking past gloves, protective briefs, a change of clothes, a bottle of 7-Up, medication and several napkins). 

I warn them about the fingernail clippers Robert keeps in the left pocket of his shorts.  They waive us on through without wanding us. 

The ticket booth had a large sign which stated “admission: $5.”  Wow.  That’s cheap this year.  I thought maybe because we were coming late in the day, the price was reduced.

“That’ll be $12.”  I’m confused.  I thought it was $5 per person?  There are three of us.  (I was trying to be helpful).

“That’ll be $24.”  Um.  Still confused.  Feeling less helpful.

“You get in free for being the attendant to the disabled person.  It’s $12 each for the other two.” 

My brain was simultaneously processing “happy” for one of us getting in free and “confused” because the sign said admission was $5 but I ended up just giving her the $24.  No sense holding up the line any longer. 

Plus, I’m not even in the gate and I’m dripping (see re-enactment above).

We decide to walk by the carnival rides and games and then make our way back toward the food.  We told Robert we’d eat dinner at the fair and he was looking forward to a cheeseburger. 

The fairgrounds are not level so I was getting a workout pushing the wheelchair (and avoiding the cables running from rides to some source of electricity).  I had promised Hubby I would push Robert because his back was sore enough and I wasn’t going back on my word.

Somewhere around hill #153, Hubby takes the reins of the wheelchair to give me a break.

“It would be easier if the brakes weren’t on.”


We make our way to a food area since we’re starting to get hungry (I inadvertently really worked up an appetite).

It is absolutely packed so no tables have any space open.  I leave Robert and Hubby on a bench with instructions to scout out a table and I go off to get Robert a cheeseburger, fries and much needed water.

Robert is starting to sweat as much as I am (overactive sweat genes must run in our family).

I weave my way through the crowd and place my order, trying to avoid eye contact or people staring at my drenched appearance.  I don’t usually look like this, people! Haven’t you ever been hot??

(See re-enactment for a reminder).

By the time I return, I’ve lost Hubby and Robert but find a table and sit down.   No wonder it’s empty – we are the only table not in the shade.   That’s okay; it’s a table and I’m not moving.  Hubby and Robert quickly find me (just follow the scent of sweat and cheeseburger, boys).

Hubby immediately offers to go get our food while I sit fanning myself and Robert.  I’m pretty sure he’s embarrassed to be seen with me.  Eventually, we realize we have a great view of the bungee jumpers so spend time eating and watching the daredevils ride the basket up, jump out and then bob up and down on what looks to me to be a very flimsy rope.

Robert was quite delighted with the entertainment. 

Once his cheeseburger was gone and we had finished our veggies and rice, Robert asked about his Rocky Road ice cream.  Sheesh, some habits die hard.

I promised him some ice cream once we got home.

We roamed around a bit more although this time we found activities to amuse us inside an air conditioned building.  We watched children create enormous bubbles, tried to guess the smell inside of a bottle and watched people play with almost life-size chess pieces.

We eventually maneuvered our way out of the Fair and back to the air-conditioned car and off to home where Robert could finish the night with his Rocky Road ice cream.

I do love the fair – I still don’t know why but I really do love it!

Friday, July 27, 2012

73 Days

“Seventy-three days per calendar year for developmentally disabled recipients” are what Robert gets when he lives in an Intermediate Care Facility for the Disabled (aka, New Home) in California. Robert’s home is reimbursed through the state Medicaid program (Medi-Cal) and they will lose funding for the days he is not at the home if he exceeds 73 overnight visits. 

This was unknown to me until after day 51 and New Home called to tell me we were on track to exceed the limit this year.  What?  There’s a limit? I was incensed but not surprised there would be such a rule.

Counting last weekend, we’re at 53 and it’s not yet August.  With holidays and doctor appointments (when I sometimes keep him overnight), we’re on track to be about 50 days short.

I was so disappointed when I learned of this and immediately worried about Robert’s reaction. Robert loves coming over!  I understand New Home has to get paid and understand there are very specific rules about Medi-Cal funding.  I'm still disappointed.

I don’t remember reading anything about a limit on the amount of overnight visits so double-checked the original “move-in” documents.  There’s a passing reference to overnight visits and checking how many days a client is allowed to have but nothing about a limit of 73 overnights (it is in the Medi-Cal regulations, however).

Again, this is another example of New Home not being used to family involvement.  They deserve credit for at least telling me about this rule before we hit 73 days in October (right before more doctor appointments and the holidays).

Yes, take note.  That’s me giving New Home credit for something.

This is disappointing but it isn’t something I can fix with conversations with varying levels of supervisors at New Home. Because I love to dissect rules to figure out where they originated, I have tried to figure out how the magic number 73 was decided.  The best I can guess is the people writing the regulations allowed one overnight per weekend, plus several days for holidays and a vacation and maybe a birthday. 

This year, Robert has spent Saturday and Sunday nights with my family and either my husband or I have dropped him off at Day Program Monday morning.  I love visiting with the Day Program staff on Monday mornings and getting updates on how Robert is doing. 

My husband, Robert and I have a great routine on Monday mornings (hubby makes coffee, breakfast and his lunch while I get Robert washed up and ready for the day) and although it’s taken months, we’ve been able to speed Robert up to a reasonable pace for a workday.

When dropping him off at Program, I remind Robert I will pick him up the following Saturday.  He still calls every Friday to ask if I’m going to pick him up the next day.  I don’t know if he’s actually forgotten or if he’s just worried about my memory and thinks I might forget him. 

Robert clearly enjoys coming over to our house even if nothing is planned although there’s usually some mix of a barbeque, a haircut, movie, card games, word search puzzles or just relaxing watching his favorite television shows. 

There’s always family around to talk to, dogs and cats to be amused by and Rocky Road ice cream to eat. 

The benefits of having Robert over for two nights (three, if it’s a holiday weekend) have been enormous.  Robert loves his weekends here (although I’m not above thinking he’s here just for the ice cream).

I will check to see if there’s a way to pay the per diem rate for any days we go over the allotted amount (it pays to re-read the original move-in documents) but, I suspect, we will be limited to the 73 day rule. 

I haven’t told Robert yet because I’d rather talk to him about it in person and want him to see it won’t be that much different.  We can still pick him up on Saturday and keep him through dinner on Sunday.  He can get ready for bed here and then be driven back to New Home in time for bedtime. 

We’re losing the weekly connection I have with Day Program on Monday mornings but they are so good about communicating that I’m not worried about my relationship with them.

We’re going to make the most of this 73 day limit as there’s still a lot that can be done in 73 days. 

We’re still getting six haircuts and mustache trims a year (well, Robert is; I don’t have a mustache in case you were wondering);

That still allows catching up on 260 episodes of Jeopardy (Robert doesn’t mind repeats);

That’s 73 chocolate shakes and cheeseburgers;

Three word search puzzle books;

At least 30 black, clicky pens;

Close to 292 times of petting Sassy, our Toy Pomeranian, and telling me how cute she is;

Most importantly, it’s 146 scoops of Rocky Road ice cream.

I think we can make this work.

Sunday, July 22, 2012

Thoughts on Aurora

I don’t know that I can contribute much on the tragedy that happened in Aurora, Colorado.  I just know I can’t stop thinking about it. 

One man, clearly not in his right mind, changed the lives of the people in that theater (and beyond) forever.  Even if someone was lucky enough not to be injured, the sounds, the fear, the horror of that night is imprinted on their soul.

How many of us have excitedly gone to a midnight showing of a movie we have longed to see?  Planning with our loved ones and our friends to see whatever movie has captured our attention at the moment. Standing in line with others just as excited (when reasonable people should be in bed), buying over-priced, artery-clogging popcorn (have you ever put that butter in a cup by itself – gross!) and picking just the right seat (or taking what we can get if we’re a little late).

Not to intentionally date myself but I have thoroughly enjoyed my share of midnight showings of The Rocky Horror Picture Show (um, yeah, I was a toddler).  

How many have let their teenagers go to the theater in the middle of the night because they and a group of their friends wanted to see the latest Harry Potter or Twilight movie? 

It’s such a normal thing to do.  

It’s innocent.

It should be safe.

It rattles our foundation when something as routine as seeing a movie is suddenly a risk. 

I’m pretty risk adverse.  I don’t jump out of airplanes.  I don’t go mountain climbing.  I buckle my seat belt whenever I am in a car and I drive the speed limit (well, most of the time). 

The riskiest thing I do is eat popcorn at the movies.

There’s not much I can think to do to make the people affected by this senseless tragedy feel better but I want to do something. 

All I can suggest we each do something nice for someone – a stranger, family member, loved one, co-worker – anyone.  Maybe our small acts of kindness can snowball so they will help counteract the violence and tragedy in the world.

It won’t help the people of Aurora directly but I hope these acts of kindness reach them at least indirectly and they know how much the world is keeping them in their thoughts. 

One man who had lost his humanity should not keep us from ours.

I realize this is naïve but couldn’t the world use a little bit more innocence? 

Wednesday, July 18, 2012

Neurology Appointment: The Good, The Bad, The Ugly

The Good:  For years, Robert was treated for his epilepsy at UCSF which has a prestigious epilepsy center.  Robert tried out the Vegus Nerve Stimulator, participated in a study for the Deep Brain Stimulator study as well as underwent two brain surgeries by world-renowned surgeons.  He really has received the best care by the brightest researchers in the field of epilepsy. 

Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic (formerly known as Grand Mal) to Complex Partial.  The doctors at UCSF developed a regimen of medication for him which allows him to still enjoy daily activities and to have some independence.  Robert had improved seizure control with the Deep Brain Stimulator until he developed a life-threatening infection which meant he had to have the hardware removed from his brain and chest and withdraw from the study.  

When I took over his care, I grappled with the decision of keeping him at UCSF (which is a couple of hours from where we live) or switch him to the local UC epilepsy center which also has a stellar reputation.   I chose to switch him to the local UC Neurology clinic and hit the jackpot.  It turns out Robert’s new neurologist did her fellowship at UCSF and remembered Robert! 

This was such a special find because here was someone who knew Robert before his steep decline of the past few years.  She would understand how much his mobility and cognition had changed.  Any hesitation I had about switching Robert from UCSF was gone once I found out she used to be involved in his care.  I had high hopes he would get great, personal care. 

She did not disappoint.

At his most recent neurology appointment, the neurologist did the usual battery of tests, listened to my concerns about the increased weakness on his right side and the dragging of his right foot when he walks. She confirmed he showed increased weakness on the right side and attributed it to his recent bout of pneumonia and sepsis.   It’s fantastic to be validated and not have the doctor think I’m a crazy, over-protective sister.

Oh, wait – I suppose she could still think that. . .

Robert was put through a battery of tests:   Remember three words: Apple, Table, Penny (Robert remembered only Table); Write numbers in this circle so it creates a clock (Robert got up to the number 20 before stopping and staring at the page for a long time, something telling him something wasn’t quite right);  What city/state/country is it? (he answered “California” for most of these questions).  

He was asked to write a sentence and painstakingly wrote out, “God loves you.” 

He wrote that same sentence for his memory specialist too and it’s always fun to see the look on their faces when they read his sentence.  They don’t really know what to make of it but always say, “Thank you.”

The Bad.  Robert’s neurologist is leaving the clinic!  Ugh!  I’m sure she has a wonderful opportunity ahead of her because she is extraordinarily smart and really knows her stuff.  I certainly wish her the best but the selfishness in me wishes Robert could follow her wherever she’s going.  She was so sweet with her goodbye and said Robert really has a special place in her heart and told me about the other epilepsy specialist Robert could start seeing.  I have to consider what’s best for Robert and ask Robert what he’d like to do (maybe going back to UCSF is an option) but this was a real disappointment.  We are going to be sorry to see her go but I am excited for whatever she is going to do.

The Ugly.  Of course, this involves New Home.  I have always told New Home that I will take Robert to his neurology appointments, there is no need for anyone else to attend and I will update them on what happens.  For whatever reason, they decided this time the House Manager should go.  They weren’t even going to tell me – the only reason I found out is that I had been asking for Robert’s seizure log for a week and hadn’t yet received it.  I was told I would get it when House Manager came to the appointment. This wasn’t House Manager’s call (I actually think she does a terrific job) but came from “higher up.”  I spent an hour first talking to the House Manager, then her supervisor (who only could tell me they “prefer” to do it this way without really knowing why) and finally talking with her supervisor.  Thankfully, this person was reasonable (although she was standing her ground for most of the conversation).  I eventually convinced her we had been operating this way since Robert moved in!  She relented on the directive and I was able to go to the appointment without a babysitter (although sans seizure log). 

I also found out that the neurologist had written an order for non-generic drugs for Robert and sent it to New Home’s pharmacy back in April.  For some reason, New Home hasn’t been getting these scripts!  So frustrating!

More Good.  IOkay,  can’t leave on a sour note, so I will happily share that I was able to leave my Robert’s Sister flyers at the neurology clinic so others can easily have access to epilepsy facts and resources as well as Robert’s story. 

Bonus Good.  As far as what plan the neurologist has for Robert, she talked about new drugs coming on the market but agreed with me she’d like to try the non-generic medications he is already taking first.  She also said when the Deep Brain Stimulator is approved by the FDA, we should consider that for Robert again since it seemed to help him.  The previous infection as a result of the device was a fluke and may have had more to do with Robert’s living conditions than anything (this was right before I took over his care).

I am very pleased with the appointment and can forget about the trouble with New Home. Most importantly, I am hopeful for these treatment options.

Hope outweighs the bad and ugly any day!  

Sunday, July 15, 2012

Off to Grandma’s We Go!

My Grandmother has always looked the same to me.  A very petite, Polish woman with permed hair of varying shades of red or brunette, cigarette dangling from her mouth and a scowl on her face.

Even when she’s smiling.
Robert and Grandma - both are beaming!

The only time I saw her age was throughout Mom’s cancer.  Grandma didn’t leave Mom’s side from diagnosis to her death two and half months later.  She crocheted, cooked delicious soups and salmon cakes (and whatever else Mom asked for) and she prayed, clutching her rosary beads 24/7.

I think she had given up smoking by that time but, boy, did the strain of losing a daughter show on her face, her 95 pound frame, her spirit.

After Mom died, I kept in touch with Grandma by occasionally calling but knew Robert was the one who held a special place in her heart.  Robert was living independently at this time and was only a few blocks from her house so I was content knowing Robert called her several times a week and regularly visited her. 

Whenever I called Grandma, she’d briefly update me on the extended family drama and her physical ailments and surgeries (I can’t even count how many surgeries she’s had but I would guess it’s several dozen).  Then, after only a few minutes, she’d tell me it was good talking to me and say goodbye.

She did tell me she loved me and always took my call so as far as brush-offs go, it was pretty tame. I got used to it but my calls became less frequent over the years.  After all, a brush- off is a brush-off no matter how nice it’s done.

Since taking over Robert’s care, I’ve made sure he had Grandma’s number so he could call her when he wanted and when I realized he wasn’t doing that, I would call her and hand the phone to Robert to get his Grandma fix.  They loved talking to one another so I at least felt like my granddaughter duties were fulfilled by helping them maintain a relationship.

I hate to admit it but it’s been years since I’ve seen her.  She’s now pushing 90 and I’ve had a nagging voice in my head telling me to see her and to take Robert with me.  Since I probably shouldn’t put it off any longer (I told you she’s almost 90, right?) I decided on a whim to make the three hour round trip to see her. 

Before leaving the house, I called first (of course) and she was happy to hear from me and enthusiastically encouraged me to come down.  She mentioned a barbeque she was attending that evening but I assured her Robert and I wouldn’t stay long and wouldn’t interfere with her plans.

Robert lit up when I suggested we visit Grandma.  He was completely game and didn’t even fall asleep on the way.  We stopped for flowers and he busied himself with his puzzle book and counting “diesel” trucks on the freeway. 

Once we pulled into Grandma’s mobile home park, I called her because I got turned around and couldn’t figure out the house numbering system (yes, I’m directionally impaired).  I knew we still had hours before she her barbeque.

She answered the phone and told me she had some place to be and that I shouldn’t come down after all.

Um, Grandma – I just drove an hour and a half and we’re probably fifteen seconds from your house.  We’re coming over.

I found her house, unloaded Robert, the walker, the flowers and Sassy (our Toy Pomeranian who used to be Mom’s and who I thought would bring Grandma a bit of joy) and walked Robert to her front yard. 

Grandma was outside waiting for us. 

Since Robert couldn’t walk up the stairs to her porch (even though he insisted he could), Grandma gingerly walked down to greet us.  She gave Robert a big hug, gave Sassy a pat on the head and told me I was the spitting image of my mom. 

She looked exactly as I remembered her.

She told Robert this was probably the last time she’d see him and Robert said he thanked God she was still alive.  (No wonder they’re close -- they’re both morbid).

She then told us she had to go to a neighbor’s house for a barbeque. 

We were literally there for less than five minutes.

“Love you. It was good seeing you, thanks for coming down.  Next time, you can stay longer. “

The brush-off. 

I won’t lie and say my feelings weren’t hurt or that I learned a great, powerful, positive life lesson.  My feelings were hurt and I wasn’t in the mood to learn some positive lesson.  I told Other Brother what happened but he wasn’t surprised, “That’s Grandma.” 

So true.   That is just how Grandma is. 

When I later looked at the picture I took of Robert and Grandma I realized the trip wasn’t for me but for him.  I was so flabbergasted during my (less than) five minute visit, I hadn’t really noticed how happy he was.  Looking at the picture, I realized that our visit was worth the afternoon drive. 

My feelings are still hurt (and, no, there’s no lesson!) but at least we saw her and those (less than) five minutes made Robert’s day.

Thankfully, I can finally quiet that nagging voice in my head – time to give it the brush-off!

Friday, July 13, 2012

The Importance of a Hospital Visit

Visiting a loved one or friend in the hospital can serve a few purposes. For the caregiver, it can be a way to advocate. It can also be a social visit which can lift the spirits of the patient or the caregiver staying with the patient.

My time in the hospital with Robert wasn’t so much of a visit with him as it was me being there to advocate on his behalf. (Since Robert was sick, he was sleeping most of the time and probably didn’t even realize I was there). 

For me, it was important to be there at every shift change so I knew the doctors and nurses taking care of Robert. I made sure they understood the importance of not changing the time of his seizure medication schedule because of the increased risk of seizures and made sure there weren’t any surprises such as taking him off of his seizure medication (which the ER doctors wanted to do before I insisted they speak to his neurologist first). 

If I couldn’t be there because I had to run into work for a bit, my husband took over for me.

Aside from confirming the medication schedule with each shift until the nurses and I knew each other, I also kept track of the vitals whenever they were taken which no one seemed to mind. In fact, on Day 3 of Robert’s stay, the doctors were talking about releasing him since he hadn’t been running a fever. They were very happy Robert was doing so well but my notes said he was running a fever the previous evening.  I hated to burst their bubble but, after reviewing my notes, they agreed to keep him longer. (The nurse had an extremely busy shift the night before and had neglected to note a fever in Robert’s chart).

I also had to be there because Robert is a terrible self-reporter. He says he’s doing “fine” or “excellent” even if he is unable to sit up unassisted (which isn’t normal) or is running a fever or has just fallen from a seizure.

He’s either extremely optimistic or a master at denial.  (Maybe a little of both.)

He is also cognitively slow with a memory impairment so it is unrealistic to think he can fend for himself when doctors are asking questions or giving him information. As his caregiver, I can also recognize what is “normal” for him and what isn’t and convey that information to the staff. Relying on Robert to give the doctors and nurses information about his condition is irresponsible and would be detrimental to his health.

Many caregivers are in the same situation when their caree is hospitalized because their loved one is too sick to be able to fend for themselves. However, it’s not always possible to be at the hospital all day long (people work, have children to tend to, have other caregiving responsibilities or their own health concerns).

One solution may be to ask a family member or friends to visit at a time when you can’t be there.  The suggestion may even be welcomed – people do love to help but often don’t know how! It can be difficult to ask for help but it can cut down on miscommunication if someone is with the patient when vitals are taken or when the doctors do their rounds.

Another way to help is to think of the visit to the hospital as a visit to the caregiver. Most likely, they are stressed out, in need of a sounding board or some company. I am extremely grateful to my husband and daughter who spent many hours with me in the emergency room and at the hospital with Robert. We got to know the best foods to get from the cafeteria if we were in a rush and were able to sample just about every dessert they had available (you don’t think I’d let a hospital stay keep me from chocolate, do you?).

If I had any doubt about whether or not spending so much time at the hospital was a good idea, his doctor told me on the day of discharge how much he appreciated my involvement and my advocacy for Robert (this is the same doctor who I had disagreed with earlier in the week when he was throwing out theories about Robert’s cognitive decline).    

Hopefully, Robert will stay out of the hospital for a while but if he does have to go in again, you can find me either in his room talking to doctors and nurses, taking notes or sneaking off to grab a surprisingly delicious brownie.

Since there isn't a "one size fits all" formula for hospital visits, I'd like to know what your view is of hospital visits.  If you’ve been in the hospital, do you want people there all the time or do you prefer some peace and quiet? If you’re a caregiver, do you want someone to give you a break or to take shifts in talking to the doctors?

Or do you just visit for the brownies?

Tuesday, July 10, 2012

My Favorite Resources for Caregivers

I love lists!  Favorite Movie Lists, Lists of Resources, Best Book Lists, End-of-Year lists – even To-Do Lists!

In a previous post, we beefed up tools for the caregiver’s tool belt and included a list of support resources for the caregiver, including many that are disease/disorder specific.

This time, in honor of my love of lists, I’ve narrowed down the list to six caregiver resources I absolutely love and find extraordinarily helpful. No one has paid me to include them in this list but I feel as if I owe them all a debt of gratitude for the help they give me and other caregivers. I hope you find them as helpful and supportive as I have.

1.  Caregiving.com. Founded in 1996, Denise M. Brown has created a supportive online environment for caregivers rich with resources for people caring for others.  Whether the caregiver cares for their spouse, parents, children, sibling, grandparent or friend (or a combination of these – yes, many people have more than one caregiving responsibility), there is something for everyone.

Denise regularly interviews a “happiness” expert, financial planner, a Dementia Care expert as well as many caregivers covering a wide range of topics.  My own interviews with Denise air the second Saturday of each month at 7:00 a.m. (Pacific) and focus on the working caregiver (although when Robert was hospitalized, we talked from the hospital about how to prepare for the inevitable trip to the emergency room).

Caregivers regularly blog about their experiences and routinely rally to help each other when called upon. It’s a privilege to be involved in this site and to help Denise reach family caregivers as her insight has helped move many of us through a difficult situation or two. Denise can be followed on Twitter at @Caregiving and also on Facebook.

2.  Caregiver’s Survival Network. This site is currently under construction but it has resources and stories accessible to tide you over until it is fully rolled out.  The mission of the Caregiver’s Survival Network is “designed to be a free social network, dedicated solely to the welfare of caregivers.”  Adrienne Gruberg founded The Caregiver’s Survival Network in November 2011 after she cared for her husband for six years until his death in 2011.  She tells her story much better than I could so please read how this dynamic woman went from helping her husband as his primary caregiver to helping others in a similar situation. This organization can also be followed on Twitter at @caregiverSN and on Facebook.

3.  Family Caregiver Alliance. This site is after my own heart with its lists and fact sheets as well as a new feature which answers questions about resources in each state (cleverly designed with a convenient map and list of topics to click on for answers). This site has so much information you’ll be able to find something new with each visit. They can be followed on Twitter at @CaregiverAlly and Facebook.

4.  Caregiving Café. This site made it into my favorites not only because they share my passion for advocacy but also, apparently, my love of coffee!  Lynn Greenblatt created this site because of her caregiving experiences with both her dad and her husband. I am amazed at the entrepreneurial spirit and desire to help others that embodies caregivers! Lynn has created a helpful site and is extremely responsive (she helped me with a list of organizations who might be interested in taking a battery-powered wheelchair with a bum battery).  Lynn can be followed on Twitter at @CaregivingCafe and Facebook.

5.  Kat’s Café. A terrific source of information for special needs families and another coffee lover (I’m shocked a chocolate lover hasn’t made my list yet!).  Katrina Moody has three special needs children and a husband with health challenges of his own.  She makes time to help others and I’ve been lucky enough to stumble across her wonderful website. She can be followed on Twitter at @KatrinaMoody and on Facebook 

6.  EmblemHealth. This may be a surprise addition to my caregiving resource list.  After all, many caregivers find themselves in the position of having to fight insurance companies for coverage. While that is true and remains a huge source of stress for caregivers, EmblemHealth recognizes the stress caregivers experience and knows this may lead to health problems. Helping caregivers is actually in the best interest of the healthcare industry and EmblemHealth realizes this and started their Care for the Family Caregiver initiative ten years ago.

They are soon launching a new microsite with various caregiving stories and I will post more information about this once it is officially launched. As much as I’d like to think all insurance companies are completely evil when I’m butting heads about coverage, my rational side also knows caregivers and insurance companies need to work together to help solve the health crisis in the United States.  I believe in the mission of EmblemHealth and appreciate what they are doing for caregivers. They can be followed on Facebook as well.

Have you used any of these resources or do you have a few favorites of your own?  Please share your own list in the comment section – because besides my love of making lists I do love reading lists!

Friday, July 6, 2012

Struggling with Social Security? You’re Not Alone – So Are the Employees

Let me start out by saying I am not a criminal. Well, except, there was that one time I got a speeding ticket (for those who have driven with me, I know how hard that is for you to believe).

Then there were those teen years when I TP’d a few houses of friends.  That’s not a crime, right?  If it is, certainly the statute of limitations has run out (she asks hopefully).

Oh, well, um, there was that time I distributed anti-military spending flyers at the Open House of an Air Force Base and was quickly escorted into a room full of very serious military police to “talk.” 

That scared the crap out of me but I was not arrested – just told to leave and not return.  No problem!  Thank you for your time!  Sorry to bother you! 

Phew.  (Thank goodness I didn’t TP the military base.)

Nope, I have not been arrested.  I may be a heart-on-my-sleeve liberal but I am definitely not a criminal. (We won't discuss my college years where I went a little off the rails; still, no arrests).

For this (overall) rule-abiding citizen, the Social Security Administration agency recently sure had a way to make me feel like I was trying to pull some sort of fast one.  

After caring for Robert for a couple of years, I applied to become his Representative Payee.  Since the Social Security Administration doesn’t recognize a Durable Power of Attorney, it was the best way for me to avoid sitting for hours in a waiting room with Robert to change an address.  (It didn’t matter if he was asleep as I did this as long as the agent could verify he was there).

As Robert’s Representative Payee, I can call the local office on Robert’s behalf and they will actually talk to me (and Robert can sleep at home)!  I can also go online to take care of many tasks on his behalf.

Such as completing my first Representative Payee report.  It’s a very simple form with just a few questions and is available online so it really couldn’t be any easier.  The expenses are lumped into three main categories and the Representative Payee calculates what they’ve spent within each category over a period of one year.  This was easy to calculate since I keep all receipts for anything spent by Robert or on behalf of Robert and have a detailed Excel spreadsheet with all of his expenses for each month.

I did have a question, however, about the money I’ve saved for him.  Robert has a Special Needs Trust and some of his money is saved in that trust for his future medical needs.  The Social Security Administration website didn’t answer my questions so I needed to talk to an actual person.

After calling the toll free number, listening to several automated options, choosing the wrong one and being unable to undo what I just chose, calling back, choosing the right option, holding for at least twenty minutes, I was finally talking to a real live person! 

Please, please, please do not let us get disconnected, I pleaded in my head.

After verifying I was who I said I was and verifying Robert’s information, I was able to ask my question. How do I indicate on the form that Robert has a Special Needs Trust and a checking account and that some of his money has been saved in these accounts? 

“What do you mean, you’ve “saved” money in his accounts?”

My brother has money left over at the end of the month and I save it for him.

“Ma’am.  His money should be spent for his benefit. You should not have any money left over to save.”

Okay.  Well, I do. He’s well dressed, he is never without briefs or 7-up or reading glasses and I have some money left over.  I’m sorry?

There’s a spot for “savings” on the form so this can’t be that unusual.  My question is about differentiating the Special Needs Trust account and Robert’s checking account.  How do I account for that on the form?

“Ma’am.  I know for a fact you shouldn’t have any money left over.”

Okay.  Look.  I have called the Social Security office several times over the last 18 months and emailed the original rep that set me up as the Representative Payee to confirm Robert was getting the correct amount of money.  I actually thought he was getting more than he should but each time I called, the representatives looked up the account, verified all the information and told me he was getting the correct amount.  I've talked to New Home and they said I have to call Social Security.  I've called Medi-Cal and they confirmed they had Robert's correct address and his correct living situation. 

So I have money left over that I save for his future medical needs or housing or medication that Medi-Cal won’t pay for. 

“Ma’am.  You need to go into your local office with your question. You should not have any money to save.  Do you know where that is, ma’am?”

Yes. I spent many hours there before becoming the Representative Payee which I thought was going to save me time by being able to resolve issues over the phone!

This woman’s attitude was rude and accusatory from the start of our conversation.  She had me so discombobulated, I didn’t even realize until after we hung up that she hadn’t even bothered to look at Robert’s account to verify he was getting the correct amount. 

I was dreading going into the local office so tried my original rep again.  The phone number she gave me had been disconnected.  Great.

After finding the new number and trying my luck with whoever answered the phone (after being on hold for quite some time, of course), I was able to speak to a local representative who answered my question about the two accounts and how to account for them on the form. 

I asked him to confirm the amount Robert is to receive each month since I was concerned I was either going to jail or having to repay thousands of dollars. He said the type of home Robert lives in had been verified by one of their agents and he assured me Robert was getting the correct amount of money each month between Social Security and SSI.

He was even nice about it!

My first Representative Payee form has now been completed online and my stomach has released most of the knots it was in worrying that I was doing something wrong.

The conflicting information given by different representatives is astounding to me and still leaves me with nagging doubts about who is correct.  Given the few experiences I’ve had with Social Security, it is really no wonder the agency has such a terrible reputation. 

How are the disabled or the elderly and their caregivers supposed to be able to navigate the system when the employees can’t even do so!  The system is unnecessarily complicated and needs to be simplified.  At a minimum, representatives need to be uniformly trained so the users can be given the same (correct) answer when talking to any representative.

Now can someone please help me down from this soapbox before the MPs show up?

Wednesday, July 4, 2012

Flexibility on the 4th

Our Fourth of July was a little different than usual but still fun.  As I always tell my kids: “go with the flow” (or “look for the silver lining,” or “turn lemons into lemonade”).
Happy 4th from Robert!

Yeah, I’m as sick of my sappy platitudes as my kids are.
But they work!

For years on Independence Day, Hubby and I have packed up the kids, invited extended family and friends to view fireworks from the parking lot of a Futon Shop.  (A few even took us up on our odd adventure.)

Yep, a Futon Shop (if only they’d been open at 7:00 p.m. on July 4, I probably would have bought several pieces of furniture over the years! 

It was a great spot to see a fireworks display without actually buying a ticket or fighting crowds out of the State Fair grounds.  We had this idea with about ten thousand other people who spread out in various parking lots near our Futon Shop. So much for my “no crowds” goal.

It really was fun through the years though.  When the kids were little, they lit sparklers and hubby (aka, “pyromaniac”) set off a few twirling, spinning things.  We would pack snacks and drinks and then usually walk to get pizza and, sometimes, even ice cream. Some years we would be freezing to death but most years we were sweating buckets as late as 10:00 p.m.  One year, a sparkler set off a small fire on a sleeping bag. 

Good times.

This year, Hubby’s mom is having a heart procedure at a cardiac center a couple of hours away.  Since Mom-in-law needs to be at the hospital at 6:00 a.m., Hubby and Mom-in-law are out of town on the Fourth.

The kids are grown and scattered (as they should be).

I picked up Robert this morning so he could spend the holiday with family and, brought along his Fourth of July hat he got at his Day Program holiday celebration.  By evening, it was me and him, three dogs and a giant party hat. 

Driving to the Futon Shop didn’t seem like such a good idea since the traffic is horrific and there would be no easy place to take Robert to the restroom if needed.  Driving to another fireworks show nearer our house was option number two. 

Robert ate dinner and went through his usual routine to get ready for bed.  Once he was ready and finished watching Jeopardy, I asked him if he wanted to see some fireworks.

He did!

I got Robert into the car, put his walker into the trunk, scooped up the two little dogs (and blasted all the televisions in the house for the larger dog) and drove to an area close enough to the fireworks display to have a good view but far enough away to be able to make a quick exit if Robert needed a bathroom break or the dogs became too anxious.

No need for the early exit.  The dogs loved being in the car (and snuggling with me) and Robert busied himself with counting the different fireworks in the show (he somehow got to 200+).

I called Hubby to say goodnight, texted Other Brother to see how his holiday was and enjoyed a video he shared of his own fireworks display.  I even watched the fireworks.

It was no Futon Shop but it was pretty good. 

After all, you have to go with the flow and things will turn out just fine.

Hope everyone had  a happy Fourth!

Sunday, July 1, 2012

“Inside E Street” – Focus on the Working Caregiver

As I briefly wrote not too long ago, Robert and I were interviewed for the AARP produced for PBS show, “Inside E Street.”  

It came about so unexpectedly I barely had time to think about it much less write about it.  I received an email from a producer on a Tuesday evening asking if Robert and I would be interested in participating.  After getting over my initial skepticism that this was a spam email or someone selling something, I couldn’t believe my good fortune and was stunned I was being asked to talk about the working caregiver.  I took a deep breath, composed a reply email (proofing it several dozen times) and calmly responded we would be very interested. 

Inside I was jumping up and down doing my happiest happy dance!

Once all the dancing was over and I shared my good news with my hubby and daughter (who were doing their own happy dances), I mentally prepared a quick checklist of things to do before the television interview:
  • Talk to Robert to be sure he wanted to do this (given his life purpose is to spread awareness about epilepsy I was confident of his answer);
  • Research the best colors to wear on television;
  • Review my list of facts and figures on epilepsy and working caregivers;
  • Lose ten pounds (hey, if the camera adds 10 pounds, I need to lose 10 pounds to counteract that effect!);
The producer responded to my reply the following day (Wednesday).  He was happy we could participate and would like to film footage at my office, film Robert at his Day Program and do the interview at our house (thankfully we just had the house cleaned so I don’t have to add that to the list!).

Excellent!  Just let me know when you’d like to film and I can make the arrangements.


Ack! Tomorrow!?  As in, the day after today?  (Crap – so much for losing those 10 pounds!).

Doing the interview so quickly actually was a good thing because I realized I would have turned into a bundle of nerves if I had to wait weeks to be interviewed.  (I was nervous enough with a day’s notice!).

I talked to Robert and asked him if it was okay he was interviewed the next day.  He gave me his usual, “that sounds good” response but laughed when I told him he would be a star and he would have to give people his autograph.  He was on board!

Day Program and my office were equally agreeable to my unexpected request. (Thank you!)

Since I’ve never done anything like this before, I didn’t know what to expect.  The experience was actually quite fun and the producer, the sound and camera guys were absolutely terrific to work with.  They eased my nerves and were so friendly and kind to Robert. 

The segment was focused on the working caregiver as well as the limited definition of family under FMLAI was more than happy to discuss this topic since it is so important to me and closely affects my care of Robert. 

The end result was broadcast on our local channel KVIE2.  Our cable company actually doesn’t carry it so I didn’t get to watch it on television but our segment is on the "Inside E Street" website and can be viewed here. 

(The day after this was filmed Robert was hospitalized with pneumonia and sepsis which definitely put my working caregiver hat to the test!).

I have to express many thanks to the Inside E Street show for focusing on this important topic and to the producer and his crew for making this such a positive experience for Robert and I (and for their excellent editing skills!).

Once this was available to view on the website, I showed Robert the video and he declared it "excellent." 

Now, I just need his autograph . . .