With Just One Click . . .

It is unbelievable to me how much stress one inflexible bureaucrat can create. 

My head pounds.

My stomach turns.

My mind races.

My breath has been taken away by a young woman at the Social Security office who has somehow decided Robert no longer qualifies for SSI or Medi-Cal.

She even insinuated I was lying to her.

I stared at her in disbelief.

I am not sure how this happened. All I know is it felt like I had been hit by a mac truck when walking out of the Social Security office. 

I really don’t know where to begin or how to cut this short. 

Bear with me.

When I took over Robert’s care at the end of 2008, he was getting Social Security and SSI benefits as well as Medi-Cal (the California equivalent of Medicaid).

My very first blog post was about the difficulties in changing Robert’s address from one county to another. (Be warned - it is long. This was written before I realized a blog post shouldn’t be as long as a mini-book.)

Things have not changed (with Social Security or my lengthy blog posts).

When Robert first moved to Sacramento, he was in a Skilled Nursing Facility while he recovered from an infection.  Once he was better, he moved into a Residential Care Facility for the Elderly (an Assisted Living Facility) under a waiver program.  He then moved into New (now old) Home.

With each move, I notified all the involved agencies: Social Security, SSI and Medi-Cal. 

Robert’s Social Security and SSI benefits were always adjusted depending on what type of facility he lived in.  His Medi-Cal benefits automatically renewed because he was on SSI.

I became his Representative Payee through Social Security so I could make changes on his behalf and not have to drag the poor guy into the Social Security offices.  I thought this would be an efficient way of dealing with Social Security while avoiding long waits.

After Robert moved into New (now old) Home, his Social Security payments seemed to be too much. Medi-Cal was covering the cost of the Home but still they sent what seemed to me, more money than he needed.

I made sure Robert had everything he needed and wanted but there was money left over each month. I called (several times) to verify the amount Robert should be getting.  Each time, I was told it was the correct amount.

When completing the first year report as the Representative Payee, I called to ask how to account for the savings.  I talked to one person who acted like I was a criminal for saving money. I then talked to the local office who again reassured me the amount was correct and guided me on how to complete the form.  

Call me cynical but it didn’t seem odd to me that the government would pay an amount more than was needed yet discourage people from saving it. However, I didn’t think I should spend the money unnecessarily.  After all, we were considering moving Robert in with us and if there was extra money we could use that for home modifications to accommodate Robert.

In the back of my mind, I also thought that if they were actually overpaying Robert I certainly didn’t want all that money spent. I assumed if there was an error they would eventually want the money back.

I sent in the form and didn’t hear anything about it.

Recently, I completed my second report.  On the form, there is a question about whether or not the consumer had moved within that time period.

Yes! Finally, Robert moved in with us!!  Goodbye, New (now old) Home!! Hello, actual home!

I answered the question affirmatively (although there wasn’t a spot for all those exclamation points).

Again, I accounted for the savings.

Soon after electronically filing the form, I got a call saying I needed to go into the Social Security office to make the address change.

This made no sense to me.  I already made the address change.  In fact, the woman at Social Security that I spoke to in mid-March said she would type up a note and send it to the local office so I wouldn’t have to physically go into the office.  She was such a sweetheart, I talked with her supervisor to give her kudos.

They wanted to see me so I made an appointment and gathered all my paperwork beforehand.  I was anxious about the appointment because I still worried they were overpaying Robert. 

Before leaving work for the appointment, I even joked with my best friend that she’d have to bail me out of Social Security jail.

The woman I met with was no-nonsense.  I tried being friendly while she typed my information into the computer but she didn’t smile or respond. She asked questions about our living arrangements (centering on whether or not Robert ate with us or bought his own food). 

Let’s be clear: the Rocky Road ice cream is Robert’s!

I told her I wasn’t sure why I had to come in because of my conversation with the rep in March and her telling me I wouldn’t have to go into the local office.

Ms. Bureaucrat said, “There’s no record of you ever calling Social Security.” Was that smugness? An accusation?

What?  That’s impossible. I told her who I talked with and what number I called.

She said, “Ma'am, I don’t know Darlene.”

Oh for heaven’s sake! Of course you don’t know Darlene – there’s probably a million people employed by Social Security!  

Did I call the right number?

“Ma’am, that number is for the WHOOOOLE United States.” (Complete with hand gestures to indicate just how big the United States is in case I didn’t know.)

Wow.  She’s not only a bureaucrat but she’s condescending.

I repeated that there have to be notes in Robert’s account that I’ve called.  I explained I called numerous times.

She just stared at me.

She then asked about the savings. I told her I had saved what was not spent each month which added up over the year. I explained that it was put in Robert’s Special Needs Trust so that neither he nor I have access to it because it was over the $2,000 threshold. I told her that it was going to be used for home improvement for Robert.

She repeated that there shouldn’t be any savings and that part of that money was to pay for his housing.  I explained the housing was paid for by his Regional Center or Medi-Cal.

She said that is not possible. Board and Care homes are not covered by Medi-Cal.

Um, well, he lived there for a couple of years and, trust me, I would have heard if they weren’t getting paid.

I told her I could contact Robert’s Regional Center rep and she said she would call him if I had the number.  

To her surprise, I produced it.

She called and left a message while I sat across from her.

She then said because Robert was getting more than the allowable threshold, Robert’s SSI would stop.  I actually didn’t really care about this.  After all, at this point, he’s only getting $35 a month from SSI.  That’s fine.

“And he will lose his Medi-Cal.”

Whoa!

He can’t lose his Medi-cal.  His medical expenses are outrageous between doctor visits, prescriptions, hospital stays and briefs. I don’t care if he loses all of his monetary benefits but he can’t lose the medical.

“Well, he still has Medicare. Plus, you can apply for Medi-Cal through the county.”

She then went on to tell me we would have to pay back the overpayment.

By this time, I was not only stunned but also confused.

Why in the world is he losing his SSI and Medi-Cal?  He has always had these. He’s been disabled since he was a child. 

I don’t understand. She couldn’t/wouldn’t explain to me why he was losing his benefits other than Social Security is paying him more than the threshold. I asked why the amount wasn’t adjusted as it has been in the past so he isn’t over the threshold.

She didn’t answer but jumped up in her seat and said, “Oh, I might be able to stop the SSI in August.” 

With one click she stopped his SSI and Medi-Cal.  She turned to me and said, “I couldn’t stop it in August but it is stopped effective September 1.”

The disappointment in her voice was noticeable.  I think she expected me to tell her how sad I was for her.

With one click (and one very unhelpful bureaucrat), Robert has lost his Medi-Cal benefits.

I will have to appeal her determination once I officially get it while I simultaneously apply for Medi-Cal through the county.

More to come as the situation develops.

For now, I need to take something for my headache.

Thank you, JC Penney!

Dear JC Penney,

It isn’t every day that a big corporation makes things right with a disgruntled consumer. It’s probably even rarer to have a couple of problems brought to their attention and then resolved within just over 24 hours.

You did just that and then some!

 

Robert and his favorite stylist, Salita

I take care of my disabled brother, Robert, and he likes to look sharp. His hair can get pretty wild from wearing a helmet most of the time and with his curls (yeah, no one in the family knows where they came from).  He also has a mustache that I’ve only seen shaved when he’s going in for brain surgery.

He shaves himself (thankfully, I recently was able to convince him to use an electric razor instead of a disposable – those were a deadly weapon in his hands!) but he likes to go in for a haircut and mustache trim every now and then.  He makes it clear, though, he only wants “a trim.”

He is very specific about his look (at least he isn’t a shoe hoarder like an unnamed older sister . . .)

I have always liked shopping at JC Penney and thought the salon would be a good place to take Robert.  We lucked out when we found Salita, Robert’s favorite hair stylist!  She treats him like a king which does not go unnoticed by me or Robert. When Robert and Salita first met, Robert told her his story of how he has had epilepsy his whole life and how he almost drown when he was a teenager.  I just watched as they bonded during the shampooing and conditioning and cutting and trimming.

I knew I wouldn’t be able to take Robert to any other stylist – Salita was meant for Robert.

We try to see her every six to eight weeks or so and Robert was recently due for a visit. He usually uses his walker but has been extra wobbly lately and I wanted to see if I could add to my shoe collection after his hair appointment. I decided to use the wheelchair for this visit.

Once we got to the store and up to the door, I pressed the handicap button only to find it was not working. There are two sets of doors leading into the store so this was no small feat opening a door and getting Robert in (thankfully, a stranger held the second door open for us). 

We made it to the appointment and Salita gave us a warm greeting, big hug and even bigger smile. She took us back to her station and went to work on Robert. She even noticed how “healthy” Robert was looking since he moved in with us (note to self: cut back on the Rocky Road ice cream). No one but Salita could say that and really mean it in a kind way. 

After the appointment, I wanted to shop a bit and pushed Robert around the store picking up a top or two (no shoes this time). I wanted to make the trip quick because the last time we were here, Robert needed to use the restroom and I had to take him into the ladies room (after scoping it out and making sure we were the only ones in there). 

Side rant: I wish more stores would have family-style restrooms!

Once I was done shopping, we left through the same non-working doors and again relied on the kindness of other customers.  I was frustrated though and was determined to let you know my frustration.

I have been known to write a letter or two to corporations when service or products were shoddy. Once when I was in college, I even wrote about a Pop-Tart that exploded in my toaster and requested a new toaster. Instead, I got a coupon for more pop-tarts which was just fine for this poor, starving college student. 

On the drive home, I composed my letter in my head while Robert worked his word search puzzle.  Once home, I sent an email through your website and also (because I love Twitter), sent a tweet.

Never in a million years did I expect a reply to my tweet.

Not only did I receive a reply to my tweet by the next morning but we had a conversation about my issues (the door and the bathrooms) and I also mentioned how much we love Salita. Whoever was tweeting was kind, considerate and solution-oriented – I couldn’t have been happier with this sort of response!

Next, I received a response to my email only slightly later than the tweet.  Within a few hours of the electronic correspondence, the salon manager called to tell me the door would be fixed within two hours that day and Salita would be recognized with a card and a gift.

Not only that but he told me there was a family-style bathroom on the other side of the salon that I didn't know about!

What a win! I was thrilled Salita was being recognized for going above and beyond and was very happy the doors were going to be fixed immediately.  Plus, I feel much more comfortable knowing there is a family-style bathroom available!

What terrific and quick solutions! Thank you so much!

I mean, really, the only thing that would have made this even better would be a new pair of shoes but I’m assuming they’re with my toaster . . .

[UPDATE: JC Penney keeps getting more amazing. They reached out and offered me a gift card for a pair of shoes! I thought about declining the generous offer for about 2 seconds but, hey, it's shoes! Thank you, JC Penney, not only for the shoes but this whole experience.] 

Friday Night Fun

Friday nights have always been special for me.  It is the end of the work week and time to relax! When my daughter, Rachel, was little she and I would find something fun to do (usually go to a movie or watch a television show) on Friday nights. When I married Richard, his daughter, Caitlynn, joined us for the Friday night fun.

 

Friday Night at IHOP

Richard has a younger son, Christopher, and they watched their own shows or, if we were at the movie theater, they would often times see a different movie than us. We’d meet up for popcorn and treats beforehand and they would play video games if their movie got out first.  We didn’t do this every week but often enough to make my heart happy thinking about it now that the kids are grown and out of the house.

With the kids grown and having their own Friday night fun (note to kids: hopefully not too much fun!), Richard and I developed our own Friday night routine – date night! We usually go to a movie – sometimes even dinner and if we were really going all out, we’d have frozen yogurt afterwards.  

Woohoo!   

Friday nights have evolved again now that Robert is living with us.  Richard and I don’t have an aide to help us yet so the three of us have continued the family tradition of Friday Night Fun.

The three of us have had some fun going out to dinner or getting take-out when the week has proven to be too tiring for all of us.  Sometimes Rachel joins us (when she’s not out having too much fun with her friends). 

I wasn’t sure what Robert would think about eating foods different than his usual fare of cheeseburgers and pasta but he has tried Mexican food and even Thai! Of course, we’ve also enjoyed the old standby of waffles at IHOP (I mean, those are hard to pass up!). Robert wanted steak one night (probably because he’s on to us that we’re feeding him veggie cheeseburgers) so we went to Brookfield’s which has a variety of foods on their menu – steak for Robert and vegetarian options for us.

Everyone was happy!

The only issue we have encountered is Robert still wants his Rocky Road ice cream when we get home.  Most of the time by the time we get home it is already past his bedtime and sometimes we have even had dessert already!  (If I get my way, it’s usually frozen yogurt). With the big meal he just ate, Robert doesn’t need ice cream on top of it but sometimes I’ll let him have a little bit. Just a little. 

My saying “no” to Robert’s daily routine of Rocky Road has been met with about as much enthusiasm as you might expect from him. Luckily for me, he doesn’t notice when I downsize his portions.

It’s a start.

Just like our Friday night routines have evolved through the years, I am confident Robert’s routine of ice cream every night will evolve.  Maybe not easily or willingly, but I am confident we’ll get there.

Let’s just leave my frozen yogurt out of this . . .

Robert Update: Define “Decline”

Robert had a follow up visit with a stand-in GP the other day.  This was to give us the results of the pulmonary testing Robert had done not too long ago which had been ordered because he’s been hospitalized twice in the last 11 months for pneumonia.

His regular doctor is terrific and she wants to get to the bottom of his seeming susceptibility to pneumonia.

I was hesitant to see the new GP only because you never know what you might get with a new doctor.  This new doctor was filling in for Robert’s wonderful regular doctor – who is now on medical leave herself!  

Yep, even doctors get sick.  In fact, the last time Robert saw her (when she gave us the referral for the pulmonary testing), we were swapping emergency room stories.  She had recently been in the ER and even she – A DOCTOR – had trouble getting the staff to listen to her.  She said the ER is so chaotic that the staff just wants you to “sit in a corner and be quiet.”  (The doctor actually said that!)

I love Robert’s GP – she gets it. She’s awesome with Robert, personally called me when he was in the hospital and one time even gave me a tip for an online shoe store – now that’s a doctor I can love!

I would have preferred to see her for Robert’s follow up but she is out for another month and I really want to get to the bottom of Robert’s coughing and congestion issues.

We lucked out – the replacement GP was another fantastic doctor.  He listened to my theory about acid reflux and GERD possibly being related to Robert’s coughing and lung issues, he told me what he was thinking about what might be wrong and how we can figure it out for sure and he was extremely kind to Robert. 

He even laughed at Robert’s jokes!

I have to say how grateful I am to have such a supportive medical team for Robert. Robert’s medical expenses are covered through Medicare and Medi-Cal (the California program for Medicaid) and one might expect a reduced level of care because he doesn’t have top-notch private insurance.

Nothing could be further from the truth for him.

We are very fortunate.

The new GP agreed with the acid reflux/GERD theory and added a medication to Robert’s growing list of daily pills (Robert is doing his part to keep the pharmacy in business!). The doctor also gave us a referral to a GI specialist and thought they may want to do a colonoscopy and an endoscopy – scopes on both ends of the GI tract. 

I’m assuming not at the same time. . .

The doctor backed off of the pulmonary specialist referral but decided to do a six minute walking test, just to be sure. 

Well, that didn’t last long because Robert’s blood oxygen level dipped to 84 in less than 60 seconds of walking (it should always be over 90 at the minimum). (Not really surprising to me since I know he starts to breath heavily when we are walking at the mall or going to Target.)

The doctor decided Robert needed the pulmonary referral after all as well as oxygen whenever he is “active” – definitely a relative term since I wouldn’t really use “active” to describe Robert.

In a span of 30 minutes (that’s counting the bathroom break Robert needed), we got a referral to a GI with the possibility of at least two tests coming up, a referral to a pulmonary specialist (with more tests to do, no doubt), an order for oxygen and new medication. Oh yeah, and more blood work to check for a nasty stomach bacteria, vitamin deficiencies and a host of other possible issues. 

On top of this, I realized I had made a mistake with Robert’s medications!  Yikes! For some reason, I recently added an additional Zonegran to his regimen in the morning. The only explanation I can come up with is his neurologist added a third one in the morning last fall and then a fourth one in the evening after Robert’s recent seven minute seizure and I got it in my head that he needed four both in the morning and the evening.

Ugh! I was sick to my stomach when I realized I – the keeper of the medications and holder of high expectations of myself – made a medication mistake.

While I’m still kicking myself for it, I need to move on.

On the plus side, since Robert was taking 27 pills per day (with my error), the extra prescription doesn’t really add anything to his daily count – correcting my error and adding the new prescription is a wash as far as the number of pills per day. 

(That’s called New Math . . .)

With more doctors added to Robert’s medical team, an order for oxygen and a new prescription, does this mean a decline for Robert?

I have noticed he has increased short-term memory problems, his right leg drags more and his coughing fits have increased and been more intense (often times causing him to vomit). Robert’s incontinence seems to be getting worse (he sometimes doesn’t realize when he’s going to the bathroom, even when he’s on the toilet which is new).

Recently, I asked Other Brother if he noticed a decline. Other Brother doesn’t see Robert as often as I do so thought he would be a good judge of seeing any real change.

He told me he thought Robert seemed about the same. “Perhaps a bit slower with the walker” but “pretty alert.”

I couldn’t understand how Other Brother couldn’t see what seems to me to be an obvious decline but then it hit me.  The last time Other Brother saw Robert before we visited him recently, was when Robert was in the ICU hooked to IV lines. 

No wonder!  Heck, compared to that, Robert is on the upswing!

What I realized in my quest to define and see “decline” is that it is important to me because I am trying to predict the future. If there is a decline, will Robert be hospitalized again soon because of pneumonia? Will he eventually need a wheelchair because he can’t walk around without falling or trouble breathing? Will we need to change the type of protective briefs he wears because of the accidents? How much longer does Robert really have? How long can we care for Robert at home if his needs increase so quickly? 

Yes, I sometimes wish I were psychic instead of neurotic.

Since I am not, I will take a cue from Robert and live in the moment. (Of course, he’s been reliving moments lately telling us “Good Morning” several times and each time as if it’s the first time he’s seen us.) 

No matter - defining decline can’t be my focus.  Keeping Robert as healthy as possible (even if it means several new appointments) is what is important. Keeping Robert’s medications straight is what is important. Arranging as much help as possible so Robert can continue to live with us is important.

Oh yeah, and visiting that online shoe store is important. . .

Phew! At least I have my priorities straight.

At the Movies with Robert’s Sister: UP

It’s been tough deciding on the first movie to review! Since my reviews are geared toward the caregiver my criteria for the movies are:

1. The movie has to be easily accessible for home viewing;
2. The movie has to be cheap;
3. The movie has to be inspiring, funny, thought-provoking or pure escapism (or all of the above if that’s even possible);
4. The movie can be watched by the caregiver, co-caregiver and/or caree – I’ll definitely note if there’s some reason a caree shouldn’t watch a particular movie;

Sprinkled throughout the reviews, will be those that have won the Academy Award for Best Picture! I will also occasionally even review a newly released movie – once I can get to the theater.

Since Richard and I haven’t yet found an aide to stay with Robert, we recently had a “date night” at home.  This involved me getting Robert to bed (after some Rocky Road, of course), having him watch regular television instead of the recorded shows (because Robert can work a remote even less proficiently than I can) and then me running upstairs with the dogs to snuggle in to watch a movie with Richard.

Instead of popcorn next to my seat, I had two dogs and a video monitor to keep an eye on Robert. Richard was standing and stretching his aching back and in control of the remote. 

I think we had frozen yogurt but it’s a little hard to enjoy that with a fifty pound puppy sticking his nose in the cup saying, “Whatcha got, mom? Whatcha got, mom? Whatcha got, mom?”

We debated what to watch on our date night: Continue with our streak of watching documentaries?  Find another series to dive into?  Watch a regular movie? (At this rate, date night is going to be over before we decide!)

As Richard scrolled through the movies I remembered a movie I had heard was terrific and I hadn’t yet seen: UP.  

I can hear you asking incredulously – what? You haven’t yet seen UP??  No and I have no idea what I was doing in May 2009 that made me too busy to see such a gem.

Several sources had mentioned what a heart-warming and inspiring movie it was. I also knew it had either won or been nominated for Best Picture. I wasn’t far off – UP was nominated for Best Picture but lost to The Hurt Locker.  UP did win the Academy Award for Best Animated Feature Film.  

I knew I needed to see this critically acclaimed, popular and sweet movie but when deciding if this should be my first review, I wondered if I should admit I hadn’t yet seen it!

Of course, I have to be honest so there you have it – I saw UP for the first time a few weeks ago and it lived up to everything I had heard about it.

I was in love within the first five minutes. Two young kids share a love of adventure, fall in love as they grow up, get married and have a shared dream of future adventures.  Of course, life sometimes has a way of changing our dreams and hopes for the future.

Caregivers know this as well as anyone.

The main character, Carl Fredricksen, voiced gruffly yet poignantly as only Ed Asner can, wallows in self-pity and bitterness for a while but then sets off on an adventure to honor his and his wife’s dreams.  

An adorable, earnest and persistent boy (as well as a few unusual animals), join Carl on a wild and at times, treacherous, adventure.  Only after overcoming adversity and coming face to face with his hero, does Carl come to the realization that sometimes our best dreams have been under our noses all along.

I highly recommend this movie for the caregiver and their caree and give it five scoops of Rocky Road ice cream (out of five).

UP can be found on Amazon for $3.99 (for a 3-day rental) or $8.99 to purchase. 

Richard and I have Netflix and ordered it online for $3.99.

I also have one copy of the DVD to give to the first person to comment that they would like a copy! 

UP is rated PG and is a Disney and Pixar production.  It is directed by Pete Docter, Bob Peterson and lasts 96 minutes.  For a full list of credits, please visit here. 

Guest Post: 4 Steps to Fall Proof Your House, by Paula Spencer Scott

It is a never-ending battle to keep Robert upright.  Between seizures striking unexpectedly when he is walking to him trying to wash his hands, grab a towel and hang on to something (which resembles a game of Twister) to simply tripping over his own feet, we can use all the help we can get to fall proof our house.  

I am delighted to share these great tips from Paula Spencer Scott, Senior Editor at Caring.com.  

Now excuse me while I go rearrange some furniture . . .

4 Steps to Fall Proof Your House

by Paula Spencer Scott, senior editor at Caring.com

Despite being incredibly common, falls tend to catch family caregivers by surprise. They're often so focused on the health problem at hand -- dementia, Parkinson's, or another chronic illness or frailty -- that they miss dangerous conditions around the house that can lead to a fall. Yet accidental falls kill thousands every year (they're the leading cause of injury death in those over age 65), and in 2010 they caused 2.3 million emergency room visits for injuries that often brought an end to someone's ability to live independently.

Here are 4 ways to help reduce the risk of falls for your loved one.

1. Rearrange the furniture.

Your goal is to have clear pathways throughout the house. Sometimes the problem is the big-picture stuff that you and your loved one have grown so used to that you barely see it any more -- the furniture. Make sure it's not positioned in such a way that it requires your loved one to twist or maneuver the body to get around it.  

Seating should be high enough off the ground that your loved one can get up and down easily. Falls often happen while someone is trying to sit down or stand up. 

2. Clear the clutter.

Be aware of any tripping hazards along the floors. Often overlooked "trip wires" include electrical cords or computer cords, extension cords, floor lamps, and pet toys. Keep large baskets handy to corral newspapers and mail so it doesn't snowdrift along the floor. Never use stairs to house decorations or even items intended to be carried up or down.

Use double-sided tape to secure throw rugs, provided the security of the hold is checked often. Ideally, get rid of throw rugs altogether. A consistent, level surface is ideal, either wall-to-wall carpeting or wood floors without scatter rugs. (And if your loved one is resistant to removing clutter, remember to start small, tackling the easiest projects first.)

3. Make grabs secure.

People who are unsteady on their feet often grab for the nearest upright thing to help them catch their balance. Unfortunately, the nearest thing -- a towel rack, a toilet-paper holder, curtains -- often gives way and contributes to a fall.

In the bathroom, install grab bars next to the toilet and inside the shower/bath. Add rails along stairways. You might even consider removing long draperies or tablecloths if they're in places where you notice your loved one clutching them for added support.

4. Light up the world.

Good lighting helps your loved one find his or her way and feel secure. Ironically, fear of falling is one of the risk factors for actually having falls! 

Periodically check that all lightbulbs are still working, especially if your loved one doesn't live with you. Consider lighting the path to the bathroom at night, either with sensor night-lights that illuminate as someone passes, or with a string of Christmas-type lights secured to the base of the wall.

Paula Spencer Scott is senior editor at Caring.com, the leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Paula is a 2011 MetLife Foundation Journalists in Aging fellow and writes extensively about health and caregiving.