The Spring Wardrobe

Robert and his Spring Wardrobe

The weather is warming up so Robert is finally ready to wear his short sleeve shirts and keep his coat in the closet (well, we’re still working on that – he really likes to wear his coat).  Robert is very particular about his shirts so I’m always on the lookout for shirts that are button down, have easy buttons to manipulate, have a front pocket on the left and are some shade of blue or solid white. 

Since buttons are getting more and more difficult to manage for Robert, I was thrilled to find Buck and Buck which I briefly wrote about a few months ago.  I was first told about this clothing company from a fellow caregiver who needed clothing that zipped up in the back so that her mom with severe dementia couldn’t wiggle her way out of clothes and her protective brief.

I’ve ordered long sleeve and short sleeve men’s shirts from Buck and Buck and have been extremely pleased with their products.  More importantly, Robert is pleased too and has even branched out to include a red shirt in his wardrobe!

Buck and Buck is based in Seattle and has a variety of clothing for the disabled and elderly.  They also don’t do any advertising.  How in the world do they stay in business without a marketing budget?  By word of mouth, a reliable product and the best customer service a person could ask for. 

The shirts Robert uses are closed with Velcro but have the buttons on the outside so the shirt looks like any other dress shirt.  It makes dressing that much quicker and easier for Robert and undressing is done even quicker.  In fact, when I first showed Robert how the Velcro shirts worked, he carefully watched me “button” the shirt with the Velcro and then laughed at me “ripping” the shirt open to “unbutton” it. 

The shirts are practical and amusing.

My most recent order for Robert’s short sleeve shirts was placed one recent evening but I received a call the next morning from the customer service representative.  Apparently, I ordered two different kinds of shirts and the rep politely asked me if I actually wanted to do that.  One shirt was meant to be worn completely buttoned up (which covers up the Velcro) and the other was to be worn slightly open at the collar without any Velcro showing.  Did I mean to order two different shirts?   Um, no and thanks for calling.  Obviously, this caregiver needs all the help she can get.

Talk about good service!

Because I don’t want to keep this company a secret and (selfishly) want them to be in business for a very long time, I’m passing the word about this caregiving friendly company.  Please pass along their website (www.buckandbuck.com) to anyone who may need special clothing for their loved one.  (And, no, they didn’t pay me for this post).

I’d love to hear about your experiences with this company.  If you know of any other caregiver friendly companies, please let me know so we can spread the word and keep these businesses thriving!

Finding Comfort Even on the Bad Days

I don’t like hearing that Robert got in trouble (or is causing trouble) at his New Home or at Day Program. My first thought is “oh, crap, he’s going to get kicked out” which is a leftover reaction from when his previous care facility used an incident to try to evict him. (Never mind that Robert’s longtime girlfriend had just broken up with him and I had warned the facility he was going to act out. Which he did.)

The call this morning was from Day Program. The director calmly told me that Robert was having a rough day. She explained there is a client at the program who talks loud and incessantly, repeating the same thing over and over. She said it can be annoying to people. It was early in the day and clients were being rewarded with a breakfast (this would be Robert’s second breakfast of the day). Robert became agitated with the constant talking and yelled at the other client. He even used a few curse words while doing so. He wouldn’t stop doing it so the director took away Robert’s breakfast (it was a treat, after all, and he wasn’t behaving).

Taking food from Robert is never a good idea but I understand why it had to be done. There are consequences for bad behavior. (At least he wasn’t in the middle of eating Rocky Road ice cream – I cringe at the thought of what would have happened if he had that taken from him).

Taking breakfast away from Robert further upset him and he took a swing at the director (thankfully, missing).

Robert was having a very, very bad day.

The director calmly explained the story to me and said that he was now in a different room, participating in a different activity with a different group of people. She told me she wants me to know when these things happen and for me not to worry (obviously, she’s met me before and knows worry and I are best buds).

I told her I thought there might be a few things going on that contributed to him getting upset. For one, it’s raining. Robert does not like the rain. If one drop of water gets on him or his walker, it stops him in his tracks and he wants it dried off immediately. For some reason, water really causes him stress. I’ve provided him a rain coat with a hood but he still wants to use an umbrella (although I’m not sure how he manages to push his walker and carry his umbrella). I think one reason why Robert is hesitant to wash him hands is he doesn’t like them to be wet. Luckily, he doesn’t refuse to bathe so this is a manageable problem.

Another possibility for Robert’s crankiness is I told him earlier in the week that I would be out of town this weekend and he wouldn’t be able to come over to visit. I know he looks forward to his visits with us but this is an overdue Valentine’s Day trip with Hubby. This combined with the rain and the other client yelling (and whatever else may have happened at New Home this morning) was just too much for Robert. He acted out and got in trouble.

The director agreed that any of these possible reasons for the acting out (or combination of them) could cause Robert to have a bad day. She assured me this happens and they deal with this all the time. She told me not to worry and that Robert would be fine.

When the director and I finished talking, I spoke with Robert.

“How is your day, Rob?” (Other Brother and I are the only ones who get away with calling him Rob).

“They took my food.” (I saw that coming).

I put on my “mom” hat and explained to him that he can’t get extra treats when his behavior is not good. After I was certain he understood that he needed to behave, we started joking around and he was laughing and cracking a few jokes of his own. I told Robert to apologize to the director and give her a hug. He agreed he would be good and would tell her he was sorry.

After saying our goodbyes, I hung up then called to talk to the director again. She said Robert had a huge grin on his face and “was back.” She said she and Robert agreed to talk nice to one another and then she held out her hand to shake on it. He held out both hands to her and they clasped hands, agreeing to a better day.

Because of this kind of communication, because I know this incident will not get him kicked out of the program, I know I don’t have to worry.

Robert is definitely in good hands, even on his bad days.

Can We Please Just Have Gender Neutral Bathrooms Already?

When I am out with Robert at the mall or a drugstore or eating out at a restaurant or enjoying some other activity in a public place, it is inevitable Robert will need to use a restroom.   Robert has mobility issues and, sometimes, bathroom issues.  He has a habit of falling asleep on the toilet (no matter where he is) and oftentimes needs help cleaning up or even changing his clothes. 

He always needs a reminder to wash his hands.

Robert is a 46 year old man so I’m not comfortable taking him into the Women’s Restroom (actually, I’d be fine with it – it’s the other women in the restroom who probably would have an issue).  If it’s just me and Robert out and about and he needs to use the restroom, I lead him to the Men’s Restroom and let him go in, keeping my fingers crossed he doesn’t have a seizure on the way to the stall.

Robert takes his time in the restroom (because of the apparent narcolepsy when he sits on a toilet) and I either have to wait outside for an hour, hoping he’ll wake up, or I wait until I am (fairly) certain no one else is in the restroom, knock on the door, peek in and ask Robert if he is doing okay.  (This usually wakes him up). 

When not knocking on the door and partially opening the door to talk to Robert, I am lurking outside the restroom getting all kinds of quizzical looks from the men going into and coming out of the restroom.  I give a half-smile and feel compelled to mumble that I am waiting for my brother.   The puzzled look on their face usually doesn’t go away.

This is not a new issue.  Parents of opposite gender children face this when the kids get too old to be taken into the gender appropriate bathroom of either mom or dad.  The child is too old to go into the opposite gender bathroom but too young for the parent to feel comfortable letting them into a public restroom on their own.  What’s a parent to do? 

Caregivers of a disabled spouse or parent (or sibling) and parents of disabled children face this dilemma all the time as well.  Sometimes there isn’t a choice.  When Robert is in his transport chair, I will have to take him into the Women’s Restroom if it’s just the two of us. 

This dilemma makes me wonder how many people stay home just to avoid dealing with a potential problem.  I don’t plan to stay home with Robert just to avoid having to lurk outside of the men’s public restroom or risk scorn by other women when bringing Robert into a Women’s Restroom but there might be others that do factor these things into their decision to go out shopping or to a movie. 

The answer seems simple enough: more unisex restrooms!  Gender neutral bathrooms seem to be popping up more and more but I really don’t understand the hesitation in creating these everywhere. 

The next time you are in a public place or at a public event, check to see if there are gender neutral bathrooms and if there aren’t, think about sending an email to their corporate office.  More awareness of the need for these gender neutral restrooms just might help bring about change. 

I plan to send an email as soon as I’m done lurking outside the Men’s Restroom . . .

Epilepsy Questions Answered (Part Two)

Robert enjoyed being interviewed this past weekend.  He answered my questions while snacking on a few cookies and was happy people wanted to learn about his seizures and epilepsy.  He was even happier when I let him have extra cookies since we had a lot of questions to answer!  Because there were so many great questions, we covered the seizure related questions in Part One and are covering the other questions here.

Q: How do you get first responders (or the public for that matter) to react positively and supportively when Robert has his seizures and you need assistance? How do you handle it when you are met with stand-offishness?

Robert:  (Regarding first responders):  “The ambulance people treat me nice.  They’re very nice to me.”  (Regarding people who are stand-offish):  “People are nice to me.” 

Trish:  The upside of Robert having a memory problem is that he doesn’t recall the kids in school treating him differently or the time (several years ago) someone in a public restaurant witnessed him having a seizure and said, “He must be on drugs.”  I have noticed when we are out and about that people will look at Robert because he uses a walker and he wears a helmet.  I realize people are curious so this doesn’t bother me or Robert.  For the most part, Robert and I have been treated with great kindness. 

Q:  Aside from Robert's epilepsy, how does he feel he's treated as a "disabled" person? Does he sense if others view him differently? If someone is cruel, does Robert meet that with humor, anger, confusion...?

Robert:  “I do not get mad at them.  I probably would tell them a joke or laugh or something.”

Trish:  Upon further questioning, Robert says people don’t treat him differently.  I asked how he was treated when he was in high school (trying to jog a few memories) and he said, “When I was in gym, I had to go to a different class.  I taught the other students how to shoot pool.  They liked that.”

Q:  What, if anything, do people “not get”? What is the greatest misunderstanding people have about epilepsy that you have been exposed to?

Robert:  “I’m not exactly sure.  Some people are confused about what epilepsy is.  Some people don’t know what epilepsy is.” 

Trish:  I would have to agree that it isn’t so much a misunderstanding about epilepsy but more of a lack of knowledge about it.  For many, many years epilepsy was feared because those with epilepsy were thought to be “possessed” and there are many countries today that are still working to dispel these kinds of beliefs.  There also continues to be many misconceptions about seizures.  (For instance, it is a MYTH that a person can swallow their tongue during a seizure).  Something else people may not know is that epilepsy is not a disease but is instead is a disorder or condition.  There are many different causes of epilepsy.

Q:   Do you know of people switching to a smaller vehicle so has not to cause others harm during an accident if they have a seizure while driving?

Trish:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a period of time before they are able to obtain a license.  Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license.  In California, there are two types of Medical Probation.   One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control.  I think it would be difficult to be able to drive (legally) without seizure control.  I haven’t heard of people with epilepsy switching to a smaller car to mitigate the damage of an accident. 

Robert never had enough seizure control to allow him to get a driver’s license.  For many years, he was a master at the bus system and could walk miles to go somewhere he wanted to go.  Only within the last couple of years did Robert tell me a story of how our dad once let him drive on the freeway.  I could only shake my head at the thought since this was not surprising behavior from my dad.  On the plus side, Robert was able to experience driving which made both him and my dad happy but I cringe at the thought of what could have happened if he had experienced a seizure and, in my opinion, do not think it was a risk worth taking.

Q:  In September the committee I serve on will be holding an Emergency Preparedness (EP) fair to coincide with National Preparedness Month. What should I have at the fair to address Epilepsy and how it relates to EP?

Trish:  This is a great topic! Thank you for your work in this regard.  Robert’s biggest challenges in an emergency situation would be:

Inspection Time!

There is something wrong with the Care Facility system if the only time facilities are in compliance with all of the state rules and regulations is the two month window of time in which they will be inspected.
From what I can piece together, New Home is about to be inspected. Apparently, these inspections are a “surprise” although the term is used very loosely considering they’ve known it was about to happen since at least July, the inspection last year was in September and I suspect they are done at the same time every year.

Kind of like Christmas is a surprise when it rolls around December 25th every year.

The last time New Home was so clean was during the budget debates when a few legislators had selected New Home to visit (apparently to see where the government funding was going and what effect slashing funds would have on these types of facilities). A last minute switch meant the legislators didn’t pay a visit but New Home did look pretty spiffy for a few days.

With the inspection about to happen at any moment, there is no more talk amongst the aides about figuring out how to make a cheaper, homemade version of Ensure. Training on food preparation rules is the new focus and is all of a sudden being given to people hired since the last inspection (a year ago).

I suppose it’s a little like me cleaning my house from top to bottom before having guests over for our annual Thanksgiving Dinner.

Oh, wait.  No it isn’t because I am not getting paid by the state and a regional center to take care of six disabled adults and to give them quality care, a clean house and nutritious meals.

Although my Thanksgiving Dinner is pretty awesome!

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.).

Epilepsy: What is it and Can I Catch It?

Since Robert is doing his own educating about epilepsy, I was inspired to do a little educating about it too. 

First, the facts:

What is it?

Epilepsy is a medical condition that produces seizures (it’s also sometimes called a “seizure disorder”). Seizures are caused by an abnormal surge of electrical activity affecting all or just a part of the brain. If a person has two or more unprovoked seizures they are considered to have epilepsy. Epilepsy does not discriminate and affects all races, both sexes and is found in all countries.

Epilepsy is not a mental illness nor does it cause mental illness and epilepsy is not caused by demons (as was thought 3000 years ago).

Depending on the source, between 2 and 3 million people in the United States have epilepsy and, approximately, 50 million people worldwide have it (according to the World Health Organization). Epilepsy can be treated in approximately 70% of the cases (which means a person is seizure free for 5 or more years while on medication). 75% of those cases can eventually be taken off mediation. Ten percent of patients have uncontrolled epilepsy even with medication or other medical means such as surgery (this is the category Robert falls into).

How do you get it?

Don’t worry, you can’t catch it.

For 6 out of 10 people with epilepsy there is no known cause. For those 4 out of 10 other people, the cause could be a brain tumor, a blow to the head, loss of oxygen or trauma during birth or a stroke that deprives the brain of oxygen. High fevers in very young children can also cause a seizure.

We don’t know what caused Robert’s epilepsy but, according to our Mom, he didn’t have an easy birth. Mom broke her tailbone while in labor with Robert and the doctor had to use those barbaric clamps to pull him out (we’ll never know why they didn’t just do a C-Section since there were obviously some issues with him wanting to come out!). Finding out what caused Robert’s epilepsy is not really important to me. I’d rather concentrate on helping him now than looking backwards.

What if . . .

Now that we’ve made the decision to move Robert into our home, we have work to do! One contractor came to the house last week but he hasn’t sent me his quote yet (I’m anxious to get this moving along!). His ballpark figure was higher than I’d like but his specialty is plumbing which is what concerns me most. Robert needs a good shower with plenty of bars to hang on to as well as a built in seat (or at least room for a shower chair). He also needs a sturdy toilet since he’s kind of rough on them (and has broken one or two in the last few years).



The worse the "before" picture, the better the "after" picture


Hubby and his brothers erected a wall in the garage a few years back when we were using that space as an office but since we didn’t add heat or air, that concept didn’t last long and we now use it for storage. Embarrassing, messy storage of stuff accumulated over several years.

We do have help – hubby’s brother is a licensed electrician which is a pretty handy thing to have in the family! He already said he could do the electrical work which means dinner is on us for a very long time (somehow, though, the promise of a lifetime supply of veggie burgers probably doesn’t appeal to the man who single-handedly keeps Carl’s Jr. in business).

We also know a reputable air/heating guy (the husband of one of my co-workers) and I’d just as soon give him our business as some stranger the contractor drums up. We meet with him on Sunday (don’t worry, Jenn, we’ll pay him in actual money and not veggie burgers).

Making Sense of Healthcare Coverage

Let me start off by saying I am very grateful for the government healthcare assistance Robert receives. Really I am. Sometimes, though, I am left scratching my head about coverage decisions!

1. Vision care. When Robert first moved to a care facility in Sacramento, he needed a primary doctor and I also thought it would be a great idea to get his eyes checked and for him to see a dentist. I was fairly confident he hadn’t seen either in quite some time so wanted to take care of this for him. The primary doctor was priority number one so arranged that using the doctor affiliated with his first care facility (he now has a new doctor that is affiliated with New Home and will have yet another one once he moves in with me). Eyes and teeth were next but before the eye appointment, I bought Robert reading glasses because he was squinting while working on his word search puzzles. Can’t have that! Sat him down on the seat of his walker at CVS, gave him several pairs to try on to find the right magnification as well as a style he actually liked. Hours later, he was able to read his puzzle book without squinting! The vision appointment was made but then something happened and I needed to change it to the following month.

Well, vision coverage wasn’t covered the next month (it must have been a new budget year). Ugh. So much for that idea! At least Robert had the reading glasses and was able to do his puzzles. Once Robert moved to New Home, vision coverage was restored and his eyes were checked (and the doctor confirmed the reading glasses we bought were sufficient). When Robert moves in with me, vision check ups are back to not being covered. Even though, it would seem, the state is saving money by having Robert live with a family member.

Can someone explain the logic of this to me, please?

“Just” a haircut?

Getting a haircut is not a huge deal for most people. I personally love to get my hair done because it’s an excuse to sit back and relax and have my scalp rubbed while amusing the stylist with the result of my feeble attempts to cut my bangs (“Trish, please come in for a quick bang trim between cuts! You don’t have to live with crooked bangs!”).

Before. . .

If Robert doesn’t keep his curly locks cut, he tends to start looking like Einstein with his unruly head of hair. Add “helmet head” to it and he needs a sprucing up every now and then. I decided to add a mustache trim to this trip since the last time his mustache was trimmed I did it (see above re my ability to cut in a straight line).

The appointment was at the local JC Penney because Robert is treated well and there is easy access in and out. Parking is available in the shade (a must when it reaches 100 degrees as it did yesterday), the elevator is not too far from the entrance and the salon is just off the elevator. Add to that the availability of restrooms across from the salon and we have everything covered.

Robert had an appointment with a new stylist which puts my protective shield up a bit since I don’t know if she’ll be uncomfortable with a disabled person and I tend to prepare for the worst. She started off making us wait 15 minutes (tick tock, people, we have a specific window between med times and thought three hours was more than enough for a 45 minute hair cut). She apologized profusely so I decided against holding a grudge, writing a letter to her supervisor and getting her fired. I suppose I can just be here for Robert’s haircut and not try to change the way Penney’s does business.

While Robert settled into the shampoo chair, the stylist asked me, “What happened to Robert?” Great question and I appreciate when people ask instead of staring in awkward silence. After answering, “He has epilepsy” and feeling the ears perk up of the other stylists and customers, I thought this was a great opportunity to talk about epilepsy and maybe teach a thing or two in the process.

While I sat congratulating myself for wanting to seize this educational opportunity Robert beat me to it.

Tools for Your Caregiving Tool Belt – Navigating Government Programs

We’ve added Education and Navigating Care Facilities & In Home Care to your caregiving tool belt (again, thanks to Denise Brown who gives many caregivers plenty of tools for their caregiving tool belt and is the kind soul behind caregiving.com – a wonderful online support community).

At some point in the caregiving experience, you will most likely need to step into a government office. Before doing so, take a deep breath (or a few) and throw all expectations of common sense out the window.

This is not said out of mean-spiritedness or because I am perpetuating stereotypes without basis. There are many, many helpful people who work at the various government agencies who I cannot blame for the difficulty in navigating these agencies. It is my personal experience that the policies and procedures are so convoluted that two people from the same agency, working in the same office may give you two different answers to the same question!

I’m not here to change the government (although it is on my to-do list) but will help you navigate through a few government agencies as painlessly as possible. (If you’d like to read an admittedly long, yet honest personal experience of dealing with a government agency, my first ever blog post details it here).

The reason contacting a government agency may be necessary is for help in covering the extraordinary expense of caregiving. Depending on personal circumstances, this may or may not be necessary and your loved one may not qualify but it is worth looking into. Caregiving is expensive!

Tools for Your Caregiving Tool Belt – Navigating Care Facilities and In-Home Care

Yesterday, we added education to your caregiving tool belt (and I’d like to thank Denise Brown of Caregiving.com for coming up with the awesome concept of a “caregiver’s tool belt”). It’s reassuring to know when caring for your loved one you are not alone and there are resources out there to educate you about the particular disease or condition your loved one is living with. Knowing as much as possible about what you and your loved one is dealing with will help so much when talking to medical professionals – throw intimidation out the window!

The focus today is on resources available when searching for additional care for your loved one. This can include either in-home care or a care facility.

But first comes the decision . . .

The Decision.

The first decision to be made is the type of care needed at this time. It’s important to remember the phrase “at this time” because carees will have different needs as their disease or condition progresses and our ability to help may change over time as well. It’s okay to admit this. All you can do is manage what is happening “at this time.”

Family Support. Although you, as the primary caregiver, are the one making the decisions regarding care it is important to seek out others to help make the best possible decision. If feasible, enlist the support of other family members to help decide if additional in-home care is needed or if it’s time to move your parent (or sibling or grandparent or other caree) into a care facility.

Each family is different but keep in mind offers of help may not come streaming in. As the primary caregiver, it may be necessary to set forth specific tasks each family member can help with. Many people will make vague offers of assistance but unless given a specific task (“please call three care facilities by Wednesday”) it won’t get done.

Potato. Table. Green.

Potato. Table. Green.

Remember those words (there’s a quiz later!).

The countdown is over! Robert saw his fabulous neurologist with the awesome Canadian accent today and the results are in (although so are a lot more questions).

The MRI showed no stroke (yay!!) and actually indicated no change whatsoever since his MRI of two years ago (there goes my medical career). The “large area of encephalomalacia” that sounded so concerning was due to his brain surgeries of several years ago so wasn’t anything new.

Phew!

So am I nuts for thinking Robert has declined? (For those who do think I am nuts, sorry to disappoint you but this isn’t your proof). Lady Neuro notices the change, too, when Robert can’t walk across the room to get to the examination table without a great deal of assistance. She puts Robert through a battery of physical and mental tests with me hovering, ready to jump out of my skin to help (but somehow restraining myself).

I’ve moved from Helicopter Parent to Helicopter Sister.

The Unknown

“Large area of encephalomalacia” says Robert’s recent MRI report.

Well, of course! How obvious! That explains so much!

Huh??

Even the wonderful world wide web doesn’t give me much more of a definition than “softening of brain tissue.” I don’t have Robert’s previous MRI report so don’t even know if this is something new and won’t know until we see his neurologist on Wednesday. I just know I wouldn’t want my brain to soften and am doing mental exercises as we speak (not that I even have the foggiest idea if that helps prevent softening).

Because we want to rule out the possibility of a stroke, Robert had an MRI last week. He is having more memory problems, dragging his right foot more than usual and also having trouble using his right hand to button his shirts. (Oh my god. Please tell me I don’t have to learn to sew. Sewing large buttons on each of his shirts would take me so long I’d have to quit my job and hire a small army of seamstresses to accomplish the task. Add to my to-do list: search the internet for large buttoned shirts.)

Goldilocks

It’s been a while since I posted but I was letting The Meeting simmer for a while. (These feelings probably also contributed to being a bit too harsh on my wayward son). After a week of reflection, I have decided it is in Robert’s best interest to move him.

Again.

You might be thinking there is just no pleasing me (which, if you ask New Home – or Old Home for that matter – that might be their answer). Personally, I think I’m pretty easily pleased as long as my brother is well cared for and thrives in his environment (and I don’t think that’s too much to ask).

Since 2009, Robert has lived in three facilities. The first was a Skilled Nursing Facility because he had a raging staph infection and needed intravenous antibiotics for six weeks. This SNF had caring staff, knowledgeable medical personnel as well as physical and occupational therapists who helped Robert with exercises and provided him the medical equipment and devices he needed.

The most useful of these devices? Shoelaces that cannot untie! For something so simple, these magical shoelaces have contributed to maintaining Robert’s independence more than anything else I can think of at the moment (Robert likes regular lace up shoes instead of Velcro and should be able to have that option wear them if possible).

(See? I was pleased with this facility!)

Effort

Sometimes I can be a little preachy – just ask my kids. Or my husband, for that matter. Okay, ask anyone who knows me. Today, wonderful readers (and I do think you’re wonderful because I am just amazed I have readers!), you will find this out about me too.

It bothers me beyond belief when people don’t put their full effort into whatever it is they are working on. Why not put in 100% (or more) effort? What makes people just do enough to get by? Why waste talent and energy and intelligence? Why give up just because something might be a little (or a lot) challenging? My favorite quotes are those dealing with persistence, tenacity and never giving up.

“Failure is falling down nine times and getting up ten.” -- Jon Bon Jovi

“Success consists of getting up one more time than you fall.” -- Oliver Goldsmith

As a part-time freelance writer with a goal of doing so full-time, quotes like these have to be my mantras or I would never get anything published.

The topic of effort has been on my mind lately because I find myself comparing the effort Robert puts in to every day activities to an Unnamed Son’s attitude of skating through school (and life). It takes Robert almost two hours to shave, change and brush his hair in the morning (and that’s without a shower!). It takes Unnamed Son thirty minutes to get ready in the morning (one minute to shower, change, brush his teeth, do his hair and put in his contacts and 29 minutes to let the shower run for no reason).