Did I Say That Out Loud?

I would love to only write about Robert’s good side and how sweet and polite he is and how he ends every conversation with “God Bless You.” The fact is he gets pretty cranky and stubborn and angry at times.

Wait a minute . . . sounds like me on a bad day. (shhh! Don’t tell my hubby I admitted that!).  :-) 

Today I received a call from Day Program telling me Robert had an “accident” and since they didn’t finish the sentence with “and we called 911” I knew they meant he had wet through his protective brief. The only reason I was called was they couldn’t find his bag with the spare clothes and briefs I had left on his first day. Eventually, they found them and Robert was back to being dry. It didn’t come without a struggle, however.

New House Manager (who isn’t so new anymore but is still fabulous) called five minutes after I hung up with Day Program. See what I mean about fabulous? She communicates!!

Prom!

Hi, Robert!

“Hi, Trish. How are you doing?”

Great. How are you?

“I’m doing very well. And you?”

Our conversations always start the same but tonight I couldn’t go in circles with him – I wanted to get to the good stuff: Prom!

Robert, you had Prom today. How was it?

“It was really good.” Yay! He’s added a “very” and a “really” to his normal responses. He must have had a blast.

Did you wear the clothes I set out for you?

“Yes I did – No, actually I didn’t wear anything! Just joking!” Oh, Robert. You and your humor. . .

Did you have fun at the Prom?

“It was pretty nice.”

Did you dance?

Making Friends

I'm happy to report that Days 2, 3 and 4 of Program went just as well and he even had the van transport (to and from!). Robert told me after his first day that he had met an "Eric" who was very nice and polite.

On Day 2 Robert again told me he met an "Eric" in the van who also was nice and polite. I don't know if there are two Erics or if, as a friend suggested, there is one Super Eric.

Either way it's a win and Robert has a new friend (or two?).

Tomorrow is “Prom” at Program and Robert has his Sunday Best all laid out for him. I confirmed he would get a shower tonight so he would be smelling his best. He was happy that his bandage has been taken off his head (and I’m happy his laceration is healing properly).

I am so relieved that Robert is busy during the day and talking to people and making friends and having fun.

I would be lost without my friends and am grateful Robert is starting to have a few of his own.

Robert's Very Good Day

It has been seven weeks since Robert left his Old Home which filled his days with movies, music, reading circle and bingo (and filled his fridge with Milky Way candy bars with every bingo win!).

Nothing was going to prevent me from getting Robert to Day Program today. Not a visit to the ER, not a bandage still wrapped around his head, not the van transport not being set up.

I arrived early to Robert’s New Home to be sure he was ready to go just in case the van transport arrived at 8:00 a.m. (their arrival was still unconfirmed as of 7:00 this morning). I knew we had a two hour window of time to check into the Day Program so decided to allow them time to show up but still allow me time to take Robert if they didn’t show up. (I secretly hoped they wouldn’t show so I could take Robert on his first day).

Robert was finishing up in the bathroom when I arrived. The Aide said he had already eaten breakfast, taken his medication and had a lunch packed and ready for him in the fridge. Oops – I don’t have a lunch bag for him! (Add that to my list along with soda and razors).

I packed a “just in case” bag (protective underwear and a change of clothes) and waited for him to get out of the bathroom. Robert finished up and walked out to greet me. His smile was enormous. Are you ready for Day Program, Robert?

“Yes, I am.” The grin got bigger.

I explained that we had to wait a few minutes to see if the van would show up. He stared at me like he was considering if this was a good idea or not. I suggested we play one game of cards and then we would go. He continued to mull over what I was telling him. I assured him we wouldn’t be late.

“Okay.” Sheesh. I’ve never had to talk him into playing cards before!

We finished the game in record time and Robert stood up. He’s ready to go.

Robert got into the car and asked “How long till we get there?” Someone is excited!

We arrived at the Day Program and I walked Robert inside. He was still grinning and I was going over the essentials: here’s your lunch, wear your helmet, House Manager will bring you your meds, I will pick you up at 2:30. We walked in the door while I worried that the New Home hadn’t communicated his starting today. The worry was short-lived as Robert was greeted by name by two staff members.

I didn’t think his grin could get any bigger but it did (his cheeks are going to hurt!). Do you need any paperwork from me (hopefully not since New Home didn’t send any with me)?

“No, we have a binder on him.” Oh my god, I’m in love.

All of a sudden, it felt like the first day I took my daughter to kindergarten. I teared up and gave Robert a hug and told him to have a good day. He said his usual goodbyes (“I love you” and “God Bless You”) and walked off with the staff.

I almost cried when I picked him up too. How was your day Robert?

“It was very good.” His grin was still there. He was bursting with excitement and told me all about his day (“I saw a movie, we had lunch, and then saw another movie but didn’t see all of that because you came to get me.”). As we left, the staff asked him how he liked it and, still grinning, told them “it was very good.”

On the car ride home he told me about a person he met and about the “prom” coming up on Friday. “I have to wear my Sunday best.”

“I want to wear my black pants and a nice shirt.” (I thought I was the only one who planned my outfits days in advance). I assured him I would find his black pants and a shirt for him and he would look very nice.

Before getting to the New Home, we stopped for a chocolate shake and a lunch bag.

Robert had a very good day.

A Stormy Sunday Morning in the ER

Well, this New Hospital is growing on me. Yes, Robert was in the ER again this morning with another laceration on the back of his head. (For someone who wears a very hard helmet, he sure bangs his head a lot).

Let’s recap the day although I’ll tell you the ending first so you don’t worry – Robert is fine. (There go my hopes for a career as a suspense novelist!).

It’s early Sunday morning, the dogs have already been let out for their morning potty break (thankfully, our little Pomeranian didn’t blow away in the storm), the cats have been fed and I snuggle back into bed wiggling between our black Lab and my sleeping husband.

My cell phone rings and caller ID says it’s the New House Manager with the Reassuring Voice. I’m pretty sure she’s not calling to confirm arrangements for Day Program which is starting tomorrow.

She sounds pretty alarmed as she explains that the Aide called to tell her Robert was changing into his clothes for the day and had a seizure, falling backward into his roommate’s wooden bedpost. Ouch! There was a lot of blood and 911 had already been called. She was on her way to the New Home and I tell her I would meet her at the New Hospital.

I pull my warmest sweater out of the hamper, throw on some leggings and boots and quickly brush my teeth. I kiss Hubby goodbye (who was out of bed and willing to go with me) then return to the bathroom to put on deodorant. Who knows how long I’ll be up at the hospital and I certainly don’t need to be talking to doctors while wondering if I smell.

Everyone Likes to Laugh

Robert loves to tell jokes. He repeats the same material over and over but his jokes make him laugh every time. Usually, he will joke about drinking whiskey when I ask him if he wants his 7-Up. Or he’ll joke about going to New York City if I ask him if he wants to go shopping. He jokes about playing the “wrong” card in our game of Kings Corner. He always makes himself laugh all the while saying “I’m just joking. I’m just joking. I’m just joking.” I laugh along with him and reassure him that I know he is just joking.

Sometimes, though, his humor takes a very, very dark turn which completely throws me off.

Last night, Robert was sitting in bed getting comfortable before we played cards. He mentioned that he wished he had a heater in his room. I wasn’t cold at all (although that could be because of the hot flashes – welcome to middle-age!) and he was under a warm comforter so, of course, my first thought is that he must be running a high fever (my first thought is never that he’s just making conversation. I’m working on that.).

I walked over and felt his hands and forehead and asked him if he felt okay.

“No. I’m just dead.”

And with that he cocked his head and stuck out his tongue.

Day Program Update

Woo Hoo! The Day Program “interview” consisted of Robert signing documents promising he won’t hit or bite (no problem there) or that he won’t be excessively tardy or absent (now, if I could only get my step-son to agree to that last rule these last few months of high school!). It appears that Robert has been accepted and his Day Program start date may be as early as Monday. (Nothing is confirmed yet so I will believe it when I see it). I have offered to drive him to and from Program until a van transport can be arranged but haven’t heard back yet on this offer. I don’t want a transportation snafu to delay getting Robert into the Day Program.

Robert needs some activities! He was falling asleep so much while signing his name, I made him stand up and told him to “move your booty” to get the blood flowing. (He didn’t move his booty but he did put his hands in the air and move them around). It woke him up long enough to get the documents signed but he never admitted to being tired (oh, Robert, you and your terrible self-reporting!).

Of course, things started out a little hectic. I arrived to Robert’s New Home to find him in the bathroom sitting in a shower chair at the sink in a puddle of water (it was definitely water – I smelled it) and his jeans partially soaked (I didn’t smell those but will think the best and assume it was water too). After drying the floor and replacing an entire roll of soaking wet paper towels (smelled them – it was water), I left him to finish shaving.

I tried to be as helpful as possible to get Robert to move along since we had a 9:00 a.m. appointment. He managed to finish shaving and brushing his teeth with time for us to play a game of cards (he won – typical). As I anxiously checked the time every couple of minutes, I was told the woman who was supposed to be attending with us was taking a sick day today. New House Manager with the Reassuring Voice would be going with us instead. That’s fine but we’re going to be late because she’s not even at the New Home yet. I decided that I would take Robert and meet New House Manager at the interview. (We still were 15 minutes late.) Neither one of us had any paperwork and we had no idea who we were meeting (the woman who was sick had all that) but, once at the interview location, we found who we were supposed to meet with and I was able to fax over the missing paperwork later in the afternoon.

It was messy but it got done and Robert may be going to a Day Program starting Monday! It’s not confirmed or definite (which is what I prefer) but I’ll take it.

Now let’s hope they play Bingo at Day Program so Robert will stay awake and I won’t have to tell him to shake his booty!

Have a Little Faith

Trying to make myself not worry last night was a little like telling a first grader to stop messing with her loose tooth. Instantly, it becomes priority number one.

Robert doesn’t worry about anything. He just says a quick prayer if he wants to beat me at cards or he wants it to stop raining. He just assumes things will work out because he prays for it to work out (or because he tells me when he’s out of something). I don’t really pray because I don’t have the patience to just wait around to see if something is going to work out. I need to take action so things work out. There is no good way for me to stop thinking about “what’s next” for Robert and “how can I take care of things?”

What supplies does he need? He’s about due for some more 7-Up and razors and he definitely needs pens (black & the clicky kind), so I’ll stop at the store to get these for him.

How will his Day Program interview go? He has an interview tomorrow morning with the program that we toured several weeks ago. The application was submitted and now we’re being interviewed. I assume by next year, he’ll actually be going to the program. (I kid) The process to get him into a Day Program is unbelievably slow but it may actually have been for the best. He has quiet time during the day to get used to his New Home and has created new morning and evening routines for himself. These shouldn’t be disrupted too much when the Day Program starts (although he may have to speed things up in the morning in order to be on time for the transport van). Who am I kidding? The van will have to wait – Robert only has one speed (and it isn’t fast!).

What? Me, Worry?

Dare I not worry? Before you faint at the prospect of me, the best Worrier In The Californian Hemisphere (aka, “Witch”), turning over a new leaf and throwing worry out the window, I’m only talking for an evening. Letting go for just a few hours.

I visited Robert today and he was doing just fine. I mean, there wasn’t one thing wrong. He wasn’t congested. He didn’t have a fever. He wasn’t having seizures. He was walking fairly steadily and he was in a good mood. He was even easy going when I told him I had to leave unexpectedly and only had time to play one game of cards instead of our usual three or four.

Robert is settling into the New Home faster than I am settling into him being there. He has a “job” now – opening the blinds in the morning and closing them in the evening. Look out if you’re in his way, though! He is a man on a mission.

New Home has a doctor check up on all the residents once a month. (Of course, I didn’t know this was happening before it happened – see post below on “communication” – argh!). I stop myself from sinking into frustration about the communication issues and remind myself the doctor visit is a good thing. Fortunately, Robert tells me about his days on a regular basis and I can usually piece together what actually happened.

Can Anyone Hear Me?

Communication

You’d think communication would be easy for me. I write a fair amount. I’m a pretty easy person to talk to. I think I am pretty articulate at work and most of the times in my personal life (Hubby looks at me sometimes with a “what the heck did you just say?” or “why do you want me to do that again?” expression but isn’t that pretty normal for Hubbys?).

Communication is important when arranging care for someone. In Robert’s case, I have to ensure the proper medications are being given at the correct times as well as convey the very clear message: DON’T MESS WITH HIS MEDICATIONS. I need to be sure that people are aware of the kinds of seizures he has. He can fall backwards without warning so watch your animals & small children and don’t let him stand near any glass topped tables (I learned that one the hard way).

Bookends of the Day

The bookends of my day were Robert falling this morning and hitting his head (which earned himself a trip to the ER) and Robert running a fever tonight. In between, there was work, card games with Robert (along with Wheel of Fortune and Jeopardy, of course) and, gratefully, a sunny day.

My phone is with me at all times so I can be available in the event of an emergency (which are frequent in my life). It is next to me when I sleep, within earshot at work and plugged into my hands free headset in the car (that’s for the benefit of any law enforcement officers reading my blog).  :-)

This morning, I plugged my phone into the charger and started to get ready for work. I was away from it for 45 minutes but had a voicemail from New Home waiting for me when I checked it. An unfamiliar, but very kind, calm voice was telling me that Robert had fallen while dressing and hit his head on his nightstand (yes, I was the one who added the nightstand to his room. It’s hard to find soft furniture, okay?). Because he wasn’t wearing his helmet and he hit his head, 911 had to be called. This New Person from Robert’s New Home was on her way to the hospital with Robert. This new person turned out to be the new House Manager. She was so calm and reassuring that I instantly liked her and was confident Robert was in good hands (and this was before I even talked to her in person!).

I immediately called her back to (1) to introduce myself to New Person; (2) apologize for missing her call and explain that is extremely unusual to not be able to reach me; and (3) to see how Robert is (not necessarily in that order). She said he seemed fine but was getting checked out at the hospital. I told her I would meet her in the ER and asked where he was. He was not taken to the hospital I prefer (due to his neurologist being based there) but was taken to a hospital I was unfamiliar with. I was very concerned that he would be in the ER for hours and hours and this Different Hospital wouldn’t be able to give him his correct medication and then he would have a lot of seizures again and it would take days to get him back to “normal.” (that’s me – always thinking on the bright side).

On my way to the Different Hospital, the New House Manager with the Reassuring Voice called me back. They were being discharged. Um, what do you mean “discharged?” -- it’s only been an hour since you got there and ten minutes since I last talked to you. One Hour. In the ER. I’m pretty sure the Guinness Book of World Records needs to know about this. ONE hour in the ER? Are you kidding me? I think I like this Different Hospital. I’m used to being in the ER with Robert while priority patients like gunshot victims, drug overdoses, and the occasional stabbing bump Robert down the “list” making for a very, very long stay for us. I can live with one hour in the ER.

So my day actually stayed on schedule. I turned around and went to work like normal. Robert was just fine and I trusted the Reassuring Voice lady.

When visiting Robert tonight I noticed, he had congestion. He had a fever. He was repeating himself more than usual. He looked like he was feeling pretty crappy. So I helped him get ready for bed and we played cards and watched television while he rested in bed. I talked with the familiar aide and asked her to keep an eye on Robert’s temperature. Sometimes when he gets a cold, his fever spikes pretty high and he will end up back in the ER. Hopefully, this information gets passed along to the next shift. I will call in the morning to be sure Robert is on the mend. 

In the meantime, my phone is next to me. Really.

Decisions

There are days I just don’t want to decide what’s for dinner.

Don’t get me wrong, this isn’t because I can’t make a decision. I’m actually very good at making decisions and do so all the time regarding Robert, regarding my home and family and at my Day Job.

I do my research, weigh the options and have been known to write a “pro/con list” a time or two. I can make a quick, reasoned decision if the situation calls for it or I can take my time gathering information and thinking it over.

Unfortunately, I have a terrible habit of second guessing myself and by “terrible” I mean oftentimes it eats me up. There cannot be enough Tagamet in my house.

It's Okay to Look

Robert looks different from other people his age. He is 45 years old but uses a walker, he wears a very hard helmet, he drags his right foot and sometimes he trips. He is slow to respond to questions (he’ll get there, he just needs a lot of processing time). He even has seizures (in public! Oh My!). These can involve slumping down in a chair for 20 seconds or could entail falling flat on his back and laying on the floor twitching for a couple of minutes.

When he was in high school, it also usually meant wetting his pants. That was a brutal time for the poor guy. Sometimes kids can be pretty mean spirited to those who are “different.”

Happy March Day

What? You’ve never heard of March Day? Well, to be totally honest, my middle brother (Rich) and I made it up when we were kids (please – like Hallmark never made up a holiday!). I’m not exactly sure why we created this fabulous holiday but think it had something to do with being addicted to holidays (and chocolate) and having what was perceived as an enormous holiday gap between Valentine’s Day and Easter.

When my kids were little I told them about March Day and, once they were past the whole “it’s not real, Mom (roll eyes/heavy sigh)” kick, they asked what it was supposed to be about. Good question.

To me, March Day is about making someone smile. If it also involves chocolate – all the better.

Wishing you some smiles and all the chocolate you can eat on this March Day!