Thursday, April 28, 2011

New Hardware

Robert is sporting six new staples in the back of his head and I got to visit two hospitals in one day.  (Maybe I should become a hospital Secret Shopper!).

At 6:00 a.m. my husband’s mom went in for a Valvuloplasty to help out her heart. We were at a downtown hospital to visit with her before she was put under and stayed until the procedure was over. Her procedure was pronounced a success and she’ll be home – better than ever – tomorrow.

At 5:30 p.m. I was finishing up at the office when I got the call that Robert had fallen and had a gash in his head. Off I went to meet him at New Hospital. I confirmed Robert was following the “must wear helmet at all times” rule but somehow he fell backwards onto a large, fancy scale and something metal wedged itself under his helmet. (With a lot of force apparently).

A few hours and six staples later, Robert was back at the New Home brushing his teeth and getting ready for bed. (I watched the stapling while cringing – I guess I can cross off “doctor” from my list of future careers). The stapling didn’t bother Robert; the only thing causing him concern was that the hospital didn't carry the TV Land Channel and he got to bed later than his preferred bedtime of 9:00 p.m. on the dot.

The New Hospital was fabulous as always. Volunteers asked if House Manager and I would like coffee or water. They brought Robert a warm blanket and pillow. Robert was able to watch his beloved Wheel of Fortune in his private room while waiting for the staples to be . . . stapled. The nurses and doctors were professional, courteous and even had a sense of humor – right up Robert’s alley.

The doctor was at first confused as to why Robert had a seizure. I explained that it is common for Robert to have breakthrough seizures which is why he wears a helmet. The doctor glanced at Robert’s helmet on the counter and then back to the still bleeding gash on Robert’s head and said, “Well, I guess he needs to be bubble wrapped.”

Please don’t give New Home any ideas.

Tuesday, April 26, 2011

Sometimes You Have to Settle for PB&J

Robert eats hamburgers at my house on a pretty regular basis. He eats “combination” pizza if it’s pizza night at our house when he’s over. He also eats turkey when he comes over for Thanksgiving.

All that may sound like (1) a pretty boring start to a blog post and (2) fairly common meal selections.

Except my husband, daughter and I are vegetarian. My other two kids (Richard’s kids, to be technical, but we’ve been married so long there’s no “his” or “hers” any longer, just “ours”), are not vegetarian so we are used to having meat in the house.

On Easter, however, there was no meat in the house. The two meat-eating children hadn’t been over for a while and since we planned on eating out for dinner I didn’t think about going grocery shopping.

Robert loves his meat. He doesn’t care what kind, just as long as it’s meat.

When I visit him, I always ask what he had for dinner.

“Umm. . . bread. . . and. . . some fruit. . . and. . . Meat.”

What kind of meat?

“Ummm. . . it was just Meat.”

Obviously, not a discerning meat eater. As long as it is recognizable as meat, he’s happy (although I have slipped him a vegetarian sausage or two).

On Sunday, I asked Robert what kind of sandwich he’d like for lunch.

Do you want a Peanut Butter & Jelly sandwich or a cheese sandwich? (I’m quite the chef, as you can tell).

Long pause.

“Do you have Meat?”

Nope. I can make you an egg salad sandwich, though.

Long pause and a long stare. Mental note: he doesn’t like egg salad.

“No Meat, you say?”

Peanut Butter & Jelly or cheese. Sorry.

“Hmm. What kind of jelly?”

Yay! We’re getting somewhere.

In spite of the disappointment of not having Meat, he seemed to enjoy his PB&J (it was strawberry jam, by the way) and apple slices.

It’s important to me to allow Robert to be who he is – a church-going, meat-loving, card shark – but sometimes, settling for a PB&J can’t hurt.

Sunday, April 24, 2011

Happy Easter

Religion is very important to Robert. Growing up, our parents went through a “church phase” (it was the 70’s and there were a lot of phases). We went to church fairly regularly for a while – trying out different faiths – but I wouldn’t say either of our parents were “religious.” Mom grew up in a devoutly Catholic family but, for whatever reason, did not continue those rituals when raising us kids (although, she hedged her bets when we were babies by making sure we were all baptized in the Catholic Church).

Somehow, with obviously little help from our parents, Robert has found great comfort, peace and acceptance by going to church. Robert says grace before every meal, says “God Bless You” to everyone he meets and prays before going to sleep at night. He tells me it takes him 30 minutes to say all of his nighttime prayers (knowing Robert, he prays for everyone he knows, anyone he happened to meet that day and, just for good measure, for him to win a few more card games). He gives my Polish Catholic grandmother (a woman who is never without her Rosary Beads) a run for Most Religious Person in Our Family.

Before I moved Robert into a care facility, he went to church every Sunday and participated in weekly bible studies as well. It was not unheard of for him to be at church events two to three times a week. I know this group of people was very important to Robert but I was soured on his church several years ago when they advised him to stop taking his seizure medication because he was “cured.”

Robert ended up in the hospital because he wouldn’t stop seizing. I’m sorry but that is just irresponsible and I tend to hold a grudge. (Yeah, yeah, I know – if only I was more religious I would be more forgiving.).

Thursday, April 21, 2011

On the Plus Side . . .

Seeing the silver lining in difficult situations is my specialty but can be challenging at times even for a Pollyanna like me. I do my best not to obsess about Robert’s long-term future but I am failing miserably lately. Robert forgetting his roommate’s name the other night really threw me for a loop. Is his memory going to further decline? Will his balance issues continue to get worse eventually landing him in a wheelchair? What will his life be like in a year? In five years?

What is his life expectancy? (Yes, I worry about this.)

Where’s the silver lining? Where are the positives that I can hold on to? He remembered his roommate’s name last night but needed confirmation that he was correct. He was! That’s progress but still disconcerting. We’ll put that in the “plus” column anyway.

Robert’s incontinence is getting worse (more frequent accidents in the daytime) but, on the plus side we may have found a solution for the nighttime incontinence. See? Silver lining! I am having him try out nighttime briefs that are kept closed with adhesive instead of the pull-up type. One Aide has reported that the sheets were dry the following morning. Yay! Another one for the plus column.

(I don’t have any more reports since that first one because why would the New Home want to inform me about anything like that? After I’ve asked them a hundred times to communicate with me? Me and my crazy expectations. Enough of that snarkiness – trying to stay positive here).

Back to the positives: Day Program called today to discuss the increased incontinence and leaking onto his clothes. (In case you missed it, the plus in that sentence is that they called me.) Day Program suggests regularly reminding Robert to use the restroom. This is a great idea but (as they kindly put it) Robert can be “pretty head strong about his independence.” What a nice way to say he’s a stubborn hard head! After talking with Robert tonight, he seemed to be on board with the idea which is heartening. Robert gets really embarrassed when he has accidents so I am willing to try anything to prevent them. I greatly appreciate the Day Program being proactive about this (plus, plus, plus!).

(The New Home hasn’t been proactive about anything except they did install that “bell” for Robert after his latest fall. He’s supposed to use it before he gets out of bed. As I suspected, he uses it when he’s in bed and wondering where his medication is. And when he needs to throw something in the garbage. And when the television remote was lost he used it to ask the Aide to change the channel. He’s never used it before he gets out of bed. Gee, I wonder who told them that would happen??)

Oops, slipped away from the plus column for a minute. . .

In spite of the increased memory and incontinence issues, Robert continues to tell jokes. He makes himself (and others around him) giggle several times a day. The smirk he gets on his face when he says “just joking, just joking” tells me he delights in making other people laugh.

It doesn’t get much more positive than that.

Monday, April 18, 2011

It's All In a Name

It was Robert’s turn but he looked up from his hand to acknowledge the two people entering his room. One of the Aides was walking in to put away laundry and Robert’s roommate was rolling in to go to bed.

“What’s . . . name?”

Robert was mumbling quite a bit tonight and I couldn’t quite make out what he was asking. What, hon?

He tried to whisper but it was difficult to do so without mumbling even worse. “What’s . . . name?”

Did you say “what’s his name?” Do you mean the worker? Because (1) that’s a girl and (2) she’s standing right behind me. She can hear you. Even if you’re whispering.

“My roommate. What’s his name?”

Robert looked very concerned. He doesn’t usually look concerned but his brow furrowed and he very intently looked at me for an answer.

Friday, April 15, 2011

Stylish Blogger Award

Wow, I don’t know how this happened but my blog has been given the “Stylish Blogger Award!”

(Well, I actually do know how it happened and it’s true – it’s who you know, people, it’s who you know.)

Okay, I admit it, it was bestowed upon me (with love) by my BFF at It seems a natural fit since my site discusses incontinence, skilled nursing facilities, protective briefs, emergency room visits and epileptic seizures. All very stylish topics.

Um, wait a minute. . .

Oh, never mind. I got the award and I’m passing it along to a few of my favorite blogs (per the Stylish Blogger Award rules which I’m not quite sure actually exist but enough people have repeated the rules that they do seem quite official). I also, apparently, have to divulge seven things about myself which is a little difficult since I don’t actually like talking about myself. (Odd behavior for a blogger, I know. I’ll get therapy one of these days to figure it out.) I’m the person in the conversation asking you questions. I’ve been married for almost fourteen years and my hubby doesn’t even try asking me questions any more.

However, rules are rules so here goes:

Thursday, April 14, 2011

Robert is Okay

Robert doesn’t have any side effects whatsoever from his medication mishap. Before leaving the Day Program he was surrounded by the ladies who work there and, in spite of a very stressful situation, he had them all laughing at his silly jokes. Plus, he beat me at three card games this afternoon.

Everything is obviously back to normal.

The Day Program is reviewing their medication protocols and guidelines and having meetings about the mishap. Everyone feels awful about the incident. After observing him for a while this afternoon, I called to tell them he was just fine. I certainly didn’t want them worrying all night about Robert. They care very deeply for their clients and since they have been able to use this as a learning opportunity (with virtually zero consequences) then I am grateful.

I’m back home, my fever is making a comeback and I am ready for my marathon Law & Order session.

Let’s just hope Robert doesn’t catch my cold now after he successfully fought off the beginnings of one earlier this week!

My Relaxing Sick Day

I’ve been so worried about Robert getting sick that I didn’t pay attention to my own health. I half noticed a cough a few days ago, then started getting hoarse yesterday and woke up last night with a fever, cough, sore throat: full blown cold/flu. My voice is getting more non-existent by the minute which, no doubt, makes my hubby very happy.  :-)

Because of the fever, I thought I would spare the office my germs. I envisioned a day of alternating my time at the computer (with my cats sitting in front of the monitor, of course), in my comfy pants and in front of the television (with cats on either side of me) catching up on the shows I’ve recorded but never have time to see (I must have 13 Law & Orders to catch up on!).

Instead, I have been on the phone several times with the Day Program, the Neurologist and the New House Manager. Robert was accidentally given his lunch time medications twice. Oops.

Wednesday, April 13, 2011

Can You Be Too Safe?

The New Home is crazy for safety.  You would think a worry-wart like me would be jumping for joy at this attitude.

I make sure everyone is buckled up before leaving the driveway. I drive the speed limit. I made the kids wear helmets when riding bicycles even before it became the law (and would tell my college-age daughter and her boyfriend to do so still if I didn’t think they would give me the “you’ve got to be kidding, right?” look).

I worry when one or two of my staff tell me they are going on a motorcycle trip. I can’t tell them not to go but I worry about them anyway.

Heck, I warn my staff “be careful, the knives are sharp” when I buy new cutlery for the kitchen. (Okay, even I know that’s a little overboard).

Monday, April 11, 2011

Keep Your Fingers Crossed

When Robert misses a play in our card game, I know there’s a problem.

In March, (shortly after Robert moved into the New Home) he caught a cold and I was worried it would follow its normal course (runny nose, incessant blowing of said nose, fever, worsening balance, high fever, more falls, trip to the ER, 2 – 3 week recovery).

And, no, I’m not being a drama queen, thank you very much.

For the first time in the history of Robert catching colds, the cold in March went away after a day or two of very mild symptoms. During this time, he did have a fall and a trip to the ER but the cold went away quickly and the head bump was minor.

I’m telling you, this was mild. (It’s amazing how quickly your perspective changes about the “mild” or “serious” nature of a situation once you’ve logged a few ER trips under your belt).

Thursday, April 7, 2011

The Talk

Robert and I had “The Talk.” I was Mean Mommy for a few minutes and it so happened that our talk was the same day he saw the dentist. Might as well get all the icky stuff done in one day!

I’ll admit it. Robert hasn’t seen a dentist in several years.

(I’ll wait a minute for the outcry to die down. . .).

Sorry, okay? I didn’t take Robert to the dentist. It was on my list of things to do but it never got done. Now that Robert is in this new “system” he sees a doctor once a month for a check-up, has his eyes and hearing checked at least annually and will see a dentist quarterly. Thank goodness! Things I can cross off my list!

Robert had to go to the hospital to the see the dentist. This dentist uses anesthesia on his patients so he is able to do a very deep cleaning and also take care of any extractions at the same time. I found this to be a little bit of overkill but cleared it with Robert’s neurologist and gave my consent.

Tuesday, April 5, 2011

Big Man on Campus

When I first considered moving Robert into the New Home, I consulted with Other Brother. I wasn’t sure about the decision and one of my concerns was that Robert would be the most high functioning person in the New Home. Yes, the person using a walker, periodically falling down from seizures, usually incontinent and sometimes obstinate about good hygiene habits is the most high functioning person at the New Home.

I was worried that Robert would lose some of his hard earned independent living skills and, frankly, I wanted him to be challenged a bit. I also wanted to provide him with people he could have conversations with and maybe even someone to play cards with.

Old Home had an elderly population, most of who were deaf and with various stages of dementia. Robert got used to not being answered when he greeted them in the morning or said good night in the evening. It was difficult for me to watch him continue to try to converse with them, though. It was if each morning he expected that would be the morning someone would answer back. He did have a friend there and she always answered him but I’m not convinced she actually heard him. She was kind enough to acknowledge him and hang out with him during the daytime activities and that always warmed my heart.