I always think I’m prepared. Not because I used to be a Boy Scout (I was in the Brownie’s, though!) but because I’m pretty organized. Some say compulsive. Compulsive, OCD, organized – call it whatever, but who do people come to when they need to know where to find something? That’s right – you know who you are.
This skill/neurosis comes in handy when helping Robert. I’m still perfecting my skills when it comes to him, though, as I have found out whenever I go out of town.
I don’t leave often but there are a few times a year that I am out of town. Last summer, when my daughter turned 21 years old, we went to Las Vegas for a couple of days. Just me and her – it was a blast (although I found myself wishing she was a spring baby instead of born in the middle of the summer – who knew Vegas was so hot??).
Before leaving, I made sure Robert had enough supplies. I didn’t have a back stock of anything but I was only leaving for a few days and, after a quick inventory, he seemed sufficiently stocked.
Apparently not.
One afternoon, while enjoying a cocktail at a couple of promising slot machines (don’t judge – where else are we going to keep cool when it’s 110 outside?), Robert calls.
Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.
Sunday, December 26, 2010
Thursday, December 16, 2010
Sending Christmas cards isn't as easy as it seems
Not only is my own Christmas a bit crazy (see below), I try to spread my craziness everywhere. Robert has lived in The Home for about a year and a half and he already has a supply of holiday decorations. We decorate his room with a tabletop, pre-lit tree (with unbreakable ornaments, of course) and a few knick-knacks to set around his room as well as all of the Christmas themed arts and crafts projects he makes. This year, we added a happy, rotund snowman cut-out to his front door which will make anyone smile as they pass by.
Robert also sends out Christmas cards. Last year, he only did a few but this year I started him early and gave him a lot of time to complete them. I finally figured out Robert likes to give cards (birthday, holiday, happy new year, whatever), with a religious theme so I brought over a couple of boxes of cards to let him choose which ones to send out this year. (um, I do realize Christmas is not all about the decorations, thank you very much). He was very pleased with the selection. I put address labels on each envelope and slipped a card into the inside flap of the envelope so it would be very easy for Robert to see who the card was going to. He told me he likes to write a personal greeting and then sign the card. He told me everything he was going to say. Crap. This will take weeks. I should have started him on Halloween.
Robert also sends out Christmas cards. Last year, he only did a few but this year I started him early and gave him a lot of time to complete them. I finally figured out Robert likes to give cards (birthday, holiday, happy new year, whatever), with a religious theme so I brought over a couple of boxes of cards to let him choose which ones to send out this year. (um, I do realize Christmas is not all about the decorations, thank you very much). He was very pleased with the selection. I put address labels on each envelope and slipped a card into the inside flap of the envelope so it would be very easy for Robert to see who the card was going to. He told me he likes to write a personal greeting and then sign the card. He told me everything he was going to say. Crap. This will take weeks. I should have started him on Halloween.
Wednesday, December 15, 2010
Merry Christmas!
Ahhhh, the joy of Christmas. Peace, joy and goodwill. People are kinder to each other, aren't they? Such a peaceful time of year. . . . carefully making lists while leisurely sipping egg nog, scouring the ads for the best sales, shopping (remember the coupons!), baking, setting off the smoke alarm (with each and every batch of cookies), deciding not to bake quite so much, more shopping (because there are more sales), more lists of gifts for people who didn't make the first list, hang Christmas lights outside, find the perfect tree, blow a fuse (because of all the lights), add more decorations to the outside anyway, spend hours getting the giant (but perfect) tree into a teensy tiny little tree stand (and making sure it is straight!), run back to the store for more lights (this time, for the tree), fight a little old lady for the last box on the shelf, be unable to resist the urge to add yet more lights because the neighbor added more to his yard (we will win the decorations war!!), hang as many ornaments on the tree as possible (note to self: buy another Christmas tree next year or stop buying ornaments), hang stockings (at least the ones you can find; what does everyone do with their stockings from year to year?), find one of the missing stockings in the bottom of a closet of an unnamed teenage boy (bonus! Christmas candy left over from last year), blow off the dust and hang said teenage boy's stocking, print labels for the Christmas cards, realize the printer is out of ink, run to the office supply store to purchase another cartridge (can this count as a Christmas present to my husband?), reprint labels for the Christmas cards, cajole the teenage and young adult children into signing the Christmas cards, resort to bribery to get signatures on the cards, wrap presents, place presents under the tree, watch cats demolish the wrapping, rewrap presents, learn to live with a little rip here and there in the wrapping, is there time to hang more lights? (dang that neighbor!). . . wake up Christmas morning to happy, smiling faces. (And the realization that we won the Christmas decorations war!)
I love Christmas. Hope you enjoy your holiday too!
I love Christmas. Hope you enjoy your holiday too!
Friday, December 10, 2010
Don't Change that Routine!
Robert is a creature of routine. I suppose many of us are but I have always been fascinated by Robert's obsessive, bordering-on-OCD, routines. Washcloths have to be laid out a certain way on the bathroom sink; deoderant has a certain place in his bathroom bag; drinks at dinner are lined up from orange juice on the left to coffee (decaf, please) on the right. He's almost Rainman-esque (an old movie reference for you young-uns), in his compulsion to count. In Robert's case, it's "diesel trucks" when in the car or the amount of bites it takes him to eat ice cream or the number of sips it takes to finish a cup of coffee.
Robert loves the weather report. The news comes on and he diligently writes down the expected high temperature for the next five days. Robert will recite the current wind speed and direction to anyone who will listen.
Robert knows that "Jeopardy" is on at 6:30 and "Wheel of Fortune" is on at 7:00. It's TV Land at 7:30 and Channel 3 at 8:00 p.m. Doesn't matter what is on at 8:00 on Channel 3, Robert just switches to that channel and watches whatever is on. It could be "The Biggest Loser" or "Dateline: To Catch a Predator" -- Robert doesn't care as long as it is on Channel 3. Every time Robert and I play cards he tells me the TV watching routine. He prompts me to change the channel when it is time if my fingers aren't fast enough.
Robert loves the weather report. The news comes on and he diligently writes down the expected high temperature for the next five days. Robert will recite the current wind speed and direction to anyone who will listen.
Robert knows that "Jeopardy" is on at 6:30 and "Wheel of Fortune" is on at 7:00. It's TV Land at 7:30 and Channel 3 at 8:00 p.m. Doesn't matter what is on at 8:00 on Channel 3, Robert just switches to that channel and watches whatever is on. It could be "The Biggest Loser" or "Dateline: To Catch a Predator" -- Robert doesn't care as long as it is on Channel 3. Every time Robert and I play cards he tells me the TV watching routine. He prompts me to change the channel when it is time if my fingers aren't fast enough.
Tuesday, December 7, 2010
Do Not Get Between a Man and His Pizza
"Trish. This is Robert. I am calling you and need you to call me back right away. It seems they won't let me have any pizza. They showed me a piece of paper that says I can't have red sauce. Why do you not want me to have red sauce? Why don't you want me to have pizza? I want to know why you did that, Trish. I want to know. Call me back right away."
Uh oh. This is the second time in as many weeks that Robert told me The Home didn't let him eat pizza. I assumed the first instance was due to The Home putting him on a diet again without telling me. I can usually talk Robert into things so he doesn't get upset by changes in his routine but I have to be notified about any proposed changes first. (Although telling him he can only have 1 piece of bacon when Joe, his neighbor at the breakfast table, can eat 3 is quite the tough sell). The diet thing didn't really work out a year ago and his pants size has, thankfully, leveled off (anyone need jeans size 32, 34, 36 & 38??), so I'm not too keen on trying another diet. After our card game on that first No Pizza For You Day, I talked to the CNA who informed me that Robert did have pizza a few days ago. Oh, okay, Robert is known to mix up his details and days sometimes so maybe he just wanted a LOT of pizza and they said he couldn't have more. I didn't think anything more about it.
But then Robert called accusing me of somehow affecting his pizza eating. I called Robert back to explain that I did not tell The Home he can't have red sauce! I told him I would immediately call the nurse and figure out what the problem is. Robert was very, very appreciative. So appreciative that I suspected he thought I would straighten out the whole pizza problem and someone would immediately come into his room with a piping hot Combination Pizza just for him. Well, I'll deal with that expectation when I call him back.
Uh oh. This is the second time in as many weeks that Robert told me The Home didn't let him eat pizza. I assumed the first instance was due to The Home putting him on a diet again without telling me. I can usually talk Robert into things so he doesn't get upset by changes in his routine but I have to be notified about any proposed changes first. (Although telling him he can only have 1 piece of bacon when Joe, his neighbor at the breakfast table, can eat 3 is quite the tough sell). The diet thing didn't really work out a year ago and his pants size has, thankfully, leveled off (anyone need jeans size 32, 34, 36 & 38??), so I'm not too keen on trying another diet. After our card game on that first No Pizza For You Day, I talked to the CNA who informed me that Robert did have pizza a few days ago. Oh, okay, Robert is known to mix up his details and days sometimes so maybe he just wanted a LOT of pizza and they said he couldn't have more. I didn't think anything more about it.
But then Robert called accusing me of somehow affecting his pizza eating. I called Robert back to explain that I did not tell The Home he can't have red sauce! I told him I would immediately call the nurse and figure out what the problem is. Robert was very, very appreciative. So appreciative that I suspected he thought I would straighten out the whole pizza problem and someone would immediately come into his room with a piping hot Combination Pizza just for him. Well, I'll deal with that expectation when I call him back.
Thursday, June 24, 2010
Catching Up
It's been a while since I've posted. Sometimes life throws a lot out there -- machine gun style at times -- and it takes a while to deal with it, solve it, process it and write about it. That's how I am, anyway. Things happen, I create a plan (or plans) to handle it, execute said plan(s), go into a hole (because I get tired of creating and executing plans), eventually come out of the hole (because who can stay in a hole forever?) and finally write about it. These past few months have kind of been like that.
When we last left off, I was learning the difference between flushable and disposable wipes. Robert was paying the price of my lesson by wading through toilet water spewing all over his floor.
Since that time, a lot has happened. Things that are a lot worse than wading through toilet water (hard to imagine, I know). Let's review:
When we last left off, I was learning the difference between flushable and disposable wipes. Robert was paying the price of my lesson by wading through toilet water spewing all over his floor.
Since that time, a lot has happened. Things that are a lot worse than wading through toilet water (hard to imagine, I know). Let's review:
Saturday, February 13, 2010
Oops -- My Bad
Rob called me about ten minutes after I had woken up this morning. Pretty good timing, considering he could have called when he wakes up (5:30 a.m. or so). Fifteen minutes before 7:00 didn’t seem too bad even though it was the weekend. I was still a little groggy and in the middle of the morning routine of feeding dogs, cats and the turtle but cleared my head when I saw it was Robert calling.
I try to guess why Robert is calling before actually answering to get a head start on preparing myself for whatever it might be. It’s a habit a control freak like me can’t seem to break. What in the world did we (“we” as in me and the other control freaks) do before caller id?
My mind runs through a few scenarios but the first is always: “This is the nurse. We heard a crash and came in. Robert needs to go the hospital.” Then I stop being such a drama queen and move on to more mundane reasons for the call such as “Do you want to come over to play cards?” or “I’m out of toothpaste” or “My remote doesn’t work.”
Just answer the phone already!
I try to guess why Robert is calling before actually answering to get a head start on preparing myself for whatever it might be. It’s a habit a control freak like me can’t seem to break. What in the world did we (“we” as in me and the other control freaks) do before caller id?
My mind runs through a few scenarios but the first is always: “This is the nurse. We heard a crash and came in. Robert needs to go the hospital.” Then I stop being such a drama queen and move on to more mundane reasons for the call such as “Do you want to come over to play cards?” or “I’m out of toothpaste” or “My remote doesn’t work.”
Just answer the phone already!
Saturday, February 6, 2010
Can I Interest You in a Subscription?
If you looked at Robert’s magazine subscriptions before moving into the Care Facility you would think he was an athletic Mr. Fix-It who gardens after a long day of hunting and, in his spare time, collects guns and rare coins while harboring a soft spot for celebrity gossip and an interest in architecture.
The truth is Robert is a developmentally disabled, physically challenged, devout Christian epileptic who enjoys playing cards and bingo, going to church, watching game shows and spending hours on end working on word search puzzles.
He collects magazines; he doesn’t read them.
The truth is Robert is a developmentally disabled, physically challenged, devout Christian epileptic who enjoys playing cards and bingo, going to church, watching game shows and spending hours on end working on word search puzzles.
He collects magazines; he doesn’t read them.
Saturday, January 30, 2010
The Decision
The decision to place Robert in an assisted living facility was not an easy one. It isn’t easy for anyone but, to be honest, it was not only gut-wrenching but I was pretty hard headed about it. Denial is a highly regarded trait in my family and I wasn’t about to give it up now.
Before moving Rob to his Care Facility, Robert lived in a town 90 minutes away from me. He lived with Judy who is several years older than Rob and also suffers from epilepsy. They have been together for twenty years or so although Rob actually tells people they have been together for 35 years. That puts him at, um, age nine when they got together. It’s quite amusing to watch the listener puzzle through the math once Rob says this but I know how important it is to Rob to think he knows how long he and Judy have been together so I usually let the listener remain puzzled, and eventually, slightly alarmed.
Rob and Judy talked about marriage for many years but both would lose some government assistance if they married. They are very religious which made the decision for them not to marry all the more disheartening for them. They purchased rings anyway, lived together, cared for one another, went to church together but, ultimately, never married.
Rob’s mental ability declined over the years due to the seizures, brain surgeries and head injuries and Judy’s has never been much better. Despite these obstacles, they took care of their household, walked to the grocery store together, somehow got to doctor appointments and church on their own and managed their medications by themselves.
Before moving Rob to his Care Facility, Robert lived in a town 90 minutes away from me. He lived with Judy who is several years older than Rob and also suffers from epilepsy. They have been together for twenty years or so although Rob actually tells people they have been together for 35 years. That puts him at, um, age nine when they got together. It’s quite amusing to watch the listener puzzle through the math once Rob says this but I know how important it is to Rob to think he knows how long he and Judy have been together so I usually let the listener remain puzzled, and eventually, slightly alarmed.
Rob and Judy talked about marriage for many years but both would lose some government assistance if they married. They are very religious which made the decision for them not to marry all the more disheartening for them. They purchased rings anyway, lived together, cared for one another, went to church together but, ultimately, never married.
Rob’s mental ability declined over the years due to the seizures, brain surgeries and head injuries and Judy’s has never been much better. Despite these obstacles, they took care of their household, walked to the grocery store together, somehow got to doctor appointments and church on their own and managed their medications by themselves.
Thursday, January 7, 2010
Dry by Morning
I’m warning you right now. Read no further if you don’t like discussions of bodily fluids or messy diapers. Hey, sometimes people needing assisted living or extra care (the elderly, the disabled) have bathroom problems and while it may not be glamorous it is a part of their (and us caregivers’) existence. If you have a weak stomach, recently ate or just don’t have a desire to read about urine (or worse), then please stop reading and come back another day. You’ve been warned.
Lots of people use “protective underwear” (aka, diapers for adults). Incontinence is a huge problem for many people whether it is an ongoing disability, a temporary health problem, age-related or something else. Anyone who has shopped in a drugstore knows there is a large amount of space dedicated to “protective underwear.”
Lots of people use “protective underwear” (aka, diapers for adults). Incontinence is a huge problem for many people whether it is an ongoing disability, a temporary health problem, age-related or something else. Anyone who has shopped in a drugstore knows there is a large amount of space dedicated to “protective underwear.”
Tuesday, January 5, 2010
Losing Robert
“Um, Trish? Is, um, is, um, Robert with you?”
Is Robert with me?? It’s 9:30 on a Thursday evening the week before Christmas. I’m changing into my sweatpants because my regular pants are way too tight in the middle of this holiday season. I have presents to wrap tonight, stocking stuffer loot to sort, cookies and brownies to bake (see above, re pants problem) and Robert’s Care Facility is calling to see if I have Robert? NOOOO! I do not have Robert. You are supposed to have Robert.
The nurse gave me a quick summary of the last time they saw Robert (7:30 that evening) and how they’ve looked everywhere for him, asking one more question to be sure I didn’t have him (I don’t think I’d forget if he was at my house or if I left him anywhere) and then me saying, “I’ll be right there.”
I finished pulling on my sweatpants, threw on some boots and flew out the door with my husband right behind me. Now, I’m not known for my mad driving skills. The slow lane is my home and I like it that way. I drive a van, for goodness sakes. Danica Patrick, I am not. But, I was making even my husband nervous as I sped along the freeway toward the Care Facility.
Is Robert with me?? It’s 9:30 on a Thursday evening the week before Christmas. I’m changing into my sweatpants because my regular pants are way too tight in the middle of this holiday season. I have presents to wrap tonight, stocking stuffer loot to sort, cookies and brownies to bake (see above, re pants problem) and Robert’s Care Facility is calling to see if I have Robert? NOOOO! I do not have Robert. You are supposed to have Robert.
The nurse gave me a quick summary of the last time they saw Robert (7:30 that evening) and how they’ve looked everywhere for him, asking one more question to be sure I didn’t have him (I don’t think I’d forget if he was at my house or if I left him anywhere) and then me saying, “I’ll be right there.”
I finished pulling on my sweatpants, threw on some boots and flew out the door with my husband right behind me. Now, I’m not known for my mad driving skills. The slow lane is my home and I like it that way. I drive a van, for goodness sakes. Danica Patrick, I am not. But, I was making even my husband nervous as I sped along the freeway toward the Care Facility.
Monday, January 4, 2010
The Power of Prayer
Robert called me at work this afternoon. I discourage people from having personal calls come through our receptionist and here I am one of the biggest offenders. Rob calls me when he is out of shaving creme. He calls when he is low on toothpaste. Rob calls to ask me to come over to play cards. You would think with all these calls from him needing supplies and company, I never visit him. Far from the truth -- I visit Robert at least 3 to 4 times a week and diligently check his supplies each time I am there. I keep Robert well stocked with supplies and visit frequently, playing cards most every time.
I have no idea why I am suddenly gripped with the urge to defend myself! Caregiver guilt? Always thinking I don't do quite enough for him? Well, you will have to trust me that I manage his supplies (there's even a backstock in his cupboard!) and care for him quite well, thank you very much.
I have no idea why I am suddenly gripped with the urge to defend myself! Caregiver guilt? Always thinking I don't do quite enough for him? Well, you will have to trust me that I manage his supplies (there's even a backstock in his cupboard!) and care for him quite well, thank you very much.
Sunday, January 3, 2010
Happy New Year
It's 2010 already! Robert ushered in the new year a bit early -- I woke up to my cell phone vibrating on New Year's Eve. That's "eve" not "day." December 31.
Caller ID showed the call was from Rob; my alarm clock showed it was only 6:00 a.m. My mind immediately went to "the nurses found him unresponsive in his room" and are calling to tell me to meet him at the hospital. (yes, that's me being a bit overdramatic). However, with Rob, sometimes you never know.
I answered, bracing myself for the worst, and was greeted with a robust "Happy New Year!" I didn't have the heart to tell Rob he was 18 hours early but for all I know, he was watching television broadcast the New Year dawning in some far away corner of the world. I wished him a Happy New Year back, said goodbye and laid in bed tickled that he was so happy this early in the morning.
Happy New Year, little brother. Happy New Year.
Caller ID showed the call was from Rob; my alarm clock showed it was only 6:00 a.m. My mind immediately went to "the nurses found him unresponsive in his room" and are calling to tell me to meet him at the hospital. (yes, that's me being a bit overdramatic). However, with Rob, sometimes you never know.
I answered, bracing myself for the worst, and was greeted with a robust "Happy New Year!" I didn't have the heart to tell Rob he was 18 hours early but for all I know, he was watching television broadcast the New Year dawning in some far away corner of the world. I wished him a Happy New Year back, said goodbye and laid in bed tickled that he was so happy this early in the morning.
Happy New Year, little brother. Happy New Year.
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