Robert came to our house this weekend for a visit. He’s never stayed overnight with me before since all of our bedrooms and showers are upstairs and he has enough trouble staying upright without the challenge of climbing stairs. I briefly considered that he could try to walk up the stairs to sleep and shower but immediately envisioned him falling through the not-so-sturdy wooden railing to the turtle tank below breaking the glass cage, flooding our living room and squashing our beloved red-eared slider, T-Bone, in the process (yes, our vegetarian household has a turtle named T-Bone).
I’m all about “worst case scenario.”
Before I get to the point of this post, let me just say Robert doesn’t live with me and my family because we don’t have any living quarters downstairs and it would be a tad inconvenient to make him bathe using the kitchen sink as a wash basin. Otherwise, he would live with us. (I’m not sure why I feel the need to defend my decision to have Robert live in a care home but there is a reason that he lives at New Home and not at our home).
This weekend Robert got a change of scenery, I didn’t have to deal with New Home and I was able to observe him to really see how he was doing. I also learned a few things I didn’t know before.
1. Robert wakes up early. I mean, really early. 4:30 in the morning early. I convinced him to sleep in until 5:30 (about the time the cats wake me anyway). He even slept in until 6:00 one morning (sadly, my cats did not).
2. Robert loves my husband’s waffles (and so do I – thanks, hon).
3. Robert likes animals! Our treasured Wiz (who passed away last summer) would lie next to the recliner Robert sat in when he visited. Wiz was sick himself but he always seemed to be protective of Robert when he came over. Robert never seemed to notice this gesture so I didn’t think he was much of an animal person. After two days of being around our Lab and Toy Pom and cats, Robert started talking about them and asking questions about them and laughing at their silly antics. Animals do wonders for the spirit.
Caregiver to two now! Navigating the aftermath of my husband, Richard, surviving a "widow maker" heart attack. Advocating for my disabled brother, Robert, who has intractable epilepsy and declares everything excellent. Witness of miracles. Co-author of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers book series and author of Forever a Caregiver. Full-time Legal Administrator and, oh, I had a stroke a few years ago. Writing to help other caregivers. Grateful for all of it.
Tuesday, May 31, 2011
9 Things I Learned About Robert (and myself) this Weekend
Friday, May 27, 2011
Common Sense
common sense
–noun
sound practical judgment that is independent of specialized knowledge, training, or the like; normal native intelligence.
There must be some odd phenomenon within an organization that does not allow for common sense. I didn’t study organizational psychology when I got my degree in psych but the psychology of a business has always fascinated me. It seems as if individuals can have common sense (not all, of course) but organizations or large collectives of people usually cannot (such as care facilities, to name just one example).
As you may have gathered from my previous post, I was a bit upset with New Home recently. They wanted to take Robert to an ER for a non-emergency x-ray and urinalysis. He has been experiencing some back pain, which I suspect is from sore muscles from his recent falls. I suggested he be seen by the New Home doctor and since his monthly check-up was just around the corner, agreed to wait for that.
The New Home doctor examined Robert and thought the pain was caused by sore muscles but suggested an x-ray and urinalysis to rule out anything more serious. New Home then told me Robert had to go the ER for an x-ray and lab work. I was told the reason was that the doctor affiliated with New Home didn’t have a lab or imaging center he was affiliated with and this somehow was related to Medi-Cal not reimbursing doctors as much as they used to. This didn’t make any sense to me. Unless they picked up the guy on the freeway off-ramp holding a sign, “Will work for food,” slapped a lab coat on him and called him doctor, I’m pretty sure the doctor can write an order which you can then take to a lab or imaging center. I did not see any reason to sit in an ER for non-emergency lab work and x-rays.
Yesterday, I pressed the issue further and higher up the chain of command. This time, I was told the reason Robert had to go to the ER (not for bashing his head this time, remember, but for an x-ray and pee test) was because New Home assumed he couldn’t pee in a cup and he would have to be catheterized.
Oh my god. Are you kidding me? Really?
–noun
sound practical judgment that is independent of specialized knowledge, training, or the like; normal native intelligence.
There must be some odd phenomenon within an organization that does not allow for common sense. I didn’t study organizational psychology when I got my degree in psych but the psychology of a business has always fascinated me. It seems as if individuals can have common sense (not all, of course) but organizations or large collectives of people usually cannot (such as care facilities, to name just one example).
As you may have gathered from my previous post, I was a bit upset with New Home recently. They wanted to take Robert to an ER for a non-emergency x-ray and urinalysis. He has been experiencing some back pain, which I suspect is from sore muscles from his recent falls. I suggested he be seen by the New Home doctor and since his monthly check-up was just around the corner, agreed to wait for that.
The New Home doctor examined Robert and thought the pain was caused by sore muscles but suggested an x-ray and urinalysis to rule out anything more serious. New Home then told me Robert had to go the ER for an x-ray and lab work. I was told the reason was that the doctor affiliated with New Home didn’t have a lab or imaging center he was affiliated with and this somehow was related to Medi-Cal not reimbursing doctors as much as they used to. This didn’t make any sense to me. Unless they picked up the guy on the freeway off-ramp holding a sign, “Will work for food,” slapped a lab coat on him and called him doctor, I’m pretty sure the doctor can write an order which you can then take to a lab or imaging center. I did not see any reason to sit in an ER for non-emergency lab work and x-rays.
Yesterday, I pressed the issue further and higher up the chain of command. This time, I was told the reason Robert had to go to the ER (not for bashing his head this time, remember, but for an x-ray and pee test) was because New Home assumed he couldn’t pee in a cup and he would have to be catheterized.
Oh my god. Are you kidding me? Really?
Labels:
care facility,
caregiver,
common sense,
communication,
epilepsy
Wednesday, May 25, 2011
Dear New Home:
Who decided it would be a good thing to treat the family of one of your residents as if they were someone to be patted on the head and told, "There, there. Don't worry your pretty little head about this."
Let's review events since move-in three months ago: You changed his medication schedule because it would be more convenient for you (and, oops! surprise! he had more seizures!). You called to change his neurologist appointment that had already been scheduled for six months (by me) because he was having more seizures and you needed to know why. (Um, see previous sentence). You tell me you encourage family visitation (sure! come over! take him out! he'll love it! we love family involvement!) and then require me to notify three people and sign a release (god forbid I bring him back later than when I told you I would). Now you tell me I can't arrange an x-ray for his sore back because that's your job (but then your solution is to make him miss Day Program and sit in an ER for the x-ray?).
NO.
You are not treating me as a partner in Robert's care. Instead of actually trying to help me care for Robert, you have been trying to wrestle control of him from me since he moved in. To what end? I understand you have state rules and regulations you have to follow. I understand they may be burdensome. I understand you have paperwork to fill out when Robert falls. I understand you want to keep him safe (cynically, I suspect, so you don't have to fill out more paperwork). I understand that, for many different reasons and due to many different situations, families are not always as involved in the care of their loved one as I am.
I. DON'T. CARE.
Let's review events since move-in three months ago: You changed his medication schedule because it would be more convenient for you (and, oops! surprise! he had more seizures!). You called to change his neurologist appointment that had already been scheduled for six months (by me) because he was having more seizures and you needed to know why. (Um, see previous sentence). You tell me you encourage family visitation (sure! come over! take him out! he'll love it! we love family involvement!) and then require me to notify three people and sign a release (god forbid I bring him back later than when I told you I would). Now you tell me I can't arrange an x-ray for his sore back because that's your job (but then your solution is to make him miss Day Program and sit in an ER for the x-ray?).
NO.
You are not treating me as a partner in Robert's care. Instead of actually trying to help me care for Robert, you have been trying to wrestle control of him from me since he moved in. To what end? I understand you have state rules and regulations you have to follow. I understand they may be burdensome. I understand you have paperwork to fill out when Robert falls. I understand you want to keep him safe (cynically, I suspect, so you don't have to fill out more paperwork). I understand that, for many different reasons and due to many different situations, families are not always as involved in the care of their loved one as I am.
I. DON'T. CARE.
Friday, May 20, 2011
Saturday Smiles
I’d like to give you a list of five people who just might restore your faith in humanity and what better day to do that than when the world is supposed to come to an end?
Doesn’t it feel great when someone does or says something that may seem like nothing to them but has such a huge impact on us? Whenever that happens, it doesn’t always make me a more thoughtful (or quiet) person but it is a nice reminder and makes me try to be mindful of the things coming out of my mouth. I remind myself, too, that I can either focus on what really irritates me (and believe me, my list is long!) or I can focus on examples of good, caring people who make the world a better place (and, no, I’m not talking about the person who greets me by name at the local coffee shop although, I admit, I’m a sucker for that). What the heck, we’ll make this a list of six people instead of five.
1. Friendly baristas. A person being nice to me while keeping me caffeinated? What’s not to love?
2. Stranger in the Mall. Robert, Hubby and I and some of Robert’s friends from Day Program were at a local mall cruising along at a speed you might expect from a group using walkers and wheelchairs. A woman pushing a stroller walked quickly by Robert who tripped at the exact moment she passed us. I, of course, thought he would fall and land on her baby, traumatizing the little bundle of joy and ending all of our future trips to the mall (please note I had to rewrite that sentence so the priority was the baby. My initial priority was future trips to the mall – I may have a shopping problem.). Anyway, I grabbed Robert’s arm to steady him and Hubby steadied him from the rear and Robert remained upright. I thought all was well until the woman with the stroller stopped to talk to the Day Program Aide a few feet ahead of us. Was she complaining about Robert almost falling on her precious cargo? Was she telling the Aide these people with helmets and wheelchairs and walkers should watch where they are going? No. She was apologizing because she thought she had startled Robert enough to cause him to trip.
I need to stop assuming the worst in people.
Doesn’t it feel great when someone does or says something that may seem like nothing to them but has such a huge impact on us? Whenever that happens, it doesn’t always make me a more thoughtful (or quiet) person but it is a nice reminder and makes me try to be mindful of the things coming out of my mouth. I remind myself, too, that I can either focus on what really irritates me (and believe me, my list is long!) or I can focus on examples of good, caring people who make the world a better place (and, no, I’m not talking about the person who greets me by name at the local coffee shop although, I admit, I’m a sucker for that). What the heck, we’ll make this a list of six people instead of five.
1. Friendly baristas. A person being nice to me while keeping me caffeinated? What’s not to love?
2. Stranger in the Mall. Robert, Hubby and I and some of Robert’s friends from Day Program were at a local mall cruising along at a speed you might expect from a group using walkers and wheelchairs. A woman pushing a stroller walked quickly by Robert who tripped at the exact moment she passed us. I, of course, thought he would fall and land on her baby, traumatizing the little bundle of joy and ending all of our future trips to the mall (please note I had to rewrite that sentence so the priority was the baby. My initial priority was future trips to the mall – I may have a shopping problem.). Anyway, I grabbed Robert’s arm to steady him and Hubby steadied him from the rear and Robert remained upright. I thought all was well until the woman with the stroller stopped to talk to the Day Program Aide a few feet ahead of us. Was she complaining about Robert almost falling on her precious cargo? Was she telling the Aide these people with helmets and wheelchairs and walkers should watch where they are going? No. She was apologizing because she thought she had startled Robert enough to cause him to trip.
I need to stop assuming the worst in people.
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