Tuesday, May 31, 2011

9 Things I Learned About Robert (and myself) this Weekend

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.

Friday, May 27, 2011

Common Sense

common sense 


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?

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?).


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.


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.

Wednesday, May 18, 2011

We're Not Alone

I think what bothers me most about Robert asking “what is a kite?” or not remembering the name of his roommate is that it is such a dramatic change. It’s a splash of cold water on my face; it’s a reminder that there is a decline going on.

People deal with this sort of change in behavior with their loved ones all the time. 30 million people worldwide have Alzheimer’s Disease. Three million people in the United States have Epilepsy (although not all people with Epilepsy have uncontrolled seizures to the degree Robert does). Not to mention all the other conditions that can cause memory loss or dementia. These people have families or friends who are caregivers (not all, but many).

That’s a lot of patients. That’s a lot of caregivers.

As caregivers we have to be prepared for the “new normal” which can change infrequently or be as dramatic as daily. Robert not knowing what a kite is was a pretty drastic change for me. Somehow, his incontinence is not. It’s probably because there was a gradual onset to this behavior. First, he had accidents when he slept. Then he had accidents during the daytime. It crept up on me and just became something else to manage. It’s “normal” to me now that he wears briefs at all times (and, we’re trying something new: two briefs at nighttime which seems to keep him a bit dryer!).

Maybe the physical changes are easier for me to accept. Robert uses a walker and I’ve accepted the fact he will eventually end up in a wheelchair. Robert walked unassisted up until a few years ago but I see the problem he has walking and keeping his balance and accept that as the normal consequences of years and years of seizure activity. Robert is pretty slow to respond in conversations or when it’s his turn to play cards (and I have to adjust from hyper-speed while at work to his much slower pace when I’m visiting). I expect this. It does not throw me for a loop when he’s slow. I know he’s slow; he’s had years of electrical activity in his brain and is on enough medications to put down a horse. I accept this.

The intellectual and memory decline affect me more and are more difficult to accept. I think it bothers Robert, too. His tone of voice when asking me “what’s his name?” makes it seem like he is a bit worried about not knowing. I think he realizes he used to know the answer. People caring for their loved one affected by Alzheimer’s Disease watch this decline all the time and it’s not easy. To care for your mom or husband and not have them recognize you is nothing short of brutal. The people I know going through this are strong and tough even though they are hurting. These people watch the decline in their loved one while secretly wishing they could experience a bit of mothering (“are you okay, honey?”) or have their husband know that the person caring for him is his bride of thirty years.

There may come a day when Robert doesn’t remember his family (heck, he already calls my step-son “Steve” which isn’t even close to his actual name). One day, I may just be the nice lady who visits him but who is a terrible card player. I am okay with that (except the card playing part. I really should practice more).

I don’t know how he’ll pull it off but I have a sneaking suspicion Robert’s mental decline will not affect his card game even if he doesn’t know who I am!

Friday, May 13, 2011

Let's Fly a Kite

Yesterday, Robert told me he went to the park with Day Program. He loves going to the park and, over the last few weeks, has told me about eating lunch there and flying kites. A while ago, he told me his kite went “way, way high in the sky.” I told the Day Program counselor how much Robert enjoyed flying the kites and he told me he had difficulty getting Robert to let go of the kite he was enjoying it so much!

Robert told me about his most recent trip. “We went to the park. The guy set up a . . .uh, uh,” Robert searched for the word. Umbrella, I offered?

“Yes, umbrella. Thank you.”

No problem. Did you sit under the umbrella and eat lunch?

“No. It went up high in the sky.”

Oh. You mean it was a kite? Did you fly a kite again?


“What’s a kite?”

It takes my breath away when Robert doesn’t know about things he has always known and still knew a week ago.

His voice is different when he asks this. His voice was different a couple of weeks ago when he asked what his roommate’s name is. I think he knows when his brain is not working quite right and he knows he should know this. I suspect he realizes he used to know this.

A kite is a thing attached to a string that someone holds and then lets it fly way up in the sky.

“Yes, it was a kite. Thank you for telling me.”

Still, that same voice.

It’s been haunting me since yesterday.

Wednesday, May 11, 2011

What Does Robert Want?

Does Robert want to use a wheelchair so he is less likely to fall and crack his head open?

After New Home suggested it, I was so busy being opposed to the idea while secretly weighing the pros and cons of the question and considering how being in a wheelchair would affect his long-term ability to walk and wondering whether or not it was too soon to make him use a wheelchair or thinking that maybe I was too late in making him use a wheelchair that I . . . neglected to ask Robert what he wanted. Oops!

This isn’t completely surprising, though, since I do tend to hit a “9” on the Control Freak scale with “10” being a seriously out of control, completely unreasonable Control Freak. Which I am not. At all. Not even close. (Please ignore Hubby in the background screaming “15”).

The brunch on Mother’s Day has really made me rethink my adamant opposition to the wheelchair idea.

Sunday, May 8, 2011

Happy Mother's Day

Mother’s Day is a wonderful celebration of Moms. Whether it is going out to a brunch buffet with your family (which I am doing today) or your kids bringing you breakfast in bed (which mine have done many times in years past) or calling your grandmother who lives a few hours away (which I will do later today), it is a day to pamper Mom and reflect on what Mom means to you.

It’s a day to give your Mom a hug and tell her how much she means to you. Yes, even if she nags you sometimes! (Which, of course, I never do . . .).

Mother’s Day can also have difficult moments for those who have lost their Mom. Other Brother, Robert and I lost our Mom almost twelve years ago and we still think about her and miss her. She wasn’t perfect (because, really, who can be a perfect Mom?) but there’s no one like Mom.

Saturday, May 7, 2011

Weighing the Risks

It has been just over a week since Robert got six staples in his head after falling during a seizure (and that was with his helmet ON!). It actually took longer than I expected but the New Home would now like Robert to use his wheelchair at all times (apparently, they didn’t get wind of the doctor’s bubble wrap idea so are going with a conventional solution).

Our family has been trying to balance Robert’s independence with his safety for most of his 45 years. We have always leaned toward independence over safety which means sometimes Robert gets hurt.

It is certainly a balance we struggle with. I would prefer Robert be both independent and safe but his abilities change (daily, it seems) which means we have to adapt and constantly weigh the risks of what he can safely do. It does not mean we are evil, neglectful, irresponsible or thoughtless. No matter who says we are.

Wednesday, May 4, 2011

Little Robbie

Before Robert was “Robert,” he was Little Robbie and Little Robbie was a little terror! I even wrote in my diary once that I didn’t like him (yes, there were such things as “diaries” and “pens” before Facebook). I was probably ten and knew everything and he was five and couldn’t sit still. He loved to destroy things; he wouldn’t listen to me; he got lost in every store we visited. Curly hair with round cheeks and a stocky build to go with them; blessed with dimples just like Other Brother and me.

At ten, I didn’t have the patience for him. I pulled out my treasured diary one day, took the tiny key out of its hiding place (long since forgotten although Other Brother may remember as I’m sure he sneaked a peek at it occasionally) and unlocked the book holding all of my deepest secrets (like which boy I had a crush on that second and how much I LOVED John Travolta and Peter Frampton).

“I don’t like Robbie. I don’t know why. I know I should love him but most of the time I don’t.”

Ugh. Brutal. Since I’m so good with guilt, it still stings a bit when I think about it.

I think about that little guy and know that I loved him in spite of him being a typical annoying little brother. And in spite of him having this strange thing called "Epilepsy."

He must have expended most of his energy in those early days because he moves pretty slowly now (unless he’s pushing his walker downhill, then he picks up some speed!). He’s grown up into a polite man who didn’t have the same shot at life that most of the rest of us do but who makes the most of his days and who probably lives in the moment far better than anyone I know.

He plows through his Word Search puzzles with the same intense concentration that I have when working on the Budget at work. Robert continues to shave and brush his hair and dress himself even though it takes him ten times as long as any of us (although it does take me a while to choose which shoes I’ll be wearing for the day).

Robert does not get discouraged. He perseveres through seizures and trips to the hospital and people staring at him because he wears a helmet. He only shows his stubbornness when he isn’t allowed to do something he thinks he should be able to do (like standing up to close a bus window while it is moving).

Robert enjoys simple activities like going to the park and flying kites. He recently went with Day Program to the park and they flew kites. That night, Robert told me when he flew the kite it went “way up high. Way, way up high. I mean, it really went way up there!” There was a flash of Little Robbie when he told me about flying that kite. The excitement, the newness of an experience, the pure joy of accomplishing something. Day Program shared with me that they had a hard time getting the kite back from Robert since he was enjoying it so much!

I didn’t have patience for Little Robbie but Robert teaches me patience now (it’s sometimes difficult for me to transition from “work speed” to “Robert speed”). He flashes his dimples when I visit and gives me a smirk when he’s won yet another card game. Obviously, he doesn’t hold grudges either.

Either that or he didn’t read my diary.

Monday, May 2, 2011

Caring for the Caregiver

When I became more involved in Robert’s care, I didn’t consider myself a “caregiver.” I thought that term was reserved for people making room in their home to care for their elderly parents. Boy is that wrong!

One out of every five households are involved in caring for someone aged 18 years or older (and those stats don’t even include the parents caring for a sick or disabled child).

Caregiving comes in all shapes and sizes. It can be a mom caring for her terminally ill daughter who spends weeks in and out of hospitals. It is a woman caring for her husband in their home after thirty years of being soul mates. It is a son arranging care for his father who lives three hours away so his dad can continue to live in his “forever” home. It is a wife and children blindsided by their patriarch’s cancer and ensuring his comfort to the end. It is a daughter and her husband and children making room in their home to provide loving care for her mom who is living with Dementia. It is a son keeping track of medications and doctor appointments after his mom suffered a stroke so she can live independently. It is a sister advocating for her disabled brother so he can live a happy and fulfilled life even with his deteriorating cognitive and physical abilities.

Even though Robert doesn’t live with me, there’s still a lot to do to take care of him (aside from the obvious of finding him a home and a day program): making sure he is well stocked with his personal supplies (7-Up, shaving crème, toothpaste, razors – yes, that is in order of priority!); trying out different protective briefs so he can stay dry at night and during the day; keeping a detailed log of personal expenses (I am his “Representative Payee” and need to report expenditures to Social Security); working with him on behavior issues (repeat after me: no standing on the bus while it’s moving even if it is to close a window); teaching New Home to communicate; dealing with seizures and falls and staples and hospital visits; taking him to doctor appointments; shopping with him for presents for the nieces and nephews; even renewing his ID at the always enjoyable DMV.

Playing cards with Robert sometimes even gets put on the “to do” list instead of something I’m doing for fun. (Don’t judge. I’m just being honest.)

Caregivers tend to neglect their own health with one study even showing that women caregivers are six times as likely to suffer from depression or anxiety than their non-caregiving counterparts.

Support groups are a wonderful resource for caregivers. Because caregiving can be an exercise in isolation, the internet can be a valuable tool. An online caregiving community which has proved to be very helpful and supportive to me and several others can be found at www.caregiving.com. Other helpful resources are Today’s Caregiver at www.caregiver.com, The Family Caregiver Alliance (www.caregiver.org) as well as the National Family Caregivers Association (www.nfcacares.org).

Caring for yourself is as important as caring for your loved one. If you need more assistance than what is briefly mentioned here, please let me know in the comment section and I’ll see what other resources may be of help to you.

Be good to yourself. You deserve it.