A New Bed for Lauren

October 28, 2010

Last June when Lauren was in the hospital, I was surprised to realize what a convenience the flexibility of a hospital bed was when caring for Lauren. She has always slept in a daybed-type twin bed. This style of bed allowed us to add a fourth "side” (which we made ourselves) at night to make sure that she could not roll out. But it did not offer any positioning options and when necessary, we did what we needed to do by adding pillows in order to raise her head or support her in some way. This wasn’t always the easiest or most successful solution.

Truthfully, I hadn’t even thought of getting her a hospital bed. Last June was the first time she had been in a hospital bed since she had grown into an adult. It was obvious that, although we didn’t need to offer her more positioning options every day, when we did need options, a hospital bed was the easiest and most flexible way to go. A hospital bed would also make it easier for her other caregivers to meet, not only her care needs, but her positioning needs. This will be important when she moves into her own home.

I knew that a home model would not be the fancy, shmancy, totally electric model that we had used in the hospital. It would be a bare bones basic model – how ugly was this going to be? Lauren’s bed is pretty. It is yellow with  flowers and ribbons painted on it. Of course, how it would look wasn’t the only issue. The mattresses offered for the home model were either horrible, thin and not supportive, or simply not appropriate. Lauren would need good support, especially with her scoliosis and kyphosis. And, what about the bed rails? Would they be sufficient for her to be safe?

Needless to say, you can tell it’s taken me awhile to work this all out since it is now four days before the first of November. I had the durable medical supplier deliver a bed today – just the frame with the rails. I’m putting Lauren’s existing twin size mattress on the hospital bed frame. I wasn’t sure it would work – but it does. The mattress is too short but will do until we purchase an extra-long twin mattress – it was time to replace hers anyway. Both the headboard and the rails are rather low. I can visualize a solution to the low headboard – adding an extension, but I’m not sure what to do about the rails. They’re not terrible. They just don’t inspire confidence – do you know what I mean? I have to think about it some more. Maybe get some suggestions from her caregivers and her therapist. By the time I added her bedding and some pretty pillows it wasn’t too terribly ugly…..maybe I could paint some flowers on it.
The "pretty" bed

Incontinence Product Update

October 26, 2010

Back in August I told you about finally getting my act together and contacting a durable medical supplier in order to access Medicaid-funded incontinence products. Well, I received a call on Friday – two months later – that Lauren has been approved to receive these products and that the supplier would be placing an order.

I figure it costs about $40 a week for the products Lauren currently uses. That comes to $170 a month. That amount of money will mean a lot to her, and us, when she moves out on her own next year. I am concerned, though, that the Medicaid approved products will not offer her the same protection as we are able to achieve with her current products. Time will tell.

Carry On Turtle

October 22, 2010

I recently walked into a garden/antique shop and found myself in the midst of, at least fifty, turtle garden ornaments. They weren’t just your ordinary precast concrete turtles; no these were handmade with their shells inlaid with stones. If you’re a regular reader of this blog you know about Lauren’s attachment to Mr. Turtle and her turtle collection. Wouldn’t one of them look great on the front porch of Lauren’s new home? I had to have one for her. The only problem was that I was over 2,000 miles from home and had to get on a plane to fly back there the next day. OK. Carry-on!

I selected the most appealing turtle and bent down to pick up my prize only to find out.... that I couldn’t pick it up. It was REALLY heavy. Mmmm. I’ll need to get the smaller size – still cute! I wrapped him in some paper, put him in a double-bagged shopping bag, and off to the airport we went. I wondered if he contained anything that would cause a red flag at security, but really, he should be fine.

I piled all of my carry-ons into gray plastic bins, and walked through the scanner without bells or buzzers going off. Shoeless, I stood waiting for my belongings to come out the other end of their scanning when the guard paused, looked at me and said, “Is that a turtle?”

Uh, oh. I affirmed her query.

“I was just curious,” she said, and went back to her scanning.

I slipped on my shoes, picked up my turtle, and proceeded to the gate. Lauren’s new turtle had passed security and was soon flying, far from his home, to a new life on the front porch of a young woman beginning a new life of her own.

Lifelong Learning

October 13, 2010

I taught my father to use a cell phone last year. He’s eighty-seven. He grew up with an outdoor privy, listening to the Lone Ranger and Green Hornet on the radio, and walked ten miles through the snow to school each day (I was never sure that part wasn’t exaggerated). Telephones back then were black and attached to the wall. Now he has a phone with a “screen” and multi-functions. He wanted to know how the time on the phone could always be exactly correct and how that lady who answered my cell phone occasionally knew that I wasn’t available. His learning curve was steep, but he’s doing well with it now. He’s also learned to cook, clean, and do the grocery shopping, all chores that were exclusively performed by my mother. She is no longer able to do these things, and he has filled in the gap in their lives. Apparently, we don’t stop learning when we turn twenty-one.

When children with developmental disabilities leave their federally mandated schooling at twenty-one, they usually have no real opportunity to continue their education or access learning opportunities. Often, it feels like some invisible switch is flipped, and all expectations that individuals will learn something new or improve upon their current abilities cease. But none of us stop learning just because of our age. We do stop learning when we ourselves, or others, have no interest or expectations for change. When you’re dependent on others to facilitate your learning, and those people give up on you, your personal possibilities are unrealized.

I have expectations for Lauren. I am hopeful that Lauren will one day develop at least some minimal ability to communicate using pictures. I know that someday she’ll figure out that she can hold more that Mr. Turtles’s yellow string in those long thin fingers. I believe that the extent of her inabilities is in direct proportion to the extent of our own inadequacies to help her. Is it always easy to “keep the faith”? No, but last week Lauren taught me something. “Don’t doubt me, Mom.”

In an effort to find something new to amuse her, I put an audiobook version of Little Women on her mp3. It’s kind of a long book with many characters, which takes place around the time of the Civil War. She wouldn’t be able to follow the plot, but maybe the cadence of someone reading to her would be a nice change from the music to which she usually listens. And, she did seem to be enjoying it. She sat quietly content as the lives of Meg, Jo, Beth, and Amy played out. Suddenly, she got very vocal, a complaining tone calling me closer. Was she tired of it? Did the battery run low? I walked over and checked the mp3. The problem was that the book had ended. She was actually following the plot. She was telling me that chapter one had started all over again. “Been there, done that, Mom.” She needed a new book, a new story, a new opportunity to expand the narrow walls that confine her life.

Hiring delay....over

October 14, 2010

Well, all’s well that ends well, I guess. We received approval for C to start her job with us midday on Tuesday. What no one told me on Friday, was that both the state offices and the fiscal intermediary were closed for Columbus Day. So, we lost twenty-four hours, but I was able to juggle funding and get C working on Monday in order for us to get two complete shifts in before I had to leave. Fortunately, C is doing a great job already and Lauren really likes her. Crisis averted!

Never one to miss a chance to complain – let me share another facet of the hiring process that caused significant consternation in the last week. I received a certified letter from the fiscal intermediary saying that C was not approved for any position that required driving because of her driver history. There was no explanation of what that meant. When C filled out her driver history form there was no mention of accidents or tickets. So, what does that mean? Did she lie on the form or did the fiscal intermediary make a mistake? I contacted the FI and they said that her history revealed three or more infractions in the past three years, but couldn’t tell me anymore because of privacy issues. I asked C about it and she swore that her history was clear. And….she was very upset. So, upset that she called the FI over, and over, and over again over the course of three days. When they finally called her back, she shared with them that she had, at her own expense, obtained a copy of her driving history. It showed: an accident in which someone drove in to the back of her car, a ticket for her license plate holder partially obscuring the plate, and something about insurance regarding a change from one company to another. Now, how does any of that indicate that she is an unsafe driver? Did they discuss the driver history with her before they made their determination? No. If I had depended on the FIs determination, I may not have hired her because her inability to drive would impact Lauren’s ability to participate in activities.

At a time when it is so difficult to find competent caregivers, it is irresponsible to make inaccurate or inappropriate determinations that could affect the hiring of a perfectly suitable candidate. The FIs handling of this made me question my trust in C and could have cost us a caregiver who is working out beautifully. Just as I want to depend on the background checks and testing that is done to weed out unsuitable hires, I want to depend on those same things not to cost Lauren a perfectly qualified hire.

Hiring Delays

October 11, 2010

A few weeks ago I shared with you the relief that I felt over being able to hire, so quickly, a replacement for our second shift caregiver. Quickly is the operative word here, because I still haven’t been able to allow her to start working in that position. Why? Paperwork! We hired her for this position exactly three weeks today. She scheduled her drug testing and fingerprinting on that same day. She had to wait two weeks to get her fingerprinting appointment. The fiscal intermediary said that as long as they had the receipts for all of her testing, she could start. But, it wasn’t as simple as that. I emailed the receipt into the appropriate person, who then handed it off to another person, who then had to send it to the support coordinator who is with another agency. Fortunately, all of those people were in their offices, if they hadn’t been, this would be taking even longer. The support coordinator then had to make a revision to Lauren’s budget and send it to our DDD case manager who has to sign off on it. That hasn’t happened yet. I fully support and appreciate the security of the testing that needs to take place when hiring a stranger, but isn’t all of this waiting a little ridiculous since the new hire, C, has already been working with Lauren as a substitute, is filling a position that has already been approved, and is working for another provider who just had her do the same fingerprinting and drug testing for her position there? It just defies logic.

Maybe I wouldn’t be as stressed with this process if I wasn’t in such a tight spot time-wise. You see, I’m leaving in two days. My husband and I planned a trip a few years ago that we had dreamed about for over twenty years. Then I got sick right before we had to leave. We had to cancel the trip. It’s taken four years for us to be able to reschedule. I thought we were going to have to cancel again when I had to terminate L, but then C agreed to take the position. Usually I would not be comfortable leaving a new hire for at least two to three months. But since C is already a trained caregiver, she only needs to learn the “Lauren details”. Fortunately, I’ve been able to give her some hours under our other funding (Personal Preference). But it hasn’t been enough. If I can just get her working today and tomorrow – full shifts – I think I can go away content and comfortable. But that means I need to get approval in the next few hours.

Back to my original point, it should not take three weeks to get a new caregiver started. We’re not talking about working at WalMart here. We’re talking about providing the support that enables a person with disabilities to survive. Plus, it’s hard enough to find a caregiver without risking losing them because of these delays. Fingerprinting appointments in other areas of the state are taking over three weeks to schedule. I know of one family who has lost a hire because of the wait – there are probably more. We need to streamline and improve this process. Fingerprinting and drug testing results should be shared between agencies – maybe save the state some money? Testing centers should be held to requirements for timely processing and scheduling. And, we need to seriously explore extending the choices inherent in self-direction to include choices in how individuals manage staff. Under Personal Preference, Lauren is the employer of record for her staff – she makes the decisions about who to test, what to test, and when they start. Under Real Life Choices, the fiscal intermediary is the employer of record – they set the rules. We need to give individuals who are hiring people to handle their bodies and support them in their struggles to lead meaningful lives, to make the choices that meet their needs. I need to know that when Lauren is living in her own home, that she will be able to not only hire qualified caregivers, but can also do so in a timely manner which will ensure her safety and stability.

Chasing a Phenomenon

October 7, 2010

I was watching an interview with J.K Rowling, of Harry Potter fame, the other day. Now that she has announced that the series is over and that she will not be writing any other Harry Potter books, she said that she is being asked, “What will you do next? How will you top this?” Harry Potter became such a media and commercial success that he, and the woman who created him, became something of a phenomenon. Ms. Rowling intends not to let Harry Potter define who she is. She says that she will put no pressure on herself to match or succeed her past success. That chasing a phenomenon is neither healthy, nor necessary.

I’ve been thinking a lot about what the next step in my life will be. Raising Lauren was an all consuming adventure that took on a life of its own, while chewing up the plans I had for my own life and routinely spitting them out unrealized. Now that Lauren will be moving into her own home, there will soon be a greater degree of freedom....and uncertainty... around the direction of the remaining years in my life. For many years I’ve been afraid or unable to think about my own dreams and hopes, but have supplanted them with the all encompassing needs of Lauren. Not that I won’t still be very involved with her life, and won’t still consider myself to be her caregiver, but the very fact that we will not be sleeping under that same roof, having breakfast together every morning, and one ear will not always be trained to any sound of distress, is a significant departure from the norm of my life in the last twenty-five years.

Raising Lauren has been something of a phenomenon in my life. I did not have an inkling when I began what I was getting into, what a huge impact her life would have on my own, nor did I know how I would change, grow, and learn so much from the experience. I have written often about how the future was a scary place for me because I did not know where or how Lauren would live as an adult. With the plans we have now been able to put into play, I do not have that continual sense of dread always lurking in the back of my mind. This feels right. So, never one to miss an opportunity, I began to fear my own future without the need to provide Lauren’s daily care. I’m slowly realizing that I don’t have to be anything. I don’t have to accomplish anything more. What I have done is enough to define my life, to have had success, to have left a positive, worthwhile mark in this world. I am trying to be open to whatever the next phase of my life will hold, and I know that I will be more open than I ever could have been, without the experience of raising Lauren.

Aging Caregivers - A Close Look at the Future

October 5, 2010

My knees are sagging. I noticed this today while bending over to stretch out the gnawing ache in my lower back. There they were, semicircular wrinkles- from my vantage point- frowning back at me. I suppose that if I’d look straight on at them in a mirror I could turn that frown upside down. But, no, I was hanging upside down and those knees were definitely headed south. When did that happen? Oh, Lord, I wonder what else has surrendered to the unrelenting pull of gravity. See, this is why we’re supposed to become far-sighted before the sagging and bagging gets too serious. Unfortunately, I’m near-sighted. I just don’t want to see the affects of time up close anymore. I don’t want baggy knees staring me in the face. Age should come with the luxury of having a choice about what you have to look at too closely.

Whether our age is staring us in the face, or whether some other evidence that the sneaky harbingers of old age have brushed up against some other part of us; we are assured that aging is inevitable. That point was clearly presented during a conference I attended last week. The conference was on the effects of aging on individuals with development disabilities and the effects of aging on caregivers. It is critical to recognize that each one has a significant impact on the other. The dearth of services to bridge the gap between the increasing needs of individuals with developmental disabilities and the decreasing ability to provide care of their caregivers is a rapidly growing concern. I learned that there are over 4.7 million people with developmental disabilities in our country and sixty percent of them live with their families. Sixty percent of those 2.8 million individuals are cared for by family caregivers over the age of forty. Twenty-five percent are over the age of sixty. Do the math – that is 705,000 individuals who, are or who will imminently be, in need of an alternative residential option, a place to live that will be safe, practical, and reflect the wishes of the family who can no longer be primary caregiver.

I go to meetings and conferences all of the time where new theories, strategies, and ideas are presented on how services should be provided   But the reality is, you can’t improve something that doesn’t exist. You don’t have to be a whiz at math to know that if your child’s number on the waiting list is four or more digits – their name is never going to get to the top of that list. No, before that ever happens they will be on a new list – one with emergency in the title.  But isn’t that an oxymoron – emergency waiting list?  Way too many aging caregivers have no choice, but to see much too clearly for comfort, that the future will be a scary place for their loved one.