Surrounded by Bears

April 29, 2010

The other day I did something a little nutty and thought, “Wow, is this not a metaphor for caring for Lauren?” “Bear” with me while I put things in context.

We live in a beautiful country setting in an area of New Jersey that has an ever growing population of bears. I’ve lived here for forty- two years but I did not see my first bear until about ten years ago and it was several years before I saw another one. Controversy is thick and messy now about what to do about the rapidly increasing threat to life and property that the bears represent. No one wants to see these beautiful creatures harmed but the “they were here first” argument doesn’t really stick in an area that didn’t have to support bears until recently.

My close encounters with bears started only this month when I found that one had been up on my deck and destroyed the little bird feeder that I have there so that I can watch the birds while I feed Lauren. This, probably three hundred pounds plus, bruin actually left nose prints on the window. Scary, huh. Well, now I’m a bit rattled about being out on our property alone. We’re surrounded by woods and there are no houses within “hollerin” distance. I like to walk down to the mailbox on a nice day and get some exercise. Round trip takes about fifteen minutes. I didn’t want to give up this little pleasure because of a bear...but I’d need to protect myself, right? What can I do? What can I do?

Alright, don’t laugh but I grabbed a broom, one of those bright blue handle, sunshine yellow angle bristles, weighs all of about eight ounces, models. So, picture me walking down our lonely, lengthy driveway carrying my weapon. Ineffective – yeah, rather. A delaying tactic – hopefully. Will the colors distract my attacker? Unless bears are color blind. But, I couldn’t think of anything else to do. I was doing the best that I could with what I had to work with.

Isn’t that how I’ve been caring for Lauren as well? I do the best that I can knowing in the long run how ineffective the plans I have been able to make for her will truly be. In a crisis, the life that she is now living will fall apart before too long. Is what I am doing right now only a delaying tactic? Yes, and that’s OK.....for now. But just as I need to find something more effective to protect myself from a bear encounter, I need to find a more effective answer to planning for Lauren’s future. There are so many distractions - the economy, competing social problems, and a lack of understanding of the urgent need - that are preventing the development of respectful and sensible answers to caring for all of the Laurens that are residents of our communities. But they are only distractions. They will not prevent the inevitable from happening. The numbers of individuals with developmental disabilities are ever increasing and there are no concrete plans to meet their needs. I, at least, have my broom (current services) that is allowing me to protect and care for Lauren ....for now. Most families have little or nothing to ward off the threats that each day, let alone the future, holds for their loved one. They are surrounded by “bears” and their pleas for help go unheard.

Questions for Lauren - Post Seizure

April 27, 2010

I have so many questions that you cannot answer. I sit here with you and watch you sleep, quiet and peaceful after yet another seizure. What does a seizure feel like? Do you have a headache? Is your stomach upset? Is that why you won’t eat? Are you sad, tired, confused? Sometimes your eyes seem to say “What was that?” or I fear they say, “Why did you do that to me?” As if it was I who snuck up on you and tried to cause you harm. You seem so devastatingly tired. Terribly pale, you open your eyes only to let your heavy lids drift close as if it just takes too much energy to keep them open.

What is going on? Why have your seizures more that doubled in the last month? You’ve had one on each of the last two mornings. I’ve called the doctor. He wants me to increase your medication. Is that the right thing to do? Do you need more of the medication that you have been on for so many years? Or, is something else causing this increase in seizure activity?  Is the change in schedules and caregivers lately causing these seizures? Is the change of the seasons affecting some biological clock that is having trouble resetting itself? You seem to welcome new experiences and people into your life. Yet it often seems that changes cause seizures. Remember when we all went to the shore a few years ago? You had four seizures that week. Now, we’re afraid to take you on vacation. New sights, new smells, new surroundings – they’re something we want to give you, but will we do you injury?

The noise that you fill our home with often makes it hard to think. But the quiet that lingers now makes it all too easy to think, to worry, to wonder. How much do you understand? What can I do to make you feel better? I did some shopping today. I found a Mother’s Day present for Grandma. I wanted to bring you something, anything, to cheer you, make you smile. But material things hold no favor with you, and a treat would not impress you right now. So I end up buying something that I want you to have – a bright pink shirt. It looks happy, even if you are not.

You know that I love you, right? I used to hold you, cuddle you in my lap when you were small. I would hold you and rock for hours. I wish I could pick you up, let you rest your tired head on my shoulder, let you feel my arms hold you safe. But I have to content myself with stroking your cheek and planting a soft kiss there. Your eyes flicker open but they do not smile. Neither do mine. I wish I could spare you these unpredictable storms that leave you washed out and struggling to recover. But I cannot. All I can really do is try to make you comfortable, let you rest, and hope that I know the correct answer to at least one unanswered question – you know that I love you, right?

It's a Mom Thing

April 22, 2010

We have hired someone to fill the vacant caregiver position. Unfortunately, we will have to wait over three weeks before she can start. The fiscal intermediary requires a background check, fingerprinting, and drug testing. It’s a very good idea. Nothing is foolproof, but it does give you a layer of comfort about the person you are entrusting with your child’s care. New Jersey has contracted with a company to perform the fingerprinting and background check duties. They have an office in a neighboring town. But, they are only open two days a week. So the new hire had to wait two weeks to get an appointment. It then takes another week before the results are ready. The next closest fingerprinting office is located over an hour away. So that means we will have to probably wait until the second week in May before this new caregiver can start.

Of course, this all affects Lauren’s level of care even though we do the best that we can. I feel a bit guilty that I’m skipping some of Lauren’s exercise routines and just don’t have enough energy to provide the interaction and care that Lauren is used to in the evening. After putting in a full day at my usual activities, I’m slowing down about the time that Lauren is getting her second wind. Add onto that the fact that the second shift is the most physically demanding one, and I know that I’m going to be really thankful when we’re finally able to get our new caregiver started.

On the other hand, we’re spending more time just hanging out than we usually do. So, that means that I will get to feel guilty about something else when the new caregiver does take over. Lauren will probably miss the added time spent with Mom. I know that we need to have the level of caregiving assistance that we do to support Lauren’s extensive needs and my waning ability to provide her care 24/7.  But, I will probably always feel guilty that I just can’t provide all the care that she needs myself. I guess that’s just a Mom thing.

When Fears Become Reality

April 19, 2010

Over the last week I’ve been trying to get my preoccupation with Lauren’s future under control. I can’t seem to stop myself from bringing some aspect of my fears into almost every conversation with my husband, my friends, the checker at the grocery store, and most fervently, with God. I’m obsessed. I’ve had many stern discussions with myself regarding worrying about a future that I have no real control over and allowing my present to be so negatively affected by my concerns. I want to loosen my hold on the anvil of dread that prevents me from enjoying today, from seeing the blessings in my life, from completing a positive thought without a negative reminder to not be too happy less my fall back to reality be too hard. ....And, then I pulled my Sunday paper out of its bright yellow plastic bag. The headline told the story of a young woman named Tara, who had no family members to provide her care, who was put in the care of strangers, who died from lack of care. My greatest fears realized.

Now I have a name, a face, an all too real example of what could very well happen to Lauren. At twenty-eight years of age, Tara weighed just forty-eight pounds. Lauren has issues with eating. She doesn’t chew. She does not feed herself. She needs specially prepared meals. I cook the things that she likes, things whose taste and texture are still appealing when pureed or mashed. I make sure her diet is balanced, healthy, and that she eats enough. Who will make this a priority when I cannot? Lauren does not always want to eat. The seizures either upset her stomach or affect her appetite, I’m not sure which, but it is frequently a struggle to get her to eat for days after a seizure. Who will sit with her, cajole her, make an effort to get her to eat? And, eating is pretty much the one thing that Lauren can control in her life. I think that sometimes, she uses refusing to eat as a means to communicate. Who will understand and seek out what Lauren is trying to say?

Tara was brought by a caseworker to visit a relative, dirty, thin, and wearing her shoes on the wrong feet. I insist that Lauren always be clean, well-dressed, hair styled attractively. Her clothes are simple and pretty. She wears perfume. She has many decorative clips and pins to control her dark curls. Who will make sure that Lauren is clean and presentable if I cannot? Tara’s room was reported to “reek of urine”. Lauren sleeps in a canopied bed with a flowered coverlet, her turtle collection watches over her, a pristine white carpet covers her floor. Who will make sure Lauren lives in comfort and safety?

Do we hear stories like this often? Thankfully, no. But isn’t one, just one too many? Do I think there are other Tara’s out there who are not being properly cared for and protected? Absolutely. State case managers have huge caseloads. They cannot possibly know what is going on the lives of all the individuals they are supposed to oversee and protect. In self-direction, support coordinators must now visit each individual on their caseload once a quarter. The directive is that they must visit the individual while they are participating in an activity that utilizes monies from their budget. It would seem that the concern is more that money could be misspent, rather than the health and well-being of the individual.

And so, as you can see, my preoccupation with Lauren’s future continues. Only now it is colored by the future that a young woman named Tara did not get to live, and the pain and sadness in her too short life.

Wheechair Woes

April 15, 2010

A common complaint of families whose children use wheelchairs is trying to find a decent provider. Here’s a short history of our experience in the last ten years:

Provider A put Lauren in a chair with a “hard as a board” seat. We didn’t know very much about seating at the time but soon learned that you don’t have a child who is sitting in a chair all day sit on that type of seat.

Provider B built a new chair with better seating, except the footplates actually overlapped.

Provider C was the real gem. They changed Lauren’s seating once again which ended up with her sitting in a totally inappropriate position and replaced the footplates with new ones which broke immediately (we use a little bungee cord to hold them closed). But the best part was when we waited for months for them to just process the insurance paperwork. When I called to make an inquiry about the delay, the woman who answered the phone forgot to push the hold button before remarking to her co-worker on how she was going to have to “make up a big lie for this woman”. They had forgotten to process the paperwork. So, a few changes and a cleaning for Lauren’s chair took a year to accomplish.

Now we have held off as long as we can to make much needed repairs, but the tires have worn down to the threads and we can wait no longer. Inquiries to other parents about their providers have only resulted in more stories of woe rather than recommendations. A call to the manufacturer resulted in being told to look on a website for providers. I called several. A few were no longer in business, another, over an hour’s drive away, wanted $65 up front just to look at the chair, some were no longer affiliated with that manufacturer. So, I resorted to the phone book where I found a company an hour away that agreed to see the chair and thought they would be able to help us. Four weeks ago we took the chair in to them. The technician could not have been surlier while filling out the plethora of forms he needed to complete before even looking at the chair. Then he got to the part about what insurance Lauren had – he was suddenly quite helpful and even suggested we get an entire new chair! We decided to just make the repairs – new tires, armrests, fix the footplates (I hope).

We have been waiting patiently knowing the insurance paperwork takes time and, of course, they’ll need to order parts. The company called yesterday to announce they’ve figured out how much the repairs will cost. Four weeks just to figure that out??? But the best part was that they expect payment up front. They don’t “take assignment” if you own your own chair – like who else would own it? So, before they’ll proceed they want to be paid. Did they tell me this when they accepted the job? – Noooooo. Did I want to tell them what they could do with their bill? Yeeeessssss. But to do so would only delay things even more. So, I will send them their check, get the repairs done, and look for a better provider. Wish me luck!

Searching for a Caregiver - Again

April 13, 2010

We are searching for a caregiver, a new DSP. The last one we hired, just eight months ago, has had to leave due to some medical issues. So, now we are looking to fill this second-shift position once again. The last time it took two and a half months to find someone. There is much talk these days about unemployment and how so many people are searching in vain for work. We have a Home Goods store opening nearby and over 200 people showed up to apply for positions. So, I placed an ad for a caregiver in the local paper and prepared for the onslaught of applicants for the job we had to offer. Ten calls. We’ve had ten calls. Seven of which could be summed up by the question of one of them, “Ya mean ahd haf ta hep her ta the latrine?”

I scheduled three interviews, two never showed for their appointments. ....This is only going to get worse. In the next few years the number of people needing care is going to exceed the number of people available to give care – “available” - not willing, just available. Meaning, they are of an age to be physically able to provide the care.

I am all too slowly coming to the realization that self-direction is only a temporary solution to a permanent problem. Through self-direction, funding is available to help individuals and their families utilize the resources present in their own communities to meet their needs. Maybe it’s easier, more successful, more “doable” when an individual requires a lesser degree of care. I don’t know. For those individuals with significant needs, appropriate, quality care will be increasingly difficult to find and to finance. The infrastructure to support self-direction for these individuals does not exist, and I know of no plans to develop it. Self-direction is great in theory, but will not succeed in the community and atmosphere in which we currently live. Are individuals and families in other areas finding more success? I don’t know. Will it mean we will have to leave the community where we have lived for over forty years in order to assure that Lauren is cared for? I don’t know.

I’ve approached our personal foray into self direction with enthusiasm and hope. Three years into this, I have given all the energy and optimism that I can muster to trying to build a self-directed life for Lauren. One, that it is very evident, will fall apart without my vigilant and never-ending fruitless toil. When it is time to fill a vacant caregiver’s position it should not take months. People will come and go in Lauren’s life. And, someday so will I. Right now I am the mortar holding together the brick walls enclosing Lauren in safety and happiness. Too much mortar and not enough brick make for very weak walls. It is evident that they are starting to crumble already.

The Need for Change

April 8, 2010

A mom recently wrote to me asking for help or ideas on enabling her thirty something year-old daughter to build an independent life in the community. I had little to offer her besides some links to information on what programs “might” be available “someday”. I encouraged her to acquaint herself with all of the programs, federal and state, that may offer assistance. But as far as a directive to “go here” “do this”...I had nothing. The only consolation I could offer her is that there are many, many families in the same situation. It’s frustrating and depressing to be able to do so little to help families that are so desperate to provide the care that their children need. In their heartfelt pleas for information and assistance, you can hear not only the love they have for their children but also the fear that the day will come, too soon, when they are no longer able to care for them.

What is the answer? Many groups are now suffering due to the economy and cutbacks. Individuals with developmental disabilities were suffering the effects of not enough services long before the economy tanked. It seems that this is a group who will never be adequately served unless some drastic changes are made. What those changes should be is something I don’t have an answer for. I have some ideas. I have many questions. Pondering those questions I was reminded of a line in that wonderful new series on the Discovery Channel – called Life. Have you seen it? - fabulous footage of life in the animal kingdom. While talking about species’ ability to adapt to a changing environment, the narrator says, “The only way to survive is to change.”

Have we been holding on to too many of the same old formulas, ideas, and habits relied upon to formulate services for individuals with developmental disabilities? Self-direction is surely a step onto the right path, but is it enough? Are we looking at it through eyes that are guided by the framework of services of the past, rather than with vision for new and better ways of meeting individual’s needs? All I know is that we are failing. We are failing vulnerable citizens who merely want to be respected as a part of their community. We are failing their families who have given so much and are trying to be proactive and responsible citizens as well as parents. How many generations will it take before we do it right?

No "Choice" in Support Coordination

April 6, 2010

Those of us who have been involved with the service system that supports individuals with developmental disabilities and their families are familiar with the role of case manager. When you become involved in New Jersey’s current self-direction program – Real Life Choices – the individual who is basically your case manager is called a support coordinator.  The support coordinator also helps an individual develop a life plan and decide how to spend their budget. They facilitate, coordinate, and support. It takes time to get to know the person you need to support and their families. And, if that person has a limited ability to communicate, well that task is even harder. Over the last three years we have been working with a wonderful support coordinator who has gotten to know Lauren’s needs, what her family’s concerns and hopes are for her, and who has walked us through the technical aspects of developing, maintaining, and successfully utilizing a budget. She has also been a sympathetic ear when I needed to vent and a supportive, professional advocate teaching us to navigate self-direction.

The organization who is responsible for providing support coordination is making some changes. I understand that they are probably motivated by the current state of the economy and organizational issues. They have been a responsive and effective provider to date, but sometimes you know you just get tired of being understanding. They say they want to make the coordinators “county based” so that they have a “better local knowledge of county resources and opportunities”. Isn’t it less difficult to find out what a county or town has to offer than it is to get to know someone like Lauren and to develop a relationship with her and her family? It may be an economic or organizational matter for an agency but for families it comes down to a matter of trust and respect. Trust developed over months and years is important and something of a rare commodity for those of us who have dealt with New Jersey’s ineffective case management system for many years. And, respect, well it’s a two-way street. We must feel that we can respect the abilities and knowledge of the people who need to support us and we need to feel respected for our roles and knowledge as family members who have devoted our lives to supporting our family member with a disability. Those of us who have developed a relationship of trust and respect with our support coordinator are now having that valued relationship taken away. We have no choice in the matter. I thought the whole premise behind self-direction was choice. On the support coordination agency’s website they list the principles of self-direction. They are:

         Freedom... to make our own choices
         Responsibility... for the choices we make
         Authority ... over the resources that support us
         Community... where we all belong
         Citizenship... with all of its rights and responsibilities.

Are those principles in effect only when it’s convenient?

The Sandwich Generation - Part Two

April 1, 2010

Soft, glowing lights formed geometric patterns on a dark background as my plane made its descent into Newark Airport. The squares and rectangles and grids of street lights looked orderly and well-planned, almost predictable, as I gazed from the tiny airplane window. How ironic that life on those streets is far from orderly or predictable. Our life these days seems messy, often frenetic, and a bit scary in its uncertainties. I am returning from spending a few days checking on my elderly parents. We spent many hours just talking – about the past and about the present. At their age they no longer talk much about the future. I was struck at the simplicity of life in their past that they cling to, and the confusing rush of constant change that they are encountering in their present. “Progress” is coming at them too fast for them to absorb – they understand “party lines” not iPhones and Droids. They understand postage stamps and penmanship not emails and texting. They sit on their porch and wave at neighbors riding by on their bicycles yet they must venture out into a world where people seem to speak a different language, walk faster, and are terribly impatient. I try to explain the technology, changes, and policies that now encroach on their lives. I deal with what they are unable to understand or unwilling to get involved with. I try to protect them, and make the future that appears uncertain and overwhelming in its complexities, survivable.

I try to protect them, and make the future that appears uncertain and overwhelming in its complexities, survivable.” Is that not what I am also doing for Lauren? The uncertainties of her future – where she will live, with whom she will live, who will care for her – are constant questions. How the economy, politics, and public attitudes will affect the funding and options that will shape her future are yet more. How interesting that the same questions that apply to my child, also apply to my my elderly parents. The difference lies in the fact that my parents do not dwell on the years that lay ahead of them – they know that they are limited. For Lauren, the future looms large and lengthy. She has a future yet to plan, to enjoy, to live. Because she is really just starting her life, she seems more vulnerable, and the answers to those many questions are both more difficult and more important to answer.