Moving On

September 8, 2011

Two years ago I started writing this blog, sharing with you the joys and trials of caring for Lauren.  When I began I intended to write about the ins and outs of self-directed services and how the changes in service provision – from program-based services to individualized funding – affected the life of a young woman living at home with her family.  For awhile that is all I wrote about, except for posts that touched upon the medical, social, and emotional aspects of providing care for an individual with severe, multiple disabilities. 

One year ago, the idea that Lauren could use her self-directed budgets to support a life independent of her parents became a concrete plan, and my posts began to chronicle the journey of making that plan a reality. What I did not realize is how much of that journey or how many of my posts, were not going to be about the nuts and bolts of budgets or construction or staffing, but rather, about the process of letting go, the emotional roller coaster of redefining my role as caregiver, as Mom. 

I have been caring for Lauren for twenty-six years today.  I have been her protector, her support system, her advocate, her champion.  Without me she would not have survived....literally.  I have devoted my life to making sure that she had a life.  I defined who she was.  I did not realize, though, how much she defined who I was.  The process of letting go of my role as daily caregiver is leaving me with many questions about who I am.  Lauren has been my anchor, mooring me to the duties, responsibilities, and schedule that ruled my life and outlined my days.  Now, Lauren is no longer part of every thought of every waking moment.  The fact that I no longer see her every day is still mind boggling for me.  The future, my future, now looms ahead of me like a thick fog. I cannot see the road ahead or know where I am going, or, truthfully, where I want to go. The ability to choose how to spend my days or decide what to do with the rest of my life are not concepts that I thought I would ever have the opportunity to explore.  I realize now that providing care for Lauren has acted like a filter through which I saw everything else in my life.  Her needs, her moods, her limitations have been the parameters within which every action has been taken, every decision made, and every relationship formed. Now that the filter has been removed, I have to find the courage, the energy, to no longer live my life through Lauren’s for the first time since I was in my twenties. I must come to terms with the fact that burying myself in Lauren’s care has prevented me from doing many things, but it has also protected me from having to do many things.  I may not have been able to follow a dream but I didn’t have to risk failing at it either.  Things that were not in my best interests were tolerated if they were in hers.  Caring for Lauren has spared me from taking chances, risking anything that would have affected my ability to care for her.  How do I move on from this safe, familiar place?

The first step I am going to take in moving forward is to make this my last post.  I will spend the rest of my life caring for Lauren in one way or another but on her twenty-sixth birthday I am giving us both a gift.  I will respect that even though her challenges are serious and numerous, she is an adult and deserves a life of her own....and so do I.  She has grown so much in the two short months she has been in her own home.  She has grown up, and now I must do some growing of my own.  This blog has been a bridge between the past and the future for us both.  It has been extraordinarily helpful to work out my thoughts in these posts and to tell the story of a young woman and her family.  Many readers have traveled with us on this journey and offered valuable encouragement along the way.  I thank you for your kind words and fellowship.  I don’t know what tomorrow will bring.  What I do know is that caring for my beautiful daughter with developmental disabilities has changed me, enriched me, and educated me as much as it has placed extraordinary limitations on my own development.  Can I be as courageous as Lauren is showing she can be as she embraces her new life?  I hope so.

Happy Birthday, my beautiful Lauren.  Happy life.

An Ovenight with Mom and Dad

August 13, 2011

Last Thursday I brought Lauren home to spend the night with us. Lauren has not spent an overnight with Mom and Dad since her first night in her new home.  She’s been so happy there and adjusted so quickly that I abandoned my original plan to “transition” her into her new place.  Instead I let her settle in, get used to her new surroundings, establish connections with new sights, smells, and sounds.  She has accepted this major change in her life with complete grace and enthusiasm.

She loves her new sofa.  It not only reclines like the one at home, but this one rocks too.  N has managed to fasten a seatbelt to the chair to make Lauren’s rather enthusiastic rocking a safe activity.  A new fish tank is where she now happily spends her time in her stander.  She grew to love N and L’s fish tank at their former home, and now she has one of her own.  Scrolled letters over her bed proclaim, “May you live every day of your life with joy” and so far, that has been exactly how she has been living.

I was a bit concerned when I brought her home - how she would react to being back in her old room?  Would she be confused?  Would she be happy, sad, angry, unsettled?  She was fine.  She went to bed at her normal time and slept quietly through the night.  It didn’t seem to faze her one little bit to be back in her old routines and surroundings.  We had a lovely day together the next day.  We sat at the computer and bought some new songs and then downloaded them onto her mP3.  We sat in the screen room and watched Dad cut the grass (she loves the sound of the lawn mower).  We had lunch outside and went for a ride in our golf cart.  We painted our toenails pink ....and then it was time to go back to her house.  Again, I wondered if she would be upset, if it would bother her for me to take her back and leave her with C.  I drove her back and as we pulled into her driveway, she was complaining a bit.  As soon as I pushed her into her house, her face lit up with a big smile.  She was happy to be home.

There have been numerous bumps and potholes, frustrations and fears while planning and implementing this move for Lauren.  But the most important part – how Lauren would react or adjust to having her own home – has had such a positive result that I am absolutely in awe of the outcome.  It makes all of the insanity of building inspectors, electric companies, government regulations, and Mother Nature worth every minute.  I thought I would have had to help Lauren learn to live in a new place, instead her maturity and flexibility have taught me to have more faith in my daughter and in the myself.

Turning on the Electric

August 6, 2011

Life is messy. Life is complicated. Life is unpredictable. Life never fits squarely within preordained parameters. More and more these days it seems like “the rules” that govern our lives are written by people who have forgotten about these things. Especially since 9/ll and the resulting added security features seemingly built into every step we take, we run into roadblocks whenever we can’t simply check “yes”.  Like when the answer lies somewhere between “yes” and “no”. In addition it seems lately that the only people who are considered innocent until proven guilty are criminals. We live in a world of proving who we are, where we live, and that we’re not insolvent. You can’t use your own driver’s license to prove your identity when you renew your driver’s license (but you can use an out-of-state license??). You’re asked to pay the copay for your doctor’s visit after providing insurance cards, picture ID, and a credit card in case you don’t pay your bill, before you even know what’s wrong with you. And, I’ve just learned that you can’t get electric if you don’t have a credit history.

Getting the electric service transferred into Lauren’s name is the latest hurdle we’ve encountered. The bill has to be in her name in order to apply for the various types of assistance she will need to sustain her living arrangement. Eight and a half hours on hold over three days and conversations with more than seven people later.........wait, I don’t want to give the ending away.

It seems that because Lauren has no credit history – let’s see, severely disabled, total care, mmmmm – go figure - she would have to leave a security deposit of $683.00. That would be pretty much her entire income for one month. And, she would need to go to one of three specific JCP&L offices, all at least an hour away, and provide a picture ID plus another form of ID. I explained the situation to the phone representative. I explained that Lauren does not drive and thus does not have a picture ID. (I was told to take her to a Notary Public and have an affidavit made up to proved her identity. I asked how the Notary would know her any better than JCP&L would, and got no answer) I explained the hardship of a young woman in a wheelchair, with low-income, having to travel to their office to complete their requirement. My husband called and explained the situation to yet another person. They didn’t care. That was the rule. No exception. Now what?

I called the NJ Board of Public Utilities where I spoke with Miss Hirschberg. I explained the situation to Miss Hirschberg. I explained the significance of Lauren getting her own home to Miss Hirschberg. Miss Hirschberg said, “Stop. You’re going to make me cry.” With grim determination in her voice, she said, “We handle complaints with utility companies by email, but I’m calling JCP&L right now. You’ll receive a call back from them by the end of the day. Here’s my number in case you don’t.”

Less than an hour later I received a call from Kerri at JCP&L who said, “The situation has been explained to me. I live in a mobile home park, too. The owner’s daughter is handicapped. Of course, you’re not taking your daughter to a JCP&L office - absolutely not!  And, we’re waving the security deposit. I’m putting a note in Lauren’s file. The only restriction is that should the bill ever fall behind, she’ll be asked for a security deposit. Call again to have the electric transferred and tell them to look for the note in the file.”  She then proceeded to ask for contacts and information she could pass on to the park owner who was trying to figure out services for his own daughter.  She wanted to know how Lauren was able to put together her housing arrangement.  In the end, I think I was less helpful to her than she was to me.

So, two hours on hold later (you leave your number and they call you back) I was finally able to get the account into Lauren’s name.  Then they transferred me to someone who was supposed to give me a confirmation number, didn’t, but did try and sell me Direct TV service.

Can any of us get through our lives and meet our responsibilities, if rules aren’t occasionally bent, if exceptions aren’t sometimes required, if common sense isn’t allowed free rein? How ridiculous is it to have wasted so much time, have had to speak to so many people, have had to involve an advocate, just to get Lauren electrical service? Shouldn’t the first person I spoke to at JCP&L have identified an unusual situation, referred me to someone who could make an exception if warranted, have employed some measure of concern or compassion? How sad that they felt no need to do any of that. 

The Social Security Office, Social Services, and a Trip Down the Rabbit Hole

July 29, 2011

One of the impediments to someone like Lauren moving into their own home is trying to figure out the financial end of the arrangement. Lauren may qualify for rental assistance, food stamps, heating assistance, etc. To apply for most of these things, you need receipts and bills for the residence. Of course, if you haven’t moved in yet, you don’t have the rental receipts, and you don’t have the receipts for your electric, gas, etc. If you don’t have those things, you can’t get approval for the assistance or know how much that assistance will be. So, you can’t be confident that an individual will be able to afford their potential living arrangement. If an individual’s family is willing to provide some financial support, it may make them ineligible for assistance or decrease the amount they receive.

This all got even more complicated this week when I went to the Social Security office to notify them of Lauren’s move. The clerk there explained to us that if Lauren receives, say $800 a month in income, and her expenses are $900 and we provide her with the extra $100, her income will be reduced and she will probably lose her SSI (and her Medicaid), possibly making her unable to live independently. If her income is $800 a month and her expenses are $700, then she is fine. But they can’t tell us how this will all work out for Lauren until she has receipts from her rent and utilities. The clerk told us to come back when we have the receipts. So, basically, the regulations work against someone trying to be independent and a family trying to assist someone with a disability in having an adult life. I would imagine that since most families today live on a shoestring, in would be quite risky to have their loved one with a disability move out on their own without concrete figures with which to plan.

Our second question for the clerk at Social Security was regarding the monthly check I have received from Social Security since Lauren turned eighteen (my husband is on Social Security), because I am her primary caregiver and am unable to work outside of the home. We wanted to notify Social Security that Lauren was no longer living in our home in case my check would need to be stopped. The clerk didn’t know if the check should be stopped. She wrote a letter to the Social Security Administration. The clerk did tell us that if my check stops, Lauren’s will probably increase. So, then that will affect everything we have applied for – rental assistance, or will apply for - food stamps, heating assistance, etc.

Are you still with me? The bottom line is that the system works against an individual with developmental disabilities trying to live an independent life. It works against families trying to provide some assistance to help an individual live more independently. And, it is impossible to navigate the system or make prudent financial decisions or plans, because assistance is only available and calculated after an individual is already in a living situation. In essence, only those individuals who have unlimited financial backing from their families can attempt to live independently unless their living situation is overseen by a non-profit or provider.

Maybe it was a mistake to do the rental assistance paperwork, go to the Social Security office, and walk through the food stamp and heat assistance paperwork all in one day. By nightfall I had this kind of “Alice’s Adventure in Wonderland” kind of feeling. I had fallen down into a rabbit hole where everything was backwards, odd, and general nonsense. Like Alice, I had found a land where logic was topsy-turvy. Unfortunately, this is our reality, not a fantasy.

She Woke Up Laughing

July 22, 2011

7/19 She woke up laughing

7/20 She woke up laughing

7/21 She woke up laughing

Those are the entries for the last three days in Lauren’s journal. Her caregivers maintain the journal to keep each other apprised of daily events, seizures, and any other noteworthy items. I peek into it when I’m at Lauren’s house.  Can you imagine how I feel when her happiness is noted day after day? 

I had moments of doubt many times that Lauren would successfully be able to move into her own home. And, many people questioned the decision, not so much because they thought Lauren would not be successful, but mostly because they didn’t think I could handle it. But since I began to implement the idea that she would move into her own home, it has just felt “right”. Even though I did question the idea of her living on her own, I always came back to that feeling of rightness. And now, her reaction to the move fills me with relief, gratefulness, and a kind of wonder that we have indeed pulled this off. Lauren is happily ensconced in her own home with people who care for and about her surrounding her.  If I had a journal, today it would say, "Mom is smiling."

A Letter to Lauren

July 11, 2011

Dear Lauren,

I sat in your empty room this morning. Divested of your treasures, assorted shoes lying about, and pictures of the people that have loved and cared for you over the years, it is simply a room, an incredibly quiet room. There is a stillness throughout the house as if you have taken the “energy” of the house with you as well as your things. I feel like I have lost my anchor, my reason to get up in the morning, the guideposts of my day, now that your schedule is no longer mine. I still hear you in the night, rustling your covers, snuggling further into your pillow, and I picture your curly dark head. Yet, you are actually miles away.

No one or no thing has ever needed me, depended on me, as much as you have. Now you have a home of your own. This should be a time of celebration. It is a victory hard won. I thought I would be elated, that this would be a step forward for both of us. Yet, you have taken this huge step and I am paralyzed by fear. So many things could go wrong. Have I thought this thing through? Have I planned for all the possibilities, all the necessities?

Are you ready? Am I? You push me away lately – yet still raise your cheek for a goodbye kiss. Who will be there to interpret each sound, know what you need just from sharing your space? I can tell just by seeing the color of your skin or hearing the tone of your voice if you are hungry, tired, or unwell. Sure, other people know you, care about you, will be with you every moment, but will they listen or see the way I would?

You’re supposed to give your child roots and wings. Your roots are forever entwined with mine. Are your wings strong enough though, will you soar or fall? I must allow you to try. The weight around my heart should not keep you tethered unable to fly. I have built you a platform, the foundation is strong. I’ll wait here if you need to return. But for now…fly, baby…. fly.

Good Things

July 7, 2011

It’s been a busy, emotional last few days. Lauren spent her first night in her new home on Tuesday. It had been flurry of activity getting things organized and moved in. The house is becoming a home and looking quite lovely. There is still much to do, but the necessities are in place. Lauren took all of the furniture from her room at our house, and we gave her a few other pieces that we will no longer need when we downsize (hopefully, soon – real estate gods willing). The cable guy spent several hours on Saturday getting her TVs, internet, and phone set up....and managed to proposition me in the middle of it all (that hasn’t happened in years – of course, the missing teeth rather skewed the whole experience).

I think Lauren truly likes her new home. She is always smiling when she is there. I called the house to check on her Wednesday morning and N reported that five minutes after she went to bed the night before, she sat up and just began laughing. Thankfully, she went to sleep soon after. While I was talking to N, I could hear her laughing in the background.

I have not been laughing. There’s a feeling of, I guess I’d call it, unreality, in going through the days unlimited by my life revolving around Lauren’s daily schedule, her needs, constant decisions about her care. It was so ingrained in my existence that I feel rather ungrounded and disoriented. The house is a bit empty, literally and figuratively. George says it looks like we’ve been robbed with bits and pieces of furniture and Lauren’s things missing from every room. Who knew that I would have a harder time adjusting than Lauren? But, actually that’s a really good thing.