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.

Dinner at Lauren's House

June 29, 2011

Lauren ate her first dinner in her new home yesterday. She seems very comfortable there. The home is almost finished, just some outdoor things to do. The inside is done except for a bit of decorating. The house has physically met all of my expectations. I don’t know what Lauren’s expectations are or if she has expectations. For most of her life she has been, pretty much, along for the ride, at the mercy of the whims of the people who care for her. I don’t know if she dreamed of gaining her independence, moving on to an adult life, but she seems to be happy with the opportunity with which we are presenting her.

After dinner, Lauren reclined on her new sofa, a big smile on her face. Her music was on the stereo, TV yet to be installed (Finding my way through the complexities of cable versus Direct TV, and their associated “bundles”, may have been harder than figuring out Lauren’s budget.). The sun streamed in through the windows and it looked as if all was right in her world. I hope it will always be like that.

Surviving the Frustration

June 23, 2011

Between moments of frustration at the constant delays in getting Lauren’s home completed, I live in a state of barely suppressed glee. I’m incredibly thankful for the opportunity for Lauren to get her own home and excited about what the future could now hold for me without the constant restrictions of caring for a young woman with significant disabilities. Today, I met two people who were a sobering reminder of just what a miracle it is that Lauren will have her own home at the age of twenty-five and a frustrating example of how truly little services and resources have progressed since I became an advocate twenty some years ago.

I drove two hours south early this morning and two plus hours back in torrential rain this afternoon to attend a meeting of the Family Support Coalition of New Jersey. A representative from the state spoke at the meeting about the upcoming changes in how Medicaid will be provided in the future. Two people, parents of a twenty-three year old young woman with significant multiple disabilities, voiced their frustration, sadness, and possibly despair about not only the state of their lives now, but also the view of their future. While discussing the often cumbersome and costly Medicaid requirements for background checks, the mother expressed her concern that the state seemed to be making every effort to protect her child from potential harm from a hired caregiver, “But,” she said, “who protects my child from me?” Her daughter receives a few hours of care a week through Medicaid. They have been offered one weekend a year of respite. The mother is providing non-stop care and wonders that when she is exhausted, frustrated, and in despair – “Who protects my child from me?” I’m sure she is not voicing any intent to harm her child, nor does she want the state to have a say in how she cares for her child, rather, she is voicing her fear about her own limitations. We all have them. But state services neither recognize the limitations, nor the contributions, of families caring for their children with significant and serious care needs.

This couple is also frustrated that while the state seemingly ignores their needs, should they have the opportunity to hire someone to care for their child with Medicaid funds, the state would not rely on their judgment in who they hire, but would require a background check even if they were hiring, say, a cousin that one of them had known for 40 years. They are confused and angry. Who can blame them? On one hand the state is telling them that they are responsible for providing and directing their child’s care, and on the other hand, that they are not.

I become involved in the Coalition seventeen years ago, when we first had legislation in place to support services that would prevent premature out of home placements, to support families in their efforts to care for the varied and exhausting needs of their children with developmental disabilities, and that would encourage the development of services families desperately needed. We’ve worked tirelessly, sat in countless meetings, and been the best advocates we could be, yet still, families are not close to receiving the services that they need.

So, today was a sobering reminder of the work yet left to do. Families would be experiencing less despair, frustration, and fear if they could at least have hope, if they could simply have hope. How much harder is the journey if you don’t know your destination, if there are no signposts or maps to guide your way, if you are making your journey alone? I was reminded today that for most families, that is the journey that they are on. How blessed am I to be frustrated, not because there is no hope, but because the rain has delayed us another day? This I can survive, but I worry how long many other families can survive the cause of their frustration.

Turning a House into a Home

June 17, 2011

We are getting closer.  Not as quickly as I'd like, but we're making progress toward finishing Lauren's home.  I've spent most of the last two weeks painting.  It's a hateful job, but it does look wonderful.  Shades of ylang ylang, soft petal, harmony, and kangaroo (Where do they get these names?) have warmed the walls and toned down the stark white that they were painted when the home arrived.

The major holdup is the garage which is being built onsite.  For some reason ??? the subcontractor doesn't feel the sense of urgency to GET IT DONE!! that I do.  Its going to take at least two more weeks, if I'm lucky.  In the meantime, I'll continue to get things organized and set up inside.

For the first time yesterday, Lauren saw her new home.  She became very quiet, almost wary when she first entered.  Then she suddenly looked up and started giggling.  After a tour of all of the rooms, she ate lunch at her new snack bar.  I don't know if she connected with the space or it was just a new place to be.  I'm sure when all her things are around her this house will be someplace where she can feel comfortable.  It's up to me turn this house into a home, Lauren's home.

Starting the Rest of My Life

June 3, 2011

There’s a line in the movie, When Harry Met Sally, where Billy Crystal’s character says something like, “When you figure out what you want to do with the rest of your life, you want the rest of your life to start as soon as possible.” That is exactly how I’ve been feeling lately. Now that Lauren’s home is in place, it seems more like a reality than it did when it was, basically, a figment of my imagination. This is really going to happen! Then what?

I’ve noticed a subtle shift in the way I frame the days ahead in my mind and in conversations with my husband. Things we could never do before, or at least in the last twenty-five years, will now be possible. We CAN make last minute plans. We COULD take a spur of the moment trip. We will have NO CURFEW (we always had to be home by the end of a caregiver’s shift. Unlike Cinderella, we only get to stay out until ten.). And, if we do stay out late, we can sleep in the next morning!! Our schedule will no longer revolve around Lauren’s needs. My husband or I can do things independently without concern for the burden of care we may be placing on the other.

The evolution of this change in mindset has been very gradual. It started out with the harder than I imagined necessity of trying to wrap my mind around the changes that will happen when Lauren is no longer living with us. It was a somewhat surreal experience to accept and process the freedom I will soon have – unlike anything I have experienced in my life, (overprotective, old-fashioned parents, married young by today’s standards, long boring story, blah, blah). Soon after the reality began to finally sink in, I started to blurt out things like, “Heh, you know what we could do?” and “Wow, I’ll be able to.....” And now, I’m about to cross the threshold of that hard-to-imagine, monumental change.

So now that I see that “the rest of my life” is so very close, I can’t wait to get there. In the next week I’ll be painting (Please, God, don’t let it take longer than that – five gallons of paint – yikes) and decorating and dealing with the last minute details. By this time next month, Lauren and I could be living “the rest of our lives” – Yippeeeeeee!

The House Arrives

May 25, 2011

Lauren’s new home arrived on Monday. That sounds funny doesn’t it? Like the UPS man dropped it off or maybe the Fedex guy.  It’s a manufactured home, and is delivered, by the manufacturer, in two pieces, completely finished inside and mostly finished outside, down to the drapes hanging on the windows and the shingles on the roof. The home arrives on two chassis or trailers pulled all the way from a small town in Pennsylvania, and it is then backed onto a concrete “pad” where a crew of “setters” will complete its assembly.

Yesterday and today the setters are raising the roof, installing siding on the ends, and buttoning up the “marriage wall” or points inside the house where the two pieces come together. It seems so long ago, even though it was only last fall, that I worked out the design for the home and selected the fixtures, carpeting, and cabinets. It is the first tangible evidence that Lauren will indeed soon have her own home. Prior to this, Lauren’s new home was all about planning, and numbers, and schedules. This is wood, and sheetrock, and faucets. I’m starting to get a bit giddy. The goal I’ve been dreaming about, and working so hard for so long to reach, is becoming a reality. I know there will be hurdles. I try not to think too far into the future, looking for problems, issues, potholes in the road ahead. For right now, we are in a wonderful, positive, age-appropriate place. This time last year a home for Lauren was not even a real dream. It was a goal without structure, permanence, or clear vision.

I’m on my way over to see the inside of the house now for the first time. I’ll take a camera so that I can share more pictures with you. Here are five words I’ve never said before that I’m sharing with you the first time - “I’m going to Lauren’s house today.”

God's Laughing

May 16, 2011

Last September I told my readers that I would be spending the next year telling them all about the process and, hopefully, the success of Lauren moving into her own home. Unfortunately, I think God must be getting a stitch in his side from laughing so hard lately - if you want to believe the saying, “If you want to make God laugh, tell him your plans.” Hardly anything has gone according to plan in the last nine months. I know it was going to be a busy time, I just had no idea how crazy, how challenging, or how emotional a time it would be.

I hadn’t planned on major delays in my finely structured timeline for Lauren’s home. I hadn’t planned on the difficulties of dealing with the emotions and worries of Lauren moving out on her own being complicated by the additional turmoil of dealing with very serious changes in the lives of my elderly parents. I hadn’t planned on the resulting life-altering challenges to long held beliefs and dreams. I hadn’t planned on not being able to count on my plans.

Lauren’s home is still proceeding in a positive direction, just much slower than anticipated. According to the original plan, Lauren would be two weeks into my “transition plan” for acclimating her to her new home. She was due to be spending several nights this week “sleeping over”. Instead, due to various delays, mostly weather related, her home won’t even be delivered until next Monday. (Lauren’s home is a manufactured or mobile home and is delivered from the factory in two pieces.) We still need to make all necessary connections (electric, sewer, cable, etc), do other sitework and whatever else is required, before she can start to move in. That will put us at least a month and a half behind schedule. I’ve been using this time to shop for things she needs for the house, sew some special things for her bedroom, and pack up some of this things she will take with her. I’ve been stalwartly plugging along making lists and matching colors. Then, instead of packing her winter clothes away where I usually store them, I put them into boxes to take to her new home. The next thing I knew, I was sitting in the middle of her bedroom sobbing. Planning has become reality. My baby is moving out.

My father has just moved out of my home. Dad is living in his summer place now that the weather has warmed up. Mom is still not happy in the nursing home, and as we struggle to help her acclimate another curve ball has been thrown our way since last Friday. The nursing home is on lock-down. A rather nasty virus has swept through the unit and everyone is basically, quarantined. My mother came down with the virus on Friday. Frequent phone calls to the nursing staff tells us that she is recovering, but we cannot get in. She was angry with us before this, I can’t imagine how abandoned she feels now. We can’t call her since she cannot easily get to her phone….and, truthfully, I don’t want to be the first one to talk to her. Just call me chicken, I don’t care.

You can’t go through this much turmoil and strife in your life in this short an amount of time without it affecting all of the relationships in your life, some for the good, others for the bad. When the dizzying merry-go-round of stress slows down, for some reason, it seems to have clarified your vision of the people and path of your life. For awhile you feel like you’re in a freshly shaken snowglobe, lost amongst the flakes, straining to try to see through the flurry of responsibilities that just don’t stop. Then, suddenly the flakes settle. You’re still buried up to your knees but your vision is clear. You see exactly where you are. This is not where I planned to be today. I just hope God stops laughing soon.

Coming to Terms

April 28, 2011

Placing my mother in a nursing home has become, at least initially, more draining than caring for her at home. In one week, she has gone from mildly confused to full-blown dementia. She is fearful of the small children running around her, the bugs on the wall, and the water splashing off of the roof – none of which exist. She calls us at night wanting us to come to her, fearful of being alone although she’s surrounded by other residents and staff. She tells my father that she’s going to jump out the window. He tells her it’s a four foot drop. Today is day ten of her stay.

We requested that her doctor be changed and the new doctor has seen her now. It seems that the pain meds that she is on could be causing the hallucinations and sudden fall into dementia. We are hopeful that she will improve. If not, she is where she needs to be.

My father asks me, “What did we do to deserve this?” It makes me angry, furious in fact. I ask him, “Did I do something wrong to deserve the life-changing challenges of raising Lauren? Did people who suffer with cancer do something wrong?” He is, no, they both are, so ungrateful for the life that they’ve had. They have not been rich or famous but they have been comfortable, healthy, and unchallenged by adversity. They have enjoyed thirty years of retirement. I am about to enter into a time of unprecedented freedom in my life. I will still be involved and responsible for Lauren’s life as she moves into her own home, but it will be in an “as needed” capacity instead of a 24/7 capacity. I feel that my parents expect me to take on the responsibility of dealing with the results of their poor planning and selfish assumption that they need not plan for their declining years. I have been so caught up with the crisis mode that my mother’s sudden decline sent me into, that it has taken me awhile to be able to clearly think about the situation. I will, of course, always be here for them, but the extent of that help will have limits. Just as they had their priorities, I must have mine.

I had a long drive to and from a meeting yesterday, lots of uninterrupted time to think. I was thinking about my own mortality and how to avoid the pitfalls with which my parents are now dealing. I won’t have a daughter to care for me as they do. I hope that I will always remain grateful for the life that I have had. I hope that I can always find a way to contribute to this world. I hope that when I die my loved ones will mourn my passing....not feel relief. I hope that I accept the declines of age with grace and humor.

Throughout the years of raising Lauren and now with the crisis that has arisen with my parents, humor is often the one thing that carries you through, gets you over the hurdles, preserves your sanity. Sometimes its hard to find the humor in things. Today, it was staring me in the face as soon as I walked into the nursing home. Poor Mom has been hallucinating about children running around her...and today is “Take Your Child to Work Day” at the nursing home. Children are all over the place.

A Sad Week

April 21, 2011

This week has been pure hell. I knew it was going to be bad. I just didn’t know it would be this bad. Mom went into the nursing home on Monday. She hates it. She’s upset. She’s angry. She’s sad. All those fears I’ve lived with for years about institutionalization, I now see happening to my mother. Information is not shared amongst staff. Physicians are uncaring and uninterested. Staff are smiling, spouting warm words of sympathy and understanding, yet quality of care is far below my expectations. I met with the director today. She was full of excuses for the facility and the physician. It didn’t take much effort to shoot those excuses full of holes.

We were required to read and sign over sixty-five pages of documents for my mother to enter this facility. In addition, unsolicited, I provided them with information about my mother presented in the same format as Lauren’s Plan of Care. No one, NO ONE, read it. Yet decisions were made about her care, her medications, and her abilities. Last night I drew up my own documents regarding Mom’s plan of care and medical decisions. I took them to the director today and asked that they be signed by the facility. I presented them to her with a lovely smile and watched hers disappear. “No one has ever done this before!” Gee, where’ve I heard that before? She did not agree to sign them, but Mom’s file got a major overhaul and now includes those documents. If the changes outlined in them do not occur in a timely manner, I will push to get them signed. Right now they’re just threatening reminders in that file.

Every day this week I’ve sat and watched my mother cry. Then I go home and do the same. But I don’t want my father to see how upset I am, so I sit in the bottom of my closet where I know he can’t hear me and sob. My mother is old; she doesn’t have many years left. They are not going to be happy ones. It is not in her nature to make the best out of this situation. I can rationalize that none of this is my fault and in many ways her own actions have resulted in this turn of events, but I still feel guilty.

My thoughts have been turning this week to all of those children over the years whose parents placed them in institutions. I’ve always tried to be sympathetic and nonjudgmental, but this experience is making that harder. I would do just about anything to have prevented my mother from going into long-term care. My brother and I pleaded with my parents for years to make changes in their lives that would have allowed us to help with the declines that their aging would eventually present, but they always refused. So, we found ourselves without choices. I know the lack of services, educational opportunities, and general ignorance motivated families to place their children with developmental disabilities into institutional settings. I just can’t conceive of anything short of uncontrollable violence that would have made that choice acceptable to me.

So, even though I am terribly sad this week, I also feel blessed. If not for self-direction, eventually, I would have been forced by my own aging to place Lauren in some form of institutional setting. I fear not being there to oversee her self-direction for the rest of her life, but, at least, I have the hope that her life will not be controlled by the vagaries and inadequacies of a living situation controlled by strangers. Rather, I pray it will continue to be designed around her specific needs and desires, for as long as possible, by people who love and care for her.

Change and Promise

April 12, 2011

The grass is green. Such a simple sentence, but after a winter like the one we just had, a glorious one. Warm temperatures yesterday and a gentle rain overnight had me awakening to an almost startling change in the view outside my window today. Green grass, green fields set off by the red of tight buds forming on tree branches and bushes. Soon, they too will open to reveal leaves of green. Change and promise – the theme for spring, the theme for my life this spring.

My mother will be entering a health care facility on Monday. Lauren’s home is back on track and should be ready by June 1. When both are settled in their respective new homes, their lives and my life will be drastically different. It is hard to imagine what the future will look like. I want to anticipate the months to come eagerly, with joy …and relief. I find it hard, though, to allow myself to get too excited, to hold on to the promise. I’m worried about the other changes to come in all of our lives. Our federal and state governments are trying to deal with a bad economy and an ever-growing need for health and social services. They are trying to pass laws and change policies that will adversely affect the poor, disabled, and elderly. They are making changes to Medicare, Medicaid, and state services. What will this mean in my mother’s life, in Lauren’s, in mine? I wish I could let myself look to change as positive, promising. I wish I could embrace it. I hope that someday the poor, elderly and disabled can look to change with optimism instead of fear.


April 9, 2011

There were nine people in my kitchen this morning at 8:30 am. After a night of little sleep (Lauren’s been having problems sleeping lately), that was way more than my brain could handle. Besides George and I, there were my parents, my visiting stepdaughter and her husband, Lauren, caregiver N, and a home health aide there to help with my mother. Chaos.

There has been a bit of progress regarding my mother’s care. I am completing the paperwork for my mother to enter a skilled nursing facility. At this age, the questions preceding care seem to be more about financial matters than medical and social needs. Prying the details of their financial circumstances from my very private father has not been easy. I think that I have all of the information that I need now. I still struggle, though, to come to terms with my long battle to keep Lauren out of an institutional setting and my advocacy of the last few weeks to get my mother into an institutional setting.

A few days ago, the unenviable job of telling my mother that she would be going into this facility fell to me. I was advised to lie. Since I didn’t have any better idea as to how to kindly tell my mother that she had come to this stage of her life – I followed the advice I had been given. I told her that the doctor wanted her to get some rehab, and that we had found this very nice place to make that happen. She took the news rather well, better than I expected. She was more worried about how my father was going to react or handle being alone after sixty-five years of marriage. She later said to my father that she would probably go in and never come out again. So, even though she often seems confused and disoriented, she, somehow, is very aware of her fate.

This move to a health care facility is the only option we have at this point. It is a very hard decision to make but in the long run, I think that I will have a better relationship with my mother if others are providing her primary care. I know I do not have the energy or patience left after so much of my life being devoted to Lauren’s care, to provide her with the care she currently needs. If her care is being well provided by others, I can focus on spending time with her as simply my mom. The facility we have selected is beautiful and modern, serving seniors of all levels of need. There are many activities and opportunities for stimulation and fun. I wonder though, with her seemingly weekly decline, if she will be able to enjoy any of the opportunities this facility offers. She has been isolated for much of the last year in her own home and now in mine. I have hopes that the easily accessible and varied activities now available to her will make the days or years she has left pleasant ones.

I’ve allowed myself to daydream a bit about the day, in the now not too distant future, when Mom is in a stable, caring new home, Dad is once again ensconced in their summer place, and Lauren has moved into her own home. Little shivers of anticipation make my heart beat a little faster. The idea of the freedom soon to come lurks around the corners of my brain like an ephemeral ghost going in and out of focus. I can’t quite grasp the reality of it. I think I’m afraid to let myself.

Mom Reflex

April 3, 2011

I drape an afghan over my mother’s shoulders as she sits on the deck in the early spring sunshine. A cool breeze still holds the wet chill of the snowflakes that had fallen only the day before. She sits in her wheelchair, her face as pale as the once auburn locks that have now turned white, and stares out at the soon-to-be green hills that she can no longer see. I bring out a chair and sit next to her, but find it hard to sit still as my mind wanders to the work waiting inside for me. Yet I stay, and listen to the junco in the lilac bush berating us for sitting too close to the bird feeder. Afraid to come near, she soon flies off. I think about an incident earlier in the day, and the mothering instinct that still remains strong in this woman next to me who, so frequently now, seems to be a mere shell of the woman she used to be.

I had just finished feeding Lauren her breakfast when Dad wheeled Mom to the table. She immediately asked how my foot was. Two nights before as I stumbled out of bed to make one of those increasingly frequent trips to the bathroom, I had landed wrong on my foot and heard a distinct “crunch”. Painful and swollen, I had ignored the foot as much as possible till the discomfort forced me to elevate and ice the wounded appendage. During the next night I had woken to realize that I couldn’t put any weight on my foot at all. When I updated Mom on my mini crisis during the night, she said, “Why didn’t you call me?”

Why didn’t you call me? I think about the difficulties that Mom is facing right now. She needs to hold tightly to my hands as I walk backwards in front of her. Crushing my fingers, she shuffles along, afraid to fall. As I prepare her for bed each night, I ease her tee off of her left arm first, pull it over her head, then gingerly guide it down from her right shoulder where bone grinds painfully against bone. At dinner each night, I put food on Mom’s fork before she raises it to her mouth. She can no longer tell when she’s cleaned her plate. She’s often too confused to verbalize her wants and loses track of the days and the hours. Yet, still, she wants to help me. She didn’t stop to think of what she could or couldn’t do. She just expected me to ask. Wanted me to ask. But “mom” has not been an active part of my life for years. This now tiny, frail woman is my mother, but she has not been able to be there for me physically or emotionally in a very long time. However, the reflex of a mother to reach out, to want to comfort remains. “Why didn’t you call me?” she asked. Lauren, noisily vying for my attention, spared me from responding to a question whose answer was so painfully obvious.

I decide that the work inside will wait. The junco returns. She trills a few sweet notes and then repeats them over and over as if inviting us to join along. My tuneless whistle does not meet her need for a duet and she leaves us. This time for good.

Keeping Perspective

March 30, 2011

Doesn’t it feel like the recent prevalence of natural disasters hitting various parts of our world has caused a shift, a disruption in the course of many people’s lives all over the planet? Lately there seems to be so many people beset by maladies, family problems, and economic woes, much more than the normal ebb and flow of life usually hands out. Here at our house, things have not improved since my last few posts. Just when the family all seemed to be in agreement that my mother needed the care of a nursing home, my father has decided that he won’t go along with that. “No, I can’t do it.” They want to go back to Florida where they will be alone, with no help, no support of any kind. Where a few short weeks ago, if we had not intervened, we strongly believe that my mother would have died from improper care. We can’t allow that. So, in the interim, or should I say, today, they’ve agreed to renting an apartment or house here, near my brother and I, and hiring a caregiver. Of course, now I have to find an apartment, find a caregiver, furnish the apartment, and oversee medical and daily living needs, as well as supervise the caregiver.

This all has to be done while I’m in the midst of getting Lauren’s new home finished (Mother Nature has delayed the start of the home thus far and they are predicting more snow tomorrow.), shopping for furniture, getting things painted and decorated, and organizing the move in process. Lauren has become increasingly irritable lately which I am attributing to the turmoil in our home. Turmoil caused by the number of strangers coming and going - new noises and voices - associated with my mother’s care. And, there has been disruption to Lauren’s normal schedule due to staff needing to deal with the turmoil and strife in their own lives. She is not weathering this all well. There is so much change in her life recently and coming up in the months ahead. I am concerned with how she will deal with it. Lauren has a limited ability to understand what is happening, and I don’t know how to simplify the madness that seems to have descended upon us. Heck, I really don’t understand what is happening or how to deal with it either. How can I expect her to understand?

I can identify with her complaining, her need to voice her confusion and displeasure with what is happening in her life. I may appear to contain my own frustration except for the few tears that leak out every once in awhile. But I have become all too well acquainted with the little person in my head stamping her feet in tantrum at my inability to control my own life, to be able to choose the course I will follow. ....And then I think of those poor people in Japan. I’m sure they had plans too. They’ve lost so much, so very much. I still have my home, my loved ones, the acquisitions and treasures that color and inhabit my world. Instead of looking across the hills in search of the promise of spring, I could be looking in fear for radiation-infused clouds. Perspective is a valuable thing.

Finding Serenity

March 23, 2010

In my last post, I wrote about the guilt associated with relinquishing the role of active, primary caregiver for both my daughter and my mother. In the last few days I’ve been able to come to terms with much of that guilt - with a little help from a friend. Her very timely missive was a copy of a prayer that I’ve heard many, many times, but apparently I needed to hear it again. “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

I am not responsible for the situation in which my parents find themselves. I won’t share the details, but I’ve been taken advantage of for many years by my parents and I do not have to let that continue. My mother will have to accept her current state of health, much of which has been caused by her own non-compliance with doctor’s instructions, and she will have to deal with spending the rest of her life in a skilled nursing facility. My father will have to either make the necessary changes in his lifestyle or realize that family will no longer be able to help him. "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

The changes we are making in Lauren’s life right now are appropriate, timely, and well thought out. We are giving her every opportunity to live a comfortable and safe life. We will continue to guide and oversee the course of her life for as long as we are able. There is no doubt in my mind that we are doing the right thing. It is time to let go. "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

Thanks, K for always sharing the right words at the right time.

Dealing with the Guilt

March 15, 2011

My grandson was visiting last weekend. He hasn’t been at our home for two years – when he was four. I have only seen him once since he was here last because he now lives in Florida. Memphis is a quiet, shy child with a sweet smile and beautiful, long lashed eyes. He walked into the house and seemed to curl into himself in the corner of the room. Concerned, his father asked him what was wrong. His only memory of our home was being left there when his parents would have to go somewhere. He had a serious case of separation anxiety when he was little, and his parents would wait until he was distracted to sneak out of the house. This stalwart little boy would not cry when he discovered them gone. He would curl into a ball on the floor, inconsolable, taking no bribes, and he would not talk or move, sometimes for hours. I would lie on the floor next to him, just letting him know with my presence, that he was never truly alone. Now that he has returned, we find that his memory of our home is laced with fear, overcoming all memories of cookies and milk and grandparent’s hugs. He has clung to the strongest emotion he felt in our home.

I am sure that Lauren feels contentment in our home where she has only experienced wonderful care and constant love. But she is about to move into a new home now – without me. She has heard my voice and known my kiss on her soft cheek almost every day of her twenty-five years. Will she feel abandoned in this place that will take time for her to know as “home”? I have a transition plan all worked out. Over four weeks she will gradually spend more and more time in her new home along with her family and staff. Will it be enough? How do I tell her we’re doing this for her benefit, for her long-term well-being? Can she understand that, even though I may not be with her every day, I will be a significant part of her life for as many years as I have left? Even though I feel that I am doing the best thing for her in the best way I can, I feel guilty that she may feel that I’ve deserted her.

And now my mother is also receiving care in my home. I cannot continue indefinitely to provide the level of care that she requires. We’ve weighed all of our options and realize that a nursing home is the only safe, long-term option to meet her needs. In the weeks since we brought her to my home from Florida she has been enfolded in the warmth and care of her family. She is better than when she first arrived. Her pain is better managed. She is eating better and is more lucid. How do we now tell this eighty-nine year old woman that she needs to go live amongst strangers, by herself, except for visits from her family? We have to have this discussion, but I don’t even know where to start. Mom has gotten increasingly self-involved as she has aged. I know that she will not be able to see beyond what she will feel is abandonment. She will not factor, anyone else’s life or responsibilities, into her reaction. I’m afraid she will shut down and decline even faster than she is right now. Will a nursing home be a death sentence for her? If she doesn’t move to a nursing home, it will significantly affect my health and extinguish the glimmer of the life I was hoping to have once Lauren was settled in her own home. I’ve dedicated twenty-five years to providing total care for Lauren. I do not have the patience or strength to step into that same role with anyone else, even my own mother.

My role has been the protector, the caregiver, the anchor for anyone in my family that has needed me to assume that position. It is hard to admit my limitations, to balance my own need for a life, with relinquishing my life to care for others. I have lost the knowledge of who I am and what I want in order to fulfill the roles of parent and daughter. It is time for me to reprioritize my responsibilities in the lives of my family members. So much guilt goes along with that, though. So much guilt.

Caffeine and Anger

March 9, 2011

I’ve been getting through these last few days on caffeine and anger. Caffeine clears the fog out of my sleep-starved brain and anger gives me the adrenaline rush necessary to get through the day. And, there’s a lot to get angry about. I am angry at my parents for not planning, in any way, for the day that one or both of them would be sick or incapacitated. I am angry that they gave no consideration to my situation – providing all consuming, 24/7 care for my daughter for the last twenty-five years, care that will never really end. I am angry that, now that their circumstances and needs have changed so dramatically, my father is still being stubborn and difficult as we try to meet my mother’s needs.

I’m also angry at the insanity of social service systems. It is insane that we have two completely different systems and points of entry for individuals with developmental disabilities and geriatric care. Much of their needs are basically the same. It is interesting as well, that although services for the developmentally disabled are designed for individuals who will most likely not have any dramatic changes in skill level or health, services to meet the needs of the geriatric population concentrate on those who get sick and need to convalesce and those who get sick and decline rather quickly to the inevitable. They are not designed for those who linger. The services that are available disappear if you do not improve or you do not deteriorate.

I met with the hospice social worker yesterday. She provided a crash course on the service system for the elderly. A nursing home will not provide the level and quality of care that Mom needs, and that we want for her. A 24/7 caregiver would, but will probably deplete their finances in about three years and then Mom would end up in a nursing home anyway. Plus, Mom and Dad have nowhere to live in New Jersey and cannot afford  New Jersey real estate prices (remember that my husband and I need to downsize and my brother has no room.). My parents spend about $4,000 a year for rent and utilities in Florida. That is far below what it will cost to live in New Jersey. And if all of their money goes to care for my mother, what about my father? He still needs to have money to live on, and eventually, will need money for his own care.

After spending so much time over the last few years trying to find a way to provide Lauren with a home of her own where she can receive the care that she needs, I find myself asking the same questions about my mother – How can this possibly work financially? How can we provide an acceptable level of care? Does this really have to be this difficult?

Well, my last cup of caffeine is wearing off, time for a booster cup. I am not going to find the answers to my questions today. Today, I will just continue to ride the wave of anger.

Exhaustion and Frustration

March 5, 2010

This week has actually been worse than I thought it would be. I am beyond exhausted. Suffice it to say that I put my bra on over my pajama top yesterday. I’ve lost six pounds since this began. Mom becomes very groggy and unfocused on the pain meds. It is hellish to try to do a transfer with her for at least six or seven hours after a dose of medication. She can’t figure out how to move her feet, answer a simple question, or eat. Unfortunately this is also PMS week for Lauren. She is having major mood swings and is very irritable. That means that she is very noisy and vocal, doesn’t sleep well. I’m averaging about four hours of sleep a night. I’m a little dizzy with a slight buzzing in my head.

My family has been helping as much as possible this week. My sister-in-law and nieces have been coming in to help me shower and dress Mom as well as put her to bed. But the hours between are filled with bathroom trips, coaxing nourishment, and attempts to provide some stimulation to take her mind off of the pain. The doctor had the Visiting Nurse Association contact us and after some discussion they recommended hospice to meet Mom’s needs. The hospice representative spent three hours with us, a lovely woman who was respectful of my father’s feelings and empathetic with our situation. She said they could provide us with some equipment, twice weekly nurse visits to ensure the best formula for pain management and two hours, five days a week of a home health aide. Not nearly enough to meet our needs, but it was something.

Twenty-four hours later I realized that the service system for seniors functions much like the service system for the developmentally disabled – erratically and insufficiently. The clinical supervisor called to tell me that Mom was not eligible for hospice services. She never came right out and said it, but apparently she isn’t sick enough. An eighty-nine year old woman who requires total care and is in excruciating pain, I guess, doesn’t fit the parameters for hospice. Shouldn’t the woman we spent three hours with have known this? The supervisor said that they would stick with us for a couple of weeks and then probably determine that they could no longer serve Mom. The home health aide will come, but the two hours includes her travel time – they serve two large counties. They can’t guarantee what time she can come. Won’t it be helpful if she is here for all of fifteen minutes watching Mom sleep?

Tonight will probably be another sleepless night. My brother and I are going to talk to my father tomorrow about what to do next. It will be a very difficult conversation. He still thinks they will be returning to Florida – avoidance, stubbornness, delusion? I don’t know. I hope Lauren is feeling better by tomorrow; I don’t need the added stress of knowing I can do as little to address her discomfort as I seem to be able to help my mother’s.

The Long Dark Tunnel

March 2, 2011

The light at the end of the tunnel has been snuffed out. I had thought that after years of endless care, I had finally reached a different point in my life, a time when not only Lauren would achieve independence, but I would as well. But, it’s over before it started.

My parents arrived Sunday afternoon. My mother is far worse than I thought...and I thought she would not be good. The motorhome my brother and sister-in-law rented to pick up my parents arrived in our driveway on a beautiful, sunny afternoon. I jumped in to greet them, took one look at my mother, and my sister-in-law said the color drained from my face. The woman lying on the bed was like a fragile shell of the woman I had been with only six weeks before. Trying to get her out of the motorhome and into the house was difficult and painful. It hurt her even to be touched. We had to put her on a chair and carry the chair inside. She could stand for only a minute at a time and it seemed like she had forgotten how to move her feet.

How would I care for her? How could I toilet her? Get her in and out of bed? She couldn’t move herself once on the bed, and we couldn’t do it for her without intense pain. How would I do all this on top of what I’m already doing? I have two intense months ahead of me. It will be a lot of work to get Lauren’s home ready and her into it. I need to get my own home ready to go on the market. We need to find a new place to live. We want something small and easy to care for. Where will I put my parents?

After a night’s sleep, some food, and more rest, Mom perked up a little. She could move her feet if we told her several times which foot to move, but barely long enough to transfer out of the wheelchair. We took her to the doctor on Tuesday. He gave her stronger pain medication. The doctor knows me, knows Lauren, knows what my life is like. I dreaded him telling me that my mother needed to be in a nursing home, and yet, was crushed when he didn’t.

It was a long morning today. I got Lauren up, dressed, fed, toileted, and in her stander. Nancy is off today. Then with my niece’s help I got my mother up, toileted, showered, dressed, and fed. I then went to take Lauren out of her stander and noticed that she had wet through everything. I then had to change Lauren and get her settled back in her chair with her mp3. I hadn’t even washed my face yet. I had planned to get up early and get myself put together for the day, but there had been too many sleepless hours during the night when I was trying to figure out the future, come to terms with the end of the life I was anticipating. I finally fell asleep in the early morning hours.

And what about George? I promised him that after all these years of my having to put Lauren first, that his time had come. If we don’t have this time together now to travel, to be spontaneous, to simply experience freedom like we never have....when will we? George is seventy-five – it’s now or never.

There are so many thoughts, fears, and a myriad of emotions dragging me through this day that it is overwhelming. Mental exhaustion on top of physical exhaustion....really bad mix. The tunnel that I thought that I glimpsed the end of, has gotten narrower and darker than ever before.

Till the Bag Breaks

February 26, 2011

I was watching a woman in IKEA the other day, trying to push a very large down comforter into a very small shopping bag. It was a eureka moment. That bag was me! Someone is trying to stuff entirely too much stuff into my life – it just won’t fit – and its making me feel like an old bag. Ok, the last part was a bit much, but the metaphor was just going so well.

I’m running around today preparing for the arrival of my parents tomorrow. I’ve spent most of the week in bed with a migraine (gee, don’t know why...) and I’ve gotten nothing done. This coming week is going to be very full as I take my Mom to doctor’s appointments and we will be celebrating her eighty-ninth birthday on Monday.

Now that...dut, da, da, da!!! .....we have approval from the town to proceed with Lauren’s home ( a moment of thankful silence here), I have to get going on all of her plans. As I mentioned in my last post, my stepdaughter and her husband are going to visiting in six weeks and now, I learned yesterday, my grandson is coming to visit in two weeks. I haven’t seen him in a year and miss him a lot. But six year olds require much energy. I hope there is some still hanging around by then.

Lauren started the day with a seizure this morning. So, she is sleeping on and off. She’s still smiling, though. I wish I had her calm acceptance of whatever life sends her way. Right now, I’m overwhelmed with responsibility, stress, and utter fatigue. I had envisioned the months leading up to Lauren moving into her home to be filled with positive decision making, buying furniture and drapes, and making tons of lists - a flurry of activity leading up to a celebration of a major milestone in all of our lives. Instead, I fear, I will become caregiver to my mother now, and not be able to do all for Lauren that I will need to do. I was sure that the shopping bag that woman in IKEA was using would surely break before it would hold that comforter, but it didn’t. I hope the same is true for me.

New Caregiving Demands

February 22, 2011

We will find out tomorrow, from the town, whether we can proceed with Lauren’s new home. We are understandably anxious with so much riding on the decisions of strangers. After the last few months, I feel in dire need of a week on a beach staring at nothing but an occasional passing sailboat, maybe a pina colada in my hand, and the voice of a handsome island native accompanied by steel drums. Peace, pleasure, and no demands on my mind or body. Heaven.

Instead, life is about to get even more complicated, more demanding than we knew it would probably be this Spring. My mother’s health has deteriorated since I was with her in January. We are bringing her and my father back home from Florida. They will move in with George, Lauren, and I. My mother requires pretty much the same level of care as Lauren. And, she has become very confused, dementia may be beginning. There was nowhere else for them to go. Their home is in Florida. Their children – my brother and I – are in New Jersey. My father can no longer provide all of Mom’s care. My home is accessible. My brother’s isn’t. I have a spare bedroom. He does not. I fear that I don’t have the energy, the patience, to meet all of my mother’s needs. I will definitely need a lot of both.

While we deal with this new stage in my parent’s life, the rest of our life will continue with its own demands. Hopefully, we will be getting Lauren’s home, and her, ready for the next phase in her life, and we will be addressing the new challenges that I’m sure will surface before she moves in. My stepdaughter, who we have not seen in five long years (she lives in England), will be visiting in April. She has some health issues that require an accessible environment. I want to be able to make her comfortable and welcome, but I can’t even think about the logistics of that right now. My parents will need to find a new place to live, permanently, here near my brother and I. What will they be able to afford in New Jersey after so many years living in Florida? Will they even be able to live independently with the help of their family? We still have to convince them, no, really, we need to insist, that they can no longer live in Florida. And, George and I need to prepare our home to be put on the market. We need to paint and polish and, what do they call it?.... “stage” our, already beautiful to us, home. We would like to move soon after Lauren is settled.

I need to quickly become seriously acquainted with services, funding, and resources for the elderly. All these years of learning the disability system is only marginally helpful in making sure that my mother has the care that she needs. There are very few things that overlap between services for the elderly and services for the developmentally disabled. Wouldn’t it just make more sense if they did overlap? I see myself providing my mother with the same type and level of care as my daughter. Aren’t the outcomes we seek the same? Professional, inclusive community-based care in their own home or with family, access to medical care as needed, and opportunities for socialization and activities that provide quality of life.

My parents will arrive this weekend. I’m not sure I’m ready, or would ever be ready to take on yet another person who needs such extensive care. The only thing I am sure of today is that there are no island breezes, no hibiscus-scented evenings in my immediate future. I’ll see what I can do about the pina colada.

House Plans

February 15, 2011

The planning for Lauren’s house is stalled. The reason is unexpected, something, maybe the one thing, that I didn’t fear. There could have been problems with funding, finding caregivers, getting accessible housing, weather, or unforeseen health issues. Instead, we are having a problem with the town building department. We can’t get a building permit.

This has been going on for months. I don’t think I’ve written about it before because I have not been dealing with this well. I’m still not. We are not asking to do anything unusual, illegal, or new. We are not violating any codes or causing a safety issue. What we have run up against is the fallout of the current economy, and its affect on struggling towns and their employees. I won’t be more specific because there could be repercussions. We can find no grounds for what they are doing. The meeting with the town, that will determine Lauren’s future, is next week. Can you believe that with all of the issues surrounding a young woman with developmental disabilities being able to begin an independent adult life, that this is what could ruin her chances?

In the meantime, I feel like I’m in a kind of limbo. I’m afraid to continue with the planning for Lauren’s move. I had wanted to spend these cold winter months accumulating things for Lauren’s first home, nailing down caregiver schedules and duties, buying new towels. But, I don’t feel that I can do that. What if everything falls apart? This should have been the easy part. But instead, we are stuck. We are killing time, waiting, dependent on the actions of people who should not even be part of this emotional, exciting time in Lauren’s life. But we can not wait too long. One of the critical pieces of Lauren’s housing budget is obtaining a state rental assistance voucher. We were prepared for that to take awhile, even a couple of years in this economy. But wonder of wonders, she has gotten a voucher already. She needs to start using it by a specific date. The voucher could be in jeopardy if we cannot proceed on our original timeline.

I try not to think about it too much. I complain about the winter from hell that we’re having. I’ve started playing video games. I’m cleaning the basement. I try to have faith. We are doing the right thing. Lauren needs to take this next step in her life. This feels like the right way to do it, the right time to do it. It's just so important for us to get on with the doing of it.

A New Diaper Supplier

February 8, 2011

I know, you’re saying, “Alright, alright, enough already.” But really, just once more, I promise. I have to talk about the diapers. It just gets better and better. After being dropped without warning by our supplier of two months, I had to find another supplier. After a couple of phone calls I was able to get in touch with a provider. We will need to start all over again with new prescriptions, approvals, etc. The supplier voiced the concern that the authorization with the previous company would need to be cancelled or we would not be able to get approval for the new order. “What do I need to do?”

“Maybe call the doctor.”

Mmmmm, don’t think so. If you’ve dealt with doctors and Medicaid, you know that they’ll never take the time to get involved in this.

“Well, maybe you’d better call Medicaid.”

Ooooo, that sounds like fun.

I called one of the numbers on the back of Lauren’s Medicaid card. It was answered by one of those endearing “press one for this, press two for that” messages. I listened to it all the way through. Nothing related to what I needed to talk about. So, I pressed 0. And....the message started all over again. I picked the number closest to what I needed in the hopes that a human could direct me correctly, only to be met by yet another recorded message directing me to call yet another number. So, I called it. You guessed it, another recording. I selected a number and, lo and behold, a human answered. After I told her what I needed, I got silence. Then I was transferred to another person. I told my story again. More silence. Then I was transferred to another person. She gave me a new phone number to call. Persevering mother that I am, I dialed it. It was answered by.... no, no, wait....a real person....on the first ring! Alanda told me that I really didn’t need to do anything. The coding of the order would show them that there was a new supplier and there wouldn’t be a problem. Without a great deal of confidence in her response, I thanked her and reported her response back to the new supplier.

Now if you’ve been following the diaper saga since last spring, you know we’ve done a lot of waiting. We submitted the first prescription for diapers in April and now in February have only received orders for two months. So, now that we have to start the process all over again, I figured we would once again be waiting, so I went out and laid in a new supply of Depends. While I was speaking to the new supplier she had said something about getting an order right out. But, I concluded that I had misunderstood her while I was busy giving her size, insurance, and delivery info, trying not to forget anything. I was just so happy to be speaking with someone who was trying to be helpful and almost seemed to know what she was doing, that I didn’t question her. She said that when they received approval, they would deliver the first order and after that the diapers would be sent by UPS. That will be a luxury after having to make repeated calls in order to get the two orders that were delivered by the first supplier.

The next morning I received a phone call from a delivery person asking if I was going to be home to sign for a delivery of THE DIAPERS!!! Oh my. Does this mean that we did not have to wait for eight months for our first delivery with the first supplier? Is this further evidence that the first supplier was beyond clueless? All I am sure of is that the process with the new supplier was sooooooo much easier and faster. Hopefully, now I can make good on my promise that you will never hear another word on this subject in the blog again!

Diaper Issues.....Once Again

February 1, 2011

It’s probably beginning to appear that I’m like a dog that won’t let go of a bone with this diaper issue. But I am totally amazed at the time and trouble involved with acquiring this very simple, very necessary product. Once again, I had to call the supplier to inquire about our order which should be delivered once a month. The reply this time – “Oh, as of the first of the year, we’re not carrying diapers anymore.” I asked why I wasn’t told of this earlier. After being put on hold, I was told that I didn’t return their call. .....I never received any calls. Their response was basically, “Oh.”

So, now I’m back at square one. I called the only other medical supply company in the area yesterday, but they are closed on Mondays. It took eight months to get approval through the first company. Am I going to have to start from scratch again? I don’t know.

Pursuing Happiness

January 28, 2011

The other day, I was watching a program on how to become happier. Two of the main points made were that the more connections that you have with people, the happier you will be, and that experiences rather than acquiring “things” will lead to more happiness. I was struck by how often the life limitations of caring for an individual with developmental disabilities prevents those two things from happening for both the individual with disabilities and for their family members.

After Lauren was born we lost many friends to whom we could no longer maintain the activities and interests that bonded us. We didn’t make new friends like many new parents do when their children join the soccer team or take dance classes. We seemed to become more and more isolated over the years. I remember going to a church picnic and sitting, ignored, like three lumps on a log, while people were running off to participate in games and other activities.

We didn’t sit home and do nothing, though. We bought a motorhome and traveled to forty some-odd states with Lauren. But, then Lauren just got too big to handle in the confines of the motor home, and I was ending up bruised and exhausted at the end of each trip. We took Lauren skiing at an adaptive program in New York State. She absolutely loved it. I would stand at the bottom of the hill, freezing to death, waiting to check her after each run. She didn’t care how cold it got; she just wanted more and more. Unfortunately, Lauren developed ealry onset osteoporosis as a side effect of seizure medication and could no longer risk skiing.

So, now we are coming to a turning point in our lives. Lauren is about to embark on the next phase of her life and so are George and I. As we continue to explore ways to expand Lauren’s horizons and opportunities, we realize that we must do the same for ourselves. We hope to travel to some places we have been unable to visit due to Lauren’s limitations. We hope to be able to accept some of the invitations that friends have proffered over the years, but we have been unable to accept. And, we want to try some new things, together. George likes to fish, and golf, and ski, all of which, up until now, I’ve sent him off to pursue while I hold down the fort at home. He would prefer that I do those things with him, at least some of the time.

So, as a leap of faith, an attempt to add an “experience” to my life, I told George I’d join him on his latest ski trip….and take a lesson. One of the reasons I didn’t even consider trying sking before was the fear of injury. If I was injured, how would I take care of Lauren? At least now, we have people who can take care of Lauren if I ski off of a cliff or something.

If you know me well, you know that I don’t like the cold, or heights, or doing anything where I am not in control. So, this was a major leap of faith…far out of my comfort zone. As soon as I told George I would take a lesson, he called and made a reservation for me. No backing out now. My instructor’s name is Frosty…aw jeez.

I called a friend who knows the ski area well and she knows Frosty. She told me that she is a dynamic young woman and I’d do great. So, I psyched myself up and got out my woolies. The big day arrived and George guided me through renting equipment and getting organized. I felt like a mummy wearing Frankenstein’s boots. I clumped myself over to the ski school and waited….and waited. No Frosty. I guilted the clerk off of her phone call with her boyfriend and asked where my instructor was. “Oh, Frosty’s not even on the mountain today.” OK. Now what? Mmmmmm, could this be my out? “Aw, shucks honey, There wasn’t anyone to give me a lesson, so…..” The clerk called a gentleman wearing a ski school jacket over and asked him if he could do a lesson. He agreed. And that is how I had my first ski lesson with eighty-one year-old Alpine Jack.

Jack was a quiet little man who did not endear himself to me by asking me if I had any grandchildren. I actually think Jack is just looking for something to do to get him out of the house because he seemed a bit clueless on how to give a lesson. “Follow me down the hill.” is not what you want to hear while you have two sticks attached to your feet with no idea how to control them. I managed to figure out a few things on my own, like when one ski crosses another, you fall. And, the bunny slope is more slope than you might think. Most importantly, embrace the snow plow, it will save your life. Alpine Jack’s one compliment was that I was good at riding the lift. Enough said.

So, now that I’ve added a new experience to my life, am I happier? Well, I’m proud of myself for not chickening out. I spent a lovely day with my husband, minus the hour with Alpine Jack. And, in those few moments in which I managed to glide smoothly, effortlessly, over pristine, white snow, I caught a glimpse, a fleeting glance of the allure, the promise, that strapping two sticks on your feet and pointing them down a mountain could possibly, just possibly, result in sheer glee.

An Unexpected Trip - Home

January 25, 2011

It’s now been a week since I returned from my parent’s home in Florida. I’m still catching up on chores, and bills, and Lauren’s needs. The bonding, which the dentist used to repair Lauren’s tooth while I was away, has somehow come off. I scheduled another appointment which then had to be cancelled due to the ice storm on Tuesday. We now can’t get another appointment until February.

I had only been home for two days when my father called to ask what to do for my mother who had had a bad night and was now experiencing pain in a different area. I have nothing to tell him, nothing to suggest. This seems to be a chronic problem. Pain meds don’t seem to help very much. I checked on them again a few hours later and Mom was doing a bit better.

I find myself so torn right now between fearing that my parents won’t agree to move back home and fearing that they will. I can’t provide the care that they need from a thousand miles away. Yet, if Lauren is successful in moving into her own home in the spring, it will be the first time in twenty-five years that I will not be a primary caregiver. I will finally be able to give my husband my attention – he has had to take second place in my life for too long. It’s not just that though, I know that I need a break. I watch my reactions, my resiliency to the stresses and challenges in life and its obvious that I am not handling things well, or as well as I should. I seem to be “losing it” a lot more lately. What used to be bumps in the road now seem more like cliffs. Which one will be the one where the fall is too far to get back up again?

There seems to be so much to worry about lately. I worry about the ups and downs and details of Lauren’s move. I worry about the economy and the state of our world in the years to come. I worry about how long my eighty-seven year old father can hold up providing this level of care for my mother. He’s amazing - healthy and sharp. But he’s getting tired – I understand that. He’s usually all alone with the problem – I understand the fear of that. They are no longer active in the neighborhood, ready at a minute’s notice to go out with “the gang”. So, they have been left behind, isolated and forgotten – I understand that too. Over the years, Lauren has tried to participate in programs, camp, extracurricular programs, but her ability to participate is affected by of her challenges and she would end up on the fringes, excluded, isolated from the mainstream of activity. So now, she has caregivers and no friends. Just like my parents, she goes shopping, to her appointments, and watches TV. But she has people who care about her always hovering near. My parent’s do not. My father puts up a good front, but I think he is beginning to worry about how long he can keep this up, too.

And so these cold winter days seem to hold us all in limbo, everyone holding on until the next change in circumstances, the next crisis, the next bump in the road, never knowing if it will indeed be a bump....or a very scary cliff.