A New Hire, Thank Goodness!

September 30, 2010

In my last post I told you about having to terminate one of Lauren’s caregivers. That left us without a second shift caregiver. I thought, “Here we go again!” Searching for and training caregivers is probably my most dreaded part of self-direction. The advertising, screening, interviewing, and leap-of-faith final selection is very stressful. Then there’s the training. Since most of Lauren’s caregivers come to us with little or no experience, the training can be a lengthy, draining process.

However, I have good news! Remember the substitute caregiver that I just hired? Well, I offered her the position and she has accepted. And, she has been working in the field for some time now and is already trained. So, I only have to train her on specifically caring for Lauren and not start from scratch with Caregiving 101.  Thanks goodness!

Of course, this leaves me, once again, searching for a substitute caregiver. But, while Lauren is still home with us, I can deal with not having a substitute. When Lauren is out on her own, having a substitute will be a critical part of her staffing. Fortunately, I have until next spring to make sure that particular piece of the puzzle is in place.

Listen to Me

September 28, 2010

Lauren has been trying to tell me something over the last few weeks.  I wasn’t listening.  I was hearing, “I’m grouchy” “I don’t know what I want.”  I’m not feeling well.”  Instead of “I’m not being taken care of the way I deserve to be”,   “I’m lonely”,  Why is she being mean to me?”  Because I couldn’t face yet another caregiver search I was trying to make allowances, trying to put up with deficiencies of the hire we did last spring.  I just needed to get through the next few months, even a few weeks, I had things to do....then I’d take some action. 

Last week I realized that Lauren’s current unhappiness had nothing to do with her, and everything to do with the caregiver.  It had become obvious that this person simply didn’t care and could not be trusted with Lauren.  I did not wait one more day.  I took the action needed.  I went in to Lauren after I put her to bed last Thursday, leaned over her and said, ‘I’m sorry, honey, you won’t see her again.”  She looked up at me and smiled.  From that moment, her whole demeanor has changed.  Lauren has been happy, calm, delightful.  I’m sorry that it took me so long to hear her, that I made excuses about her “behavior” instead of respecting her stridently voiced request for relief from poor care.

Letting Go

September 23, 2010

The sky was blue today. That deep azure that makes you think that you really could understand infinity. The chalk marks of cirrus clouds just above the horizon were unthreatening reminders that nothing is perfect. Letting go of perfection has always been hard for me. I’m a neat freak, don’t like surprises, and plan everything out to within an inch of my life. You’ll have noticed that I’ve been regaling you with the nuts and bolts of Lauren moving into her own home, but I have not mentioned the emotional aspects. I have budgets, and caregiver charts, and tiny pieces of cardboard cut to scale, representing furniture pieces, that I can wiggle around on the house plan. But I haven’t talked about letting go.

Every once in awhile I allow myself a little daydream about what it will be like to wake up in this house without Lauren being here. I can’t even write that sentence without tearing up. How quiet the house will be. As I explore the thought, I pull my mind back to the present as the perceived reality is too distressing. How can I be so excited and relieved that Lauren will be getting her own home and so anxious and troubled at the same time?

I know I have dealt with the challenges that Lauren has by trying to make everything else about her life perfect. I control how she dresses, who caresfor her, where she spends her time, and what she does there. This is just as much for my sake as for Lauren’s, a need to make perfect what can never be perfect. It is time to separate my needs from hers. I will still be able to watch over and guide her life within the parameters of housing and care that we are setting up. But the level of control that I have now, has to end.

I am coming to terms with the fact that Lauren’s life can be richer if I allow her to experience life through eyes other than my own. There’s that saying about giving your children roots and wings.  I guess I’ve always considered an inability to use those wings to be another of Lauren’s challenges. I need to be the air beneath those wings instead of holding her so close that she cannot spread them. Over the next few months I’m going to be working on changing my perception of what needs to be perfect in Lauren’s life and at the same time...maybe take a look at my own.

          Ring the bells that still can ring
          Forget your perfect offering
          There is a crack in everything
          That's how the light gets in

                                     Leonard Cohen "Anthem"

Substitute Caregiver - Hired!

September 21, 2010

I’ve hired a substitute caregiver! I had kind of given up after my futile efforts to find someone in August. But, thanks to N’s great people skills, she told the right person about my search, and that person told her about another acquaintance of theirs who was looking for some additional hours. She’s already a caregiver, having been in the field for years, and specifically with the developmentally disabled in the last year. I interviewed her last week and hired her on the spot. During the interview she was talking about how much she loved her work at a day program. She said, “When parents are dropping off or picking up their children and I see the love that they have for their children.....how can I not provide the best care I can for that individual." Wouldn’t that be music to any parent’s ears?

C starts next weekend. I’m looking forward to having her with us. And, I realize how often, when I embark on training a new staff member, I am just dreading the training phase. Part of that dread comes from the uncertainty I have about the person I’ve hired. Part of it comes from the fact that new hires seldom have any experience so you’re starting from scratch. Part of it comes from the guilt, however irrational, that I have to ask someone to help me care for my child. So, is it any wonder that I’m actually looking forward to C working with us? N has known her for years, C is trained and experienced, and I know that she understands the very special love that a parent has for a child whose needs far exceed a typical child's and will never end.

The NJ governor’s office put out a proclamation last week naming it Direct Support Professional Recognition Week. The proclamation notes that the demand for more DSP’s will increase by thirty-four percent in the next decade and that there will be one million new positions available by 2016. In an effort to recognize DSP’s as true professionals and support not only their needs but encourage workers to enter this field, New Jersey has introduced the College of Direct Support. The College will offer an opportunity to gain the knowledge and skills needed to provide appropriate care and to be certified in that care. This is the first step toward building a competent, well trained staffing pool. I look forward with hope to the day that I do not have to dread the task of training yet another person who is not doing the job because they want to, but rather, because they are waiting till something better comes along.

The Plan for the Future - Care

September 16, 2010

No matter how creative we are in developing housing for Lauren, if she doesn’t have competent, loving, respectful care – 24/7 – her needs cannot totally be met. Lauren has spent twenty-five years in a loving home environment. Her care has either been provided by her parents, or caregivers overseen by her parents. In order to build a care “network” around Lauren that will provide the same level of care in my absence, it will have to have certain qualities.

It will need to be Stable – Lauren ‘s care requires physically handling her, performing very personal tasks for her, understanding how she communicates, and understanding her need to have the caregiver help her live her life. There cannot be undue turnover in staff and her staff needs to work as a team.

It will need to be Respectful – Lauren is a daughter, niece, granddaughter, cousin, and friend. But most of all, she is an individual who deserves the same respect and consideration that every citizen in this country deserves. She has always been included in her community and must continue to be allowed to live a life where she is valued.

It will need to reflect Love – The care that Lauren has received all of her life has come from a place of love. She is and will always be my baby. I watch my eighty-eight year old mother with my sixty-three year old brother and muse, “Wow, she still thinks of him as her baby!” Intellectually, of course, we know differently. But, emotionally, the love that we felt for our babies never changes. Maybe, for those of us whose child never outgrew many of the care needs that they had as infants, we feel it even more. Even if her caregivers do not love her as I do, their care of Lauren must reflect the knowledge that she is loved by others.

I need to build a care network around Lauren that will be successful in my absence. Oh, I will most definitely still be around. But, the network must be developed bearing in mind that I won’t always be around. I feel that the quality and security of Lauren’s care thus far reflects my constant oversight and influence. I need to replicate that. One person came to mind that had all the qualities and skills necessary – Lauren's current first shift caregiver, N. But, we needed more than just a caregiver, this person needed to be someone who could share her life, oversee the quality of her care, and basically be my surrogate.  N has agreed to take on this role. And, N comes with a bonus – her wonderful husband, L – who Lauren adores. N and L are in a place in their lives where they are ready for a change and have agreed to move into Lauren’s new home and be her housemates.

N will continue as Lauren’s first shift caregiver, do some overnights, and supervise staff and Lauren’s home. Lauren will continue to have a second shift, and weekend caregiver. And, we will add an overnight shift a few nights a week. Even when Lauren is sleeping well, you do not sleep as you need to because you are listening for sounds of a seizure or distress. I will never ask anyone to do what George and I have done for twenty-five years – sleep with a baby monitor every single night. L will join in Lauren’s care as he oversees the “mechanics” and care of her home, and will continue to be her supportive “buddy”.

Putting together all of the pieces of Lauren’s future, for the most part, has taken creativity, knowledge, and a calculator. However, finding the perfect someone(s) to step into this very special “housemate” role took far more.  It was nothing short of a blessing, a gift, a touch of grace that has so infrequently been part of Lauren’s life, that we found who we needed,  already a part of our lives.

The Plan for the Future - Housing

September 13, 2010

Today I’m going to write about the housing portion of Lauren’s future. Over the years, every scenario we had tried to put together had problems - too expensive, too prone to fail, not sustainable. They just didn’t work. If she bought (or we helped her buy) a home, the cost would be exorbitant – mortgage, taxes, utilities, insurance, repairs, etc. We could help her for a few years but not for the rest of her life. Or, if the state determined that she was in immediate need of a residence change, her budget would be increased so that she could rent a provider-owned home, which they would manage and staff, but that would mean giving up a lot of control and choice. Or, she could rent a condo or apartment, but in our area condos are usually in a townhouse format (bedrooms up) and the few apartment complexes that would be safe for her, were not built for accessibility. The future did not look promising – it just looked downright scary – impossible – a life unsupportable without parents who would not be there to protect and provide for her forever.

But there was an answer, it just had never occurred to us before. We are partners in a mobile home park. Mobile homes are owned by their residents, and the piece of land on which they sit, is leased. When we started to consider the scenario of Lauren living in her own mobile home, the pieces, this time, fell into place. Because we own the park, we can purchase Lauren’s home at our cost – a substantial savings. The mobile home of today is a far cry from those of years ago. They look like a nice ranch-style home, and can have eight foot ceilings, sheetrock walls, and even fireplaces. Leasing the lot is reasonable and includes property taxes, water, sewer, and garbage. Lauren’s income will not cover all of the rent (mortgage plus lot lease) and the other expenses of her home at this time, but it will cover part of it. We will need to help her for a year or even a couple of years until she can get a subsidy from the State Rental Assistance Program (SRAP). When she gets the SRAP, she will need to pay twenty-five percent of her income towards her rent and the subsidy will cover the rest of the rent. She will then have income left over to pay her other housing expenses. (The cost for caregivers will be covered by her self-directed supports.)

Once the financial details were worked out, we needed to make sure that we could get a home for Lauren that would fit her physical needs. I designed a home that would have three foot doorways, four foot hallways, an accessible bathroom for her, and an open plan living area (lots of room to maneuver). The home also includes a separate suite for a caregiver (more about that in my next post). A ramp will allow Lauren all-weather access to a garage for her van and lots of windows will make for bright, well-lit rooms (Lauren is visually impaired.). We took the plans directly to our manufacturer. They accepted the plan and will build the home as designed. They have been extremely helpful in working out all of the details from a special roll-in-shower to pocket doors instead of swinging doors in some locations. We have selected the perfect lot in the park to place the home on and are working out all the elements that will make living in and around the home accessible for Lauren.

I think this will be a happy place for Lauren to live. She will have a home designed just for her. She will be in a safe, secure environment. She will be even closer to shopping, parks, her doctor, and her pharmacist than she is now. But even with this perfect housing solution, the plan for the future would not work without the very critical piece of providing for Lauren’s 24/7 care needs. In my next post, I’ll talk about how we figured out that very vital part of her future.

The Right Thing

September 10, 2010

Figuring out Lauren’s future as an adult has taken many twists and turns over many years. The only consistency, and ever present cloud, was the ongoing fear of the unknown. We just couldn’t wrap our minds around what her future would look like. We knew what we didn’t want for her – a life where choices were made without her input, a life of few choices, a life drastically different than the safe and secure one she has lived thus far. We just could not figure out what, exactly, that looked like.

Not to get all poetic on you, but as I mentioned in my last post, one day it was just there, right in front of us, like a vague, ephemeral mist suddenly coalescing into a clear picture. It was so clear, so right, that putting together the major details literally took two weeks. The major details were: where – Hillside Estates at Franklin – our mobile home park in a home that I have been able to design specifically for her, how – in a life-sharing arrangement – her caregiver of three years and her husband have agreed to live with Lauren and share her home, when – in about nine months (the winter weather is going to delay us a bit).

Putting this all together required us to figure out two main things: housing and care. In my next two posts I’ll go over the details of both, the questions that had to be answered, and how or why we made some of the decisions that we did. The thing that has surprised me the most in this process is this feeling of doing “the right thing”. After so many years of absolutely nothing feeling “right”, of thinking that probably nothing ever would, of trying to face the reality of settling, some day, for a future for Lauren that was not all we wanted for her, we now have something that fits into our dreams for her. Is it going to be problem-free, perfect? Of course, not – none of our lives are. But for the first time since we realized our precious baby girl was going to have a very difficult life in front of her, when I cry – they are tears of joy, gratefulness, and relief.  I really think this is going to work.


September 8, 2010

Today is a major milestone in Lauren’s year – it’s her birthday. She is twenty-five today. Today is a much smaller, but still significant, milestone in my life. I started this blog exactly one year ago today. And, this is my one hundredth post. I had great hopes....but I didn’t know if I’d have enough to write about every week for a year. Apparently, caring for Lauren offers a great deal of material and subject matter. I have had a few faithful readers, others who drop in now and again. And, amazingly, readers who have stopped by from over thirty countries and most states. Thank you to all who have walked all or part of last year’s journey with me. I had originally planned to close my blog after a year, but I find that recent developments will be providing me with a new destination on this journey and much more to write about. Read on.

What does pretty much every twenty-five year old still living at home, dream about doing? They want to move out of Mom and Dad’s home, right? In the next year, Lauren will be doing exactly that. Are you surprised? I am! If you’ve been following my posts, you have some idea of how the question mark that was Lauren’s future has been an ever present, ever worrisome, fear- inducing companion of my days. We have, over the years, come up with every conceivable scenario and possibility for Lauren’s adult life – the day when we could no longer be her primary caregivers. Now with that day, for all intents and purposes, here – we still had no answers. A couple of weeks ago, unexpectedly, the answer was suddenly right there. My husband and I were driving along noticing the plethora of for sale signs on houses in our area and discussing the feasibility of us/Lauren/her trust buying a house which would be hers to live in with caregivers. Could we get some type of special mortgage? What about all the other associated expenses like electric, taxes, maintenance? How could we possibly cover this all? We had met with people seeking the answers to these questions and usually just came away with more questions. Nothing seemed feasible, manageable, sustainable. And, that was the critical piece – sustainable - what wouldn’t just work today or five years from now, but would still work twenty-five years from now? Then it suddenly came to me – THE PARK! We own a mobile home park – manufactured housing community – in a nearby town. To us it is a business that we’ve run for about thirty years. It just never dawned on us that it could also be the answer to Lauren’s future. There are many reasons why this will be the answer to all of the parts of the equation, which is Lauren’s future, that never added up before. Over the next year I will blog about the process and progress of building Lauren’s future. And, I ‘m sure there will be emotional hills and holes to explore. It’s going to be a very exciting year. I hope you’ll stick around and find out how everything works out.

The Too Quiet Complaint

September 1, 2010

Somehow in the evolution of the human species the tendency to complain – about everything and everyone - has become stronger than the tendency to do anything about the something of which we complain. How often in the grocery store or the coffee shop do you hear people bemoaning the current state of our economy, national policies, or political climate? How few people do you see acting on their dissatisfaction? The same is true in advocacy for individuals with developmental disabilities. Parents stop me in Wal-Mart to complain about the lack of services or they call me to bemoan how, when, or why they can’t get the help they need. But do they speak to people who can actually do something about it? No. Do they write letters or go to meetings? Very few do. So, decisions are made, programs are designed, rules are written, all by a chosen few in power who, usually, are not family members of individuals with developmental disabilities.  They have no life experience to guide their actions. The silent majority do not realize that their silence is very loud, very powerful, very obvious. It shapes and guides the decisions that are made about the very things of which they complain, all too quietly.