A Revelation

September 18, 2009

Over the last week, we've had a houseguest.  Heidi is an old friend and a "physiotherapist", what we would call a physical therapist, in Denmark.  We haven't seen Heidi in about seven years - since Lauren was smaller and lighter.  Lauren received PT all through her school years...in school.  No one ever came to the house and said this is how to do this or do that.  We just figured out things the best we could as she grew.  Lauren has been receiving PT at home twice a month since she left school.  The therapist comes to us via a home health agency and Medicaid.  Her physician has written prescriptions for physical, occupational, and speech therapies.  But, we have only been able to get PT provided and at a frequency far less than the prescription indicates.  I shudder to think of how much Lauren's physical condition would have deteriorated if she was not receiving at least this much therapy and try not to think about how much better she might be if she was receiving all of the therapy the physician advises.

The therapist who had been coming to our home for the last two years (we have a new one now) saw Lauren's environment and watched us do transfers and utilize equipment.  We were never told, "There's an easier way", or "That needs to be adjusted."  Since Heidi arrived she has gently guided us into signifiantly easier methods of doing transfers, and adjusted equipment.  None of the changes themselves were dramatic - just the results.  I also believe they will ultimately result in safer transfers for Lauren.

How often as parents of children with developmental disabilities have we had to be the "experts" in areas we really know little or nothing about?  How often would our children have benefited from the help of someone who could, with respect for our singular knowledge of our own child, have offered knowledge or assistance in meeting their needs?  This past week has been a revelation in gaining knowledge in easier, safer, and smarter ways of meeting Lauren's physical care needs.

This not only benefits Lauren but has an impact on the health and safety of everyone of her caregivers.  I sit here with an ice pack on my back and concerned that I will not be able to make it through the outlet mall that Heidi is all excited about visiting tomorrow, (prices in the US seem to be about a third of what they are in Denmark).  I really don't want to disappoint her.  I did not have to be in this pain.  If a competent PT had spent even one day every year, or, be still my heart, every six months, with us as a family, we may have been handling Lauren very differently.  My, now chronic, back pain might not exist.  It would certainly have prevented the necessity of doctor's visits, x-rays, MRI's, chiropractors, and my own physical therapy.

Beginning the Caregiver Search

September 15, 2009

When we need to find a caregiver I usually place an ad in our local (county) paper. The ad would read something like this:
 "Charming young woman with disabilities seeks caregiver/companion. Upbeat, reliable individual will enjoy working in easy going family setting. Mon - Fri., 3 to 10:30pm. Personal care and lifting required. $/hr. Call xxx-xxx-xxxx."

That size ad will cost about $35.00 per day to run. I've explored advertising in papers other than our local one and ran up against exorbitant classified fees. It seems that you need to buy a "package" which includes a 30 day online listing. I don't want an online listing. I find that people looking for this type of position are either not very computer literate or do not own a computer. And, if people do use the online listings, I don't want to be answering the phone for 30 days. I called one paper to request "just a little print ad for one Sunday" and was told that they don't do that. If I want to buy the package, it's $300 - $400, depending on the paper.

I've checked out websites for caregivers such as http://www.rewardingwork.com/ and http://www.care.com/ but they don't have many or any listings from our area and require subscriptions which would seem to be a waste of money for us since they do not tend to serve our area.

 I also make up contact cards with information on the position. George, Lauren, and I hand out cards wherever we go - hairdressers, doctor's office, friends, etc. On the contact card I list a website that I started for Lauren called "All About Lauren". It is a very basic, not very well designed, but very informative few pages on who Lauren is, what her life is like, and what her caregiving needs are. It includes pictures and available job listings. Google hosts the site for free and it helps someone who may be interested to get a better picture of what the job would entail. We did have one applicant from this approach this time but she was not appropriate for the position.

Another option are job websites run by various ethnic groups. One example is a Polish website, http://www.bazrynka.com/ This particular site is used mainly by people in New York City and areas near the city in New Jersey. There are ads from all over, though. I have talked to some truly lovely people whenever I've placed an ad (free) but ...well, my last experience kind of sums up how well this site can meet our needs in the remote area of New Jersey that we live...

After a very frustrating day of phone interviews and in-person interviews that turned up no viable candidates, I decided to try Bazrynka once again. I had placed an ad a few weeks before and gotten no responses at all, but what the heck, I'll try it again. Couldn't hurt right? Keep reading. Now, remember we live in Northwestern New Jersey. There is no mass transit to speak of, a few infrequent buses in and out of the city in a couple parts of the county. Nothing closer than a twenty minute drive. I, very carefully, noted in the ad where we lived, that there was no mass transit, what the hours were for the position and that applicants must be legal and speak English well. Before nine o'clock the next morning the phone started ringing, and ringing, and ringing. By the end of the day I had over twenty responses. Unfortunately, none seemed to have read anything in the ad besides "caregiver". So...I spent the whole day telling some very nice people that, "No, having a passport does not mean that you are legal to work", "No, you cannot get a bus from Queens, Jersey City, Watchung, etc." and "No, this a Monday through Friday position - not a weekend position."

All of our hires since we started Real Life Choices have found us through the ads in our local paper except for this most recent one. We found Cori through her Mom, a respite worker for us for many years. When you hire anyone to work for you, they bring not only their talents and experience but also their personal issues and baggage. When you hire someone you don't know, you have no idea how their personal life may or may not affect their ability to effectively perform their job. That's true no matter what you're hiring someone to do. When you hire someone you know (we've known Cori for about 15 years), there are fewer chances for unpleasant surprises. You have a much better idea of what you are getting into. On the flip side, one of our other caregivers, Nancy, who we did not know before we hired her,has an adult daughter with physical disabilities. Because of this Nancy brings personal experience, understanding, and "accessibility" to her position in a way we had never experienced. Lauren can visit both of their homes because they are accessible. This has greatly increased Lauren's social capital. Most private homes are inaccessible to Lauren, including all of our own extended family.

So, no matter how you find your potential candidates, there will always be much to consider. Know your area, stay connected with your community, and mention your search to everyone that you think could be helpful...even a few you may not ordinarily consider. You may be surprised that the lady behind the deli counter that cuts your turkey just right, may want to help.

An Evening with Lauren

September 14, 2009

Over the last two and a half months we have been without an evening caregiver. It is exhausting to physically provide all of the care Lauren needs during that shift, while still performing all the other duties that make up my life. Let me give you an example of what I mean. My husband and I were providing all of Lauren's care between 3PM and 8AM. Here is a typical day:

  • Lauren arrives home at 3PM from her day activities. She needs to be toileted, her orthotics and shoes put on, and then she goes into her stander for an hour. You have to stay in view of her and be attentive to her requests (complaining noises) for TV channel changes, different music, dropped turtle (you'll meet Mr. Turtle sometime on this journey), etc.


  • Then at 4pm she comes out of her stander and into a recliner where she watches TV or listens to music. She stays there until 6pm. during that time you, again, need to respond to her requests, and spend some time being companionable on and off or she gets lonely. Prepare her lunch for the next day and her dinner for tonight (Lauren doesn't chew - all foods need to be mashed or pureed) and prepare dinner for George and I.


  • At 6pm Lauren needs to be fed, we eat afterward, and clean up.


  • It's now about 7:15 and Lauren needs to be toileted and to have a shower. After the shower I do range-of-motion exercises with her and return to the recliner.


  • Now at about 8:15 we watch some TV together for about a half-hour before its time for Lauren's snack. Back into the wheelchair she goes, has snack, and then needs to be toileted again.


  • At about 9:15 she's probably watching something like American Idol or Dancing with the Stars and is happy and still full of energy as she goes to bed at 10:30pm. Luckily, she quickly falls asleep.


  • At 11:30pm Lauren has a seizure and is shaky and unsettled until she finally falls back to sleep about 1am.


  • At 5am Lauren has another seizure and doesn't fall back to sleep until 7am.


  • I then have to get her up at 7:30am because she needs to have breakfast so that she can take ten pills of two different medications for seizures.


  • Now the seizures have wiped her out and she will sleep on and off till around 3 or 4 o'clock, so today's schedule is wiped and we're into whatever Plan B may be for today.

During that seventeen hour period I did eighteen transfers and got 4 hours of sleep. George is here to help when he is home. George is in his seventies and looks great for his age, but he does not have the strength or energy he once had, still works full time, and has back problems. He has often been called on to be the primary caregiver because I was dealing with ever increasing migraines lasting seven to ten days. Now, I, too, have back problems -a chronic herniated disc - from years of lifting and carrying Lauren.

George mentioned last night that we are a "life support system" for a 24-year-old. And, he's right. Our lives are devoted to Lauren and have been for 24 years. We have rarely taken a vacation, especially as Lauren got older and larger. We have lost friends who stopped calling when we could seldom go out. Our extended family stopped participating in providing care as Lauren grew. Our lives revolve around Lauren's needs and Lauren's care. Now that George is in his seventies, we desperately want to do at least some of the things we have set aside for so many years - before he gets any older. But, we cannot do those things unless Lauren's care is stable. We need caregivers who are interested in making a long-term, serious commitment -professionals. That is the type of caregiver required in order to provide a young woman with Lauren's level and complexity of disability with a stable and safe life. I hope with this most recent hire that we will have achieved stability. How long it will last? For all our sakes, please let it be a long time.

The Caregiver Search

September 11, 2009

We have recently been searching for someone to fill one of our three staff positions. We did not have an easy time finding someone despite the unemployment that is reported to be at its worse in thirty years. Not having stable staff seriously impacts Lauren's well-being and, at this point in our lives, the well-being of George and myself. One of the reasons that being able to access care through the self-direction program is so critical for us is that neither George nor I are as capable physically as we used to be. And, we no longer have the energy needed to meet all of Lauren's physical care needs.

When looking for caregiver, you may hire from an agency or self-hire. If you self-hire, as we do, you will need to advertise in some way, screen, interview, and select a caregiver. That sounds easier than it is. I have had anywhere from 20 to 99 applicants from one newspaper ad. We had at least 90 applicants, from several ads and other sources, during this particular search. Unfortunately, after two and a half months, we found that the current job pool does not seem to have very many people available from the segment of the pool that is interested in and suited to this type of position. Most of the people that applied either gave us no confidence that they would be a reliable and appropriate caregiver or they were looking for their second or third jobs. I don't feel it is right for someone to work a full day somewhere else and then come to Lauren for another seven to eight hours. The particular position we needed to fill requires about eighteen transfers between 3PM and 11 PM. It is not a difficult job, but physically demanding, and you need to have energy left at the end of the day. And, Lauren is hiring someone to provide not only care but companionship as well. That person cannot be someone who is too exhausted to interact with her.

Over the years we have selected wonderful caregivers and terrible caregivers. I have refined my advertising and recruitment attempts and improved my interview techniques. I have alternately encouraged myself to be more open-minded (don't judge the piercing, tatooing, or tank top and flip-flop interview outfit) and I berated myself for being gullible. You want to be extremely careful when you are hiring someone to work in your home, but no matter how careful you are there are no guarantees. It comes down to relying on drug testing and background checks and then listening to what your intuition is telling you. I was once trying to decide between two candidates. One, a youngish soccer-mom, was really my front runner, but something was just not right. I couldn't verbalize what it was - just a gut feeling. I hired the other candidate (who worked out great!) Later I heard from another family, who did hire the soccer-mom, that she turned out to have a drug problem and a suspended license.

I never interview someone without Lauren present. It gives me the opportunity to see how or if the person interacts appropriately with Lauren, and Lauren always finds a way to communicate that someone is not being sincere or is just too pushy. Some candidates will totally ignore Lauren's presence - like she's a piece of furniture. Some just go overboard with attention. That usually illicits a "Please, save me from THIS." look from Lauren. And, then there's my favorite - the deer in the headlights reaction upon seeing my perfectly charming, wheelchair sitting, rocking, noise-making daughter. I can just see the thought going through the interviewee's mind, "Oh, my God! What have I gotten myself into?"

The search for a caregiver is always a stressful, exhausting time for me. I am looking for someone, who in essence, is my surrogate. I have to be able to completely trust them, rely on them, and respect their abilities. During this last search there were people who wanted the job, but I just did not want them. The wait is difficult on body and spirit. I start second guessing myself. But, as in the past, I think the wait was worth it. We have hired someone. She started last week. I think we have a winner!

Lauren's Self-direction

September 8, 2009

Lauren has been receiving services through New Jersey's Real Life Choices Program and the Medicaid-funded Personal Preference Program for a little over two years. Both are designed as self-directed services. Of course, for a young woman with a minimal ability to truly communicate in any typical manner, you might think that self-direction is a bit of a misnomer. Is she truly directing her services? Absolutely. But that direction is seriously dependent on my ability to interpret her wishes and desires. George is always involved and interested, but when it comes to planning, development, and management, it's my job.

And, it is a job. My perspective of self-direction comes from our particular circumstances of helping a young woman with severe, multiple disabilities self-direct. If you intend to help someone with Lauren's level of need you will require many skills and need to have much time available. You will probably want to hire caregivers. (I'll talk more about that in a later post.) You will need to understand job applications and their accompanying forms, as well as make sure time sheets are accurate and are submitted on time. You will need to understand and participate in managing a budget based on your funding level, and interact with a coordinator and fiscal intermediary. You will supervise staff and be in charge of scheduling. You will need to develop and oversee activities, opportunities, and arrange for appointments, substitutions, and meeting everyone's varied needs. In other words - you will need more skills than you have ever needed to meet the care needs of your child.

Why do I do it? Sound like just too much work? Well, first of all, if we did not participate in these self-directed programs, we would be providing all of Lauren's care ourselves. At this point in our lives, that is not physically possible. As far as other available services in NJ, there are none at this time. Secondly, I believe in the concept of self-direction and that ultimately it will provide Lauren with the life that she wants and one in which she will receive the most appropriate care. The system under which self-direction is now taking place in NJ needs refining and general attention. But, it offers great promise. I believe this is the right path for our family to take. My foremost concerns are for the future - when I can no longer help Lauren self-direct. There is no one else in our lives that can take over this role. What will the future hold?