More to the Role of Caregiving Than Tasks

May 27, 2010

When people count on personal assistants to make it through their day, what is possible for them depends to an important extent on the way those assistants show up in their lives. Assistants can show up in trivial ways, as mindless guards or keepers, or in more generative ways as creative allies.”

That quote is from an article by John O’Brien titled “An Ethics of Possibility”. I picked a copy of it up off an exhibitor’s table at a recent conference on self-determination. Thinking back on our many caregivers over the years, it is evident that some “showed up” every day, and some just put their time in. As Mr. O’Brien puts it, “A direct service worker can give in to laziness and treat the work as though it is simply a matter of performing disconnected tasks…Toilet, bathe, dress, feed, transport, run programs and redo. In this mode the assistant acts as a keeper of the incompetent, uninteresting, and stuck. …Laziness can be justified by an ethic of rule-following, as (in) - just doing my job”

I can see in myself as I train this new caregiver that my approach is wrong. I focus first on the “tasks”. I train how to do transfers, prepare and feed food, shower, and handle a wheelchair. I don’t get around to the principles of the need to help Lauren live a life of purpose and quality, engaged in her community, until the basics are learned. But I realize now, that if they are not taught in tandem, the tasks are learned out of context. Some caregivers come to us with an understanding of the whole picture. They come in acknowledging their role not only as caregiver, but as a “life facilitator” as well. But, most come to us with no knowledge or experience with the world of disability, and lack the mindset which acknowledges that there is more to the job than “tasks”. The training of a caregiver plays a significant role in developing a caregiver that is a creative ally rather than a keeper. There will always be those individuals unwilling to be more than a keeper, but I must be mindful of the necessity of training a caregiver to know that there is more to their job than just tasks.

Stretched a Bit Too Thin

May 25, 2010

I gave up about one-thirty Monday morning. Lauren just could not settle down to sleep. Was she not feeling well? Was it a bad dream? There was no way to tell. So, I got her up, settled her into the recliner in the living room, and sat with her until she finally drifted off. Then I lay on the couch, wondering, listening, worrying. Every time I’d start to fall asleep, her breathing would change and I’d be alert again. Around five-thirty, I woke my husband and asked him to take my place on the couch so that I could crawl into bed for an hour. I needed to be up early so that I could be ready to leave by the time Lauren’s caregiver, N, arrived. I needed to run some errands and be back by eleven. The guy was coming to fix Lauren’s wheelchair. I couldn’t go out later in the day because our new second shift caregiver, L, is not flying solo yet.

Lauren had a seizure at seven-thirty. She was agitated and tired afterward . I managed to get some yogurt and all ten of her seizure pills into her before N arrived. Then, I left her sleeping while I quickly ran to the grocery store. As I groggily wound my way down the last aisle of the store, my cell rang with the message that the wheelchair guy was cancelling.

Back at home, Lauren was still sleeping, woke up briefly, and managed to get some pudding down before going back to sleep. Around four she seemed to be rousing, and we got her up and out on the screen porch for some fresh air. Five minutes later, she was throwing up. Lauren takes extended release seizure meds. They take a long time to disintegrate in the stomach. They came up still intact. This means that I have to pick them out of the detritus of her stomach contents and somehow, soon, get them back into her. The new caregiver and I cleaned Lauren up, and got her settled into the recliner once again. where she promptly fell back to sleep.

At 5 o’clock, my husband arrived home after work. Walking in pale and with a slight stagger, his speech seemed slightly slurred to me. Asking him what was wrong he said, “I’m tired, I’m just so tired.” He walked into the next room and five seconds later I heard the crash. Flying through the door, I found him on the floor surrounded by the remnants of a bowl of potpourri. He was conscious but weak and a bit confused. I yelled for the caregiver to call 911. She did, and I asked her to bring me the phone. Holding on to my husband, I shakily hit speed dial to call N (whose been with us for three years), so that L would not be alone with Lauren. N arrived before the ambulance. After giving some quick instructions to L and N, I grabbed George’s shoes (but not the insurance cards) and we were off to the hospital.

Concentrating on taking some much needed deep breaths as the ambulance driver used her siren to clear rush hour traffic, I tried to figure out why the EMT amongst the many pertinent questions, had asked “Is this a group home?” He hadn’t seen Lauren while he was there. My only response to his question, had been a blank look, while I tried to process his query. He continued, “Well, the house is kind of big and it has ramps.”

Doctors and nurses and EKG leads and questions, lots of questions, repeated by each new person entering the room. In between I would hurry to the entrance door where I could get some decent cell reception in order to call home and check on the progress of getting the meds back into Lauren. “She’s still sleeping.” “Ok, I got a couple of them in.” “She won’t eat anything, I’m going to try again in a little while.” I got a few more in, there’s two left.” And, then at 9:00, “I can’t get the last two in.” I have to go home.

A doctor comes in to explain what tests they are doing and why. The ones that have come back thus far have all been normal. They will admit him and do more tomorrow. He says, “Sometimes these kinds of things just happen in the elderly.” Elderly? My husband isn’t elderly! Yes, he’s seventy-four, but for George, that really is just a number. He skis and plays golf. He still works in his accounting practice. He has more energy and vitality than I do, twenty years his junior. What do you mean elderly? I picture elderly as diminished, fading, failing. Am I missing something? Am I in denial? We have too much yet to do, too much life yet to live, I won’t accept that we’ve turned some invisible corner with the finish line coming into view. I just won’t.

So I leave him waiting to go to his room and I return home to Lauren. She is looking brighter. A slight smile touches her lips. I tell her it’s been a really tough day, and that she needs to take just two bites of pudding for me (each topped with a pill). I kiss her cheek, and she quietly takes the two bites, and then two more, and then finishes the little container of pudding.

So now it is Tuesday morning.  I sit here and write this while I wait for George to return to his room after more tests. Lauren woke up smiling this morning. She ate all her breakfast, She was happy and healthy and ready to get on with her day. N will take care of her till three o’clock. George’s tests are scheduled through six tonight. He seems like his normal self today. They haven’t found anything wrong or suspicious yet. I don’t know if I hope they find something, so that we can fix or treat it, or nothing, that will leave us wondering. I will have to leave him by four o’clock to get back and help L with Lauren. I'm feeling stretched a bit too thin.

The Self-Hire Process - One Example

May 20, 2010

Every self hire we have done thus far has been a little different. Many factors enter into the process – time of year, worker pool, shift, individual hired, interaction with support coordination and fiscal intermediary, as well as what is generally happening in our lives. The last time we had to search for someone to fill this evening position, it took two and a half months from the beginning of the search to the hire date. This time it took less than two weeks. I thought I would share a short history of the entire process from placing the ad to having a trained caregiver in the position.

Place ad in newspaper (New Jersey Herald – serves Sussex County primarily)  Ad runs April 2nd and 4th, 2010.

Interviews are scheduled with three applicants to take place between April 3rd and April 7th. (Only one showed for their interview)

Applicants continue to call until April 11 but none are appropriate so no further interviews are scheduled. Luckily, all you need is the right “one”. Position is offered to L on April 13.

All paperwork required by Fiscal Intermediary is completed on April 14.

Self-hire calls for appointment for drug testing and fingerprinting.
      Drug Testing – two day wait
      Fingerprinting – two week wait (April 29) Sparta location is only open two days a week. Alternative location would have been a one hour, twenty minute drive for self-hire. When L went to appointment, staff were sitting around talking and no one else was in the testing center.

We then must wait to hear from Fiscal Intermediary for a date when self-hire can begin work. Waited until May 5 and emailed FI contact, automatic reply told me she was on vacation for a week. Self-hire had called FI contact, left message, and call was not returned. I contacted someone else at FI to find out that L was cleared to start. I reached L on May 6 (Thursday) and arranged for May 10 (Monday) start date.

Training began on May 10. It is a slow process dependent on the background and experience of the self-hire, Lauren’s cooperation, and my ability to teach and guide the new caregiver through the many details and skills necessary to care for Lauren. I expect that L will be able to work independently with Lauren by June 14.
Days from hire to start – 28

Days from start of process to self-hire start date - 39

Days from start of process until the self-hire training is completed to the point that self-hire can work independently - 74

Self-Determination - Questions That Need To Be Asked

May 18, 2010

It often takes a major problem, reversal of fortune, or life-threatening event for us to stop, take a hard look at our lives, and reassess the path that we are on. We seem to need a catastrophe or major roadblock to force us to ask “Is there a better way?” or, “Am I heading in the direction I want to go with my life, or am I following a course that is neither truly meeting my needs nor fulfilling my life goals?”

Now that our human service systems are facing devastating restrictions and cuts, and the numbers of individuals needing service is growing daily, we can no longer wait to ask those important questions of the system that supports the lives of people with disabilities. We need to ask, “Are we heading in the direction we need to go with services? Can we, should we, continue to follow the path of recent years, from which we have not significantly strayed, in the design of supports that serve individuals with developmental disabilities and their families?

Someone sent me a very interesting article the other day by Tom Nerney of the Center for Self-Determination. It was titled, “Lost Lives – The Paucity of Quality in Human Services”. (If you would like to read the full article please follow the link.) Mr. Nerney calls for us to rethink the manner in which services have been provided and to challenge the thought that quality of services equals quality of life. He states that the Medicaid guidelines around which services are designed are “system requirements, and not personal quality of life components.” He notes that “An estimate of the number of pages of regulations necessary to maintain and continue this system easily exceeds 600,000.” He contrasts the unwieldiness of these regulations with another often mentioned unwieldy document – the Internal Revenue Code – which is 75,000 pages long. The complexity of the Medicaid regulations leads to the fact that “...more time and effort in many systems are devoted to billing, billing codes, service definitions and reimbursement issues than to quality.”

Mr. Nerney points out the four indicators of quality that individuals universally list are:

     “A safe place to call home, with authority over anyone who enters and especially anyone who needs to touch his/her body

      Real membership in, and contribution to, the community with control over the means of transportation

      The support needed to continue relationships and forge new ones, including intimate ones

      Support to end near total impoverishment virtually required at the intersection of Medicaid and Social Security”

He notes that our current systems, at their best, provide the services that an individual needs in order “to get up in the morning” instead of helping them define and fulfill their own life goals so that they would “have a reason to get up in the morning.” He states that, “...the unspoken ‘bargain’ made with many individuals who need support is to require all or most of their everyday freedoms to be surrendered in return for support.” That situation is only going to be further reinforced as our population ages and the numbers needing services swamps the current system. “Within the developmental disability population more individuals live at home with an aging caregiver than are currently served.”

The changes that must be made in order to build a system that would truly provide quality of life are global. They would include major revisions in the regulations that now govern service development, inclusion of resources and opportunities from the private sector, and focus on the building of lasting, caring relationships – “persons served without close committed relationships are most in jeopardy with regard to health and safety.”   It is also critical, as outlined by Mr. Nerney, for us to enable people with disabilities to throw off the cloak of impoverishment that is sustained by the very systems that are providing inadequate supports, as well as assuring that the individuals who offer direct support, are provided with a living wage and benefits.

Mr. Nerney concludes by stating that, “To continue the present system is not only fiscally unsound, it consigns those served to lives lost to loneliness, personal impoverishment, and full or partial exclusion from real community life;  lives lost to regulations, program requirements, surrendering basic and ordinary freedoms; and lives lost to a sophisticated pretense at quality without equality based on shared universal human aspirations for a meaningful life.” I applaud Mr. Nerney’s answers to the questions that need to be asked, but I have to admit I only have more questions after reading this article. I can’t seem to frame a picture of what a system which truly provides quality supports would look like. How can we ever design a system to meet the incredibly diverse and increasingly complex support needs of the developmentally disabled population in a manner that will provide quality supports, be economically efficient, and guarantee a meaningful life?  Even by asking that question, I feel that I am probably missing something. Have I become so conditioned by the complexity of our current system that I am missing the role that simplicity needs to play in formulating a system that offers true quality of life?

The only thing I am sure of is that we need to decide where we are going. It is impossible to plot a course when you do not know your destination. It seems for years that we have been trying to get to some ephemeral “somewhere”, a place of quality and equality. We have traveled from institution to group home to self-direction with no one thing ever providing the real answer. Once and for all we need to know where we should be heading and what the most direct route is to get there.

Communication - The Need To Speak "The Language"

May 12, 2010

A lot has been going on in our house in the last few days. Lauren’s new caregiver has started and we’ve had house guests – Anne, a former caregiver, her husband, and nine-month-old baby. My attention has had to be splintered and I’ve been juggling everyone’s needs in an effort to keep people fed, entertained, and happy. There has been a lot of interaction between people who don’t interact on a frequent basis or who have simply never met. This has brought into sharp focus how Lauren’s lack of communication skills affects her ability to interact with others. It results in her being isolated, detached, and frustrated.

Working with Lauren requires you to basically learn another language. One that is unique to Lauren. This new caregiver must learn to interpret sounds, expressions, and moods. It will take time and effort to begin to understand Lauren and she can be downright intimidating. Right now she’s PMSing and her moods are swinging in every direction – loudly, and insistently. It takes a great deal of judgment and guessing to figure out what Lauren needs, what she wants, and when she’s basically “pulling your chain”. I have to constantly be Lauren’s interpreter until the caregiver becomes fluent. Lauren communicates in minute changes in vocalizations and body language. I feel that my efforts to explain her language are often inadequate and confusing.

Lauren’s language has changed in the twelve years since her former caregiver worked with her. So, there was a certain distance between them during this visit. Distance or unfamiliarity often occurs between people who haven’t seen each other in awhile. Most of us overcome that with a good chat session. Now, I am the interpreter, the storyteller, the link between the past and present. But connecting with someone through someone else is an inadequate substitute to communicating with someone directly. So, during this brief visit, the former relationship has had no chance of being rebuilt.

And how does Lauren befriend the new people in Anne’s life? Anne’s husband has no history with Lauren beyond Anne’s stories of her time with us. He has no experience with someone with developmental disabilities. So he is watchful and quiet – he remains a stranger, a new voice in the room that has no meaning, connection, or value to Lauren. And she has no tools with which to reach out to a stranger for whom she represents a scary unknown.

So, the new caregiver will need to rely on me for many days to come as Lauren’s interpreter, one of the very few people in this world who speaks her language. And, a lovely visit with an old friend and the new ones she has introduced into our lives has left me a bit sad. Lauren was in our midst, yet set apart by her inability to engage on her own. It is quite apparent that like a stranger in a foreign land, Lauren’s journey through her life would be infinitely richer, safer, and easier if she “spoke the language”.

Adding Technology to the Hiring Process

May 6, 2010

We have recently been searching for a new caregiver. This is always a daunting and nerve wracking endeavor during which I am alternately frustrated, nervous, depressed, excited, and uncertain. Each time I have to go through the process I try and figure out a better way to do it. The only thing I could think of to improve on the process this time was to add some technology – a video.

Our applicants usually have little or no experience as caregivers, some have no experience with people with developmental disabilities. The most frequent example that they give of any type of comparable experience is, “I took care of my grandmother.” And even when they do have experience as a caregiver, they don’t have experience with Lauren.

I would hate to lose a potentially competent, caring DSP because of fear of the unknown. The list of duties and caregiving responsibilities for Lauren is extensive. But, really, nothing is difficult. However, applicants often look overwhelmed by the time I lay out all of Lauren’s various needs. A lay person might not understand what doing a transfer actually means, they may have no experience feeding someone, they may think Lauren’s stander looks like some type of medieval torture device.

So, I made a very simple video. It shows doing a transfer from wheelchair to recliner, transferring and setting Lauren up in her stander, and feeding Lauren dinner. The plan was to have my laptop with me during an interview and be able to show the applicant the video in order to illustrate what their duties would be.  I think it takes a lot of the “mystery” out of Lauren’s care. I think it will be a very effective tool to use the next time we have to do a caregiver search (Oh, please don’t let that be anytime soon.) Since we only had one applicant this time, I can’t really tell if their response to it would have been a deciding factor in my selection. But, I would definitely give it another try.

Our new caregiver starts on Monday, wish us luck!

Family To Do Lists

May 3, 2010

If you’re the parent of an individual with developmental disabilities, how often have you realized, while speaking with a casual friend, your cousin, or even your child’s doctor, that they did not have a clue what it is like to care each and every day for your son or daughter with a disability? I can’t tell you how many times other parents have told me about being asked, “When are you going to get a group home for your son?” or “Why don’t you get some help?” The majority of our fellow citizens think that all that you have to do is ask.

I’ve been known to be something of a crusader, bending anyone’s ear with whom I come in contact. Whether it is in the aisle at the grocery store or at a dinner party, I do my darnedest to enlighten people about the lack of services and opportunities for individuals with developmental disabilities and their families. I can’t seem to help myself, because I think a crisis is looming in the not too distant future if a serious commitment is not made to building an infrastructure to support and care for our sons, daughters, and families. If the public understands the situation I think they will support efforts to meet a need that is growing day by day. So I talk, and talk, and talk. I share my knowledge with people but knowledge is not synonymous with understanding.

The Family Support Coalition of New Jersey and the Family Support Councils throughout New Jersey have gathered “To Do” lists from families caring for individuals with developmental disabilities. The lists are powerful, compelling, and best of all, enlightening accounts of the daily challenges and struggles families caring for loved ones with developmental disabilities face every day.. I was very moved by the simple honesty in these lists. The impact they will have on people who do not truly understand the commitment and “love against all odds” that it takes to care for our sons and daughters is important, very important. These lists will have the ability to help our lawmakers, policymakers, and fellow citizens have not just knowledge but understanding. Read the collection of lists for yourself.  Ask everyone you know to read them.