Marian Aiken

Several months ago an announcement was made in church that more or less left me in a state of shock. It took a bit for the information to sink in but by the time I drove out of the parking lot I was overcome with great sadness. The announcement – Pastor Mariellen was to be transferred to another church in July. (Please review Journey of Faith, August 12, 2014 to refresh your memory about my experience with Pastor Mariellen.)

I never thought the news of a pastor being transferred would affect me the way it has. I guess I was totally in shock because LAUMC has a history of senior pastors staying long term, at least since I have been a member here. The news caused me to sink into a state of depression and a great sense of loss.

I was in a zombie state for several days. Tears came easily and sleepless nights were many. To add to my confused feelings was the possibility of my best friend moving out of the area and changes in the care of one of my sons. So many challenges hitting all at once, but I had to continue taking care of the family.

Feelings of anger began to take over. I have no idea why Pastor Mariellen was to leave nor did I have any control over this decision. It really doesn’t matter because the decision had already been made. I had feelings of being neglected, empty and even worthless. Why couldn’t people understand how important it was to me to have a pastor I could understand and communicate with so easily? I know I am only one or two members in this large congregation who depend on interpreters and ASL and should not take it personally, but it still felt like I was being singled out. I’m sure most people have no idea that for more than 64 years I have had to depend totally on speechreading to comprehend conversations with my pastors. With Pastor Mariellen, I didn’t need to use my hearing aids to make sure I was using my voice for her to understand me. We could sit and sign. It was so comforting.

I felt like I had even let Pastor Mariellen down by not being able to recruit more deaf people to come to LAUMC. Sadly, those I invited were not interested or were of different faiths. There is not a high population of signing deaf in this area and I knew she was eager to connect with more signing deaf and wanted them to be a part of her ministry. It just never happened.

I also felt angry with myself for not taking better advantage of her skills while she was at LAUMC. It’s not like we met up every week to chat or discuss personal issues. In fact, it was more like once every three to four months that we made time to sit down for half an hour or so. What I have truly lost is the comfort of knowing my pastor, who was fluent in ASL, was just a few minutes drive from home.

As I grieved I decided to make a special gift for her, something that would remind her of those of us who claimed a small part of the front corner in the sanctuary. I allowed myself to shed some tears as I put together her gift. Most of the t-shirts I used in the blanket were designed by my friend Beth and I for the United Methodist Congress of the Deaf where I first met Pastor Mariellen close to 30 years ago. Here is a photo of the project that helped me some with the healing process of loss.

I would like to thank Pastor Mariellen for accepting the position at LAUMC as senior pastor, even if the appointment was not long enough for me. Thank you for sitting on the cold, concrete floor to interpret a service when there was no interpreter scheduled. Thank you for inviting me to sign a favorite Christmas hymn at the Christmas Day service. Thank you for supporting my family through some extremely emotional times. Thank you for digging up some of my purple iris bulbs and taking them along with you to your new home. May they grow and bloom with your care.

We now have a new senior pastor at LAUMC. I have only shook her hand once but she sent me an email inviting me to meet with her tomorrow. So once again, I will turn on my hearing aids, learn her flow of speech, try to find a good position and lighting, and all that goes along with speechreading. I pray I can understand without too much trouble and be open-minded enough to establish a positive relationship with her.

As a parent of adult sons who live with special challenges, I am learning how difficult and time consuming it can be to plan ahead for their future. To be honest, I have been aware of this for a couple of years but it truly hit home this past week. Where has my mind been?

I had been working with a lawyer friend sporadically for about three years with the idea of transferring my responsibility of conservatorship to an agency for six of my sons. Sadly, my lawyer friend had to take early retirement due to health issues and we never completed the goal. The options aren’t that great, according to the instructions given to me, for conservators wanting to end their responsibilities. To name a couple, either the conservatee or conservator needs to die or the conservator needs to get into trouble and be removed by the court. Well, none of these three options has happened to date. Therefore, I have reached out to a new lawyer for assistance but…..

After meeting with the new lawyer for a little over an hour and trying to explain my family’s situation, more and more information was fed into my brain to the point it’s a bit overwhelming to comprehend and accept. First, I need to set up an estate plan (I know this is something most people need to do) but there are so many things to consider in my situation. How long will I be able to live in my home and continue to make the mortgage payments? Who will receive what from the estate? Where will I live after I sell the property? How will the sale of the property affect my taxes? It’s mind-boggling and I am sure you don’t wish to know. And do you have any idea what the legal fee could end up to be? This bill is for 1 ½ hr meeting and a written summary of our meeting only!

So, back to the end of conservatorship topic. I need to develop the estate plan and, before the agency I was considering would step in, I need to set up Special Needs Trusts for those sons who are conserved. And it seems like they would require me to document 50% of the estate for six sons. What about all my other sons who don’t need to be conserved? I don’t feel it is fair to commit 50% for six of them at this time. So, I continue to be conservator until I figure out another plan.

Now, the Special Needs Trust is another whole overwhelming undertaking. Are you aware there are different types of Special Needs Trusts? I was not and I do not plan to go into detail about that because I really don’t understand it yet. However, the restrictions for how much money, cash, or gifts for those receiving public benefits and what the trust can actually be used for seem absurd to me. Several months ago I spoke to someone who is young, smart, highly educated, capable, and knows several of my sons, to inquire if he would consider becoming the trustee for the Special Needs Trusts. He said he would be interested. However, I did not understand at that time what the trustee would need to do. After reading up on this, I feel guilty for even considering a friend, or even a family member, to fulfill this responsibility. The responsibilities of an appointed trustee are tremendous.

To make things more confusing in my situation – determining which of my sons should actually have a Special Needs Trust and who should be placed in a regular trust fund. Do I develop a Special Needs Trust for those who have previously had public assistance but who are not at this time receiving SSI or SSA income because they are working fulltime jobs? Due to their physical challenges, however, they may need to go back onto public assistance in the future. Or should I simply put those few under a regular trust fund? Do I have to compile a trust fund for individual sons or can I pool them all together into one fund? I’m sure I have you all confused by now but let it be known, you are not alone as I am totally confused as well.

I know all these legal things need to be taken care of and I am aware that I can’t do it alone. I had a meeting this week with a couple of people from church who plan to help me out. I am so thankful for this support. I will not give up but will continue to move forward to help plan for the future for my sons. At least one major task has been completed, Advance Health Care Directive Kit for most, all who are conserved and some who are not. So, I give myself a pat on the back for accomplishing that much.

Surely I am not alone in this challenge. Please share your stories of conservatorship or Special Needs Trust issues in the comments below.

Trying to find people to help with my sons has been an ongoing challenge. When my sons were babies I thought it would be fairly easy to find someone to care for them while I was teaching classes or running errands. Most babysitters could lift my tiny guys and changing diapers is a norm for an infant or two-year-old. However, that belief proved false when parents of teenage babysitters learned that my son Derek might stop breathing (you can read more about this story in my book).

When my sons became preschool age, finding helpers became somewhat easier, if I recall correctly. However, I wasn’t leaving my sons in the care of others; I needed someone to help push a wheelchair or feed them while I was close by feeding another son. These helpers weren’t actually responsible for the guys’ physical/personal care.

When my sons became teenagers I recall having two people who could be trusted to care for my sons. One man was able to lift, bathe, and feed one group while one lady helped with the more medically fragile sons. Today, these two people are not available.

Currently I am searching for care providers who are approved by the county agencies and this has become a circus, so to speak. Our home is in a rather rural area that is not densely populated by such caregivers. Not only are there few available but most are older who may have many years of experience with providing care to the elderly or stroke victims. Of course my sons are adults but not elderly or stroke victims and their care is different.

The first requirement for being a care provider in our home is to single-handedly be able to lift a minimum of 90 pounds. After that, being able to help my sons who have cerebral palsy with their personal care: toileting, dressing, and feeding. Minimal help with laundry and light housecleaning of their rooms is appreciated.

I will share a few stories of what we have experienced within the past couple of years.

The referral agency sends me a list of potential providers. I ask Kyle to help make the initial phone contact since he has clear speech and excellent phone skills. He leaves a message and waits for a call back as most people don’t answer their phones on the initial call. I’d say close to 95% either do not return calls or speak little of the common language in our home.

And here are a few stories about those who did return calls.

Steve arrives on time to meet with me and be introduced to my sons. He is well dressed and several years younger than me.

“Steve, how many pounds are you able to lift?” I ask.

“I’d say about 50 pounds,” he replies. After a few more questions about days and hours he might be available we realize they don’t line up with the days and times we need help. I politely usher him to the door.

Roberta arrives for an interview. She is rattled because she has to drive on the freeway to arrive at our home. This just won’t work for her. She has decided before I can even ask any questions.

One man returned a call but he is only available at night while everyone is sleeping. “No thank you, sir.”

Last week I interviewed two people. First was Susan. Susan showed up without confirming a day and time she planned to come by. Fortunately I was home and so were my sons. I went to the door to meet her. I invited her inside and she walked very wobbly up the ramp and back to one son’s room. I introduced her to Alan, she was leaning on his dresser, weaving back and forth and dropped her keys. She was sleeping while she was standing up. I tried to figure out what was going on with her and tried to keep a conversation going.

“Do you think you can actually lift Alan? He weighs about 90 pounds,” I asked.

She briefly opened her eyes and answered, “I’m sure I can. I’m pretty strong.”

Throughout this Alan was sitting beside me with an expression of fear and constantly looking at NO on his wheelchair tray. I reassured him this lady was not going to be working here as I ushered her out of his room.

Before she actually got out the front door, she dropped her keys a couple more times, lost one of her shoes that she couldn’t get back on. And she stopped midway down the ramp, leaned against the wall and slept standing in her tracks.

I had no idea what to think of this. Others in the house were starting to panic as well. She finally left the house and went to her car. As I shut the door and walked back inside, I emailed the agency to inform them of what had just happened. I was assured Susan would be removed from the list immediately until a supervisor could look into it. I did not want any other clients to have to deal with this.

About five minutes later I realized her car was still parked behind my van and she was asleep in the drivers seat. I once again contacted the agency and that person offered to call her and ask her to move. She called twice but Susan never answered her phone. Sergei came home from work and barged through the door, “Is that woman in that car out there dead?” he shouted. Kyle had plans to use the van but she was parked behind it. He finally got her to wake up and asked her to move but she immediately fell back to sleep. Then the idea of pressing the PANIC alarm crossed his mind. I was not there to witness this but he said she jumped out of her seat and started her car. However, she only moved it a little and there still wasn’t room to get our van out of the driveway.

Finally, I went out and rapped on her window and got her attention. “Susan, do you have a medical emergency?” I asked.

“Who me? No, I don’t have a medical emergency. Why do you ask?” she replied.

“We are concerned because you cannot stay awake,” I said.

“Oh, I worked all night and I am just tired. Do I need to move my car?”

By this time I was honestly concerned about other people on the road as she pulled out of the driveway. Even if she had worked all night, it was now 4:30 in the afternoon and she would have had several hours to sleep after her nighttime shift. Once again, I emailed the agency and informed them that she had left the property. For some time after she left, this was the talk of the house. I have never seen my sons so shocked as they were that day.

Cheryl arrived two days later to meet my sons and discuss how she might be able to help. After the interview with Susan, Cheryl looked like a queen. She was more tuned in to the conversation and appeared to be knowledgeable about more things but, like many others, couldn’t lift more than 50 pounds. We both agreed to think about it and I would contact her once I talked with Ben and Alan. We finally decided to give her a try even if I still had to do all the lifting.

Her first day on-the-job training was to help feed Alan and Ben. Oh boy, she had never fed anyone like Alan! Sure enough I had been under the impression she had experience with this. She also said she knew how to tube feed but when it came time to feeding Ben, she had never seen the newer MIC-KEY* buttons. I had to sigh, take a deep breath and hold my tongue. She also had never used NO RINSE shampoo, which is what I have been using with Alan. I questioned myself if it was the right decision to have her come and help.

Her second time here, I also spent most of the time showing her what to do. I still had to prepare Alan’s food and medications but I left her alone with Alan to actually feed him. I explained that she could wash his hair again (alone) while I fixed dinner. I suggested she give him a sponge bath before she left. Or course I had to lift him out of his wheelchair, show her how to get his shirt off, gather up supplies for her to do the job, etc. Then I needed to show her how to put a shirt on and the story continues. The up side of the story is she was trying.

Parents – do you have any “Susan” stories to share? It wasn’t funny at the time but it sort of is now. One thing positive gained from that interview – my sons have more respect for  the decision I made on their behalf.

I normally don’t stop everything I had planned at the moment to write – but as I recall a conversation I had yesterday with one of my sons, I’m filled with emotion and gratitude. I am going to rename this son Frank for confidentiality purposes.

Frank arrived in my home at a young age. He had, and still has, striking facial features. He appeared to be an angry child with a noticeably severe physical disability. Later I would learn Frank had some mild to moderate learning problems.

Frank’s and my relationship seemed strange to me – not like that which I had with my other sons. We could work together peaceably for long periods of time doing physical type of work. I cherished these times together because for some reason I felt Frank was not able to accept the love I had for him. It was close to impossible to give Frank any type of verbal praise. I don’t know why but I feel he was unable to respect himself or to see any worth in himself.

Frank didn’t have many close friends in school. He wasn’t much of a people person and had some seriously delayed social skills. He also struggled with academics because of learning challenges, not that he’s not intelligent. Frank continued to be angry and would express his anger in many inappropriate ways. We definitely clashed at times, however our ability to work together never stopped.

Underneath all this anger I could also see a caring young boy. Frank chose very carefully whom he cared about. I witnessed from a distance many caring and loving moments he shared with some of his weaker siblings. I learned to keep quiet and not make a “big deal” out of such actions because my comments seemed to produce an undesired result. At that point, I decided it would be best to try harder to be a positive role model through my actions and less through my words.

Needless to say, I had my moments that weren’t so positive. I had to apply tough love. To some, my flaws are not visible but to my sons I’m sure they could tell you more than what you would like to know. However, I journeyed through Frank’s childhood and into adulthood with the goal of demonstrating love, care, respect, and forgiveness for others as best I could with the hope he would learn from my example.

As mentioned, Frank was not a “people” person and you can only imagine how shocked I was when I learned his first job was extremely people oriented. I was worried things would not turn out so great. However, he would come home from his job telling me stories about the people he worked with and how much they loved him. It’s obvious he worked hard and loved those people but this job did not last long because of the people he worked for. I felt sad when he told me he was moving to another job because he just couldn’t deal with the people he worked for.

Frank’s new job is not people oriented but he likes the work and works long hours. He takes pride in working hard and performing the best he is able to. So, why am I writing about emotional moments from a conversation we had yesterday? Because the conversation Frank initiated with me was about his feelings. He is now more able and willing to open up with me and share. He shared with me how much he misses the interaction with the people from his first job. He misses how he doesn’t seem to feel appreciated at the same level for the work he is currently doing.

Why am I emotional? My angry, somewhat anti-social son of years ago has worked diligently to improve his life and the lives of those around him. Maybe all the years of trying to provide a positive image have paid off? I would hope so, but even though that may not be the foundation to the reason Frank is who he is today – I could care less. I’m just stinking proud of how much he has achieved with his life and he knows he is loved and appreciated by me.

When some of my sons turned eighteen years old, I applied for conservatorship for them. All of them were still living at home and for various reasons were, and still are, unable to make some decisions on their own. I met with a lawyer to help with the paperwork and was investigated by the court before being appointed with limited conservatorship for my sons. The court does periodic reviews to make certain their needs are being met or whether changes need to be made.

Today I continue to be responsible to make certain these sons have appropriate living conditions, adult programs to attend, recreational and leisure activities, financial stability, and medical care. As conservator, I normally attend their annual meetings with the regional center social worker, day program, and group home staff. During these meetings, goals are reviewed, concerns are made known, decisions are made about their medical care and treatment, and end of life concerns are discussed.

Often I am contacted to sign forms for medical treatments, and so it was this week when I received an email requesting I sign forms and send a copy of my Letter of Conservatorship for one specific son. He was scheduled to have in-hospital dental care that required permission from me as his conservator for the treatment plan. I had no problem acknowledging he needed the dental work done in a hospital setting, but, this being a last minute request, I became paranoid about the time constraint. I had previously scheduled appointments for my sons still living at home. I managed to sign papers, copy other information needed and find a place to fax the papers in time so the dental treatment could be done on schedule.

Other times, I have been awakened during the night to be informed one of my sons has been taken to the emergency room. Then, I get another message I need to give verbal approval for whatever treatment is being considered. I’ve called doctors through the relay phone system using my TTY to give verbal consent. It’s a time-consuming process because there needs to be a second person from the medical staff on the line to witness the phone call. If at all possible, I go directly to whichever hospital my son has been admitted to and sign the papers in person. Since most of them live in a community I am not all that familiar with, I tend to get lost or not take the most direct route. A couple times we’ve had some scary medical events, but the guys fight off the infections or whatever and return to their group homes.

Recently, I have been considering the need to end my conservatorship duties for most of these sons, especially those who no longer live at home. Three have lived in care homes located locally for several years. Their needs continue to be met by others (although maybe not as I would do), but they have thrived where they are living. There are a few things I need to finalize before ending my responsibilities as conservator and I’d like to do this while I am still in a fairly good state of mind.

Once again I am working with a lawyer to find the best, legal way to go about terminating conservatorship. Because I am a limited conservator there are special rules for ending limited conservatorships.

*The limited conservator dies, (not my plan yet), or

*The limited conservatee dies, (not my plan either), or

*A general conservator is appointed, or

*A judge ends the limited conservatorship

I am not considering asking any of the more capable siblings to take over for me. I am looking into a specific agency that handles special needs trusts and conservatorships. However, my sons do not have trust funds and financially can’t afford to pay for such services. I do like what I have learned about this one agency. Of course, there are government agencies that provide a “public guardian.” However, the public guardian may have so many cases that it’s hard for them to give the conservatees the attention they may require or get to know them personally. This personal attention is necessary to help a conservator make the best decisions about the conservatee.

In California, people with developmental disabilities have rights to services they need. State services are provided by regional centers that are nonprofit corporations with contracts with the California Department of Developmental Services to serve people in specific geographical areas. If an adult with developmental disabilities does not have a conservator, the regional center will be assigned to make decisions for the developmentally-disabled adult. This is how it is for one of my sons. He seems to be doing well, but, sadly, I have never met his service coordinator. I understand the regional center workers have heavy caseloads, but I may need to consider this option for several of my sons.

I feel I have done a fair job of being conservator for my sons. At times, I think there might be better pull to have some services provided for my sons if they were under an agency that focuses primarily on conservatorships, especially in locating care homes to take over what I do today. I’m definitely in need of cutting back my workload as I age, but I certainly don’t plan to do that by dying, which would comply with one of the criteria listed for limited conservatorships.

What do other people do in this situation? Are you a conservator for an adult with a disability? Please share your thoughts and experiences here with us to help us all navigate this new territory.