Always Questioning


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I don’t know if everyone else does this or not, but I’m constantly questioning myself, my decisions, my perspective, my thoughts.

I try to think things through thoroughly before making a decision. I talk about things to get the views of others, I blog about situations, I vent and let off steam, I get angry and frustrated, but ultimately, I try to see any situation from all sides, try to understand the position of others, I try to compromise when possible, find solutions that will benefit everyone involved. It’s not always possible to benefit everyone, but it doesn’t hurt to try.

I don’t have all the answers, I’m always learning, trying to improve, but I do my best at whatever I tackle.

Lately I’m feeling completely inadequate. Actually, not just lately, but for some time now, especially in regard to managing my son’s program. I’ve chosen his aides, though I’ve always asked him for input and value his opinion, ultimately, it’s up to me. It’s been one aide after another, one issue after another.

Four of his aides have had major health issues which required extended time off.

I’ve arranged for his volunteer experience, advocated for him with the hospital where he works, the agencies we’ve used, the county office, his doctors, social security, etc. I intervene on a regular basis to protect him and promote the level of independence he is capable of achieving. We work on daily independent living skills at home, to some degree, every day.

I’ve tried to do everything I can to support and encourage him, to prepare him for independence. I often worry that there’s more I could do.

Lately, I’m getting a lot of unsolicited suggestions from my son’s most recent aide. I’m hearing a lot of “Mom should”, “Mom could.” Many of the things she’s suggesting are things I do regularly, though her suggestions make me wonder if she actually thinks I don’t do those things. I know she’s well-meaning, but it’s starting to feel more like judgment of my parenting and advocating than helpful suggestions.

Several times my son and his aide have encountered difficult or uncomfortable situations at the volunteer location. When they come home, his aide explains the issues they’re having. I immediately make contact with the volunteer coordinator. I’ve always followed up on my contacts to let the volunteer coordinator know when things have been worked out, when things are going well, if we need a tweak of an accommodation, etc.

Sometimes there are things that could easily be handled at the volunteer location, by the aide, in the moment. An example would be when they began reorganizing the department my son volunteers in. His aide interacts with the folks in the department when they are there. She suggested I call the person in charge of the department they work in and ask him to remember my son’s accommodation of a quiet room away from the folks who’d created an uncomfortable and somewhat hostile environment for him. Recently, after I told her I emailed the volunteer coordinator about continuing my son’s accommodations, she suggested I should go to the location, have a meeting face to face with the people of the department to make sure he’s going to have an accommodation going forward.

She’s there two days a week with these people. When she’s with my son I expect her to appropriately advocate for him. I’ve told her this. It would be nothing for her to simply speak to the folks she’s working with and remind them that my son needs continuity, consistency, to be successful.

Since November 29, 2016 I’ve emailed the Volunteer Coordinator 7 times, that doesn’t count replies to her responses. We’ve probably spoken on the phone at least 5 times. I’ve emailed the Volunteer Coordinator more times in the last five months than I did the whole previous year. I’m afraid we are higher maintenance than the typical volunteer and we’re constantly asking for accommodation, complaining about something. I don’t think it’s appropriate for me, as a Managing Employer, to go into a place of employment and speak to someone else’s employee, essentially circumventing their authority, this is why I communicate directly with the coordinator.

I feel as if I’m caught between doing what I think is right for my son and trying to meet the expectations of our new aide. I’m currently about to start a new back-up aide, so I don’t know what to expect when she starts accompanying him to the volunteer location.

I’m so tired of not feeling secure or comfortable with my choices, not because I don’t trust them, but because others create doubt. I wish there were other parents to discuss the situation with, who’ve had experience with this sort of thing.

Follow Up to Two Steps blog


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Since my last blog, my husband had his MRI and got the results the following morning. He does not have a tumor on or near his brain relative to his olfactory center. There appears to be no physical reason for the symptoms he’s experienced.

Our doctor suggested he stop all the supplements he’s been taking, to see if that has any effect on the symptoms. She also prescribed an allergy medication to be taken for a month, after which they will try an antibiotic if there is no improvement.

We are so relieved.

I had the ‘measurement’ appointment with the eye surgeon, to determine the size of the lens needed to replace my own when they remove the cataracts. I was extremely disappointed. It turned out the information filled in, in the packet they gave me for the surgery, was not all applicable to me.

The first thing I learned was that the basic surgery typically leaves the patient needing corrective lenses for all vision situations, distance, close up, etc. The surgeon had told me I’d need glasses for reading only, but all other vision should be corrected by the surgery. He said they’d remove the lens from my glasses when the right eye is done, because I won’t need it. That is in question now.

I also thought that he told us he’d be correcting the astigmatism, this was checked on my packet paperwork, but it turns out, basic lens surgery does not include astigmatism correction, one has to pay extra for that.

At the consultation, the woman that goes over everything with the patient, to prepare you for what to expect went into elaborate detail about anesthesia, telling me you could choose to have a local, be in ‘twilight’ or be put completely to sleep, which is what she chose because she was very nervous and stressed about having the surgery. I was told at this appointment that there is no choice given regarding anesthesia. Everyone is put into what they refer to as ‘twilight.’ Some people report seeing bright lights, some say they could hear everything, others say they had no memory of anything that happened. They said they do this because they want to minimize the amount of time it takes to come out of anesthesia, so your time in the office and recover is no more than 2 hours.

I will have to use an antibiotic eye drop in each eye for a week after each surgery and a steroid eye drop in both eyes for between 4-5 weeks. I’m not allowed to rub my eyes for 5 weeks after surgery. Before surgery, I must shower the night before and the morning of with Dial antibacterial soap, can use no powder, no deodorant, no make-up of any kind, can not eat or drink after midnight the night before surgery. In the morning I can only take my blood pressure medication, waiting to take the other medications when I get home, if the surgery is scheduled for early morning.

There’s a lot involved. There will be a follow up appointment the next day, after each surgery, with the surgeon.

The hope I had for not needing to wear glasses in the future is in question.

I’ve begun to have concerns regarding our back-up aide for my son. She’s not even started working yet and it appears she’s technically been reprimanded by the agency already. She’s asking a lot of questions that concern the Program Manager, not listening to the policy she’s being told, making contact with people in the agency she should not be. She asked me a lot of questions I tried to get answered for her, but she still insisted she was told something different and apparently knew better.

There was an incident with my son’s current aide today that I have to address tomorrow and the back-up aide is coming tomorrow afternoon to get the training/orientation she needs to get before she can begin one to one services with my son.

It seems like there’s always got to be some sort of drama, it’s almost daily anymore. I would love to experience a day without anxiety, stress, someone needing something from me, having a fire I need to put out.

I guess there’s always tomorrow to hope for.

Two Steps Forward, Three Steps Back


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How do we keep from becoming hopelessly depressed when it seems as if every achievement is followed by a setback?

In August 2015 I started seeing a new doctor. I weighed in at 472 lbs. I couldn’t believe I had gained that much weight. I knew I was heavy, but had no idea what the real number was, as my previous doctor ”guesstimated” my weight, as her scale couldn’t read a weight heavier than 350 lbs.

The first year, I modified my diet to follow the diabetic diet my husband was given at the Diabetic Nutrition and Education Center. I lost 62 lbs.

In June of 2016 my power chair broke down and I was unable to get it repaired. My doctor knew I was depressed and struggling, so she added an appetite suppressant to my treatment and encouraged me to force myself to walk. I’d started out pushing my manual wheelchair around the block, working up to a longer distance over time. I started walking twice a day, then recently three times a day. I’ve increased my distance to 1 mile, walking to the dike, once a week. I purchased a rollator (a walker with four wheels and a seat) to make walking a little easier.

Since August 2016 I’ve lost an additional 85 lbs, making my total weight loss 147 lbs. I weigh 325, as of April 11. My goal is to break 300 by my next visit in mid August. My doctor cut the appetite suppressant in half after only 3 months, and my blood pressure medication by half this January.

I’m finally starting to see results. All of the clothes in my closet are way too big. I can’t keep my dresses or blouses on my shoulders, everything is baggy. I couldn’t keep my underwear up, ordered 2 sizes smaller than I had before and I could no longer wear my bras, had to drop a size and a cup size. The shoes I was wearing a year ago are now too big, as the swelling in my feet and calves has gone down.

My husband just took me shopping for some new clothes and I was able to shop “off the rack” for the first time in more than a decade. It felt so good to try on clothes and have them fit. I don’t have to order my clothes from a catalog anymore.

Feeling good about my accomplishments didn’t come without other difficulties that really discouraged me.

I went for an eye exam in February and was prescribed new glasses. I described the issues I’ve been having with my vision. He said there was a slight change, but everything looked healthy, nerves, muscles, tissue, etc. In a week I had my new glasses, but there was absolutely no improvement in my vision. They asked me to wear them for a week because it can take a little while for eyes to adjust to a new prescription. I did so, still no improvement. I went back to let them know. The doctor saw me again. We talked again about my symptoms. He said he couldn’t see anything that concerned him, but my symptoms were indicative of cataracts. I was scheduled to see an ophthalmologist at an Eye Center near us. The Center rescheduled my appointment, as the doctor wasn’t going to be in the office the day they scheduled me for.

I finally got to see the specialist. He immediately informed me, upon examining my eyes, that I have moderate cataracts in both eyes, the left one being worse than the right. He recommended surgery and wanted to do it as soon as possible. My insurance won’t pay for laser surgery or customized lenses, so I’m having the basic surgery to replace the lenses. He told me I shouldn’t need to wear corrective lenses after the surgery, except for reading.

I had my pre-surgery physical, I got next week to have my lenses measured so the new ones they implant will fit properly, then on May 8 I have my right eye done, on May 15 I have the left eye done.

I felt as if I’d taken two significant steps forward with my weight loss, though the struggle has been becoming more difficult, my pain level much more intense and steady, but learning I have cataracts and have to have two surgeries, I felt as though I got drug back a few steps. It seems like it’s one thing after another.

The surgeon told me I’m going to be frustrated and struggle for a week between surgeries. They will likely take one lens out of my glasses for a week, so I’ll have one lens with a bifocal and one without anything.

When I bought my new glasses in February, I also bought prescription sunglasses. Now I’m hoping, since I bought those glasses based on a misdiagnosis, that they will refund some of my cost and hopefully make things right for me. I won’t know what they are willing to do until I go back, for a follow up after surgery.

I’m frightened and a little excited about the eye surgeries. I am hesitant to have my eyeballs cut with a blade, very nervous about what to expect, but on the other hand the idea that I may not have to wear glasses except to read is almost unbelievable. I’ve worn glasses since the 4th grade. The first thing I do when I wake up is put my glasses on, the last thing I do before bed is take them off, the idea of not having to do that any longer is almost incomprehensible. I just hope the doctor is right, that my sight will be corrected.

The eye doctor did tell me that the surgery will not change the light sensitivity or dry eye I experience.

My husband now needs to have an MRI to address an issue he’s having with his olfactory sense, so we won’t know how serious that may or may not be until after the 24th.

As always, there are ongoing issues with my son’s program, his new habilitation aide is taking a medical leave starting in June, to end, we hope, by November. Hiring a back up who is only available in the Summer. It looks like my son might not be able to get services for about 2 months before his aide comes back.

I feel like my plate is overflowing, not just full. I need to get through these surgeries, get the diagnosis for my husband and learn what has to be done, as far as treatment, and keep focusing on walking, losing weight. I’m trying to plan a 50th Birthday party for him in August, so that’s something nice to focus on when depression and anxiety starts to creep in.

Can Things Get More Complicated?


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Apparently, the answer is yes.

The agency that handles my son’s waiver services recently sent out a mailing notifying all managing employers that we will no longer be responsible for completing the paperwork required to hire new aides for our loved ones. They informed us that they’ve hired a “Hiring Coordinator” to handle all paperwork. One individual for each of their two offices, so that one individual will cover a broad area of the state. They’ve predicted an additional two to three week period of time to complete the process.

I informed the agency that I’d located an individual interested in the back-up aide position we need to fill, for the period of time our recently hired permanent aide is on medical leave having surgery. I completed the qualification form they required before scheduling an appointment with the Hiring Coordinator. The new program began March 20.

I was just informed that the Hiring Coordinator made contact with the person we are interested in hiring, scheduled an appointment for tomorrow, but still has not contacted me. I was told that the appointment would be a joint meeting with the potential employee and myself, as I have to set scheduled hours, rate of pay, etc. There is a training on my son’s Individualized Service Plan (ISP) that I’m required to give before they can begin providing services, which I have to schedule.

When i learned that the appointment had been scheduled, I was also asked by the potential employee for a start date. I thought that she understood I had no start date because I have not been given any date for when the medical leave is to start, how long it will be or when it’s anticipated to end.

Our permanent aide told me that an MRI has to be scheduled, then the doctor has to read it, then schedule an appointment to discuss the result. They will have to schedule surgery and she can’t schedule surgery for any sooner than 8 weeks out from the MRI, as she has to give her other employer 8 weeks notice of a medical leave. She’s indicated that the doctor suggested she will need between 8 and 12 weeks at a minimum, to as much as 6  months of leave. She’s said when she had a similar surgery last year he refused to predict a duration until after the surgery and she’d completed half of her rehabilitation.

I explained to her that the back-up aide I’d found is only available from June 1 through the last week of August. Our aide told me I should be trying to find a second back-up just in case she’s out for 6 months. I suggested she should advocate for coming back after 12 weeks, as there’s no manual labor involved, just supervision. My son can lift boxes of materials at the volunteer location while she’s healing.

Our agency placed an ad for me on a hiring service, February 27. It’s been a month and we’ve not had one person show any interest in our ad.

I’m so tired of this nonsense. My son is fed up and telling me he wants a break, he can’t take any more either. I don’t blame him. This is ridiculous. Our last 4 aides have taken the job then had to take medical leaves, our last aide’s medical leave ended up being 9 months long and after returning for only 4 months notified us that she needed to take another medical leave.

This time, my son is convinced that this aide is going to end up taking 6 months, it’ll turn into 9 months, then she simply won’t come back at all. He’d like me to try to find someone else. I just can’t face that process again.

This has become a nightmare. I’m seriously thinking about giving up on family directed services, to allow the agency to do the hiring, managing, etc. If one more person tells me “I need this” … or “I need that” … “I want this” … or “I want that,” without any consideration of my son, of how their demands and choices affect/impact my son or our family I think I’m going to do bodily injury to that person.

Intimidation and Harassment


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As I shared in my last blog, we had to terminate my son’s aide. She’d been with us for a few years and it was something we struggled with for some time, knowing that my son needed to be the priority, rather than her illness and the constant crises and drama she brought to our home.

November 1, 2016, as per direction from the Human Resources Dept. of the agency we work with, the aide was terminated. November 2, our backup aide covered hours with our son. On the 3rd, they went out to my son’s volunteer position and found that the Dept. where he volunteers was not accessible, the lights were on, but the doors were locked. They had never encountered that before. Luckily, she knew where they key was kept and was able to retrieve it. When she unlocked the door and went inside, the former aide was inside. When she looked up and saw them, she ran out a side door.

When they got home and shared with me what had happened, I called the head of the volunteer department and discussed the situation with her. I asked her if there was any reason she was aware of for the doors to be locked. She assured me there was not, acknowledging that it seemed more than a coincidence that the aide was there, inside the locked room. She looked on the computer and determined that she had not signed in to volunteer, therefore was not permitted to be in the area. Immediately, upon learning that we had to let our aide go, the volunteer supervisor said, “that was intimidation, today.” She went on to say they wanted the hospital to be a safe work environment for my son and that this person, if not coming in with my son, had no reason to ever be there on the same days he is. She assured me that she would not be permitted to be there on the days of the week that my son is and that she would be moved to a different department if she still wanted to volunteer on her own time, but technically, she was approved to be there based on being my son’s aide, so she really shouldn’t be there, but especially not without signing in.

I was given instructions to share with our backup aide, as to how we should handle it, should they encounter the former aide in the building again. They are to go to the security station, report her, call the volunteer department and wait until she’s been located and removed from the hospital.

That occurred November 3, 2016. On January 10, 2017 our new aide was supposed to accompany the backup aide, job shadowing, so she could learn the responsibilities at the volunteer location. That morning, our backup aide called and explained she and her kids were sick the night before. She’d gotten 2 hours of sleep and couldn’t work. She volunteered to come to the house, meet with the new aide, go over everything and give her, her cell phone number, so they could text throughout the day. We had no choice but to go with this plan. Our new aide indicated she felt she had enough information, enough different people, via contact numbers, she could consult if she needed help, they would be fine.

When my son and his new aide arrived, signed in and went to the room where they work, they had no more stepped inside the door and they were immediately confronted by a family member of our former aide who also volunteers and is also there as a job coach for another agency. She also happens to work for the same agency we use, as well.

She approached my son and his aide, demanding to know if she was with my son, if she was permanent or temporary, if she had been trained. Our aide said that she told her she was permanent, as long as my son would have her and he said she’s not going anywhere. Our aide informed her that she had a lot of instructions and felt comfortable with what they were doing, if she needed help, she’d ask someone. When they were getting settled, this other individual brought over a box of materials and a folder with stickers in it. When my son’s aide looked at the sticker on the box and the number on the stickers she immediately realized they didn’t match. She brought this to her attention and she laughed, said it must be mistake.

My son’s aide expressed to me that she felt she was being set up, that it was a test, that this individual was trying to sabotage her performance with my son. Later, a co-worker of this other individual approached my son’s aide, scolding her to not give any other work, but items with a certain number on it, to a special needs individual who was there with another agency. Our aide explained that she was not there to work with anyone but my son, that she did not, would not, give any work to the other individual. Again, she felt as if this relative of our former aide was putting this woman up to doing this.

When they returned home and told me what happened, I called the volunteer department at the hospital and asked if this individual had more responsibility, more of a role at the hospital than I was aware of. I was assured she did not, was not an employee of the hospital, had no responsibility to train or direct anyone in that department and in fact was signed in as a job coach that day. I called the local agency this person works for and talked to her direct supervisor, explaining that I don’t appreciate their employee interfering with my son’s services. They explained to me that she was NOT there on the clock, was in fact there as a private person on her own time. The supervisor agreed with me that this individual had no business even approaching my son or his aide. I was assured that the supervisor would call her and address it with her and that she was going to talk to the folks at the volunteer dept. at the hospital, that she was not comfortable with them allowing this person to sign in as a job coach when she was not on the clock as a job coach, was not there with a client.

Within a day, I got a call from the volunteer dept. explaining they didn’t realize she was there on her own time, rather than accompanying a client. They gave her a second designation of ‘volunteer’ and instructed her to use it when she was volunteering on her own time so her time was accurately recorded. I thanked them for letting me know.

I made contact with the second agency she is employed by because I wanted them to know what had happened and allow them to see if she was on the clock with them. They agreed with me, she had no business even approaching my son and his aide. They acknowledged that if she’s there on her own time, she’s a volunteer, with no more authority than my son has, having no business trying to direct anyone.

When my son and his aide returned to the volunteer position on the 12th, this individual was there, but stayed on the other side of the room, in the corner and didn’t interact. I’d been told that both her employers and the hospital had explained to her that she has no authority in the department.

Everyone agreed with me that it appeared to be intimidation, both the former aide showing up and the doors being locked so my son couldn’t get in to volunteer, apparently wanting to see who was going to come in with him AND her relative being aggressive with our new aide.

We’ve discussed our options and determined that if this nonsense continues, we’ll have to pursue getting restraining orders against them both.

It’s such a shame, such a negative reflection on both of these individuals, that they would choose to intimidate a person with special needs. I felt bad about having to let our former aide go, but this nonsense reassures me that we did the right thing and my son was right in no longer feeling comfortable about being with her.

I’m tired of putting up with this ridiculousness. No more! People need to take responsibility for their own actions.



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Not feeling the loss of a loved one, or loss of any tangible thing… feeling a sense of loss… loss of things I value.

I’ve tried to be a considerate person, to be caring, to be empathetic. I’ve been told that I sacrifice what’s best for myself and my loved ones too easily and too often because I put the needs and feelings of others ahead of our own.

I’ve been lectured quite a bit in the past year or so about prioritizing the needs of others and not standing up for those I love, what we need.

This happened with my son’s aide. Over the course of the last year, I’ve asked my son to understand, to be patient, tolerant. I’ve asked him to understand something he’s not able to comprehend, something that has caused him great stress and anxiety. He asked to talk to his support coordinator a couple of times, as he didn’t understand and was feeling like he didn’t matter, that his aide had changed and wasn’t the same person anymore.

Push finally came to shove… he asked me to “pull the plug” on the whole program, that he was tired of this, tired of feeling like he didn’t matter, tired of having to be patient while all these different people who’d been his aide went through all kinds of crises. He was tired of his schedule being changed, of not knowing from week to week who would be coming to work with him, whether anyone would. It was too much for him to process.

Frankly, it was too much for me to process. Having lost my power chair, experiencing increased pain, lack of sleep, side effects of new medications, increased memory loss issues, etc., it was becoming harder for me to remember dates, etc. My son was talking about nothing but the aide situation, from the time I opened my bedroom door in the morning, until he went to bed at night.

The agency had directed me to Human Resources regarding the second medical leave. The person who supervises the agency suggested that since we had no start date, duration, nor ending date for the medical leave, that Dec. 22 we should move the aide to back-up, keeping her on the payroll, but hiring someone to take her place, because there would surely be time off for pre-op tests, post-op follow up visits, etc.

Before we could get to that point, after an outing, my son told me he wasn’t comfortable going out with her anymore. She wasn’t the same person, she was ignoring him, he didn’t like the way she was treating me. We had an incident when they returned from volunteering, that left him and I extremely upset.

After consulting with Human Resources, they reminded me again that he comes first, that the aide’s problems were her problems and shouldn’t be brought into our home, to her job and that my son’s comfort and safety were the priorities we needed to focus on. I was given instruction to terminate.

I had felt, for a year, like a monster… knowing what she was dealing with, but being concerned about my son’s progress, his program. I had put him and his needs behind her needs, trying to be compassionate, trying to be understanding. Suddenly, I realized I had sacrificed him, for a year… his feelings, his needs, his comfort level, trying to be compassionate to our friend/his aide, when I should have been compassionate toward him. I’d been compassionate toward someone who did not appreciate the effort to accommodate her, did not appreciate the way her illness impacted everyone around her, that a young man with an intellectual disability could not possibly comprehend what was happening. I was supposed to be his advocate, his voice, his protector and I didn’t do that.

The search for a new aide began. Someone I know with approximately 30 years experience in care giving, having a 31 year old child with special needs, who’d managed her parent’s aides and has been an aide, showed interest in the position. Immediately, she made it clear that they must get the entire 15 hours a week of available time in every week, but then began this process by postponing the dates for us to work on the paperwork necessary to hire an aide, to reschedule appointments we had, etc. I’ve offered her an opportunity to job shadow our back-up aide at the volunteer location, so she can learn what’s expected, but she’s had excuses for not being able to do so yet, asking me if Christmas break came before she was able to do so, would the back-up aide take her up on her own time, off the clock and show her.

Already, though I’ve made it clear I’m NOT doing what I did with the last aide, with a number of our last aides, that I’m not going to make the needs and feelings of the aide a priority over my son’s, I’ve got someone wanting their needs should be paramount.

I feel a sense of loss… loss of myself, of what I value, what’s important to me, a sense of loss in that I cannot be compassionate with my son and others, at the same time because it becomes a conflict of interest. I feel that I can’t be true to myself. I dearly love my son, I want him to be happy, to be successful and I guess I feel a sense of loss of the very idealistic view that others would want these things too.

Hopefully, with the new year, we’ll close this chapter, put all of this behind us, and start a new chapter.

Wearing Multiple Hats


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In my last blog, The Permanent, Occasional, Part-Time, Sometimes Aide, I talked about how the absences of my son’s Habilitation Aide have affected us.

Today, his aide posted on Facebook, “Some people like to tell me how much of an inconvenience MY cancer was to them.” I don’t know that that statement had anything to do with us, but I began to wonder if people reading my blog might interpret it that way.

All of us, to some degree or another, wear multiple hats, some of us are better at managing them than others.

When it comes to my son’s program and his aides, I wear three hats directly related to his services.

  • I’m the managing employer of his program/services. I’m responsible for hiring, firing staff; for scheduling staff; for approving and monitoring hours submitted on time sheets; for monthly reporting forms that verify we’re working toward approved goals in an appropriate manner. I’m responsible for enforcing the policies of the agency that’s facilitating our program. I’m responsible for scheduling monitoring appointments and establishing an Individualized Service Plan (ISP) with the agency and local county office. I answer to the agency facilitating our program.
  • I’m a parent. My son is my only child, an adult with special needs that will need support and assistance the rest of his life. His physical, mental and emotional health are my responsibility. He is my priority. I am his advocate. I am his voice.
  • I’m a friend. Our Habilitation aide was our friend, before she was our son’s aide. We laughed, we shared some painful experiences. I care deeply about her, as a friend. I’d like to take her pain and struggling from her, though I know the most I can do is listen. We’ve been mutually supportive of one another at difficult times.

Balancing all these hats, wearing them all at one time, is nearly impossible, as they are often in conflict with one another.

The friend understands the effects of cancer, of cancer treatment, how difficult it is to go through life altering treatment, how medications can change who we are, how we think, what we feel. I know the effects of medications, as I experience them myself. I know what it’s like to live with chronic pain, physical changes, etc. I am not the same person I was prior to my diagnoses. I fully understand. This is why we’ve been trying to be understanding, why I’ve been trying to explain to my son that we can’t expect his aide to be the same person she was before, that it might take a while for her to be more like the person he knew, get “on track,” as he says. I’m asking him weekly to be patient.

The parent is trying to understand both the aide’s and my son’s positions, trying to use this experience as a learning opportunity, praising him for his effort to adjust to changes to his routine, to his schedule, accepting that there are things, due to these changes that he can’t do, as much as he’d like to. It’s a lot to ask him to comprehend and adjust to. He’s always had trouble adjusting to change, but he’s doing better. He does a lot of perseverating, he talks incessantly about things that he stresses and worries about. Since June, he hasn’t stopped talking about whether or not his aide is going to come. We get up in the morning and as soon as we have an opportunity to talk to one another, whether his aide is coming on the next scheduled day is the topic of conversation. It’s the first and the last thing he talks about every day. His aide doesn’t realize this, because he’s afraid of being honest about how he feels because he had an aide previously who told him to be honest, tell her how he felt, but the first time he did, she blew up at him. At home, he feels comfortable, he knows I listen, I know how much we sometimes need to vent. (That’s the whole reason I have a blog!)

The Managing Employer has to be constantly thinking about the responsibilities that come with the role. I try to keep my son’s staff happy, address their concerns, make sure they know what’s expected of them and I also have a responsibility to the agency that our aide is working for/representing. The funding that pays for an aide, that pays for our program has strict guidelines. If we don’t use the funding and hours in our budget, we could have our budget reduced in the next fiscal year. If we violate policies, aren’t following guidelines set forth by the funding source, we could lose the funding completely. If we aren’t doing things that are relevant to our stated outcomes, they consider us to be misusing the funding then both myself and our aide could be forced to pay back money paid for services. If we lose the waiver that funds his program, he will not have support available to him later in life when my husband and I are no longer here, he would also lose his Medicaid, as he currently qualifies because of the waiver.

I have been counseled in the past, by representatives of the agency, the county office, that I can’t accommodate everyone, have to enforce agency policies, should not ever be sacrificing my son’s needs, his services, for our staff. I feel pulled in a multitude of directions, trying to meet the expectations of, feeling responsible to everyone involved.

When I write about how these absences affect my son, how it complicates things, those are concerns I have to have, things I have to consider, as the managing employer of his services, as his parent. It’s not about how his aide’s health problems “inconvenience” us, it’s about how her inability to work scheduled hours impacts his services.

I don’t know if this clarifies my last blog or not, but it certainly helped me to organize my thoughts.

The Permanent, Occasional, Part-Time, Sometimes Aide


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The whole idea of having an Habilitation Aide for my son is becoming more and more bizarre as time goes on.

We’d been so thrilled with the friend who’d taken the position of his aide. For two years, things were great. There was an occasional request for time off because of an activity with her kids or one of them being sick, snow days, etc., but nothing major.

Last year she broke the news to us that she’d been diagnosed with cancer. She continued to work through the chemo-therapy, as we’d adjusted her schedule to accommodate the treatments. When she knew the first of two surgeries was approaching, she went on a medical leave of absence. We guaranteed her that her job would be here for her when she came back, not to worry. (She recommended a friend of hers as a back-up aide to take her place while she was off work.)

During her medical leave we hardly heard from her. When I did try to find out how she was doing, she was evasive. I chalked that up to the medications she was taking.

9 months later, the time for her return arrived. She told us she was cancer free. She wasn’t able to start back on her first day of work, she then asked for the following week off. There have been a series of additional days she’s taken off for various appointments for her kids or because she said she was sick. Every month since starting back in June she’s taken time off. On average she’s missed roughly one quarter of the hours she’s been scheduled to work each month.

Last week she took two days off (it’s important to note she only works a maximum of five hours a day three days a week.) and this week she informed me she needs another 8-12 week medical leave starting in January. I immediately thought her cancer had returned. She told me no, it wasn’t that, but that she’s opted for elective reconstructive surgery. She shared that she was told she’s not a particularly good donor for the procedure, but she’s going to do it anyway.

I told her I would have to talk to the agency she’s technically working for to see how they’d want to handle that, as they’ve reminded me a number of times that, paraphrasing, this job is no different from any other, an employee can’t just come and tell you they are taking time off, or call off repeatedly and expect to be accommodated and not put their job in jeopardy. They’ve also reminded me that I shouldn’t be changing my son’s schedule to accommodate his aides, because they have a set schedule, they know what it is, it’s what works for my son and they should be scheduling around their work hours, not asking to have their hours arranged to suit other appointments they’re making. I’ve explained to her that in the past the agency intervened and terminated one of our aides because of excessive absenteeism.

She became very defensive, saying it’s part of her cancer treatment and as such they can’t fire her for taking medical leave. She then informed me that she’d fight them on it.

I was gobsmacked by her attitude and aggressiveness. As if I was doing something to her, inconveniencing her, being unreasonable. I told her I still wanted to know what the agency’s policy was before I said anything more. I reassured my son that we’d talk to our back up aide, even though it was a long way off, and let her know we’d be needing her. I told him not to stress about it. She interjected that he’d be fine. I said no, he might seem fine when he’s with you, but when he’s home with us, he stresses over things like this, talks about this sort of disruption to his routine incessantly.

When they had left for the bus stop, I fell to pieces, sitting at the kitchen table.

The folks we’ve employed as aides for my son’s program have, not one of them, even seemed to consider how their disruptions to his routine impact our family. He’s so fed up with all the schedule and routine changes that he doesn’t even want to participate in the program we’ve created for him anymore.

We’ve been dealing with changes to my husband’s schedule with mandatory overtime being different every week (sometimes Fridays, sometimes Fridays and Saturdays, sometimes working only regular hours with no consistency), which is disruptive for our son and for me.

I’ve been dealing with my own health issues, the loss of my powerchair, side effects and complications from medications, increased pain. I’m having a lot of trouble with my memory, keeping things straight. There have been changes to reporting procedures with the agency that have caused a lot of stress.

I contacted the agency and asked if our aide was right, if reconstructive surgery was considered cancer treatment per our state’s labor laws. I asked if she’d be required, after missing so much time, to submit doctor’s excuses with each additional absence. I asked them how they wanted to handle another extended medical leave. They informed me that they had to consult Human Resources with these questions.

They told me they will likely not even approach their decision as to how to handle the situation based on the medical leave per se, but on what is best for my son, how this will effect him. We discussed that he’s been complaining since she came back to work that she’s not the same, that some days she’s not ‘present.’ He’s even told her he would like her to be more present. He’s noticed that she’s not communicating with me hardly at all, not at all like she used to. She’s not communicating about what they’re doing when out, if there’s been progress, any issues, etc. I ask her each day, but I get little to no response, everything is always fine. I can’t put fine down on reporting forms. She brings him home, says she’ll see us on her next scheduled day and out the door she goes.

Things are most certainly different now. The dynamic between my son and his aide is different, the dynamic between his aide and I is different, there’s a distance there that’s uncomfortable and awkward.

I haven’t been able to communicate to her how these months since her return have affected us, how all these chronic absences have made us feel. My son feels as if he doesn’t matter and has said so. I feel taken advantage of, that telling her not to worry, her job would be waiting for her, gave her the wrong idea about taking time off in general. I’ve become resentful, just waiting for the next shoe to drop. That’s incredibly stressful. It’s also made me distrust her, to some degree, because she’s become so unreliable and inconsistent. My trust has also been tested by the fact that I’ve caught her posting on Facebook while she’s on the clock with my son, twice, since returning. That’s an absolute violation of policy.

I don’t know how this is going to work out, where this is going, but I fear it’s going to become more of a mess than it is now, before it’s over. I’m trying very hard to reassure my son, I tell him daily that we have to take things one day at a time, that we are giving her the benefit of the doubt because of how cancer treatment affects patients, that we hope she, as my son says, “gets back on track” soon. I try to remain hopeful with him, optimistic, but here, on my blog… I can share my worries, concerns and feelings that i wouldn’t voice to him.

Trying to remain optimistic.

A Hard Thing to Do


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I have always tried to be available to my friends, whatever they’ve needed, I’ve tried to be ‘there.’ I’ve taken friends into my home when they were in need, I’ve included them in family activities, family dinners, holidays, etc. I’ve shared furniture, appliances, clothing, whatever I could.

My Dad was someone who helped anyone he could. He always had an open door to friends and family. That is one thing I learned about him, after my parents divorced that I’d never known before, that I very much admired.

My friend of 39 years, whom I’ve written about many times before, whom I’m terribly concerned about, has finally reached a point in her life where I don’t think anyone can help her.

She recently revealed that her father will not be able to help her by paying her rent any long. January 1, 2017 she will again be responsible for paying her own rent. Her son is planning to move out on his own again as soon as he can find a place to rent.

She’s working 25 hours a week at $9 an hour, therefore doesn’t have enough income to pay rent, utilities, her phone contract, her health insurance, medical bills, transportation and groceries.

She’s had a full year to look for a better paying job, but hasn’t put in more than 2 applications, most of which are now completed online. She’s not saved a penny toward a possible security deposit and first month’s rent. She’s not even so much as looked at a paper to see what apartments are available or what rents are in this area.

She has there months to get her life together and stand on her own feet. She’s told me she will look into public housing and what help she can get. I used to help people put in applications for public housing, refer them for financial help, so I know there is a one to two year waiting list for public housing in this area and the only people who get priority consideration are persons with disabilities and the elderly. Financial help from charities is often consumed during the first half of each month and by the end of the year many of them have exhausted their funds until the new year.

I asked her what she intended to do when she couldn’t pay rent in January, when she has to find another apartment. How could she not be freaking out? There’s no way she can get a different job, save enough money for security and rent, before the end of December.

I asked if she was not feeling a sense of urgency because she was going to move back home with her parents again. She said most likely not, they wouldn’t let her. I decided, before she had a chance to ask me, I would let her know that we could not help her again.

I told her I knew she hadn’t asked, didn’t even know if she was thinking about asking, but that I could not offer to take her in, to let her stay in our spare bedroom, again. I’d done so twice before, taking her and her son in, until she could get on her feet. I told her I didn’t want to allow her to possibly think it was an option, so it was better to just tell her right up front, than to wait until the very last moment and have to turn her away. This way she knows what she’s facing, what she needs to do for herself.

That was a very hard thing to do. I recognize that my husband and I, her parents and some of her co-workers have enabled her for decades, helping her, supporting her, preventing her from failing. Now, we all find ourselves in situations where we’re not able to help her.

I fear she’s going to end up homeless, lose everything she has. Her father just bought her a new refrigerator and stove. She bought a new sofa and chair. If she can’t find a place to live, she’s either going to have to put it all in storage or ask someone to keep it for her. I fear she’ll just give it all away, which is something she has a habit of doing.

She’s having health problems, as she’s developed edema in her legs and feet. Her doctor gave her fluid pills to take, but she’s not taking them like she should. Her feet are supposedly so swollen she can’t get her regular shoes on. She seems to not make the connection between filling up with fluid and the implications of having only one kidney to flush fluid from her body.

Making the decision to not let her stay with us was such a hard thing to do, but it’s the best thing for all of us. She needs to stand up on her own feet and start to take responsibility for her life and we need to think about our family, what’s best for us, without compromising us and what we have.

Such a hard thing to do.

Saying “Good Bye” to Summer


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So much has happened this Summer.


In June we planted two gardens, the one raised bed garden we’d had and a new one. In one we planted cucumbers, sweet bell peppers and tomatoes. In the other garden we planted sweet basil, brussel sprouts, fern dill, onions, oregano and garlic. The oregano and garlic didn’t come up. I’ve been watering, every day for the first month or so, then every other day since. I’ve weeded and aerated the soil, fed the plants and harvested as the veggies have appeared. We’ve shared a lot of the harvest with others, and frozen some dill, as well as made basil butter.


My friend of 39 years began, early this summer, to cancel our weekly visits, for a variety of reasons. It was too hot, too humid, her legs hurt, her arms hurt, her back hurt, she was tired, just didn’t feel like it, etc. After a number of weeks where I worked really hard to get everything I needed to have done completed before she was expected, so I could give her visit my undivided attention and having her cancel at the last minute, I told her to just suspend any further visits, as she obviously wasn’t able to come and it really wasn’t fair for me to be put in the position of not knowing what was happening from week to week.

Business Venture

In late June, or early July, a friend of mine for the past 37 years came to visit. During her visit she mentioned that she had always thought about starting a consulting business for the disability community. As we talked,  we decided we should explore the possibility of creating such a business together. We each bring something to this venture that the compliments what the other brings to it. After a planning meeting and several canceled meetings we decided that it wasn’t the right time to try to start something like this that would require so much time and commitment. We decided to wait until things quiet down for the both of us a bit, then try again.

Weight Loss

For the past year, from the first week of August 2015, and currently, I’ve been working with my new doctor to lose weight. Over the course of the year I changed my diet, and tried to walk more. At first I seriously overdid it and suffered terribly. I lost the use of my power chair when one of the motors seized. My  insurance company hadn’t paid for the previous repairs that had been done, so the provider who maintains my chair wasn’t willing to replace the motor. I pulled my manual chair out of the closet and decided to use it like a walker and push it around the block, being able to stop when needed and sit, to catch my breath and let my muscles rest. I started out walking one block, after a period of time I added another block. During my last check up, in July, I had lost a total of 62 pounds. At that time my doctor decided to add a weight loss medication, so I wouldn’t plateau and get discouraged. I’ve been walking 3 blocks daily since the first week of August, tried 4 blocks two days in a row, even tried 3 blocks twice a day for a couple of days, until I started having some troubling numbness in my right hand and foot, so I had to back off and go back to one or two blocks per day. I see the doctor for a weigh-in in October.


On August 4, my husband and I traveled to a county fair to see a performer I’d first seen on youtube back in May. I’d contacted the fair grounds to get information about tickets, there weren’t any the concert was included in the entrance fee to the fair. I asked about accessible parking and an accessible seating area. I was told there was accessible parking near the gate and there were two staffed golf carts that would take handicapped individuals directly to the stage area. I’d been in terrible pain for aobut 2 weeks or more before the concert and could hardly get around. The day before the concert I almost decided not to go. We drove a little more than two hours to the fair. When we arrived there were carts that transported folks with disabilities to the gate, but everyone had to walk down a gravel road, across a covered bridge, down the gravel road, through a field to the stage. The ‘accessible seating area’ was a grassy spot behind a barrier at each corner of the stage, but there were VIP seats still available and the $15 VIP price included both shows at 7 pm and 9 pm. We got those seats.

We saw Shawn Klush, the First Ultimate Elvis Presley Tribute Artist as awarded by Elvis Presley Enterprises and the winner of the BBC’s World’s Greatest Elvis contest. Both shows were incredible. All the pain I’d been in, the discomfort of the car trip, all went out of mind while enjoying his performance. His band was incredible, the shows were interactive and extremely entertaining. My husband rolled me up to the stage and Shawn gave me a scarf. I took tons of pictures. We met some incredible folks watching the show with us and had a good time with them. After the show, Shawn met anyone who wanted to meet him, signed autographs and took pictures with fans. I got a beautiful black and white 8×10 for him to sign and when it was my turn to meet with him, I sat across the table with him and said, “Hi Shawn.” He said, “How you doin’ baby?” in the sweetest softest Elvis voice. Every intelligent thought was instantly sucked out of my head. I got his autograph and he happily agreed to let me have a picture taken with him. After coming home I was really motivated… if I could walk the distance required to get to the stage, to get back to the car, then I could walk more and work more on losing weight and rebuilding muscle.

A member of his band friended me on Facebook and I contacted Shawn’s people to see what would be required to get him to come to my town. They’ve made contact with the venue here and I’m hoping I can do something to help bring him here.


Hubby’s been working mandatory overtime for much of the summer. That means I and our son are responsible for more of what needs to be done here at home. His overtime is finally over, for the time being, with the possibility of starting up again before the holidays. That was rough. I tried to mow part of the yard, to help out and seriously hurt myself. Our son has been helping me a lot with housework, putting away groceries, etc.

Son’s Services

Our son’s permanent aide came back in June from her 9 month medical leave. It got off to a very rough start. She missed her first day back, worked two days, then asked for an entire week off. Over the course of the Summer, she didn’t work 1/4 of all her scheduled days. I was reminded that I shouldn’t be scheduling around aides’ schedules, but rather they should be scheduling their personal appointments around our son’s schedule. Our back-up aide went back on first shift at her full time job, so she wasn’t an option. We had a friend recommend someone, as a second back-up, who had worked for her in personal home care. She was said to be very reliable and when I connected with her she was very enthusiastic. She came over and met our son, they hit it off. She came back and spent 2 hours filling out the hiring packet, but when it came to communicating with her to get her ID copied for the application, I couldn’t get a response from her. That all fell through, but now that school is back in session, our back-up aide is back on second shift, which makes her available if we need her again.


We had an issue in August, the day of the concert, where my s-i-l called as we were going out the door to say my husband’s mom wasn’t going to have  a surgery she had scheduled because her insurance wasn’t going to pay the whole fee for a two day stay, as her out of pocket expense would have been $190 per day and she couldn’t afford it. She wanted to know if my husband would help her by splitting the fee so their mom could have her surgery. It turned out, after my husband talked to his mother that she had an option, as directed by the hospital and was in fact having her surgery. As is usual, the s-i-l had jumped the gun, exaggerated and made a non-situation into a crisis, brought stress into our life.

All in all, it’s been a roller coaster of a summer, but we’re happy and plugging along. I’m learning about moderation in a couple of aspects of my life, have enforced some boundaries and taken care of myself. We’re looking enthusiastically toward the holidays and have already decorated the interior of the house with Autumn leaves and pumpkins.

It’s been an interesting summer… looking forward to a calming and relaxing Autumn.