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.

Loss

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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.

Gardens

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.

Visits

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.

Concert

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.

Overtime

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.

In-Laws

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.

Disability and Outings

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Being physically disabled forces one to consider things most people don’t even think about when planning an outing, whether it be a shopping trip, carnival, fair, dinner at a restaurant, etc.

For example, I really want to attend an outdoor concert at a fair. Before going, it’s important for me to gather crucial information about the fair grounds, seating, etc.

I contacted the fair grounds and asked them about seating. They indicated that everyone has to bring their own chair. I asked about tickets, they said the concert is included in the price of entry at the gate. I asked them if they had an accessible seating area designated, because when sitting in general seating in a wheel chair, when people in front of you stand up, you can’t see the stage. They told me they did have an accessible seating area so I can see the show.

I had to check to see how far from parking the stage area is located. They indicated that they have two teams of staff on two golf carts to transport people with disabilities to the stage.

I went online and found pictures of the stage area to determine if the seating area was paved, gravel or grass and it appears the seating area is grass, but there are gravel walkways in a grid pattern that create sections, aisles. This is important because it’s difficult to use my manual chair in thick or uneven grass, loose gravel, etc.

There are so many things to consider, to think about. It’s not as simple as just arriving, parking the car, walking the fair grounds, getting to the stage and watching the show.

I’ve been told by other folks who have attended shows at this fair that they don’t know anything about an accessible seating area, so that I shouldn’t count on such a thing because the people from the fair might not want to tell me something that would prevent me from attending, as their revenue is generated primarily from gate admission.

I know this to be true, as my husband and I attended an outdoor concert last year. I made all the same inquiries and was guaranteed there were two accessible parking areas right at the gate, that someone would help me get inside to the field and locate me in front of the sound man’s table so I would be slightly elevated and be able to see over people standing, dancing, etc. None of those things turned out to be true.

I’m planning to attend, hoping to get close enough to the stage to be able to see the show and get some good pictures. I’m hoping I can buy some memorabilia and perhaps get an autograph. There are two shows, one at 7 pm and one at 9 pm, I’m hoping to stay for both.

I’m hoping for the best, that we won’t have made a wasted trip and that I’ll be able to enjoy the show without a lot of pain or inconvenience. Wish me luck!

 

 

Struggling with Memory and Change

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I’ve realized recently that I’m having a very hard time with memory and struggling a great deal with changes to our routine.

I suspect the memory issues have a lot to do with the changes to our routine, because I just can’t keep things straight.

As I believe I shared previously, my son’s aide was diagnosed with cancer and began treatment last year. In September last year we employed a back-up aide, so our permanent aide could have surgery and continue treatment. Our plan was that the back-up aide could work until school was out this year, then, after approximately a 9 month medical leave of absence, our permanent aide would come back.

The transition didn’t take place without some stress and complications.

Our routine changed significantly with the back-up aide, as she had restrictions on her time with my son because she needed to be back no later than 1:30 to get to her full-time job. We managed to work around her needs. We were only using about two thirds of our allotted time each week. Near the end of her scheduled time with us, our back-up aide experienced recurring health problems that required time off for doctor appointments and tests. We also experienced difficulty with the volunteer position my son has had for years, as they were running out of work on the second day of each week that he had volunteered, so we had to change that routine, find another outing he could have to use our budgeted hours.

Our permanent aide was kind of vague, evasive about details regarding when she’d be able to return, but we knew the agreement had been for her to return when school let out for the Summer. She wasn’t able to return on her first day back, worked two days of her first week, then informed me that she wanted the whole following week off. I scrambled and got our back-up aide to take some hours, but her full-time job had changed and to provide her with hours would have meant changing my son’s routine to evening, from morning. I thought it would be a good experience, but he was having trouble accepting the change and he was struggling a lot with whether his permanent aide was going to actually return to work, or keep needing more time off. I wasn’t able to switch his schedule to evenings, so he missed some more of his scheduled time out.

During this time, I was really struggling with who was going to work, when, who had which restrictions to their time, etc. I just drew a blank, couldn’t keep up with the changes. It all felt out of my control. My son has a habit of perseverating on stressful things. He talks about things that worry him over and over, so a lot of my time has been spent trying to reassure him, which is difficult when I can’t remember what’s been decided, who needs what, etc.

I woke one morning to my alarm, Sidney woke and dressed to go out, but no aide arrived. I contacted the back-up and discovered she’d started first shift at her full-time job, so she didn’t intend to come until the afternoon, even though we’d not set a time for afternoon hours. I was all messed up. I knew we’d talked about Nightline bus route, but we hadn’t determined a start time for her to arrive. It was very confusing.

Since coming back, our permanent aide has expressed changes be made to her schedule for the 13th and 14th of this month, one day wanting to start a little later, but not really disrupt the schedule too much, the other day wanting to come in the afternoon and go out for dinner instead of lunch. My son doesn’t want to do that, so as it stands right now, we’re going to accommodate the change on the 13th, but going to stay home on the 14th.

I also learned that instead of coming back with the same availability she previously had, she now had time constraints, needing to be back to pick up a family member at 2:00. This had prevented us from using our full allotment of hours, waver funding. Because communication had been so poor, I hadn’t realized our permanent aide would be coming back with time restrictions and had misinformed my son as to his schedule upon her return.

While this is happening, my husband’s schedule is in flux, as he’s told they would begin annual overtime early and it would likely last through September. After a couple of weeks of overtime, he was put on notice that they would not be working overtime for a week, but he should expect to work overtime unless otherwise notified. After 3 or 4 weeks overtime ended, as other departments were behind. They were still told to expect overtime unless told otherwise. I was struggling with extra chores at home, trying to take up the slack, while also dealing with increased chronic pain.

I lost the use of my power chair nearly 3 weeks ago, about the same time as all this upheaval with the change of aides. The left motor seized, AGAIN, for the 3rd time in 8 years. I tried to get it repaired, but discovered that the insurance company hadn’t paid for the repairs that were pre-authorized in November last year. Since they hadn’t paid for last year’s repairs, the company wasn’t comfortable repairing the chair again. I currently have no idea when, if ever, I’ll get my power chair repaired. This is causing a lot of pain, forcing me to be on my feet, to stress my spine and joints, to push myself beyond my pain threshold.

There have been so many changes, so much disruption and I’m trying so hard to accommodate everyone else around me, I feel like I’m getting lost in all of this. I need help with daily things, I need some accommodation, but I can’t really ask for it, because everyone else is in need of understanding.

One of the last times I had a conversation with the agency that facilitates our waver hours for my son’s services, they reminded me that Managing Employers (my role in my son’s services) are not to schedule to accommodate their staff, but that the staff is supposed to accommodate our schedule, our needs, schedule around their working hours. I’m not sure why they reminded me of that, perhaps they are noticing the amount of hours being missed due to medical issues and scheduling requests by our aides.

I’m feeling a lot of confusion, a lot of trouble remembering what needs done and when. If it weren’t for Sidney reminding me about turning in time sheets and doctor appointments, he’s very good at remembering dates and times, I would be a real mess right now.

I have a doctor appointment this week, so I’m going to discuss this with my doctor. A friend reminded me that memory issues intensify when a woman begins menopause and I know I’m on that threshold, as I’ve been experiencing symptoms for a long time now. I hope things will even out a little bit, we’ll get some regularity and routine re-established in our lives. I know it’s not possible to have things run smooth all the time, oh how I know that… but some stability and structure would be nice.

 

 

 

 

Mother’s Day

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Every year for Mother’s day, for the past five or six years my husband has wanted to take myself, our son, and his mother for breakfast or brunch on Mother’s day. Two years ago I convinced him to take his mother out alone, for some mother and son time, as when we’re all together he tends to be quiet and put me in a position of having to carry the conversation with his mom.

Last year he insisted on a local restaurant we’d never tried, suggesting he would drive the twenty minutes to pick up his mom, while my son and I walked, rolled, respectively, to the restaurant to meet them. This particular Mother’s day it was 85°, humidity in the 80% range and sunny. It was brutal on the paved bike path to the restaurant and home after.

He had insisted, as he did this year, that my son buy my meal and he would buy his mother’s.

He knows that going out to eat is emotionally and physically uncomfortable for me, but always insists.

This year was overwhelmingly difficult. It started out with my husband being impatient with me when I first woke up and was having trouble getting ready. I explained that I had hardly slept last night because I’ve been having a great deal of joint pain the past two weeks as a result of nearly daily cold rain storms we’ve been experiencing. He snapped at me that if I didn’t want to go he’d just take her and I should stay home. I told him that wasn’t fair, seeing as how our son had spent around $100 buying new slacks, new shoes, etc. I was overwhelmed with the pain, feeling guilty for causing an issue and being effectively thrown under the bus so quickly. I pulled myself together and we were on our way.

His mother starts gossiping about her neighbors in the senior complex the moment she’s in the car. These are people we don’t know, but people we now know have criminal records, are drug addicts, are doing jail time, or are just all around obnoxious people, aside from the two or three people she actually likes.

Breakfast was uneventful, the meal was good, we ran into a friend at the restaurant, it was nice. On the way home we stopped to pick up something we’d gotten for her. My son decided to stay home, rather than make the forty minute round trip to take her home. When the guys got out of the car she said she forgot a box of jars she had sitting in the living room, jars we’d given her filled with homemade pickles and onions the latest two Summers.

When we arrived at the complex she told my husband about the jars and asked him to come in to get them. I waited in the car. He soon returned with the box, and we started home. About a third of the way home he tells me she told him his sister misses him and loves him.

That really upset me, as she’s told us she doesn’t want in the middle between them, but she was willing to pass a message for his sister, effectively putting herself in the middle. It also upset me that she didn’t bring it up in front of me, but rather deceptively.

He goes on to tell me that his sister said she missed me too, but apparently “rubs me the wrong way.”

He continued, saying that he told his mother he was sorry but this is how it is, he’s not interested in trying to have a relationship with her because it always ends the same way and that it has nothing to do with her rubbing me the wrong way, but everything to do with her lying.

He explained to me that he would be civil to his sister when the time came to take care of their mother’s final affairs, but plans to tell her at that time that they are through, she’s dead to him.

I became very emotional, as he explained how according to his sister, according to the only version of events his mother has, I’m at fault for the rift in the family.

This triggered the same conversation we have every time this comes up. He said his mother was really stressed about them not speaking, so I suggested (as I have many times in the past) that he should sit down with his mother and explain our side of this situation. That way she wouldn’t have to be so stressed, as she’d have a better understanding of how things got this way.

He argued that he doesn’t think it will help, though I pointed out that not fully understanding that this isn’t about a single instance, but a cumulative effect that started the first year we were married, and giving her something other than the one-sided version she’s been getting to consider, she might be able to better accept the situation and perhaps stop fretting over it, if she is indeed fretting over it, rather than just passing along unwanted messages.

He argued that it would do no good. I fell to pieces. This brought up all the previous hurt, the horrible confrontations and the undeniable reality that I have never been, nor will I ever be accepted as part of their family. I’ve become his sister’s scapegoat.

It also brought to the forefront, once again, that it is more important to my husband not to rock the family boat, than to protect me from their abuse.

As I cried, I expressed to my husband that I’d never done a thing to hurt any of them, that all I ever wanted was to be accepted, treated like family, and to that end, went out of my way to be there for them whenever I was needed, to be supportive and loving. He acknowledged that I was right and that his sister knew that, was painting a very different picture of me to avoid taking any responsibility.

I begged him to sit down with her, to pleases explain his side, but he claimed we’d already tried, which I have no memory of. We’ve defended ourselves during an attack, but never tried to lay out a full picture of what we’ve endured having tried to have a relationship with her.

I cried the whole way home and for about an hour after being home.

I’m so tired of being disrespected by his mother and sister. I don’t know what more I could do to try to be accepted. At this point I don’t want to try any longer.

I’m never going to get through to them, nor apparently to him.

I’ve decided that I’m not participating any longer in taking her out or in taking her shopping later in the year when we stock her freezers and pantry. He can do it himself. In the past when I suggested him taking her out on his own, when I wasn’t feeling up to it, he got upset saying he wanted me with him, but after this morning, that’s no longer a viable argument.

I had to nap later in the day, as the result of a headache. It really turned out to be a rotten and emotional day.

Garbage Truck

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“Many people are like garbage trucks. They run around full of garbage, full of frustration, full of anger and full of disappointment. As their garbage piles up, they look for a place to dump it. And if you let them, they ‘ll dump it on  you.” – David J. Pollay

I learned this philosophy a while back, but it’s been incredibly difficult for me to refuse delivery. I am extremely empathetic, always trying to put myself in the other person’s shoes, trying desperately to understand, give people the benefit of the doubt.

I will do everything within my power to help someone out. I’ll listen, offer a shoulder to cry on, provide advice if the situation warrants it, share something I have, etc. Sometimes my decision to help, even if only listening, gets me into trouble.

Lately the same garbage truck isn’t just backing up and unloading, it’s running me over. I’m overwhelmed, exhausted, both physically and mentally. I’m stressed beyond my breaking point, having cried, feeling trapped.

The same person keeps unloading on me, week in, week out. The unloading begins before the garbage truck is even inside my yard, in some cases. The unloading can continue for hours.

The latest delivery tested my patience and I finally responded, having tried to keep my opinions to myself. I didn’t understand what was being conveyed, didn’t fully understand why the things being discussed were problems and why there were no viable solutions.

Every suggestion I offered to remedy the multitude of issues was met with a quick dismissal. Every question I asked, trying to understand the quick condemnations was met with contempt, anger.

It’s hard to help someone when they’re determined to and invested in perpetuating their misery. When people manufacture crises for themselves and seek to get attention or pity from others, they aren’t really interested in making things better. Solutions would end the attention, end their ability to dominate conversations, manipulate feelings. End their complaining.

Today, my garbage truck backed into my life yet again and began to unload. I decided I had to say something. I put a stop to the rubbish that was cascading down on top of me and made my feelings known. I explained how difficult it is to get through my days, the real struggles I face and that I found it insulting and frustrating to listen to someone manufacture ailments and issues, lecturing me about disability, etc., when I have real issues I’m dealing with and I find the strength, sometimes I’m not sure how, to push through every day and keep moving, striving to contribute, overcome obstacles.

For the time being it appears I’ve refused delivery, but I’ve thought I’d made a break through in the past, only to have things revert back to the way they were. I’m finding I have less and less patience, become frustrated more quickly and have less tact when confronting her. I feel good, having gotten some things off my chest today. I don’t know how long it will last, I’m sure the garbage truck will soon back over me again.