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.

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.

Health Care?


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Back in November, about a week before Thanksgiving, my son came down with a chest cold that included a nasty cough. Within a week I had the cough. I treated it with a mucus reliever, cough drops and vaporub.

My cough kept worsening throughout December. I was up most of the night coughing and was coughing so hard and forcefully I’d begun gagging. I was pulling muscles in my chest from coughing so hard. I’d even begun retching and had produced thick, clear mucus. I was using my rescue inhaler every 2 or 3 hours, as it had been prescribed to use every 2-4 hours as needed for cough.

I was able to get in to see my doctor. While she didn’t hear any wheezing in my lungs, she concluded that it was probably caused by my asthma. She prescribed a steroid for 11 days and more mucus relief, continued use of cough drops and vaporub. She told me when I was feeling 100% she’d order an x-ray to see what my lungs look like when I’m well. I had an appointment scheduled for early February.

About two weeks before my February appointment, the doctor’s office called to say they needed to reschedule. (They had already rescheduled my husband once previously.) They wanted to reschedule both my husband and I, we had back to back appointments on the same afternoon. They didn’t have another set of appointments available back to back, or even on the same day, or in the same month. They scheduled my husband for late in March and me in early April.

Two Mondays ago I was hurting so badly, having only been sleeping for approximately 2-3 hours a night, coughing all throughout the day and night, gagging and retching so hard, it hurt to move. I was exhausted. I took my powerchair on the city bus (something I hate to do because it’s such an involved process getting on, being strapped in, moving other riders from the area where a wheelchair can be secured, etc.) and went to the ER. I left my house at 12:40, got the bus at 12:57 and arrived at the ER at 1:15. At approximately 2:00 I was taken into triage, checked my BP, pulse, etc. and explained why I was there. I was sent back out to the waiting room.

At 6:15 I was taken back to an exam suite where two nurses checked my blood oxygen level, took my temp, BP, pulse and listened to my chest. They told me they didn’t hear any wheezing and that my blood oxygen level was 100% – not something they would expect to see if the issue was asthma related.

A doctor came in about five minutes later and had a quick listen. She looked in my ears, at my throat and in my ears. She immediately informed me that it appeared I had chronic sinusitis. She saw fluid behind my left ear and my throat was irritated. She informed me that the previous treatment prescribed by my doctor would not have had any affect on sinusitis. She prescribed an antibiotic and suggested taking Coricidin HBP, continuing the cough drops and vaporub, but also added Flonase nasal spray. The antibiotic was to be used for 14 days. She suggested following up with my doctor to see if changing my asthma inhaler might help.

I arrived home around 7:00. My husband ran to the pharmacy to have my prescription filled.

On Wednesday last week, I ran out of my blood pressure medication and my fluid pill. I called the pharmacy’s automated refill number and discovered that my blood pressure medication didn’t have any refills. The pharmacy offered to contact the doctor’s office for a refill.

Last Friday the doctor’s office called and wanted to reschedule my husband’s appointment again, saying a family emergency had come up, which was the same excuse they used the last two times they rescheduled us. It’s important to understand that my husband is diabetic and requires blood work and medication checks at regular intervals. Earlier that morning, my husband stopped by the pharmacy to pick up my medication. The fluid pill was there, but not the blood pressure medication. They indicated they’d not heard back from the doctor’s office yet and to try back later. They would fax the request in again.

I called my doctor’s office to see what was holding up the prescription and they indicated they’d not received any fax requesting refills for me. I gave them the info off the bottle and they said they’d take care of it. Later, Friday night we were able to pick up the medication, to my relief, as I’d only had enough medication until Saturday (thus, why I called for refills on Wednesday).

After 4 months I’m finally starting to get some limited relief. I’m still coughing, still experiencing a sinus headache, still dealing with pulled muscles and a sore throat, but the gagging is waning, as is the retching. I’m sleeping a little bit more, but still waking in the night to coughing spells.

I’d like someone to explain to me what good it is to have a primary care physician if you can never get scheduled to see them? If you end up having to go to the ER because you can’t see your doctor? What good is having insurance if your doctor only wants to run tests when you’re 100%, rather than when you’re ill to figure out what’s making you ill?

I pay $10 for an office visit co-pay with my insurance, but $75 co-pay to be seen in the ER.

My doctor’s office cancels your appointment if you’re more than 15 minutes late for an appointment and if you are late three times (regardless of the reason) they drop you as a patient, but they can cancel appointments 4 times in 8 months and there’s nothing you can do about it.

My husband and I both take medications that are considered ‘life sustaining.’ How can they justify cancelling appointments over and over again, pushing appointments back by months, when they need to be monitoring medications?

Our health care system is clearly broken. Patient care doesn’t seem to be a priority by anyone’s standards. Making sure they get paid certainly is. Before I left the ER they wanted to know how I intended to pay the $75 co-pay.

It’s incredibly frustrating! I’m dealing with constant fatigue, feeling completely worn out. I experienced side effects from the steroid I was on and from the antibiotic as well. I can’t wait to see what the doctor will have to say when I see her on April 5.



What the Heck are You Talking About?


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I really don’t like constantly discussing my friend in my blogs. I don’t want people to think that I use my blogs to ‘gossip’ about or trash other people. It’s never about that, it’s about trying to work things out in my own mind, by writing about them, and perhaps getting some feedback or ideas from others who don’t have the emotional involvement I do.

I know that sometimes our own perspectives can be slanted, so it can help to write something out and go back, outside of the emotion or stress, and revisit a situation to try to better understand the dynamics of a given situation or relationship.

I’ve written about my friend’s health and how it’s recently impacted her financial  situation. She’s lost her assistant manager position, lost full-time hours, lost her salary taking a dollar an hour cut in pay as the result of an extended medical leave to have surgery to remove her kidney.

I’ve written in the past also about her ongoing financial issues, her spending habits and inability to maintain any kind of budget. It’s frustrating, listening to her constant complaints about not being able to pay for basic necessities, trying to help her brainstorm ways to handle some of her debt.

This past week, I paid her back for the Lakota language course she insisted on buying for me, as she bought one for herself and for me. I wrote her a check and handed it to her, telling her I know she needs the money, I always intended to pay her back. She accepted it and cashed it the next day.

She visited on Wednesday. During her visit she spent a lot of time talking about her financial troubles. She talked about having not gotten out to put in any applications yet, to find a new job. She’d not sent out any of the resumes I’d updated and printed out for her. She explained that she had no clue what she wanted to do.

She explained to me that she is getting a few food stamps each month. She’s bringing home half the income she was before her surgery. She reiterated that her father had paid 12 months of rent for her, to help her out. She said that her father had also given her a couple hundred dollars for her birthday, and of course, I’d given her the money for the language course.

She started to tell me how she’s thinking about going back to school. I asked her if she was thinking about expanding on her Associates Degree in Business Management, as she’d talked about wanting to work in accounting or bookkeeping. She made a face and told me she didn’t want to go back to school to get a career, she was just thinking about taking some random courses, things she was interested in.

From there she told me she needed to get a new laptop and wanted a tablet as well, in case she decided to take online courses and to watch television since she doesn’t have a TV (respectively).

I tried to redirect the discussion, explaining that I’d heard of a new store in our local Mall and that my hubby and son had decided to get me a gift certificate for the store for my birthday the first week of March. She excitedly talked over me telling me she knew what store I was talking about and had just spent about $100 in that store, that she wanted to go back to buy a blanket she’d seen, for $40.

She went back to her finances, telling me she’s not made a single payment on her doctor or hospital bills and she’s not even gotten them all yet. She’s estimated her portion of the bills will be about $10,000.

She said she thinks she can put together about $700 every two months, which she wanted to pay on rent, to extend how long her rent is paid in advance. I asked her if she thinks she can put that much money aside every couple of months, why not put that toward payments on the hospital bills. She definitively responded “those bills aren’t going to get paid.”

She went on to explain that she needed to extend the rent payments, in advance, in case it took her a year or longer to find another job. I asked her if she really thought it was going to take that long and she said she doesn’t want to go out while it’s so cold outside.

She indicated she was going to have to go to the city bus depot to buy another monthly bus pass, that the one she already bought ran out before her next follow up appointment with her surgeon. She said a month pass costs $41. She’d only used it maybe three times in a month. I asked her, if she’s not planning on going out often in the cold, why not buy 5 day passes for $10 and put them in her wallet, so when she has an appointment or decides to go out, she has a pass available, but isn’t under a time restriction for using them. It would save her a lot of money, especially since she’s not planning on making maximum use of the monthly pass. She said she’d already decided to get the monthly pass.

She went on to tell me she plans to buy another cell phone. She’s already got 4 of them, one she uses for playing games, one she uses as an mp3 player, one that she says doesn’t have enough volume for her to hear it and another she uses as her only phone. She wants a new one that has a bigger screen, wants to buy a sim package so she can use whatever phone she buys with any service.

I was sitting here thinking, the whole time she was talking, “What are you talking about?” I just couldn’t wrap my head around all the things she was rambling on about. Nothing she was saying made any sense to me. With only $600 of income coming into her home each month (her son also gives her $250 for staying with her, but is now planning to move out as soon as possible), how could she really get by? All kinds of things went through my head, things I wanted to say, could have said, but chose to bite back and be silent.

I was thinking how my husband and I have more than three times the monthly income my friend has. We own our car and pay upkeep and insurance for that, something she doesn’t have to worry about, having never learned to drive. Our mortgage (including insurance and taxes) is less than her monthly rent. We have a triple play package for phone, internet and cable, an electric bill, recycling bill and garbage bill, a quarterly water/sewage bill, as well as credit card payments (something she’s let default in the past). We are living paycheck to paycheck. We can’t go buy new clothes or necessities when we need them, have to budget for them and save… how can she be making so little, can’t afford to pay her own rent, her doctor’s bills, buy groceries, etc. and still go out and buy $100 worth of frivolous merchandise, be planning to buy a laptop and tablet, a new phone, etc. ?

How can she have huge bills, like her medical expenses, insurance premiums, etc., and not feel some sense of responsibility, some sense of urgency to secure another job, increase her income? How could she be so flippant about her situation?

She’s just turned 52 this month. Her father is still paying her bills, bailing her out and picking up the pieces after her disastrous choices and poor money management. I don’t want to see her lose everything, but as long as her father keeps bailing her out, she never has to take responsibility for her own life, she never has to stand on her own two feet, never has to mature and act like an adult.

I just don’t understand the way she thinks. She’s accused me of being jealous of her father giving her money and helping her. I’ve never understood why she would think that, as I never accepted help from my own father, even when he offered, because I valued my independence, wanted to take care of myself, make my own decisions and be responsible. When I left home I was told I could never go back, there was no option to fail. I took that seriously. I either had to make it on my own, or fail and live with the consequences of that.

I think she should decline help from her father, when she does accept his help she should pay him back. I would be embarrassed, ashamed, if my father were bailing me out at every turn, especially at the age of 52. He’s not helping her, he’s enabling her, rewarding her bad decisions and preventing her from experiencing the consequences of her actions. She’s not matured, she’s still a teenager, with her hand out, expecting Daddy to fix everything.

I have heard her financial nonsense many times in the past 39 years, but Wednesday I have to say, I was stunned, stunned by how tone deaf she is to the seriousness of her situation. I’m not sure how much longer I’m going to be able to hold my tongue and not give her a healthy dose of tough love.

“Dragged Into This”


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Something I haven’t shared much, if at all, is that I have had a life long interest in Native Americans.

When I was a little girl, not yet a teen, my parents let a Great Aunt take us to a Vacation Bible School program one evening. Native Americans, in full regalia, did a presentation. I don’t remember what they talked about, probably couldn’t have told you at the time either, I was so enamored by the beautiful feathers, leather fringed shirts, bead work, drums, etc.

That year at our local Town Meeting, for the fourth of July, Native Americans performed, danced and sang. They had a table of handmade bead work, leather pieces, etc. My father bought me a pair of ankle bells.

During my lifetime, I’ve collected some Native American decor and enjoyed learning about their culture, spirituality, and lives.

When Dances With Wolves came out, I probably watched that dozens of times. They spoke the Lakota language, and the movie exposed me to their specific beliefs and lifestyle.

About 6 or 7 months ago I realized I was having increased difficulty with my short term memory. A friend online suggested that learning a language could be a great way to strengthen my memory, keep my mind active, as I get older.

I found some great videos on You Tube that provided simple language lessons for the Lakota Sioux language. I started learning some basic words, then some simple sentences. I sprung them on my hubby, son and best friend, confusing them, but they were interested and thought it was a pretty language.

My best friend had been talking for about 5-6 years about wanting to travel to the Dakotas, to see Native Americans, attend a Pow-Wow.

When I told her I was interested in learning the Lakota language, she said she’d like to do it with me, if I could find a program that provided lessons. I started doing some research and found a language course that included a lesson book and CDs. I explained to her that I’d found a language course, but couldn’t afford to get it until Christmas time.

She started offering to buy it, wanted to get it for both of us so we could learn it together. Even my husband had said he wanted to learn it too. She wanted to buy one that we could all share. I told her I wasn’t sure how that would work, if she wanted the book and CDs when I was using them, or vice versa. I told her I wanted to buy my own and couldn’t do so until closer to Christmas. She insisted she would buy a course for herself and for me. I declined a number of times.

She finally said she was going to just buy two courses, she wanted to get started and knew how badly I wanted to learn it. She ordered it here, asked me to make the order on my computer because her computer wasn’t working. I told her I’d pay her back. She argued that she didn’t need to be paid back, she knew she couldn’t learn it without me, she’d need motivated.

We got our courses and got started. We met once a week and went over the vocabulary, getting to the end of the first disc. It was interesting, I practiced on my own every day and when we got together we spent at least two hours working on the lessons.

It became clear, quickly, within a month, that she wasn’t practicing on her own, in fact, she admitted to that. She started telling me I would have to learn it then teach it to her. Each time we got together the amount of time allowed for working on our language lessons lessened. Some days when we got together she didn’t even bring her book with her.

One day when she’d not brought her book for the third or fourth time, I asked her if she was really interested in learning it, if it was too difficult, if she’d changed her mind. She told me it was interesting, but she didn’t think she could do it, wasn’t really committed to learning it, was looking for something else to do. I asked her why she wanted to do it with me, offered to buy the course, etc., if she wasn’t sure she really wanted to learn it, knowing that learning a language is challenging.

She responded, “Well, I got drug into this.”

I was devastated. I’d told her about it, knowing she was interested in Native Americans, the Sioux in particular, just as I was. I didn’t twist her arm, I told her what I was doing, learning words and phrases online, that I was enjoying it, I  suggested it was something we could do together, if she was interested. She was the one that kept insisting on buying the course, that she wanted to get it and get started. I certainly didn’t feel that I’d drug her into anything, or forced her in any way.

After that she stopped talking about it, didn’t bring her book back and began to not even visit. She had health problems which I’ve written about in other blogs.

I’d wanted to pay her back for my course in December, but didn’t have the money to do so, so we made a point of taking money for it out of our income tax refund. I’ve written her a check in the amount of the course so I can finally pay her back.

I had initially wanted to tell her how much she’d hurt my feelings by suggesting she’d been somehow forced into doing it, but have decided I’m just going to pay her back, as I’d promised and if she tries to refuse the money (which I know she will) I’m going to explain that I’d always intended to pay it back and now, knowing she’s only working part-time, for less hourly wages and lost her management position, she needs the money and I want to make good on my promise.

If I explain how she’d hurt my feelings she’ll just deny that she said that. I don’t want to argue with her. I just want to make good on my promise to reimburse her.

Would you let her know that she’d hurt you, or just leave it alone, pay her back and let that be the end of it?

Update on the blog Why Not?

I asked my friend if she truly didn’t understand why I wouldn’t want to give anything else to her son after everything we’ve gone through with him. She denied having asked me why I wouldn’t be willing to give him something. She said she understood why I’d feel that way and insisted she’d not asked me that. After I reiterated she most certainly had, she said she’d asked “why not” about something else we’d been talking about, when I pointed out that I’d only talked to her about wanting to give some things away then she admitted she’d probably asked that, but only because it’s automatic, not something she thinks about, just something she might blurt out. ??