Goodbye

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In August of 2017 we learned that my beloved Siberian Husky, Kodiak, was diagnosed with cancer. We sought a second opinion with a surgeon, drove him to an animal hospital 2 hours away. The surgeon concluded that he could operate, remove the mass, but that it would be more for us, than for Kodi. He warned that the surgery would likely not extend his life at all, but could possibly end it and would mean the pain of surgery and recovery during what could be his last months. They estimated his life expectancy to be 2 months to 1  year.

We decided against any chemotherapy, since that could mean nausea, sickness, pain, etc. The surgeon said, “This dog has no idea at this point that anything is wrong, let him be happy and enjoy his time.”

Since then, Kodi has had good days and bad. He’d continued to want to walk, to play in the yard, to be with me while I shoveled snow, etc. His eating habits were sporadic, sometimes eating more than one meal a day (a very unusual occurrence for Kodi), but other times he went as long as 5 days without eating. His bowel movements were sporadic as well, but this was expected, as the mass was in his left anal gland, and the larger it got, the more difficulty he would have moving his bowels.

Sometime in January, I noticed he was becoming reluctant to go for longer walks, or wanting to sit down on our walks for a few moments. I reduced the distance we were walking and stayed closer to home. He still wanted to go, seemed to enjoy checking out the neighborhood and once it snowed, he wanted out in the snow a lot, wanted to play ball in the backyard.

On February 9, when we came home from grocery shopping, he was waiting in the kitchen, as always, ‘woo wooing’ at me when I came in. He ran to the door as he always did, for me to take him out to potty, then we would usually walk around the block for a quick explore and to exercise his legs a little. He fell on the tile floor, but quickly stood and went to the door. He limped on his left hind leg for a couple steps, but seemed to be back to normal quickly.

Saturday and Sunday we played in the yard and walked. My husband walked him in the morning on both Saturday and Sunday, letting me sleep in a little. We all walked together in the evenings and played in the yard. He seemed to stand up more slowly, but shook it off quickly.

Sunday night he jumped up on the bed and curled up to sleep, as always. At 4:00 Monday morning when hubby wanted to take him out, which was routine, he didn’t want to get down off the bed. After some coaxing, he jumped down, but was wobbly and moving slow. He went out, went potty, then came back in. He wouldn’t get back up on the bed. He laid down on the floor. A couple hours later, I heard him getting a drink and realized he was leaning against the dresser with his left hind foot off the floor.

When I went to him, he leaned against my right leg, while I rubbed his left hind leg, which I’d taken to do when he was feeling stiff. At first he growled at me, but seemed to enjoy it, once it got warm. He laid back down. I got a beach towel out to use as a sling so I could assist him to go outside. He didn’t want to go.

After calling my husband and asking him to come home, calling the Vet and talking to them, we knew that he wasn’t able to stand on his own, seemed to be in a lot of pain. It was then that we knew the time had come to say goodbye.

My husband carried him to the car and I sat in the backseat with him. He gripped my leg and arm with his front paws, pulling me against him. When I had to get out of the car at the Vet’s he gripped me harder, not wanting me to get out.

The Vet said his muscles were wasting because of the cancer and he was probably masking the pain, not wanting me to know how much pain he was in. He’d lost a little more than 10 lbs. since September.

When it was time, I held him in my arms. He kissed me three or four times, as he lay down on the floor with me. I cried, told him how much I love him, thanked him for everything he did for me, how he’d saved me, supported me, and apologized for not being able to have more time with him.

He died, peacefully, in my arms.

I am devastated, hollow, completely empty, lost. He was my constant companion for 10 years. The only time we were separated was when I had to run errands, when I spent a night in the hospital. I didn’t do a thing without him.

When my power chair broke down 2 years ago, I didn’t start walking for myself, it was very painful and I’d been warned in the past not to do any percussive activity. I walked for Kodi, because he needed to have the exercise, didn’t deserve to have to be limited to just the backyard. He had become my personal trainer. Sitting between my feet, when I needed to sit down on our walks, but not allowing me to sit for long, wanting me to get up and keep moving. Because of Kodi, with his help, I’ve lost 191 lbs. He watched over me when I was out in the yard, hanging up laundry, when I tried to help with yard work, or just sitting in the fresh air enjoying the sunshine and breeze. He laid between my feet when in the house, followed me to the bathroom, stayed on the bed with me when I napped and slept. I shared my meals with him.

He’d seemed to instinctively know how I needed help with things, and without much training at all, he learned to pick things up for me, retrieve things, help me take my clothes off. He never let me out of his line of sight and came without being called if I needed help.

Though we have 2 cats (one who is 17, the other 15), the house is incredibly empty and lonely. I’ve forced myself to continue walking, but my walks are aimless, and at times I get home, but don’t remember where I went or how I got there. It’s hard to even look up, to face anyone, as people in the neighborhood have started to see me alone and ask where Kodi is.

Still breaking down a couple of times a day, still not sure how I’m going to do this alone… I suspect this will be the norm for some time to come. I had become completely dependent on him being with me. He was my confidante, companion, best friend.

Goodbye, my darling Kodi. I love you, always. I miss you.

Rest in Peace, my sweet boy.

December 16, 2007 – February 12, 2018

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Manipulation to the nth degree.

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In my last blog, the first of this new year, titled No New Year’s Resolutions, I laid out the long and complicated series of events that my family has been dealing with, leading up to and after hiring a long time friend to work as my son’s primary aide.

I had written the blog hoping to be able to purge some of the feelings I was struggling with as a result of the poor way this individual had handled a change of schedule,  wanting to vent my thoughts and feelings, so that I could put it behind me and move forward, so that I could help my son put it behind him and move forward.

This past weekend, it felt as if we might just have been finally getting over all the nonsense and drama. Then, one month to the day of my last electronic communication with this individual, I received an email from her that included her Doctor’s release to return to work attached to an email to me.

This email took on a very professional tone and started off saying that she hoped my family had a nice holiday season. In the letter, it mentioned that she’d appreciated the offer of the alternate position as back-up and would be interested in it, if her schedule at her other job allowed. She reminded me that I’d offered a letter of recommendation and that she’d still not received it.

To say I was stunned, would be an understatement. She had emphatically turned down the position repeatedly, including in writing. She’d forwarded the letter to the agency we work with, as well. They let me know that they believed this individual and I had worked everything out and we were keeping her on, based on this letter, obviously exactly the effect she’d intended.

I let the agency know nothing could be farther from the truth. She’d not spoken to me since Dec. 21 when we’d met and I spoke to her about my son not wanting to change staff people again. In fact, she and/or her daughter had set about telling people I’d fired her. I was told she’d taken the whole situation personally, though she’d said she respected my son’s decision. I was told she was very angry at me, which was evident by the meltdown she’d had in my home and later, in private messages, where she’d repeatedly said I’d devastated and gutted her.

I let the agency know that we had no intention of using her as a back up since she’d made it more than a little clear she didn’t want the position, and then had told people I’d fired her. I also told them my son was afraid of her, after her meltdown directed at him previously at the bus station and then the way she reacted here when I tried to talk to her. I also let the agency know that I would not be interested in writing a letter of recommendation for her, in light of her thinly veiled suggestion that I’d caused her to contemplate suicide. I could not, in good conscience, put another family in a position of having to deal with that sort of nonsense.

She’d painstakingly written a professional sounding letter, misrepresenting what she’d previously said and done, misrepresenting the way our relationship had been left, misrepresenting the lack of communication there had been for a month, misrepresenting how she’d characterized the outcome of our discussion of Dec. 21.

She’d done this previously, when notifying the agency she would be needing a medical leave. She’d misrepresented the hiring of the back-up aide, by indicating the only aide I could find was available only in the Summer time, telling them she’d moved all her doctor appointments up so that SHE could accommodate me, by having her surgery sooner, even though she’d told me when completing her new hire paperwork that she’d had an appointment for what would effectively be pre-surgery testing in March, offered to have the surgery in June, which is why I’d started looking for a back-up aide. I specifically looked for someone that could work for us from June forward, based on the timeline she’d provided for testing, surgery and rehab.

I have been blindsided by how manipulative and dishonest she’s been. I never knew her to be like this. The deceitfulness of her letter, revising history as she attempted to do, so as to make herself appear the victim who was graciously willing to continue working with my son, though her hours and pay grade had been reduced… AFTER that horribly irrational rant she’d delivered in my living room, and continued online, AFTER she and/or her daughter told everyone around her she’d been fired.

Looking back, she’s been manipulating this situation right from the start of our talks regarding the possibility of her taking this job. She’d made a lot of demands and put off key parts of the hiring process trying to dictate the time table we had to work with. She’d put off starting the volunteer application and orientation; put off getting training – wanting someone else to give up their holiday time to train her when it suited her; made demands regarding hours she had to work for it to be worth her while – not acknowledging that hours available were the maximum allowed, not required. She’s maligned my son, accusing him of purposefully trying/wanting to hurt her by making her late for work, blaming him for her inability to manage her time. Ultimately, she tried to manipulate the agency with this dishonest letter.

No more! I’m tired. I’m going to be 54 years old in a little more than a month. I can’t tolerate, nor do I have time or patience for people who wish to elevate themselves by manipulating, abusing, gaslighting others.

I want to be done with this. My son is happy with his current aide, she’s happy with him. He wanted her to stay on, she wanted to stay on, the other individual was continually stressed and complaining about different aspects of the position and actually thought my son would purposely do things to annoy her… so his decision was clearly the right one for everyone, whether she sees it at this point or not.

My family has to come first. I’m not responsible for anyone else’s life. I thought of her, hence offering her some hours to help offset her other employment, but apparently, she’d expected me to prioritize her and her needs over my son. Not going to happen.

 

No New Year’s Resolutions

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Not making any New Year’s Resolutions, they usually only last a couple of months and then slowly become harder and harder to stick with.

Rather than making a New Year’s resolution, I’m going to take a painful lesson and try to apply it to all aspects of my life.

My family has experienced a lot of stress in 2017. We’ve had a lot of unexpected financial hits that have caused a lot of stress and anxiety. We struggled with trying to secure a reliable aide for our son’s program. There were a number of health concerns for all of us, including a couple of our pets.

I did something this year that I’ve done before, but this time it stung so badly, I don’t think I’ll make the same mistake again. I hired a friend to work as my son’s support service worker (aide). I thought I’d emphasized strongly enough that we had to have a separate managing employer relationship and separate friendship. I thought we agreed.

There were a lot of ‘red flags’ that I ignored. I’d encouraged this individual, from our initial talks about her taking the positions, to get the ball rolling with the local health service that my son volunteers with (as they have a lengthy application/interview/screening process that’s taken as long as 3 months to get through in the past), but she waited almost two months to do so. She made some demands about what she had to have in order to take the position, demands such as having to work the full five hours each scheduled day and having to work the three days a week, otherwise she couldn’t pay her bills and it wouldn’t be worth it for her taking the job. I explained to her that the fifteen hours a week was a maximum, while my son is almost never sick, almost never misses any time, he had decided in the past to come home early when tired or stressed out. She’d reiterated over and over that in the past year she’d missed one day of work, that we could depend on her.

Immediately there were problems… she couldn’t complete the ‘new hire’ paperwork in one sitting, had to divide it into two different meetings. During the second meeting she informed me that she had a previously scheduled doctor appointment in March where the condition of her right shoulder would be evaluated and the possibility of a surgery was very real. I’d explained to her what my son had gone through with medical leave for his primary and back up aides in the past and that we didn’t want to go through that again. I told her hearing those words were going to cause an aneurysm. She told me she wasn’t causing something like that and tried to reassure me that they hadn’t decided on surgery yet, tests had to be done, but her doctor would only decide on surgery if it was the only option and since this shoulder was not as bad as the other, which she’d had surgery on the year before, she thought they might not have to go that route. I told her I’d hang on to that because my son couldn’t go through another leave of absence.

Because she’d put off starting the process with the health service, as I’d suggested, she hadn’t gotten her ID badge as the dates we’d provided for our back-up aide to train her quickly approached. She’d started complaining to me that they’d better get things moving, if she couldn’t start on our predetermined date, she’d be in a financial pinch because she’d already changed her schedule with the job she had, retaining a client for afternoons, but giving up the day time schedule she’d had.

When she’d received her ID badge, she had scheduled other hours at the other job she had and wasn’t able to accommodate the days and hours we had available to provide her with training. She put it off as our back-up aide’s last scheduled day of work approached before Christmas break. That was to be our back-up’s last day, because our new aide would begin work the second week of January. As the last day came, she still hadn’t made herself available for training. She asked me if our back-up aide would be willing to come back on her first day of work to train her (as we’d talked months before that this might be a possibility in a different circumstance). She asked if that wasn’t possible, could the back-up take a day out of her Christmas break with her kids and go to the volunteer location to train her. Of course, our back-up aide was mortified that she’d ask her to do either, since she’d been more than willing to train her for several weeks before her last day, but our new aide couldn’t make time to do so.

Right from the beginning there were some more red flags. She encountered issues at the volunteer site with another volunteer, there were some issues with getting/having enough work without having to wait for someone to get it for them.

When she’d started I’d explained to her that one aide didn’t seem to have been working on goals for my son, as I’d thought she was and I provided an example of a way they could work on a goal while riding the bus to their location. It wasn’t long before she started suggesting that “Mom could encourage him to work on goals, Mom could remind him we have to work on goals while we’re out.” The next issue we’d encountered was that he had started wanting to take breaks, sit and chat. Again she was reminding him they had to work on goals and couldn’t just sit and take a break. She then communicated with me that he didn’t seem to want to stay out for the full five hours each of the three days.

I went to my son’s Support Coordinator and explained that he was asking for breaks, which told me he was feeling stressed and needed to ‘tune out’ for a bit. She told me that wasn’t a problem, because recognizing he needed that, being self-aware and verbalizing that was part of independence.

The new aide was encountering ongoing issues at the volunteer location, asking me to call the volunteer coordinator at the hospital, to intervene on her behalf, to come in and meet with the folks in the department where my son volunteered. I suggested that she was working with these folks, that she is tasked with advocating for my son when she’s with him. I made some calls and got him moved into a different area, to eliminate some of the stress.

Numerous days they’d had difficulty catching the appropriate bus so my son could get home within the allotted time and she could get her daily paperwork completed. On one occasion, the day after a terrible storm hit the city and downed a lot of trees on many city streets, they had a horrible experience at the bus terminal. They’d taken the second of two possible buses from the volunteer location and because of detours, they missed the bus they needed. She wanted my son to take a different route, one that was not as familiar to him. He refused. I’d previously told him if he ever missed a bus to stay in place, wait for the next bus because it would be back in thirty minutes. She said he asked her repeatedly if she was upset, asked her to admit it. When they got home, he went right to his room, she was livid and late to her second job. Later, she messaged me and accused my son of doing that on purpose, just to hurt her.

That seriously damaged their relationship. On one occasion she’s revealed that he’d gone into a public restroom while they were out and he’d never done that before. When I questioned him as to whether he wasn’t feeling well, he said no, he was fine, but he just needed to get away from her, she was repeating herself and he couldn’t handle it.

When she’d seen her doctor I’d asked her if she was going to need surgery, she said yes, they always knew she would. I reminded her of what she’d said about possibly not needing it, and she denied ever having told me that. She said he was hopeful it wouldn’t be a long recovery, as it wasn’t as bad as the previous shoulder. She explained that once the tests were done she had a limited amount of time to have the surgery, or she’d have to have the tests done again. We’d talked about waiting until Sept. to do the surgery, because we thought my son’s back-up aide would be available again, but while talking about the time table I learned that our back-up aide was no longer available, so she suggested she could do it over the Summer. She needed eight weeks to give notice to her other employer before taking a leave of absence, so we decided that sometime in the month of June she would likely have the surgery.  I reached out on Facebook to locate someone we could hire as a back-up. I didn’t have much time, but I found someone. She then told the agency we work with that I’d only been able to find someone for back-up that could work over the Summer so she’d changed all her plans to accommodate that. This was completely untrue.

She’d told me her shoulder wasn’t as bad as the first, she might only be out for three weeks or so, maybe a month, then maybe three months or four. She needed another surgery before the shoulder surgery, so that pushed everything back by a month. When I suggested she wouldn’t be able to come back until the new year, she jumped on that telling me it had better not be that long, she couldn’t make it financially if that were the case.

She wanted to know the procedure to take medical leave. I got the information and a packet was sent to her. I explained to her that we didn’t just tell them she was taking a medical leave, they had to approve it. She told me, very coldly, in front of my son, that if they didn’t approve the leave she’d just go back to her other job and request more clients, ones that didn’t require lifting. Effectively, she’d just abandon us without concern for whether or not my son had an aide.

She’d started complaining that the work at the volunteer location was exceptionally heavy, that she’d need my son to lift the boxes of supplies, so she didn’t damage her shoulder more. She complained when he didn’t do it, disregarding the fact that he has a connective tissue issue and delays in muscle development.

When completing paperwork for her doctor and the medical leave, she asked me to write a letter outlining her responsibilities as an SSW. I did so, outlining the goals my son works on and how the SSW position assists him. She didn’t like that letter, saying she needed the lifting requirements outlined. I told her I couldn’t do that, I have no knowledge of that information. She said she wanted me to state that she had to lift boxes that weighed approximately 50 lbs. and that when the rolling cart was full it weighed 350 lbs. I had no way to legitimately attest to that. I gave her both versions of the letter, without weight and with. I cautioned her that if her doctor decided after her surgery that she would have a weight restriction, by specifying weights, she might very well be documenting herself right out of a job. She was incensed. “He would never do that.”

The back-up aide I hired was only available for the Summer months, while school was out, so I had to find another person to fill in for the remainder of her leave. She suggested a friend of her daughter’s. I interviewed her, she had experience, my son talked with her and said he was sold on her. When we told her we’d hire her, she jumped right to work on getting accepted into the volunteer program, she got her appointment scheduled and completed for being hired by the agency we work with, she had online training to do and completed that immediately. She really showed us that she wanted the job, no excuses, no postponements. She went with my son and his aide for a full week, on her own time, to observe what was required for the job. I found out much later that the aide had warned this back-up not to get comfortable with the job.

Things went incredibly smoothly with the back-up aides. All the issues with lack of work at the volunteer location, heavy work at the volunteer location, problems missing buses, my son wanting breaks or not wanting to utilize the hours available to him, not being able to get back home in the allotted time, all went away. The back-ups both scoffed at the alleged weight of the work he was doing while volunteering, saying nothing weighed more than 20 – 25 lbs. Both reported that he wasn’t asking for breaks, that he didn’t give them any trouble regarding utilizing his hours. Neither one ever returned him home late. Both back-ups expressed a desire to continue working with him, that they enjoyed him, the work itself and their time with him.

The aide on medical leave informed me, via chat, that the shoulder was much worse than first thought. I heard from the second back-up, before the aide, that she wouldn’t be returning until mid January.

About a week ago, my son started asking me if things were going to be the same, or would they change, when his aide came back, because he didn’t want all that stress again. He asked me if it was possible for his current back-up aide to stay as his primary aide. He said he couldn’t deal with all that stress again. I tried to explain to him that we really should let the aide come back, give her a chance to make some changes and adjust. He reminded me that I had suggested to her more than once before her leave that she needed to ease up, lighten up, that she was going to damage her relationship with him, if she made it seem too much like ‘work’ he wouldn’t want to do it. She’d continued on as she’d been doing.

I asked his back-up if we brought the primary aide back, and it didn’t work out, would she still be available for this job. She said she didn’t care what else she was doing, she’d make herself available, she didn’t want to leave.

A couple of days later, he came to me and said he didn’t want to change again. He’d worked with 5 different people in something like 13 months. He said they were ‘clicking’ and he didn’t want to change, could we do that. I contacted the agency and asked them what my responsibility was to the aide on medical leave. They told me it was not at all uncommon for a part-time, or back-up SSW to be hired and the individual hit it off with them and decided they wanted to keep them on as their primary aide, it happened all the time. They instructed me that, “As Managing Employer it is okay to decide to switch schedules and staff as to what you feel is in the best interest of your son and providing his services that are the most beneficial for him while meeting his needs.” She went on to say, ” I am thrilled that his services are being provided by some one that he feels so comfortable with.  This means that we indeed are truly meeting his needs, which makes everything we are trying to do a success!”

I spoke to his back-up and let her know how he felt. She was overjoyed. I then met with his aide and explained that I had some unpleasant things to discuss, that I’d been agonizing over the situation. I explained that he was resistant to changing aides again and wanted to stay with the current SSW. He had suggested I should keep her on as a back-up and provide her with companion hours, so she’d continue working with him, but we could schedule at times when she didn’t need to be at her other job, eliminating the stress they’d struggled with. I explained we’d keep her on as a back-up and she refused the position, saying ‘so I don’t have a job.’

I continued to try to explain to her why he wanted the change, that I was sorry, but I honestly thought she could go back to the other job, as she’d planned to do, and get more clients. She said she wished I’d told her two months ago. I explained again that he’d only just come to me with the question and expressed his desire to not change again. I’d shared the information with her, within a week of learning this was how he felt.

I was stunned by her response. Yes, I knew she was going to be hurt, but having worked in this field for so long, having been on my side of the equation as an employer for her mother’s services, I really thought she’d be able to understand. She told me she was devastated, that I gutted her. Her husband had recently had heart surgery and was also on a medical leave of absence. She began listing how I’d devastated her, she only had $60 a week to spend on groceries, only had about $400 in the bank, couldn’t pay her mortgage for Jan.,Feb., or March, didn’t have a Christmas tree, didn’t have Christmas gifts, etc. She said she was going to be homeless.

I reached out to her via messenger later that evening and woke the next morning to the following sentence: “I’ve never before today weighed the value of my life vs the value of my life insurance policy.” I was physically sick to my stomach. She’d just suggested that I’d caused her to consider suicide as an option.

She also said that she’d appreciate the professional courtesy of a good reference. How on earth could I have done that for her, after all of that?

She and her adult daughter, (whom had been present during our discussion because she brought her along when visiting me, so she could run interference, cut visits short, interjecting to remind her mother they always had to be someplace else, so they couldn’t stay) began immediately telling people that I’d fired her. I had, in fact, offered her another position, not fired her, she had effectively quit, having turned down the position.

The lesson learned here is two-fold… NEVER hire friends to work for us again and STOP chasing after people who treat me like an option, but expect me to treat them as a priority. I’m done.

I think we finally have a great fit for primary SSW and for back-up, as well. No stress, no issues, no complaints, no demands and my son is happy about being with them, with no hesitation, no reservations.

Specifying that there had to be a differentiation between our ‘friendship’ and my role as my son’s managing employer was initially agreed upon, but apparently not taken seriously. She specifically said that she respected my son’s decision, as it is consumer directed services, his back-up reported that she’d been told she wasn’t mad at her, not blaming her, so it was completely my fault, my responsibility, I’m the target for all the anger and blame, it was reiterated that I WAS her closest, oldest friend…. apparently she’d expected me to prioritize her friendship over my son’s needs. No more of that nonsense!

This new year is going to be as stress free as humanly possible, no more chasing after friends, no more accepting of excuses, no more toxic relationships that cause anxiety for my family. Standing up for myself and my family, unapologetic, let the chips fall where they may. I think I have finally learned my lesson, now to apply it to my every day life, going forward.

Time for some updates…

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I’ve been so busy, had so much going on, that I’ve not kept up with my blog, something I wanted to try to do this year.

There have been some big changes…

In May I had two cataract surgeries. At first I was stunned by the results following each surgery. The surgeon said I got a $5000 correction from the basic implants and would only need reading glasses. It didn’t take long for me to discover that the miraculous correction I first had, was actually just the stark contrast between how bad my eyes had been and the new lenses. As time went by the correction was less and less sharp. I also realized that only my distance vision was corrected in any way, but I’d lost my near and intermediate vision. I was once able to take my glasses off and read, crochet, etc., but now am completely unable to see anything with any clarity near or mid range. I had to go back to the eye doctor and have new lenses made, and was bumped up from bifocals to trifocals, which they didn’t proportion properly. I’m still experiencing the same symptoms I was before the cataract surgery, blurred distance vision, ghosting of images, blurred near vision, difficulty seeing outdoors in bright light, difficulty reading things online.

My son’s aide went on medical leave to have surgery and our new back-up aide started. The transition seemed to go well. We didn’t have any problems, no drama, there were no issues at his volunteer location. It became apparent, as her medical leave become complicated by the need for a second surgery, pushing back recovery/progress. We had to hire another back-up aide, when the new one had to go back to her regular job. That transition seemed to go well. He’s doing well with her, as the return date for his regular aide is unknown at this time.

I was asked to take pictures for a friend of her wedding. I enjoyed the experience, with the exception of the access issues I encountered at the church. I loved the creativity doing the edits allowed me. Since then, she’s asked me to take her daughter’s graduation pictures outdoors this Autumn and asked me to photograph another daughter’s newborn baby pictures, both of which she offered to pay for. I’m flattered that she loved my photography so much and trusts me to immortalize these special moments for her.

My husband celebrated his 50th birthday this August. I and his best man, best friend, planned a party, a cookout for him. I invited his friends and co-workers, some cousins and family members. We had a pretty good turn out. It was fun. He got a lot of gag gifts, was a good sport. His mother even gave him 50 birthday whacks!

This month I had another doctor appointment after four months, as my doctor was on medical leave. I’d started to try to help mow the lawn, thinking that leaning on the mower for support isn’t much different than leaning on my rollator. I was sitting in my manual chair pulling weeds, gardening, etc. Kodi and I were walking the dike 3-5 mornings a week. We were walking 3 times a day when the weather allowed, when it wasn’t raining or too hot and humid. We walked the longer walk in the morning, just around the block at noon time, then a couple of blocks in the neighborhood in the evening. I was forcing myself to stand, walk, do more and more without my wheelchair. I was hurting myself, over extending myself, requiring several days to recover after each exertion.

My neighbors were all telling me I had to have lost another 40 lbs. My clothes that I’d bought new in April were loose fitting. I was so excited to get weighed, as I only had 25-26 lbs to lose, to reach the goal I’d set for myself, wanting to break the 300 lb. mark at this appointment, my 2 year anniversary of working on my weight. When I got on the scale I closed my eyes. The nurse said, “almost.” I looked at the number, I’d lost 21 lbs., weighing 304.4 lbs. I was devastated. I went inside myself, withdrew, didn’t say much of anything, answering the questions the nurse asked as she took vital signs. When the doctor came in the room she immediately started to go on about not giving up, if I had something to say to her I should, etc. That pushed me over an emotional edge and I broke down and cried. I felt I’d been working so hard, paying a painful price for that hard work, and just wanted to see a pay off that was commensurate with the amount of hard work I’d been putting in. She said I wasn’t seeing the big picture, 21 lbs was great, I’ve been on a steady weight loss without a plateau. I’d lost 168 lbs in total, in 2 years. She then told me I’d gotten “greedy” wanting too big a weight loss each time, that setting a weight loss goal for myself, even small short-term ones, was wrong. When I reminded her that she’d told me a weight loss of 6 lbs. a month was a good, safe, long lasting weight loss, she denied saying that, asked if she’d put it in writing, then recanted and admitted she’d probably said that. I explained to her that looking at the physical results, as she was suggesting, rather than the number on the scale, was not working for me, as I am having trouble seeing the weight loss. I see it in my face and neck, but so much of my belly and hip weight loss has caused the skin and flab to melt down onto my hips, distorting their shape and size even more than before I’d started losing the weight. She decided I have body dysmorphic disorder and insisted I see their counselor before my next appointment which she scheduled for only 2 months, rather than 3. She threatened to not let me see the scale number unless I tell her it didn’t matter and I could see the weight loss. After telling me the numbers don’t matter, she reminded me that I only need to lose 32 lbs. more and I’ve lost 200 lbs.

She called another doctor into her office to show him my BMI numbers, as she printed out a graph showing I’ve lost 22 points on my BMI and that I’m halfway to not being classified as obese any longer. He acknowledged how hard it is to lose so much weight without weight loss surgery. She suggested I start researching what’s required to have the loose skin removed. I told her I already had, and what I found said you want to lose all your weight, reach your goal, then maintain it for a couple of months before having the skin removed. She kept telling me I was her biggest success story, that no one else could say they had a patient lose so much weight on their own.

This week we found out my beloved Kodi has cancer. We don’t know what kind or where, but that he does have cancer. He’s been drinking a lot and needing to urinate a lot. We thought it might be diabetes, but it turns out his calcium blood level is out of whack, which is causing his phosphorous level to be off, which apparently is a sign of some sort of cancer, typically lymphoma. We had blood work done to specifically look for the markers that indicate cancer is present and they were found. We’re now waiting to see what other symptoms show themselves, that might point to what type of cancer or where it might be located. Our Vet indicated that it could be a small tumor, might be relatively minor, which would make it very hard to find and fully diagnose. He’s going to be 10 years old in December, so they are cautious about putting him under anesthesia to do scans or additional tests, since older dogs can have trouble coming out of anesthesia. We have decided that his stress and anxiety levels are so high, we’d rather not put him through chemo, radiation, hospitalization, so we’re giving him lots of love (as usual) and taking one day at a time. We could have a year, or even more, depending on how aggressive the cancer is. One friend communicated to us that her dog was diagnosed with lymphoma 5-7 years ago and is still with them. I’m really devastated by the thought of losing my darling Kodi, but I’m trying to be able to appreciate all the time I’m able to have with him and feel certain he will let me know when we need to make the tough decisions.

It’s been a trying, busy Summer. Trying to remain positive and hopeful is difficult right now, but I’m doing the best I can.

 

 

Expecting Accommodation

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One of my biggest pet peeves is when someone makes plans with me and at the last minute changes them.

This first became an issue for me when I was growing up. My friends never were able to appreciate how difficult it was for me to make plans with them, the bargaining and trade offs that had to happen in order to get permission.

Today, this is still an issue, but for different reasons. While I don’t have to ask permission any longer, there are trade offs that have to happen. Being disabled, living with chronic pain, deciding to make a date with someone, to go shopping, go out to eat, etc., includes assessing my pain level, how much walking will potentially be involved, how long I might have to sit, etc. It also includes taking my son’s needs into consideration, whether the activity will trigger his social anxiety if he’s included or how long he can handle being home alone if he doesn’t want to go along.

Most people, friends and family alike, don’t understand that going out for any reason takes some preparation on my part and may not be something I can do, especially on the spur of the moment. As a rule I try not to make promises, as far as making plans, because I’m never sure I can follow through and I know how much I really dislike it when people back out on me.

Recently, one of my husband’s cousins, I’ll refer to her as “D,” told us she’d be coming from out of state to visit family near us, and wanted to go out for brunch with us, Sunday morning, July 16. We were excited to see her though I knew I’d have to be careful what I did Saturday (today), so I could go and enjoy myself. A week ago I asked her if we were still on for this Sunday and she assured me we were.

Earlier this week we got a message from her saying she wasn’t going to be able to do brunch on Sunday, as she was not leaving for home Sunday afternoon, but Sunday morning, as there was a birthday party one of her kids was going to Sunday. She wanted to know if we could go to breakfast early Saturday morning. We explained that my husband didn’t know if he had to work overtime on Saturday yet or not.

We explained that it was okay if we didn’t get to see her this trip. It sounded like her weekend was pretty well planned out, chaotic, things happen, we could plan to see her another time when she came to visit. She simply would not accept this.

She asked if we could get together Friday night. We told her no, we run our errands on Friday evening after he works overtime. She wanted to know again if we could do a meeting at our house Saturday morning around 7. I explained if my husband was home, he usually sleeps in until about 7 and walks our dog before the temperature and humidity get too bad. She said that’s okay, he doesn’t have to be there, we’ll have girl talk.

To be honest, that really rubbed me the wrong way. He had wanted to see her too and she’s his relative, after all. I would not feel right about seeing her without him here. I suggested instead of trying to make plans not knowing whether he’s working or not that we’d wait until Friday and let her know, as he would know by end of work whether he had to do overtime on Saturday. She agreed.

Friday he texted her to let her know he didn’t have to work, also that he had an appointment to have new tires put on our car at 10:15 on Saturday. He asked her if 8:00 would work for her, that way he could visit before leaving for the appointment. She asked if she could come at 9:00. He agreed, reminding her he’d have to leave at 10.

Friday night we got groceries, came home and put everything away, put out recycling, garbage, ran vacuum, mopped floors, wiped down bathrooms, before going to bed.

This morning I slept in until 8:30, as I wasn’t feeling well when I went to bed Friday. My husband, son and I did some last minute straightening up and waited. 9:00 came and went. It was almost 9:30 when my husband remembered my phone’s text notification sound had gone off about an hour earlier. I checked it to find that his Aunt texted to tell me she is coming to his birthday party in August and his cousin didn’t get in until 1:30 in the morning, was still in bed and probably not coming to see us.

All day today we heard nothing from her. We waited a while before going out to mow the yard, as a result weren’t able to have dinner until after 7:00.

For several days she would not take no for an answer. We gave her an ‘out’ knowing we’ll have other opportunities to visit, but she wouldn’t accept that. She changed her plans, then expected us to rearrange our lives to accommodate her. She tried to shift the blame for not getting to visit on us, for not being willing or able to accommodate her change of plans. Then, even after we did accommodate her, she cancelled and didn’t even bother to contact us herself to let us know or apologize.

To me, this translates to our time not being valuable, our needs not being important. Suggesting my husband didn’t need to be here was disrespectful and hurtful.

This was a very stressful day, especially since I woke up with a headache and in a lot of pain, as we’ve had high temps, high humidity and lots of rain lately. My joints are swollen and my whole body achy.

After today, my opinion of this cousin has changed dramatically. I’m feeling a lot of resentment toward her right now. My husband won’t speak up about this, for fear of rocking the boat, not sure why, since his father’s  family wants nothing to do with him, in fact, this cousin came in today to attend their family reunion at the Aunt’s house that texted me. We were not invited to attend.

Beware of the “Turner”

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I learn something new every day. Sometimes the lessons are positive, other times they  wound, they foster distrust and skepticism that relationships in my future will likely be impacted by.

Interacting with others is always a trying experience for anyone who has had an abusive history. People who’ve experienced abuse seem to take different approaches to personal relationships, depending on the abuse they’ve known. Some folks become assertive to the point of being domineering, almost abusive themselves, they don’t want to ever feel vulnerable again, don’t want to be seen as weak, while others are so afraid of triggering the same responses they got in a past abusive relationship that they become cripplingly timid, not ever wanting to speak up, risk angering anyone. There are all sorts of variations in between these two seemingly extreme reactions.

I’ve been at both ends of that spectrum at different times in my life. After years of therapy I discovered my voice, who I am and how to temper my own reactions to others through empathy.

I recently had a friend, whom I felt incredibly comfortable with. We had a lot in common, were able to support one another regarding chronic illness, pain, disability, etc. I fully trusted her, opened up about a lot of things, it appeared as if this was mutual. Even though we were friends through Facebook and had never met, would never meet, we were very close, were there for one another when we were down, experiencing loss, feeling depressed or overwhelmed, shared our happiness and joys.

I really thought we were as close as someone could be, with miles physically separating them. I thought she knew me, knew how I felt and thought about things, above all, knew my past and knew that I would never do something to purposely hurt someone.

A couple days ago I posted something on Facebook, I prefaced it with why I thought it was important. This friend seriously misinterpreted it, completely misread it and in a very hostile comment asked what I was insinuating by posting it. She made accusations based on what she thought I did or did not know about the topic, she ended her comment by saying she was offended by the insinuation. She’d gone from asking what I was insinuating – though had she properly read the meme and my comment on it she’d have realized there was no insinuation, but for the one she’d created, – to telling me the insinuation was offensive. She threatened that if the insinuation was as she believed it was, it would end the friendship.

Though I had no obligation to do so, I explained in more detail what the meme represented and addressed, as I saw it. That her interpretation had nothing to do with my intent in posting. A couple of my friends commented, trying to explain to her, as well, that they did not interpret it in an offensive way, that if she knew me she should know I would not do what she’d accused me of doing. She immediately attacked them. Their back and forth with her went on after I’d turned off my tablet and gone to bed.

Other than explaining my intent, I did not want to engage further, until I’d taken some time to digest her comment. Initially, I found it terribly hurtful, hostile, grossly unfair and it stunned me, that someone I’d shared so much with would think something so horrible of me. I didn’t go back to the post until the following day, when I saw the comments of my friends, defending me and her vicious attacks on them. She even sent me a private message that contained a horrible attack on someone I think of as a niece, I’ve known for many years longer than she.

I tried making excuses for her, she’d misinterpreted it, misunderstood, that she’s had a lot going on lately and I was chalking it up to that, but she persisted. While telling my friends I’d explained it and it was done, but they had to stir it up, she continued to tell me she just couldn’t believe I’d post something so horrible, indicating she’d not accepted the explanation at all.

I suggested that if she left it and looked after a family member she’d posted was having problems, looked after herself, and came back to it another time, she’d realize it wasn’t at all what she thought it was. I told her that if she thought so little of me as to do what she’d accused me of, then we clearly didn’t know one another as well as I’d thought we did and perhaps it would be best if we ended the friendship.

She began posting passive aggressive memes on her Facebook page, kept coming back and claiming victim-hood, saying she was hurt I’d so easily throw her away, that I’d “cut her soul deeply,” accused me of using intimidation tactics, purposely causing her suffering.  She went to a post from 2 years ago, where I’d thanked her for a Christmas gift she’d sent me and posted that I’d played her for a fool.

I had no choice but to stop her abuse. I had to unfriend her and eventually blocked her. The hypocrisy of her playing the victim was too much for me to cope with, too much like my former abuser, triggered my PTSD. There was absolutely NO concern or consideration on her part for how her words, her attacks, accusations and assumptions regarding myself or my friends had affected me, but when I stood up for myself, even making excuses for her, trying to be patient and understanding, she was the deeply wounded party.

The definition of a “Turner” that I’ve read is as follows: A turner is very similar to a narcissist. But the red flags are difficult for trusting people to decipher until it’s too late. Turners engage people pleasers and keep them in a perpetual state of people pleasing. If you finally disagree or question them they turn hostile and many times bolt.

An experience like this leaves one with a couple of difficult questions. 1) Can I ever trust anyone? and 2) Is it ever a good idea for someone with health issues to confide in and share with another individual with health issues?, as they are both compromised and dealing with many symptoms and stresses of their diagnoses.

 

Always Questioning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Follow Up to Two Steps blog

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

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

We are so relieved.

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

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

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

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

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

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

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

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

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

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

I guess there’s always tomorrow to hope for.

Two Steps Forward, Three Steps Back

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Can Things Get More Complicated?

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Apparently, the answer is yes.

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

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

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

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

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

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

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

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

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

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