I Think I’ve Found My Limit

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I’ve allowed myself to be manipulated over and over again, feeling for what other people are going through, wanting to help, falling for every sob story and self-created dramatic narrative offered.

Most recently, a young friend began posting around Halloween last year about how her family was excluding her, no one was helping her plan her wedding, no one would let her and her son trick or treat with them, she needed to go to the store for some things for her son and was going to have to walk in the rain because no one in her family would help her out, though she constantly referenced how she’d helped all of them out many times. She complained to me that her mother always treated her differently, that one of her sisters would see anything she did as trying to show her up or get attention.

I went out of my way to listen, to offer her positives to consider, to share my own experiences that seemed relevant. My husband went out in a storm and drove her, her husband and son to the store.

She recently told me numerous times that they were being evicted. My husband helped her fiance get a job where he works.

She owes me money from two photo sessions I did for her, one of her family in Autumn and one she used as a pregnancy announcement. Seeing as how they needed money for Christmas, and have been given 2 eviction notices, I hadn’t pushed for the money she owed me.

This week she posted on facebook that she had bought her son a musical stuffed animal, posted that she still needs $1000 for things for her wedding. Apparently buying stuffed animals is a priority over paying her bills, what she owes others.

I’d thought she was different, more responsible, as her mother had done the same thing to me a year before, when she asked me to take graduation pictures for her daughter. She made me wait nearly 6 months to be paid and when I pressed her for the money tried to make me feel guilty for having asked for it, then withheld contact for a period of time.

All I’ve seen from this person is complaints about how her family treats her, for months. Suddenly she has begun posting how loving her family is, how much she appreciates them, how great it is to have them as sisters, everything they do for her son… I feel like I got whiplash from the BS turn around.

I’m done. I’m done being sympathetic, done offering a listening ear, done offering support to people who are creating their own drama, who are only looking for sympathy and attention. I’m done experiencing the emotional roller coaster of flashbacks and triggers I endure due to their dramatic nonsense.

No more! I’ve reached my limit. I’ve had enough.

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“A List of Abusive Incidents”

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I came across a written piece by titled 9 Things People Don’t Realize You’re Doing Because You’ve Been Abused By A Nacissist. It really spoke to me. Two sentences that were especially relevant to me were… “To counter abuse amnesia, it’s important to have a list of abusive incidents or at the very least, behaviors you experienced with this person. This will help you to reconnect to the reality of the abuse and keep you grounded in what you experienced.”

Since my husband’s interaction with his mother on Christmas morning I’ve found myself thinking about our relationship with his mother and sister, hoping he won’t regret ending his relationship with his mother, wondering how he’s going to handle losing his mother when that time comes (as she’s 80 years old), and whether he’s going to regret not having a relationship with his sister. I find myself, in true doormat fashion, questioning whether there was more we could have done to make things right, wondering if we overreacted to things, etc.

After finding the above linked piece, at a time when I’m second guessing how we’ve handled things, maybe I need to remind myself of what we’ve gone through with these people?

My husband’s mother has offered odds on how long our marriage would last, lied to my husband by telling him she saw me in public while I was at work. His mother has excluded us from holidays, when we lived within 25-30 miles of her, while driving to another state to spend holidays with his sister. Since we adopted our son, she spent only 2 birthdays with him, only one Christmas (which we had to negotiate to get). We gave school pictures to her every year at Christmas time, but never saw any of them displayed in her home. In recent years we noticed close to a dozen pictures of her granddaughters in her apartment but only one picture of our son and that was only there because he was part of a family portrait we gave her. After numerous problems between his sister and us he’s tried to talk to his mother about these situations, but she’s told him she’s not interested in hearing about any of it, doesn’t want to be in the middle. She’s reprimanded him numerous times instructing him to reconcile with his sister because she doesn’t want to die knowing her kids aren’t talking to each other. She orchestrated an ambush (for lack of a better term) of my husband and I at her apartment by his sister and brother-in-law. She’s isolated my husband under false pretenses numerous times to try to guilt him into reconciling with his sister. Recently, she accused him of hurting his sister, when he told her he wasn’t interested in reconciling because he’s been hurt too many times.

His sister’s abuses started our first Thanksgiving as newlyweds, when she called us and wanted us to give her our turkey because she’d not planned on making dinner, but her husband’s family had decided to come for dinner, she didn’t have anything. She was outraged that we wouldn’t give it to her, seeing as how it would be just us and we had many future Thanksgivings to celebrate. She’s accused me, for decades, of controlling my husband’s thoughts and actions. She lied to us about her oldest daughter being sent to NY to live with her father, then didn’t let us know she was coming home for Thanksgiving. She chose not to intervene and educate her oldest daughter as to how to appropriately handle her disappointment that I couldn’t be as available to her as I once was and encouraged her to write me a letter to tell me what she thought of me, rather than talking to me, or trying to help her daughter understand the situation. She destroyed my relationship with her daughter. She later promised my son she’d spend more time with him, at his request, but when pressed about when she might want to do something she denied having agreed to spend time with him. When I started getting closer to her youngest daughter and she was visiting us without her mother, she discouraged us from getting close to her husband, telling us he exaggerated and was a liar. She told us her daughter was threatening to withhold her granddaughter from her if she didn’t get her way. She denied everything, telling her daughter I was just making stuff up about her, destroying that relationship. Now she’s playing the victim again with her mother, getting her to intervene on her behalf, trying to get to her brother (my husband). She’s assisted his mother in destroying that relationship, as well.

His sister has lied to us repeatedly, as every time she’s told us something and someone else in the family heard what had been said, she claimed that I made it up, she never said it. She has always been good at veiled insults and accusations.

After writing this, I think it did help to remind myself of some of the ugliness that brought us to the point of cutting her off, limiting exposure to my mother-in-law.  People often say to forget hurts of the past, put them behind you, out of mind… but I do think it’s important to remember, so you can protect yourself and don’t allow the same wounds to be inflicted over and over again. Remembering without dwelling on them seems like the best way to protect ourselves.

Feeling Like I’m Disappearing

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I wonder if anyone else ever feels this way?

Lately, I feel as if I’m losing myself, as if I’ve lost myself. I don’t feel like a person anymore, but the services I perform for my family. I’m a cook, housekeeper, a dishwasher, etc.

My husband works in a factory, I’m disabled so I’m at home. Even though I’m disabled, it’s become my responsibility to take care of everything at home. I cook, wash dishes, do laundry, all the housework, most of the yard work, take care of the pets, balance the checkbook and take care of finances. I literally serve my husband his dinner in his recliner nightly. On top of all of that I manage my son’s social services and now my husband wants me to get a part time job to help bring money into the house. I don’t feel like a person anymore, I feel like my only value, my only identity is what I can do for other people.

Living at home with my narcissistic mother, growing up, I was conditioned to believe that one’s value was determined by what they did for other people, what they could give. I was conditioned, groomed, to be a caregiver. My life has been about serving, taking care of others.

I felt then like nothing was ever going to be enough, there was nothing I could ever do that would satisfy the needs of the people around me. I’m starting to feel that way again. No matter how much I do, there’s always something more expected of me.

I’ve been experiencing a lot of depression, anxiety lately. Feeling inadequate and frankly, tired of trying so hard to take care of everything and everyone without falling to pieces, without declaring defeat.

My husband has recently begun making what he refers to as jokes, at my expense. He points out every mistake, everything forgotten, anything misspoken, etc. When I tell him these “jokes” are hurtful and more or less validate the negative feelings I’m having about myself, my value, he doesn’t change his behavior.

Today I started our lunch, went for a walk, came back and shoveled our sidewalk, came in and worked on four loads of laundry. He sat in his recliner the whole time. There’s no concern for all the exertion I’m putting forth, for the fact I just had injections in both knees because of the pain I’ve been experiencing. It’s as if this is just what I’m meant to do, as there seems to be no conscience, sitting with his feet up, being waited on, being warm, while I’m outside shoveling, while I’m up and down, back and forth, taking care of everything.

I’m just the things I can accomplish… not a person living with pain; not a person suffering with depression and anxiety; not a person with bone diseases, nerve damage, PTSD, bulging disks, etc.; not a person who needs a break or needs help taking care of everything. I’m not allowed to be a person with feelings.

I’m feeling that I really need to speak up for myself, create some boundaries, or I’m going to completely lose myself. I can’t keep making everyone but myself a priority.

When You Get the ‘Scrunched Up Face’

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I saw my doctor last Monday, it had been three months since my last visit, the visit when I hit my 200 lbs. lost mark.

I’d been feeling like I was gaining weight back, but had no idea I was going to step on the scale and see that I’d gained 19 lbs. back. As if that wasn’t disappointing and depressing enough, my doctor looked at me as if I’d grown a third eye right in front of her.

I’d wanted to ask her about possibly taking a part time job. I explained how I’ve been feeling, the oppressive depression, bad anxiety, severe pain in my knees and hips, that I’ve been tired lately, so tired that I’m napping nearly every afternoon.

When I told her my husband wanted me to look into getting a part time job, that I just didn’t know how I was going to do that, she said, as she typed into her computer, “I think that would be good for you.” I told her I was really scared about doing so, because the last time I took a job I ended up leaving that job with 5 or 6 new diagnoses.

Her head snapped around and she looked at me with a scrunched up face, all distorted. “What?” she asked me. I explained again, going into a little more detail. Again with the scrunched up face.

When I first met her, she had showed me my file, a folder thick with about 2-3 inches of papers in it. She’d admitted she’d not had time to read it all, so was not completely familiar with my history. It occurred to me, sitting there with her, watching her preparing injections for my knees, that she really was not familiar with what I’ve gone through.

I explained to her that if I were to apply for a part time job I should probably have a letter from her explaining that I need reasonable accommodations, that I have limitations, such as not being able to stand or sit for long periods of time, that I can’t lift more than 10 or 15 lbs, that I can’t use a computer screen for extended periods of time because of my eyes.

She said just call her, when I get an interview, she’ll put something together for me.

Even as good a doctor as she’s been for me, I still feel she’s ‘humoring’ me, that when I explain what I’ve been diagnosed with, she’s not taking me seriously. She kept asking me if I needed help with the depression, in the form of a new prescription, someone to talk to. I told her I’d continue as I had been, using the medication she’d already given me, as needed.

I’m actually terrified about trying to take a part time job, after what happened the last time. Too much about my health/pain level is so random and unpredictable. Having a responsibility to be somewhere, working, when I’m miserable is pressure and stress I really don’t need.

 

Smear Campaign

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I came across this, The Smear Campaign – Narcissistic and Emotional Abuse, link posted on Facebook earlier today.

It occurred to me today, as I read the article linked to above, that I have been the target of a well orchestrated smear campaign initiated by my sister-in-law. All of the ill feelings and misconceptions of my nieces and mother-in-law can be traced back to revisionist history and fabrications of my sister-in-law.

She’s concocted a lot of stories, painting herself as a victim, a pathetic figure who has been hurt by her exes and her own children; neglected by her mother; mistreated by her friends, coworkers etc., with the purpose of seeking sympathy. We allowed ourselves to believe what she was telling us, even when we had suspected what she was telling us was either not true or exaggerations.

When some of the people in her life caught on to what was happening, she had to protect her own ego, had to protect herself and told them it was me who was saying the things she’d been saying, it was me making all that stuff up, trying to hurt her, to turn people against her. For reasons I will never understand, because these people knew me, we were close at one time, they believed her.

If one thinks about it, smear campaigns are only successful if people hearing rumors and negative talk about others don’t bother to try to get all the information, don’t bother to learn both sides of the story before accepting what they’re being told and then following through by reacting to the smears.

The situation with my husband and his mother on Christmas is a direct result of his mother being unwilling to listen to his side of the situation with his sister. She’s told him she doesn’t want to hear it, doesn’t want to be in the middle of it, yet she listens to what his sister tells her, then speaks for his sister by trying to reach out to him to guilt him into reconciling with her again, effectively letting her hurt and abuse him and his family, then allowing her to do it over and over again.

Perhaps the lesson, the take away from this article and topic is that we shouldn’t allow others to manipulate our emotions, feelings. We should never take someone’s word about who another person is, what they’ve done or said. We never can fully know what the motivations of the person who is negatively talking about others is.

 

Turning the Page to A New Chapter, A New Year

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I couldn’t bring myself to come back to this blog after losing Kodiak.  Nearly a year has passed without him. Some days I still fall apart, multiple times a day, sometimes nights are sleepless, as I imagine I can hear him, see him in the shadows, feel him on the bed.

Walking on my own has been difficult, as I still encounter people who are seeing me without him, asking if I’m getting another dog. We even tried to bring two different dogs into the house for an introduction with our cats, to see if they would work, but it was too soon, not only for me, but for the cats, they were intimidated by the full grown strange dogs.

I told my husband I didn’t think I could ever have another dog, Kodiak was so unique, so very special and so perfect for me, had taken my heart when he left me, but he didn’t think that was fair to him.

I got more and more used to walking alone, neighbors routinely stopped me to see how I was doing, to hug me and remind me that he is walking with me, always.

Our friends, who had 7 huskies, intended to breed two of their dogs and offered to give us second pick of the litter, asking only that we pay for puppy vet visits. During the year, our friend’s dogs really provided me with a lot of therapy. Her big male, the potential daddy of our future puppy, really saved me, allowing me lots of cuddles, love and kisses.

Over the Summer, as I adjusted to doing so many things alone for the first time in 10 years, we waited for the female to have her second heat. It happened in October and she and the male successfully bred. The puppies are due in about 4-7 days.

In October, I also reached a personal goal of losing 200 lbs, the journey I’d started with Kodi had reached a milestone, slowly, but finally.

I have mixed emotions about the new puppy. Part of me very much wants another dog, but part of me is sort of mourning the freedom we’ve had over the Summer and Fall, being able to come and go without worrying about someone being here for potty trips. I also worry that once again I’ll be tasked with the lion’s share of training and I worry that my patience is not what it once was. In the last year, the cats have become very affectionate, wanting a lot of lap time and attention, as Kodi had been very possessive of me and jealous of any contact with them.

Definitely starting a new chapter, a new adventure this year. I’m trying to focus on welcoming the challenges before us, regarding the new puppy.

There has been another change, one that also brings about mixed feelings. We’ve been helping my husband’s mother for a couple years now. This past year we helped her with groceries, bought tires for her car, took her on a Riverboat for brunch for her 80th birthday. She’s confronted my husband more than once last year about his sister, wanting him to reconcile with her. He’s tried explaining to her that it’s not happening again. Christmas morning, after having sent her a portrait of us in her Christmas card, he called her to wish her a Merry Christmas, it quickly escalated as she told him his sister wanted a picture of us too. He told her no. She insisted he should mend things with her, because it was Christmas. He tried repeatedly to explain how he felt, but she persisted until he told her Merry Christmas, goodbye and hung up on her. He declared that he’s done. Done trying, done dealing with the fallout caused by his sister’s continuous dishonesty and efforts to drive a wedge between their mother, her daughters and me.

Turning a page to a new chapter, starting a new year, bringing a new puppy home and removing toxic people from our life together is a lot of change, but we feel we’re up for the challenges before us.

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

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.