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 comping 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.

Intimidation and Harassment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Loss

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wearing Multiple Hats

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

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

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

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

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

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

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

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

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

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

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

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