eric-ovelgone
Forum Replies Created
-
So…my niece, when she was young was probably the most active energetic kid on the planet. To give you some idea …she is an acrobat and currently got accepted to a school to train for cirque du soleil. She literally was upside -down walking on her hands more than she sat. No human alive could keep up with her…and, much of the time, it was up to me and my father to look after her while her mom and dad worked. My father, her grandfather’s general idea of babysitting was to take her to McDonald’s playground so he could eat a burger while she ran around, or turn the tv on.
Kids mainly just want someone to watch what they do, praise them when they do something like a cartwheel and generally be proud of them. Just being there, paying attention and being present is usually all they need. Another tip…I had a stand in…a Stuffed Bunny…who did the physical games in my place. So Sunny Bunny would bounce on the trampoline in my place as i cheered a safe distance away and occasionally spoke on behalf of the poor stuffed bunny being trampled on as the future acrobat was landing on it’s head. Seriously …get a stunt bunny. Give them challenges, like avoid the lava floor or run around the outside of the house a few times until their tired and their energy is at a manageable level, then pull out the board games and computer games . On a nice day, go for a ride through the neighborhood as they walk beside your chair.
-
I hate to advise anything medical without telling someone to consult a doctor. I can only say what I personally do…and it may or may not be safe for you. I do take ginseng for energy. Does it work? I don’t know. A big help on sunny days is simply taking a ride outdoors.
-
As an artist, I frequently have difficulty opening marker caps. Am sure I can build a better solution, but typically I take a pair of sharp scissors, grip with the blades right at the end of the cap and use the scissors leverage to pop off the cap. The good news…this usually works. The bad news…the cap typically shoots across the room like a rocket. Try to aim someplace where can easily retrieve the cap and keep spare caps in case marker cap shoots behind a sofa. If this doesn’t work, a loop around a marker with a clip (like a sharpie) sometimes works. Loop string over cap under clip, find something sturdy like a door handle of door, and play tug of war with door. Lid usually pops off and again shoots across room.
-
I have felt like we, the disabled community, has been going backwards at least since 1999. To be fair, the disabled community made huge leaps and bounds through the 80s and 90s…but since then, I feel like the whole world has gone backwards. In the 90s, the mall was a great place where someone with a disability could go, feel free to roam, meet people, shop, eat, all in a wheelchair friendly environment. People would actually “hang-out”, talk and meet in person with others including people with disabilities. I remember hanging out with friends being introduced to friends of friends whom at first felt uncomfortable never being around someone with a disability and becoming friends by the end of the evening. Could do everything in one place. Yes, transportation was a problem but buses began adding accessible lines. Now…I feel trapped at home. People, no longer seeing and meeting people with disabilities in person have become downright hostile. All you have to do is read a message board on any news article about someone with a disability and it will really make one wonder what happened. Covid I think made people even more hostile as healthy individuals were suddenly being asked to mask to protect vulnerable communities like the disabled. Everyone is more isolated surrounded by like-minded people of similar abilities and beliefs. Slowly disability access is being repackaged as optional special access. Not sure of a solution .
-
The bathroom is by far the biggest obstacle I think I face due to my SMA and it consumes an inordinate amount of time, energy and resources just to ensure that I can go to the bathroom. Mornings, I have no choice…I require an attendant to transfer me to a rolling toilet-shower chair. For ages we struggled with an external catheter setup that went to a leg bag. For a while as a child it worked well enough to get me through school, but the bag would fill after one use, than had to be emptied by someone else. The leg bag often sprung leaks at humiliating times, was hot and could not wear shorts, and bulged the leg of pants such that could only wear certain pants with wide legs. As I started a job, this was just not workable. The solution…and I feel like an idiot for not coming up with it sooner…was a much larger bag in a water tight pouch discretely hidden under the seat of the chair. The seat cover totally conceals the bag and tube which runs through a small hole in pants or the leg of shorts. The one disadvantage is you cannot be easily transferred without disconnecting the catheter.
-
I feel like that almost every day of the week anymore. Day starts with me waking up with a terrifying thought …what if attendant can’t make it in this morning? What if they get sick, car accident , issues with family members ? What do I do? Attendant arrives…check schedules. Known days be out, who can fill in? How long will they need to recover from surgery ? Can I find help for that many days? Need hoyer lift…been bugging coordinator since December …now need new prescription . New wheelchair ready…can’t get through to Numotion to setup delivery date. Next week crazy but chair keeps randomly stalling. Do I need attendant here? Better call coordinator . Attendant yelling at me because forgot to get shampoo …is it time to order catheters ? Can’t run out…no one in state sells them if run out. Time to reorder spinrasa? Not yet…don’t want to order too early. Have not been to Hopkins in like a year…do i have to schedule that? MDA clinic only open Monday before am dressed…nearly impossible to get there and cancel if ten minutes late. Got regular doc appointment coming up…how going to get blood test. State nurse needs to schedule appointments …must be this week …nurse with agency has mandatory visit…must also be this week . Why haven’t i heard anything about the financial forms filled out for another year of attendant care? Crap…am over by fifty bucks in checking account for keeping attendant care due to deposit…need to tell dad to go to bank. OMG.. someone whom shall not be named is telling me I need to be more proactive about my self advocacy …can i gouge their eyes out? Sigh…no…i don’t have the strength .
-
Finding caregivers has become an absolute nightmare. It can take months to find anyone, and half the time the people who show up decide it is too much work…too far…pay too low and never return or tell you that they quit. I am lucky i finally found two good reliable attendants…but am constantly afraid one or the other will get sick or be out for some length of time. State agencies just make things harder with ridiculous requirements and regulations no attendant is willing to go through and they are deaf, dumb and blind to the problem. Your best hope is through friends and relatives if you have them…otherwise your on your own. I keep a sign outside my house year round for the agency that handles my caregivers as they advertise constantly for workers and cannot find anyone .It causes more stress in my life then all other aspects of my disability combined…it is a problem that keeps getting worse.
-
I avoid coats as much as possible . Typically in really cold weather I will wear a sweatshirt with a thermal undershirt and a sleeveless vest. I will also carry one of those chemical bag hand warmers…the kind you shake and they heat up. I tried sewing a usb heating pad into my seat cushion cover to work via a usb phone charger…but am not really sure if it works…not used any length of time out of an irrational fear of setting my butt on fire lol.
-
Things have gotten exponentially worse since the pandemic. I hate to stress You out more , but I just went through a two year nightmare to find an attendant. I am absolutely terrified of either of my attendants getting ill or calling out as one has been having health issues and the other has kids. I nearly had to file a lawsuit against the state when the state nurse wrote one up because she had to bring her kids once and nearly lost her help. The state is still acting like there has been no inflation and are barely paying minimum wage and they don’t cover travel cost nor the cost of all the ridiculous certifications they require. Any McDonald’s employee earns far more and they don’t have to provide care for someone nor do all the other things we require of our attendants. I must have gone through the entire embarrassing dressing bathroom routine with at least ten attendants who simply never showed the following day. When contacted, just about every single one said i lived too far away to cover gas. One brought an interpreter with him as he spoke no English at all. i ended up getting scalded in the shower because he didn’t understand ‘water too hot’. I don’t know what to tell you except things are incredibly bad.
-
First off…I really think everyone should completely ignore the concept of life expectancy for someone with SMA. I am already well beyond what age any doctor would have told me about life expectancy. In my opinion, if You can avoid too many serious flu, colds and Corona and look after normal health needs, You are just as likely to live to old age or get struck with a meteor as anyone else. The problem with aging and SMA isn’t that You may have too short a life…the problem is that the entire system for the disabled isn’t designed with the expectation that you may live a long and productive life.
My personal belief , and I can provide no scientific support for this , is that life expectancy for people with SMA is based largely on out dated inaccurate data. Years ago, people with SMA were institutionalized, they were often ignored by doctors for treatable issues, and quite frankly were uncared for by families and society in general …so naturally the mortality rate would be significantly higher . Add improved treatment for breathing issues, scoliosis…and just societies slight improvements in recognizing people with disabilities as actual people …and you can begin to see how data can be very skewed or at least not entirely reliable . You know your condition, take proper precautions, and I would be far more worried about the life expectancy of idiots of perfect health who try to inhale cinnamon for a social media dare.
Focus your concerns on reliable attendant care when can no longer turn to family , the fact that you can’t inherit or own anything if on disability and have to be on disability to get attendant care. Basically all social services assume people with severe disabilities won’t live into their 50s…so is a huge gulf between 50s and qualifying for senior services. Worry about politicians who want to cut medical coverage , disability , medicare, medicaid or any of the programs many need to survive.
Lastly …wear sunblock…suntans are great when young but you’ll be old sooner than you think.
-
Two of the biggest obstacles everyone I know in the SMA community deal with is always 1) attendant care and 2)transportation. I am fortunate my dad is still capable of driving, but I wonder for how much longer . Public transportation services won’t cross county lines, are incredibly unreliable and often give pick-up – drop off times plus or minus two hours from scheduled time. If you don’t sit there waiting for them, they will leave you stranded. When they actually show, it is a lucky day. You are likely just one of ten people on their route and inevitably you will be stuck waiting for ride to drop off and pick up ten people before get dropped off even if pass by place you want to go a dozen times. Is no funding for wheelchair vehicles to speak of, and the vehicle manufactures for wheelchair vans, they must all think wheelchair users got multi-million dollar settlement for accidents because vehicles start at sixty grand new and go up from there. Affordable low speed specialty vehicles the disabled can actually drive themselves remain a pipe dream only available in foreign countries with provisions for light weight vehicles .
-
So…nothing gets me angrier then the way the current system handles employment of people with disabilities. Ironically , my very first job out of college was working as an administrative assistant for Maryland’s departments of employment of people with disabilities. That terrible experience has long shaded my opinions and sadly my hopelessness that any positive changes will occur in my lifetime .
There is this weird dichotomy between programs to assist the disabled to work verses the basic needs one needs to live. Virtually every government program proudly proclaims they are designed to help disabled return to the workforce and become productive tax paying citizens . Problem is, first of all…every government , state, charity program begins their help that begins after enter door of employer. Need training? No problem! Fancy overpriced technological gizmo…sure…have two. Oh…you need reliable attendant care to get you up, washed, dressed and fed in a timely manner to get to work? Sorry…that is only available if you are unemployed and financially destitute . If you apply a few years ahead, pay a substantial portion of income to attendant care and go through a few thousand legal hoops …there might be a program to help a little. Reliable transportation? Wouldn’t you rather work from home? Don’t earn too much though , inherit anything or have more than two thousand dollars in assets you will loose all your assistance and probably medical insurance too. But if you work, this program will pay for an electric stapler.
It is idiotic to talk about employment of people with disabilities if employment means loosing access to all the programs that cover basic fundamental human needs. All the programs, committees , forums for employment of people with disabilities are purely for political show. I still recall how DORS, the premier job training site for people with disabilities would put on a great show for the politicians and media. They would show classrooms of students on computers doing cad, a meeting area with things for students to do between classes…even a little shop. Second politicians left, students were left fighting over ancient computers so old they were obsolete before i was born, most of building closed up and lights out. Students couldn’t even visit one another as it was deemed a fire hazard. Classes were geared to drug addicts…cheaper and easier to help and legally classified as disabled . That 19 percent is an over-count and includes people with minor back problems, carpel-tunnel and minor disabilities .
-
Of course…I try to get my crankiness out when i am not around other people by yelling out curse words to myself in the basement. I am generally in very good control of my temper otherwise….but it is a bit like a high pressure tank with no safety valve. It takes a whole lot to make me blow…but you want to be miles away in a fall out shelter when it occurs.
-
I use both Alexa and Alexa motion sensors with smart lights and smart outlets. I have been switching to this from x10 which i used for years. I love Alexa for automation. The great thing with Alexa is you can activate by voice and can use Alexa as a phone or intercom as well. There are tons of devices that use Alexa and they are reasonably cheap. Now for the bad part. Setting up devices can be easy or virtually impossible depending on who makes the device, how many devices you have and distance from router. While Alexa connects to the various devices, you generally need to install not only an Alexa app on your phone but generally a different app for every different brand of device you buy. If can afford it, stick to one brand…but you will miss out on sales for cheaper identicle devices. Smart bulbs tend to be much more difficult to setup then plugs, and if your wifi goes down, you loose the ability to turn on or off the light which was not an issue with x10. Motion sensors can be nice or annoying depending on location. Remember, every time pass the motion sensor it will activate. We have one in garage to announce a visitor which is great…unless someone is working in garage in which case it keeps announcing every two seconds that someone has entered the garage. You can delay how often it goes off, but can also mean it wont turn on when want it to. Lastly, i now have to remember what i named every light. I find myself yelling at Alexa to turn on the !@#$% light because i forgot what name i called it.
-
My attendant care situation since August
My apologies for its length and lack of paragraphes but it is assembled from a series of post about my own ongoing attendant nightmare.
I am contacting You as I have run out of other options and I am at a complete loss as to what to do concerning my attendant care situation. I have a form of muscular dystrophy called Spinal Muscular Atrophy type 2 and require a power wheelchair and attendant care morning and night to get up, washed, dressed, prepare food and transfer in and out of bed amongst other needs. I am currently in the Community Options Waiver program which was formerly called the Living at Home Options Waiver when I was first approved more then ten years ago. I have been allotted a total of six and a half hours of attendant care per day split between my morning attendant (3 1/2 hours) and a night time attendant (3 hours). My current coordinator is Yadira Garnier from Beatrice Loving Heart, and I believe she is the third supports planner I have had this year, my former supports person Rachael Miller is her manager of the same agency. I currently live alone with my 83 year old father who just had knee surgery in late August of this year.
I hesitate to write to you as I have never had serious issues in the past with regards to attendant care and I do believe that my coordinators are doing their best given my current complicated situation given the effects of the pandemic on finding workers. My long term attendant morning attendant of three years gave me a month’s notification of her intent to move on to another career at the beginning of September end of August. I notified my attendant care agency, Home Care of Baltimore, that I needed to find a suitable replacement. Since that time, I feel searching for an attendant has become my full time job. My agency found two people, one who never showed up who stated the available hours were too short to be worth his time, and another attendant who showed up only two days before quitting after getting short term extra emergency hours to entice her to work. That person didn’t show up on the third day because the pay was too low to drive to Carroll County where I live from the city and would only come out if I paid $90 for an Uber ride. Each time no one shows, my father who is unable to put me in the bathroom does his best to get me up and dressed at our mutual peril until my evening attendant can arrive to put me to the bathroom. I posted various ads and local help want ads myself and searched Facebook as well as began to contact other agencies in the hope of finding a replacement attendant. Thankfully, my former aid agreed to fill in until nearly the end of October, but she finally had to move on to her new career. Every agency, every potential attendant has said the same thing…either I don’t offer enough hours or the pay is too low. None of the dozens off agencies I have contacted on list of approved agencies who said they were looking have ever called me back. I don’t know if it is the effects of the pandemic or current number of jobs available, but no one wants to work as a caregiver at current state approved wages.
Since the end of October, I have had no choice but to re-hire an attendant I had to fire on four separate occasions. I want to be very careful here how I characterize this person as it is a very complex situation. He is currently the only caregiver I have been able to find to come out for me, and I do appreciate his help, especially as it was only suppose to be temporary. My morning attendant unfortunately is unreliable, does the very minimal, and has drug and or alcohol issues. This is why he was still available on such short notice. The morning attendant also does not drive having lost his license I believe to a DWI and is dropped off by my evening attendant on his way to another client. My father, who should not be driving much, then has to drive the morning attendant back home or to the subway in which it becomes questionable if he will show up the next day. I have expressed severe concerns for my safety with my coordinator as the morning attendant has a domestic violence case pending after violently kicking the evening attendant in his leg and has shown erratic behavior on mornings after I believe he has potentially been drinking or using drugs. I do want to say that this dangerous behavior seems to be drug or alcohol induced…while I consider him a friend and do not believe he would ever intentionally harm anyone…he has not remained clean for a consistently long period of time. I have given him many chances over the years which has resulted each time in eventually being fired since he was originally hire as an attendant many years ago. With his two court dates coming up, there is also the possibility that he will do jail time. Yet, this is the only attendant available to me. As so much time has passed, he has begun to rely that he will be able to continue to work for me and I am beginning to have concerns of what to do about someone whom has been the only one to my rescue around the holiday season while weighing my options for my safety, my father’s safety and what to do in the future if a new aid once again quits after only one day due to low pay. I want to be fair to my attendant but i have to consider my safety first.
I am now being told “… we (Beatrice Loving Heart) had to revise the POS due to the critical need for a new caregiver/agency this will delay the approval of the request for an increase in hours.” The only way I have any hope of getting another attendant is if I have more hours or more pay can offer. My current morning attendant Archie, aside from the bare minimum of getting me to the bathroom and dressed is pretty useless in any other respect… I am already kicking him out of the house as soon as he finishes as it is like baby sitting before his hours are up. He won’t help me get out clothing, complains when has to go in basement where I have my art supplies, and has on occasion expressed hallucinations about spiders crawling on him. I absolutely could use more hours…i am a skilled artist and I haven’t been able to paint in months as I have no help once am up and dressed. I feel however extra hours can also be a curse as it ties me and my father to our house unable to go out, visit friends, shop or dine. Between dealing with a potentially dangerous attendant, loosing a long term attendant, loosing my mother who passed away earlier this year, the pandemic and my own faltering health, I am feeling so completely overwhelmed such that I no longer even know what the best course of action is. I’ve expressed this to my coordinators, but I am not sure they comprehend the stress this situation has created before the holidays and I honestly don’t know what to do or if there is even anything that can be done. I wake up every morning terrified that either my attendant won’t show, will drop me because he was high on something, or that I will have to train someone entirely new to handle washing and dressing me only for them to quit the next day and I will have no one at all. I have woke up to this every day since October and spend my entire day searching for an attendant
Weird day. So the morning attendant has not returned since i caught him taking money. He did finally confess though…but apparently he is now facing some possible jail time over a completely unrelated thing. My coordinator still has not found anyone in any agency willing to cover my attendant hours. In some way it is all darkly reassuring as i know i have done everything i can do and none of this is my fault…. but at same time i feel guilty just for my state of existance like i am somehow responsible for not manifesting a better reality for myself even though none of this is within my control.
So tonight my night attendant is yelling at me because the morning attendant won’t do his job. He is yelling at me because he says “I need to be more firm with him” and “i should threaten to fire him” if he won’t do his job. I don’t know what he expects me to do. I cant even get him to pick up his own trash. He threatens to walk out on me when i am half dressed if i ‘give him too many orders’. Night attendant is expecting me to get him to vacuume…i can’t even get him to put my shirt on without him painfully pinching me. I have been looking for new attendant for months…is no one. That idiot quits and i will be screwed. But now am miserable both morning and night.
Well…my morning attendant has been fired after another chaotic morning yesterday. Now i basically have no morning attendant although night attendant is temporarily filling in splitting his day between me and his other client going back and forth.
Yesterday was aweful though. After coming over all wired up, the fired morning attendant threw me together and wanted my dad to drive him to subway early. He had lost his drivers license due to a DWI, so dad has been alternating between driving to take him home or to subway. I know whenever he wants to be dropped off at subway instead of home, he is going to city to get high which means he would behave even more erratic the following day. Twenty minutes after leaving, they were back. He runs in as forgot his phone, so made dad turn around to come back home. They leave again and thirty minutes later, attendant is calling on phone screaming at me because he left his backpack in my dad’s car after dad dropped him off at subway. I tell him i will try to call dad’s cellphone, but dad doesnt usually answer his phone while driving and if he comes home, i cant send him all the way back to subway to deliver his bag…would hold on to it and give it to him in morning. He starts cursing me and my dad. So i hang up…try to call dad whom i am not even sure he knows how to use cell phone and whom am worried will have accident trying to answe it while driving. No surprise he doesnt answer. In meantime that idiot attendant is now calling house number every two minutes. Am telling him that am trying to get a hold of dad. He curses at me and my dad, hangs up, calls again. Third time he does this, i am on phone with my coordinator begging for them to do something…find me anyone. So idiot calls a taxi, comes back to my house. Has no money to pay cab so has me call dad again. Dad is at dollar store, so he runs out to cab to take him to dollar store…then calls me again because he misunderstood what dollar store he is at. Finally he catches up to my dad who kindly offers to give him ride back home, but he insist to go back to subway…so takes taxi to subway. I have no idea where getting money from, but i know i had more money missing.
So, an hour goes by….my coordinator apparently told my agency to fire him. That is all fine and good except they have no one to hire in his place…just did this without consulting me. I figure my agency made arrangements with my night attendant. Night attendant shows up…no one consulted him nor his other client. My agency still had not called me to even tell me they fired morning attendant. So….i had to tell them to make arrangements for night attendant to come in morning and remind them to talk to the other client. I feel like am in some comic tragedy in which i am surrounded by brainless incompetent morons
Sunday, my agency said they found a new attendant for me and she would be coming at 9 o’clock for training Monday morning. Normally I prefer a prior attendant train a new attendant as some things are just impossible to verbalize without demonstrating. Unfortunately the only one to help training is my dad who hasnt had to dress me except on rare emergencies for 4 years. At 83 and just having knee surgery, he is unstable on his feet and in a just world would have his own caregiver. Anyway, dad had a very important meeting with a lawyer at 1 o’clock a half hour away concerning the incredibly complex and expensive will he has to setup as i am unable to inherit anything directly or i loose my non-existent attendant care. He has to setup a complicated Special Needs trust…so he was anxious to get out of house early. And of course with my luck…it snowed…lots. We actually got very little snow at house, but the roads to dad’s lawyer and the roads by attendant were covered enough that dad was going to have to leave earlier and attendant was running much later. By the time the attendant showed, was no time to train or even go to bathroom. Dad can only handle one lift at our mutual peril, so i had to get dressed in bed and put right in wheelchair. Good news is that the attendant who showed up was very nice although very difficult to communicate with…English was not her first language and spoke with very heavy Russian accent. Anyway, from what i can make out, she says she has other clients…cant start until nexr week. I assume my agency just had her scheduled for Monday as my night attendant’s other client had an appointment in morning, that he was scheduled for Tuesday. At 6 o’clock, night attendant comes. I say something about new attendant possibly starting next week and he ask who is coming for me tomorrow. I say, i assumed you are. He informs me his other client wont let him come later anymore…offers he can bring back the guy who robbed me whom i just fired for the 5th time. The night attendant said he cant fill in anymore. So, at 6:30 at night, am calling my agency asking the owner who was coming tomorrow. Keep in mind, is 6:30 at night….not eat dinner yet, not been able to go to bathroom. He said he call right back. He didnt call back…at 8 i call him. Tells me lady agreed to come Tuesday. Tuesday lady comes. Again is very nice, but with language barrier, dad has to show her how to do most everything. Again lady says she has other clients rest of week. Cant come out rest of week. So this time i call agency, leave bunch of messages that needs to make arrangements for Wednesday. Tell night attendant he may need to make arrangements with his other client in case no one else to cover. 6 o’clock…night attendant shows No one called him…has to be at other client by 9. Call owner of agency…ask what is going on. Says…i call you right back. Now i have this beautiful dinner i helped make sitting in front of me…not eaten all day…didnt eat much prior day as couldnt go to bathroom…and now i dont know if anyone coming for me Wednesday. My stomach instantly turns…i cant eat. Agency calls midway through my first bite of dinner…no one can make it ..what do i want to do? So much to my night attendants displeasure, i suggest he can come to get me up at 7 in morning. Can skip breakfast, skip brushing teeth, skip making my lunch, skip getting washed, skip doing my hair.. just get me in bathroom and dressed. If arrives at 7 in morning, can get me done by 8:30 if dont talk and just do bare minimum…might work. I dont finish my dinner knowing only minimal time in bathroom in morning. Go to bed early…but wake every hour on the hour. Good thing too as 7 o’clock..dad over slept…wake him to unlock doors. 7:15…no attendant yet…should i call? 7:25, he comes in…was running late. Calculating in head…do i have time to even have sip of coffee? Need coffee to go to bathroom. Am put in chair, drive full speed into kitchen. One sip of coffee…am dehydrated. Swallow allergy pill. Race to bathroom. Am totally off my schedule. Try best to go bathroom but will probably have stomach ache today. Luckily not eat much. Night attendant out to other client by 8:30. Only had 1 of my normal 3 1/2 hour morning time which everyone agrees is already whoefully insufficient. Tomorrow ..no idea if have to do the same. Last i heard…agency looking for yet another new attendant will have to train. I cant keep this up…this is killing me.
Sunday, my agency said they found a new attendant for me and she would be coming at 9 o’clock for training Monday morning. Normally I prefer a prior attendant train a new attendant as some things are just impossible to verbalize without demonstrating. Unfortunately the only one to help training is my dad who hasnt had to dress me except on rare emergencies for 4 years. At 83 and just having knee surgery, he is unstable on his feet and in a just world would have his own caregiver. Anyway, dad had a very important meeting with a lawyer at 1 o’clock more then a half hour away in Towson concerning the incredibly complex and expensive Will he has to setup as i am unable to inherit anything directly or i loose my non-existent attendant care. He has to setup a complicated Special Needs trust…so he was anxious to get out of house early. And of course with my luck…it snowed…lots.
We actually got very little snow at my house, but the roads to dad’s lawyer and the roads by attendant were covered enough that dad was going to have to leave earlier and attendant was running much later. By the time the attendant showed, was no time to train or even go to bathroom. Dad can only handle one lift at our mutual peril, so i had to get dressed in bed and put right in wheelchair. Good news is that the attendant who showed up was very nice although very difficult to communicate with…English was not her first language and spoke with very heavy Russian accent. Anyway, from what i can make out, she says she has other clients…cant start until perhaps next week…at least that is what i think she said. I just assumed my agency knew this and just had her scheduled for Monday as my night attendant’s other client had an appointment. At 6 o’clock my night attendant arrives and I say something about new attendant possibly starting next week and he ask who is coming for me tomorrow. I say, i assumed you are. He informs me his other client wont let him come later anymore…needs his help in mornings due to doctors appointments. He offers that he can bring back the guy who robbed me whom i just fired for the 5th time. The night attendant said he cant fill in anymore.
So, at 6:30 at night, am calling my agency asking the owner who was coming tomorrow. Keep in mind, is 6:30 at night….not eat dinner yet, not been able to go to bathroom. He said he call right back. He didnt call back…at 8 i call him. Tells me lady agreed to come Tuesday. Tuesday lady comes. Again is very nice, but with language barrier, dad has to show her how to do most everything. Again lady says she has other clients rest of week. Cant come out rest of week. So this time i call agency, leave bunch of messages that needs to make arrangements for Wednesday. Tell night attendant he may need to make arrangements with his other client in case no one else to cover. 6 o’clock…night attendant shows No one called him…has to be at other client by 9. Call owner of agency…ask what is going on. Says…i call you right back.
So have this lovely dinner sitting in front of me…not eaten all day…didnt eat much prior day as couldnt go to bathroom…and now i dont know if anyone coming for me Wednesday. My stomach instantly turns…i cant eat. Agency calls midway through my first bite of dinner…no one can make it ..what do i want to do?
So much to my night attendants displeasure, i suggest he can come to get me up at 7 in morning. Can skip breakfast, skip brushing teeth, skip making my lunch, skip getting washed, skip doing my hair.. just get me in bathroom and dressed. If arrives at 7 in morning, can get me done by 8:30 if dont talk and just do bare minimum…might work. I dont finish my dinner knowing only minimal time in bathroom in morning. Go to bed early…but wake every hour on the hour. Good thing too as 7 o’clock..dad over slept…wake him to unlock doors. 7:15…no attendant yet…should i call? 7:25, he comes in…was running late. Calculating in head…do i have time to even have sip of coffee? Need coffee to go to bathroom. Am put in chair, drive full speed into kitchen. One sip of coffee…am dehydrated. Swallow allergy pill. Race to bathroom. Am totally off my schedule. Try best to go bathroom but will probably have stomach ache today. Luckily not eat much. Night attendant out to other client by 8:30. Only had 1 of my normal 3 1/2 hour morning time which everyone agrees is already whoefully insufficient.
Entire day contacting everyone I can think of to find an attendant all day long. I can’t handle this much more and I don’t know of anyone else to contact.
Just found out…n new attendant coming tomorrow. Was advised that person doesnt speak English…use google translate…am not kidding.
-
Acrylic paint is my favorite. It is versatile, easy to use, and you can make incredible works with it. I do like copic markers, but opening the lids is annoying. I would like to work more with oils as they are the most challenging. Watercolors are great for traveling, easy to pack and clean up after. I use to love computer graphics , but AI has killed that for me.
-
It is only my opinion, and I certainly maybe misjudging things as it is more that it ‘feels’ like we are going backwards rather than being able to provide a quantitative evidence. I felt like in the past, when I encountered a situation in which accessibility was an issue, people were more willing to rally around and make things work and try to understand the situation. Now, I feel more like there is the attitude that any reasonable request for assistance is like asking for special services or as if one is being difficult. The internet may have something to do with this as people no longer filter their opinions and if they have any prejudices against the disabled, they feel more free to vocalize it. I sense this most strongly in articles dealing with the disabled. I guess in the past, if i had a problem, i had to confront someone in person whereas today, issues are largely dealt with online. If your at the door of an inaccessible restaurant for example, it is far more likely the owner will quickly figure out how to accommodate you than finding out online a restaurant is inaccessible and writing them.
-
So, the one caregiver I have had quite a long time, and he had to pickup caring for me 7 days a week, morning and night when i lost a caregiver who worked morning Monday through Friday. He was getting very worn out. Agency sent out a total of about six people over three months if not more. They all said I lived too far away to make it worth their time. One spoke no English at all…his interpreter left shortly after dropping him off…got scolded in shower because couldn’t understand the word ‘hot’. We posted fliers, even at churches not attend, talked to neighbors, posted online, Facebook, Craigslist, local groups …everywhere. Is still a sign in front of house on fairly busy road advertising my agency because we allowed them to advertise. Finally my dad was grocery shopping and bumped into a former caregivers mother and found out that she moved back locally and was looking for a part time job. After all that, the state nearly fired her on us because the day the state nurse was out she had no sitter for her kid. I nearly took the state to court and i think i pretty much threatened a hunger strike in front of DHS unless they backed off.
-
Sorry for taking so long to reply…i just noticed that i had messages waiting . I go through an agency …one of the few in my area. The good thing is they will pretty much hire anyone i send them , but they have not been great locating people on their own. i did manage to find a prior attendant who has been willing to come in thankfully , but had a whole other nightmare dealing with the state for reasons not want to get into .
-
As someone who once held a good paying job and formerly started to make a nice nest egg…if you are still getting care from aging family members and have not looked into the rules and regulations for receiving attendant care…please do so…now. Odds are, unless you are a millionaire, you will be unable to pay from savings for attendant care. Figure about 90,000 a year for attendant care give or take a couple thousand. No one will work for less then three hours at a time, most demand five. So, figuring 6 hours a day, 3 morning to get up and dressed, 3 at night times 365 days a year…even paying minimum wage would be more than most people can afford…more than many i know save in a lifetime. Add agency cost because you are not going to want to constantly find, hire and make sure all hours are covered if someone calls out or gets sick, extra pay for holidays, more if need extra help for doctors visits…$90,000 is the low end of your yearly cost. So…you will need government assistance. Depending on where you live, if you are lucky enough for their to be any programs at all…most likely you will be required to have less than $2,000 in total assets (they even ask if have gold teeth) and most likely have to prove are too disabled to work to qualify . Yes, there are better programs that may let you work if can find reliable attendant care willing to arrive before noon…but don’t rely on that.