Caregiver Crisis Continues

[alyssa-silva]

Dealing with the same issues. I’m fortunate to live with my parents who are still able to handle my care, but the nursing and caregiving services we had helped tremendously. Plus, having my parents handle my care brings on a new set of stressors. They’re getting older, and taking on the responsibility of my care without any reprieve is obviously very taxing on them. We work together, and they’re amazing. But watching them go through this is difficult and sometimes makes me feel guilty. I’m grateful, but it’s hard.

[eric-ovelgone]

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.