Mrs Tiggywinkle Posted October 4, 2021 Share Posted October 4, 2021 (edited) My elderly grandmother has late stage Parkinson’s. She is no longer able to walk or to transfer herself to the toilet. Almost all 24/7 care has fallen on my mom; who is not young herself. But of all the family(and my grandmother had thirteen grandkids), only one cousin and I are geographically close. I am working more than full time and my cousin is a single mom working 60 hour weeks in healthcare. My aunt is also older, widowed, and still has to work full time. She can stay two or three overnights a week; but the rest is on my mom who is burnt out and is getting to the point where she cannot lift my grandmother. We have tried taking her to the ER for increased weakness hoping they’d admit her and help us with inpatient rehab and then SNF, but there was no medical reason to admit(she’s 88 and has absolutely no medical issues other than Parkinson’s. No diabetes, high blood pressure, nothing) and there were no beds anyway. Office of the Aging came in and did the evaluation and qualified her for SNF level of care, but the waiting lists are 6-8 months long. Every home care agency we contacted offered a spot on the waiting list but said they are having huge staffing issues and can’t staff. There is some money to pay privately, though I don’t know if that will be allowed as they are qualifying her for community Medicaid. But the situation is honestly getting untenable for my mom. My mom and aunt do not want to abandon her at the ER, which may be the only way. But until then, we’re trying to private hire caregivers through care.com or Facebook marketplace. What questions should we be asking? Any pitfalls to be aware of such as homeowners insurance and liability? Edited October 4, 2021 by Mrs Tiggywinkle Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted October 4, 2021 Share Posted October 4, 2021 I have no idea. All I can say is that with my mother in law, we have a young girl, 17-18, from the local Mennonite community who is a lovely companion and caregiver who comes three days a week for part of the day, and we pay her cash which is what she prefers anyway. I think on paper my mother in law's weekly withdrawal of cash is would be assumed to be grocery/gas/co pay for meds. It isn't enough to trigger a problem, and we do have her on a waiting list for the memory care wing of county medical, by have no idea if she will agree to go when a bed pops up or bad enough to be forced to go. If she was bad enough and no bed was available, we would put her house on the market, and use the proceeds for a private home while waiting for a bed at the county facility. Thankfully, the county memory wing is wonderful. Mostly we live on pins and needles. But in terms of personal care, my mother in law is still of as intensive as you grandma. I am very sorry, Tiggy! All I can suggest is that while it seems cruel, sometimes the only way to make the wheels turn is to be the very squeaky axle, and abandon the elder at an ER so social services then kicks in and gets the necessary everything coded such that 30-90 days of rehab is approved while a permanent bed is found in a care facility. We had to do that with my uncle who had MS. My grandparents were in ill health, and his sins were all still working full time. They couldn't just drop out of life to care for him 24/7. The system sucks!! 💓 Quote Link to comment Share on other sites More sharing options...
City Mouse Posted October 4, 2021 Share Posted October 4, 2021 Care.com has lots of resources on its site that will answer some of your questions- stuff about background checks and payments for sure. They even have a way you can pay the caregiver through the website, and the site takes care of taxes for you. If I remember correctly, you can place an ad without paying, but you must pay for a membership to have access to contact any applicants, and there are additional fees for the payroll support side. I think you can even pay extra to have additional background checks done. 1 Quote Link to comment Share on other sites More sharing options...
whitestavern Posted October 4, 2021 Share Posted October 4, 2021 Do you have any nursing schools nearby? If you do not need 24 hour care, you may be able to find a nursing student who would like some part time work. It is hard finding good people. My MIL has 24/7 care. It's been several years, and only now do we have someone we really like, a capable, sweet and caring woman. She works 3 weeks on/one week off, so we still have to hire and train someone new for a week every month. SIl uses an agency for placement. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 4, 2021 Share Posted October 4, 2021 Does it have to be inhome or can a nursing home placement be arranged? Quote Link to comment Share on other sites More sharing options...
TechWife Posted October 4, 2021 Share Posted October 4, 2021 Abandoning an elderly person at an ED is a crime. Full stop. Advocacy is going to be key here. Someone needs to be in contact with the various facilities and someone needs to go ahead and tour the facilities. If your grandmother is admitted to the hospital at any time, she will likely move up on the wait list - getting admitted to LTC post hospitalization is much easier than getting admitted from home. Also, make sure that her primary care provider is aware of the situation. There are no easy answers and our system stinks. I am so sorry. This is such a hard time of life. Is your grandmother or, if she married, her husband a veteran of the US military by any chance? If so, she may qualify for a VA program called "Aid and Attendance" that pays for medical needs and can be used for home health aids if the veteran served during a period of war. The dates of service are rather wide in scope and it is not necessary for the veteran to have served in combat. I will warn you that the site is worded very weirdly - this is a type of pension and the veteran or surviving spouse doesn't have to be receiving a pension from a military service. Start at this website: https://www.va.gov/pension/eligibility/ About the aid and attendance benefit specifically: https://www.va.gov/pension/aid-attendance-housebound/ 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 4, 2021 Share Posted October 4, 2021 I'm lost here....she's qualified for skilled nursing facility level care, but which lists have that long of a wait? Skilled nursing coming to her home, or nursing home placement? Honestly, and I'm not trying to be unloving here, I would have her on all of the lists for nursing care facilities. We have had several adventures in which family members have completely worn themselves out, damaged their backs, and otherwise put themselves out of commission with trying to care for people at home who really needed SNF level of care. FWIW, when we hired people to care for loved ones at home, we required them to carry their own bond and insurance. There were just too many other potential liability issues. This is especially true when you are hiring someone who is going to be helping with toilet transfers or other things that can really cause back damage or might result in both individuals falling if something went horribly wrong, or if there was an act of aggression. Whenever elder care is involved, we just assume the crazy is going to happen....because eventually something usually does. Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 4, 2021 Share Posted October 4, 2021 It's very hard to find reliable in home care out here. I hope it's easier there. My high school classmates who have been through this say that the assistance is unreliable, things get stolen, care is not delivered as promised or documented, etc. At a minimum, get cameras/monitors into the house if you're going to go that way. Try to get a specific referral of a person who is loving, capable, and trustworthy, and if that is not possible, get a referral to a specific agency. Be aware that if an issue is the patient's word against the caregiver's, if the patient is in memory care it's very hard to know if the caregiver is being candid/truthful, and some of them are not. Out here Visiting Angels, which is a chain, has a pretty good reputation. Quote Link to comment Share on other sites More sharing options...
Mrs Tiggywinkle Posted October 4, 2021 Author Share Posted October 4, 2021 (edited) She is on the nursing home lists for every nursing home in our county and two surrounding counties, except the county facility which is a truly awful place(you’d shudder at the horror stories of what I’ve seen there). There is simply no beds available, mostly due to staff issues. The better nursing home has been closed to accepting new patients since July. Another one just closed to new patients this week. My ambulance company is routinely taking patients in need of rehab facilities four to five hours away. She is also on the waiting lists for agencies offering in home care. She gets in home OT and PT once a week, and was supposed to have bathing assistance but that is infrequent due to staffing. Both the Office of the aging and my family’s elder attorney have said the only way to speed up placement in a nursing home is to take her to the ER and refuse to take her home(and then she’s likely to go 4-5 hours away from home). She doesn’t have dementia, doesn’t even really take any meds, but can no longer walk or do anything for herself. She will eventually go into an SNF, but the waitlists, especially for Medicaid beds, are very long. I just posted on Care.com. Hopefully we can find something. The liability is a real concern and why we were really hoping to find an agency, and she is on the waitlists, but they don’t seem hopeful they’ll have enough staffing anytime soon to take on new clients. No military association. Her primary care doctor and the office’s social worker is involved. Their suggestions are repeatedly to either leave her at the ER or to “find family to come take care of her.” We’ve tried to explain that there is no family that is available and still lives close. Even the Office of the Aging, which should know something, just keeps repeating the family refrain. They’re getting her qualified for Medicaid as NYS has a program that allows you to hire friends and family members as caregivers, but it literally pays $14 an hour. Neither my cousin or I could financially quit our jobs to make $14 an hour. I don’t really think that it’s falling on deaf ears with the social worker and caseworker, just that there’s no staffing anywhere and they don’t have any suggestions. Edited October 5, 2021 by Mrs Tiggywinkle 6 Quote Link to comment Share on other sites More sharing options...
Tree Frog Posted October 5, 2021 Share Posted October 5, 2021 Just thinking out of the box. Would there be any grand or great grandkids who are of age and would be willing/able to come live with your mom for a week or two at a time to at least give your mom a reprieve? I realize they don't live nearby, but might there be any that could tag team? $14/hour might be enough to entice a younger family member especially if they value time spent with an older family member. But they would need to help with toileting and lifting, so that might not work. Quote Link to comment Share on other sites More sharing options...
Spryte Posted October 5, 2021 Share Posted October 5, 2021 I’m not very experienced with home caregivers, but we had a few that we found through our next door neighbor, who works in elder care. She helped us find a few CNAs who were willing to do some private work on the side. Will she qualify for community based Medicaid? That could help with lots of caregiving needs. I’m so sorry, it’s a terrible system. 1 Quote Link to comment Share on other sites More sharing options...
Mrs Tiggywinkle Posted October 5, 2021 Author Share Posted October 5, 2021 1 hour ago, wilrunner said: Just thinking out of the box. Would there be any grand or great grandkids who are of age and would be willing/able to come live with your mom for a week or two at a time to at least give your mom a reprieve? I realize they don't live nearby, but might there be any that could tag team? $14/hour might be enough to entice a younger family member especially if they value time spent with an older family member. But they would need to help with toileting and lifting, so that might not work. Unfortunately no. All the grandkids are adults and most have their own young families now. The closest of my siblings lives four hours away and is a single mom. The majority live on the west coast and have new babies or new jobs. 10 minutes ago, Spryte said: I’m not very experienced with home caregivers, but we had a few that we found through our next door neighbor, who works in elder care. She helped us find a few CNAs who were willing to do some private work on the side. Will she qualify for community based Medicaid? That could help with lots of caregiving needs. I’m so sorry, it’s a terrible system. she does qualify for community based Medicaid and they’re filling out the paperwork. We were basically told good luck finding caregivers that are willing to work for the wages Medicaid pays, though. I honestly think what will eventually happen is my Mom gets sick or injured and we essentially have to leave my grandmother at the ER. It’s a horrid, horrid system and is based on the outdated assumption that there’s always a family caregiver who doesn’t work and can just take care of the elder. Quote Link to comment Share on other sites More sharing options...
J-rap Posted October 5, 2021 Share Posted October 5, 2021 (edited) There are private home health aids who don't work through agencies... We were able to find ones we trusted and were excellent by talking with friends who had hired them for a period. We also posted ads in various churches and did have a couple responses, although by then we had found a different solution. As far as an actual facility... I imagine things are different now due to staff shortages, etc, but when we were trying to find a nice place for my mother, we also were told there were no beds available and she was put on a waitlist. But someone on the "inside" told us that the squeaky wheel gets the grease... meaning, we should keep visiting our favorite places over and over again. So, my sister and I took turns stopping by about three times/week to see if anything had opened, to ask questions, always in a friendly way of course. 🙂 Eventually they became more aware of us and even learned our names and that seemed to bump my mother up on the list. Then one of the admitting people told us that even if we just ordered home-delivery meals for a week from the company that also ran our favorite facility, that would bump her up even more. It did -- it bumped her up to the top. Seems like such a shifty system with no rhyme or reason sometimes on who gets moved up on the list, but what we did seemed to work. As others have said, it's a weird, poor system and often very difficult to figure out the financial part as well. Edited October 5, 2021 by J-rap 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted October 5, 2021 Share Posted October 5, 2021 2 minutes ago, Mrs Tiggywinkle said: Unfortunately no. All the grandkids are adults and most have their own young families now. The closest of my siblings lives four hours away and is a single mom. The majority live on the west coast and have new babies or new jobs. she does qualify for community based Medicaid and they’re filling out the paperwork. We were basically told good luck finding caregivers that are willing to work for the wages Medicaid pays, though. I honestly think what will eventually happen is my Mom gets sick or injured and we essentially have to leave my grandmother at the ER. It’s a horrid, horrid system and is based on the outdated assumption that there’s always a family caregiver who doesn’t work and can just take care of the elder. Oh, what a rotten situation. I’m so sorry. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 5, 2021 Share Posted October 5, 2021 26 minutes ago, Mrs Tiggywinkle said: a horrid, horrid system and is based on the outdated assumption that there’s always a family caregiver who doesn’t work and can just take care of the elder. And that employers can fire thousands of workers and still have enough. What a horrid situation. Quote Link to comment Share on other sites More sharing options...
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