I feel like I’m being taken to the cleaners - paying thousands a month for mom's care. I questioned why so much they say 3 square meals, a bed, 24/7 nurses & CNAs. I get that but seriously?? The total nursing or CNA care she gets per day is maybe 4 hrs per day. Oh wait she gets tv with 10 channels lol. Just really venting here. Anyone feel this way??
On another note I feel super guilty if I don’t visit everyday - it’s getting too much as her 6 week prognosis has turned into 5 months and counting. How do I handle this?
Prior to that (due to complicated Trust, banking and covid issues) we had her at home with 24/7 care. She was paying $18,000 per month until she ran out of funds and I was paying from my savings.
We had a different 24/7 home care coming when mom was still a little mobile. They refused to come back after it was discovered she had a MASSIVE bed bug infestation. They were a little cheaper than the second agency we hired but not much. Plus I think one of the employees from this agency used my moms address to qualify for a free cell phone.
In the both cases we really could not get her to the doctor because she couldn’t walk or stand. In each situation every time she sneezed or coughed or some small rash, etc (not really emergency room issues) they would call us and say she needs a doctor but hello I don’t have a vehicle that I could get her hospital bed in. In addition to that there is no room in the doctor office for a hospital bed and no place to clean her up if she was soiled. After much fighting with Kaiser I finally got a visiting nurse from Kaiser to come to the board and care to check on her and they called 911 if she needed transport to hospital. She passed away in October 2021. The whole dementia care journey was very difficult .
Good luck. I hope I didn’t ramble to much.
Just type in your city or state to compare costs.
It’s very difficult when someone is expected to die soon and then they rally and hang in there. You’re prepared, and then it’s prolonged. Not knowing how this will play out is very draining. My brother was in a SNF due to brain cancer. He became unresponsive and hospice called me to come—I live over 1500 miles away. We sat around his bed waiting. Then he rallied and lived another three months. It’s definitely limbo land. No one wants to say it, but when is this gonna end? Then the money becomes the target of your frustration. There should be someone to talk with at hospice. Good luck.
Yes, nursing homes and senior facilities are expensive. Even if such places slashed their prices in half, guess what would happen. Staff would be laid off. Remodeling would be pushed back. Lower quality of food would be used, then..... Their doors would be closed forever.
Then what?
Remember how expensive it was raising children, sending them off to college. Well double or triple that cost for elders. Elders needs more than just one doctor, they need a dozen. A child learns how to do things on their own. An elder stops knowing how to do things on their own [yes, it can vary]. Remember baby proofing? Well, one has to elder proof, as elder fall. The list goes on and on.
Having said that, I have called a couple of nursing homes to inquire about what they offer. The one where I would probably have placed my mother is a small Christian, independent facility on 15 groomed acres that has 50 independent and 30 assisted living residents. They charge flat fees and a private room is $6000/month which includes meals, snacks, etc. etc. They have more staff than the state requires and of course a waiting list.
They don't accept Medicaid or other government funding so when the money runs out, the resident has to relocate to another facility.
The costs that I pay to keep my mother in my home are approximately $1800/month which is what I pay 3 different sitters to give me a break - (sitters aren't cheap either) but that least this way she will not run out of money.
In my home, she gets the very best of care. I cook all of her meals, shower and dress her, keep her hearing aids working, change her clothes every day, keep her skin in excellent shape, etc. I make sure she gets enough fluids and keep a watch on her BMs. She gets weekly physical therapy. We play music and sing in the afternoons a lot and she gets to have interactions with the 4 different ladies who come in for a few hours on different days when I'm out. I don't have to visit anywhere and when she's napping during the day, I can go outside and do whatever.
So either way you go, there is a cost. I'm very tired much of the time depending on how many times she gets up at night. I have lost most of my independence and can't leave my home until one of the sitters is here. Often, I am envious of anyone who doesn't have to be pinned down to the care of an elder, but it's a choice that I have had thrust upon me and I've made the best decision that I can.
IMO there is no right or wrong. As long as our elder LO is properly cared for, it matters little where they are or who is doing the caring...just that they are properly cared for.
second, about 30 years ago my own mother found a wonderful small assisted living arrangement in northern Ohio. A couple of nurses had purchased an old manor home, renovated it, outfitted it for elders, and had about 12 residents at a time. It was wonderful. But then the regulations started. I won’t go into detail, but they closed down after some years because there were ALWAYS new irrational and oppressive rules, constant checks on their facility—far beyond what would be usual and certainly far beyond what made sense. There is really no question that they were run out of business on purpose. They were developing a model for an affordable, basic, safe alternative to the big homes. And were not allowed to do so.
There is big money in older people for these homes. They intend to keep it that way.
p.s. Watch for the big money shills on this site and forum. You can identify them by their espoused love of the businesses dishing up "institutionalized neglect."
2) if skilled nursing until her assets are gone will Medicaid kick, so the large monthly pay out
3) if Assisted Living, you need to do more research into the options in your area.
Note: Assisted Living as well as skilled nursing facilities are generally owned by corporations which need to make a profit.
Each facility has their own rates per month per and if that corporation has facilities in different states and even counties the rates will vary. You really need to do your homework and know what the state and county allow for care as well as knowing what each facility offers with amenities. Tv with 10 channels sounds like a master antenna rather than cable or direct tv.
I reviewed some of the advice that was written for your case and there are a lot of opinions that need to be backed up by hard facts in the content so just be very careful and believe in what the professionals advise .You definitively need to get the facts to make smart choices.
Good Luck as this is a complicated and tedious process.
As others mentioned, there are other costs involved besides the immediate ones you see - utilities, taxes, insurance ( a biggie), building interior and exterior maintenance, equipment, laundry, etc etc. All these add up and have to be paid to stay in business.
I kept my parents in their home as long as I could manage to do so. When caregiving begins to seriously affect your physical and mental health, you must consider other options. Upon researching the options available and consulting with physicians and elder care lawyers, long-term care was the best option for me.
There were programs (before COVID) through the county and neighborhood churches who could lend assistance. Once COVID hit, fear of transmission to my senior parents (88 and 96) was no longer an option. Siblings and other family members were not close enough to help.
One point needs to be made regarding Medicare/Medicaid. Most times Medicare only pays for 30 days of care, medical insurance does not cover long-term care, and the myth that assets have to be expended to a level of $2000 before an individual can qualify for Medicaid is a myth (I discovered this myth from Elder Care lawyers -- worth every penny they charge). The $10,000 to $12,000 (estimated cost) paid to long-term care would have been paid by LONG TERM CARE INSURANCE, if that investment had been made years before (and it was not cheap even then).
In your research check out the Medicare Care Comparison website: (www.medicare.gov/care-compare). This site will give you a report card of facilities near you or the location you are investigating.
The state and federal governments (Medicaid and Medicare) are the ones who will attempt recover costs after your family member passes, not the facility.
SO ..... Vent all you want, it can be healthy, but do your due diligence and investigate ALL options and the cost of ALL options regarding the care of your loved one. You must take care of you before you can take care of your loved one..
Second “her 6 week prognosis has turned into 5 months and counting” was that prognosis that she would pass or was it that she would be well enough to go back to her previous living situation? Was she placed there for rehab or for comfort care? I ask because the methods of paying for these things differs. If she was sent there for rehab by a hospital or physician Medicare and any supplemental she has should have been picking up the bill for at least the first couple of months providing she was still meeting goals (improving) if not there should have been a discussion about options. If she was placed for comfort care because her life expectancy wasn’t more than 6 weeks you should have been offered Hospice which helps with some of the expenses and the option to stay or go home, maybe even go to a Hospice facility, which is not to say that staying right where she is would be a bad decision but that might open the door for more financial support. Again all based on her income and assets not yours!
As far as feeling guilty if you don’t visit every day, did you visit or see her every day before she went into this facility? If so was that because she needed the care and or checking in on? I totally understand both the desire and need to be there daily at first as she is settling in, especially after an emergency or major illness that has you in emergency mode for any period of time. If indeed the “six week prognosis” was that she would pass, worried it’s going to be any day of course qualifies. Adjustment is really for both of you and from my perspective wanting to be there as much as possible before she passes is as much for you as for her, maybe even more for you. Whatever the original reason you have now moved into a diffrent phase, she is safe and being cared for by professionals, she has not passed or been discharged in the original 6 weeks and there is no real reason for any one person to visit every day anymore, in fact it may not be best for her either depending on her current health issues. Falling into a different pattern, maybe where other people are visiting also and aiming for one visit a day and or getting her involved in activities there at the NH, whatever her “normal” has been most of her life (social butterfly or recluse). Getting back to some semblance of “normal” wether that means seeing her once or twice a week and speaking to her on the phone once or twice a week or something else seems like the best thing for everyone as well as the hardest to me. Most of us, I think, picture passing quietly in our sleep not in a facility somewhere with family around watching us suffer and or die. I have often heard accounts and read them here as well of LO’s who pass as soon as the people that have been parked at their bedside finally go home to sleep, shower or change and wether it’s because the LO is holding on until they leave to spare them, because the LO just doesn’t want anyone to be around or the window can’t open for their spirit to pass through while loved ones are around, it’s not an uncommon thread. I tend to believe that absent an accident the same reasons that we want to simply pass in our sleep are the reasons something in us chooses to pass physically alone and those that know, feel they are loved and not alone are the ones that are surrounded by as much “normalcy” as possible and knowing the people they love aren’t putting aside their lives by visiting when they can out of love not guilt or responsibility. Sounds like your guilt may be fear and letting go benefits both
I've been in the nursing home and now I'm at home with aides. Home is more expensive and a lot more problems. I may make the decision to back into facility care.
I would try to let the guilt go if unable to go 'every day' (wow, that is a lot) Maybe you could carve out a period of time a few times a week if that works better. It doesn't have to be the same days per week. Establish those boundaries for yourself.
My Mom was in one of the nursing home as it now took a village to care for her. My Dad choose a very nice senior facility and he was happy as a clam there, and had wished he would have moved sooner. Both were in their late 90's, and I was a senior citizen myself.
When it comes to our parent's health conditions, we need to be on top of things. I know it can be difficult if one doesn't live in the same area. Thus, we cannot blame a nursing home if a new resident comes in with an issue that is not on paper, and not readily noticeable to the staff. Especially if the resident has Alzheimer's/Dementia.
I would advise cutting back your visits to 2 or 3 times a week at most, so your LO has a chance to better acclimate to their new circumstances and routine, and to save your own sanity.
Yet if it's a nursing home or memory care, hand it right over.
Nursing Homes and Rehab facilities mau have staff on duty 24/7, but that staff is thinly spread among residents. Between COVID and low wages, staffing care facilities is especially low right now.
You may have to live with the guilt of not visiting every day. That seems like a lot.
I spent more than 5 years (daily, on average 8 hours/day - until her departure in June of this year, 2022) caring for my severely limited mother in a nursing home of a self-proclaimed "high end" continuing care retirement community where my mother had a Life Care contract (search for Vi Living). My mother was grossly neglected before I left my career and home and moved 3500 miles to care for her after I visited and found so many things wrong. For example #1 (of many I could share): When I was there to visit before I moved there, I asked the nurse what was going on with my mother's hearing, because I noticed she could not hear me unless I was in front of her. The nurse was unaware of any issue. The doctor stood 18 inches in front of my mother and asked if she could hear him. I took my mother to an ENT doctor and he removed at least 1/2" of wax out of each of her ears. Then she could hear fine. Of course, the facility did nothing to educate the staff or inform them that any unresponsiveness was due to her hearing, not her cognition. For example #2: A few months after I went back home to put my life in order so I could move, my mother started talking about Larry, who she was going to marry, who she was going to take trips with, etc. All my siblings heard about Larry - who was an imaginary friend or a spirit guide. Did the facility have any awareness: No. My mother was so emotionally and psychosocially neglected, she had to conjure up a companion. Once I arrived, Larry was never spoken of again.
BTW: In addition to the hundreds of thousands of dollars paid for the Life Care Contract (effectively a long-term care policy, for Life, but limited to one facility - the community's), my mother paid approximately $10,000 a month for a private room ($4500/month for the 1st year and half in a semi-private room, while she was on the waiting list for a private room).
I advise staying away from nursing homes whenever possible. Metaphorically they are warehouses for the elderly, bad zoos, prisons, or the like. Owners, management, and most staff treat residents as 3rd class citizens who have few rights. Most of the public shares that perspective. Yet, in fact, the resident's space is their HOME. They are entitled to the basic rights of every other citizen in their home.
There are extensive laws to protect residents (42 CFR §483) -- but NOBODY knows them or seriously enforces them.
The system is horrific, but in this country money talks so the compassionless profiteers get away with it.
Within the next few months I intend to have a website built -- adding as I have time -- excerpts from "our" story.
Everyone already knows this.
You were fortunate enough to be able to quit your job and relocate to take care of your mother. Most people can't do that.
For most people a nursing home is the only option because they cannot afford round-the-clock homecare (which Medicaid does not pay for and almost everyone ends up on Medicaid if they live long enugh). They don't have the resources to make mom or dad their life 24/7. Many didn't have wonderful parents who deserve an adult child to ever consider that.
Everyone has a nursing home horror story. Everyone pretty much knows avoiding a nursing home is best. Every person in a nursing home needs someone on the outside advocating for them and making sure they're decently cared for.
No, it's nor necessarily a recipe for disaster. If she has someone looking after her whrn the aide isn't there, she may be fine.
I had a client who I worked for a few hours a day, then her neighbor/friend would stop in for a couple of hours, the client would take a nap, and then her son is home from work.
She had dementia but didn't wander. She didn't try to cook or do anything. She sat in her chair and watched game shows.
An over zealous fanatic social worker from APS had her put into memory care against her will and her family's. She got placed because the social worker (and mind they too get "incentives" and "gratuity" when someone gets placed), brought in people to inspect the home and they deemed that it would need somewhere around $100,000 in renovations to make it "safe" for my client. It was an apartment on the fist floor, her son lived in the second floor. She did fine with her walker which fit in the bathroom. So the choice was pull all the equity out of her house and do the renovations and get 24-hour care so she could stay home for a little while until the money runs out, or placement and a nursing home will take the money then get her on Medicaid. They had no choice. The poor woman was miserable in the memory care facility and basically cried and starved herself to death.
There's nothing wrong with keeping a person at home for the money. They're not going to get better care in a facility.
Yes, this is expensive, but if your mom has only a few months remaining, I pray you have the resources to provide what she needs.
I always tell people to hire private aides. The experienced ones like me who come with sterling references don't work for the crap pay an agency offers. Yet, hiring a private pay caregiver will cost you a lot less than using an agency. Your loved one will get better care too.