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In theory, having a community. Easier said than done.
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Check with friends and family.

I found the best home aides for my parents through friends.

As for the cost...well, if you want to keep good reliable people you have to pay them.
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Good pay goes along way toward getting and keeping good caregivers.
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Unless you’re extremely wealthy, or hid assets years ago so Medicaid thinks you’re already destitute, I’m afraid there’s no way to get reliable caregivers without going broke. Maybe you’re lucky enough to have family/friends that will help out?

My mom spent every penny she had, sold everything of value that she owned which included her house & cashed in life insurance policies to have in-home caregivers in order to stay out of the nursing home as long as possible. That carried her for three years before she had to be placed in a nursing home.

This is a hard road to navigate. I wish you the best of luck in finding finding support, answers, & solutions to help your situation.
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My husband’s parents did the same tiresome “we’re NOT leaving this house!” song and dance. Husband hired a trio of reliable but ENORMOUSLY expensive sitters (luckily his parents could afford it)—$10,000 per month. Owwwch! They weren’t even nurses, just...ladies who sat. Sat and watched TV, mostly. This went on until husband’s dad died, when his mom had to go to a nursing home. It was certainly somewhat cheaper (a “mere” $7,500 per month). Again, luckily she had the funds, and didn’t live long enough to deplete them. We feel a major bullet was dodged...I know everyone isn’t that lucky.
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I used family and a friend referred caregiver for my mom ($10/hr) until she required 24 hr care. Then, I sold everything she had left (which wasn't a lot by this time because of a deadbeat brother stealing from her!) and admitted her to an assisted living facility. She was very happy there ($3,000/mo) but lived less than a year. We never had to apply for Medicaid.
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cetude Sep 2019
If you hire "off the street" and after a certain amount you are 100% responsible filing their taxes, and if that hired person gets injured in your home--or even claim to fall and get injured in your house--they can sue your estate. It's called Granny Tax. PS: If you "let them go" they can sue you for unemployment. That's why I only used agencies. Also if you hire off the street you don't know what they are doing behind your back.
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Well, you discovered the big problem and the question with no good answers for too many of us. Because even if we have some friends, the friends have lives of their own, are too busy or we wouldn't burden them. It is the rare family that would have relatives available as well...and how many volunteer for that? My local area agency on aging had a caregiver support program which was set up to offer only 3 months of help with a dollar limit. I used it and learned some valuable lessons...as some noted above: They average $20 an hour and in spite of agency promises they do as little as possible. I wound up accommodating their schedule based on what I was told; it became more work and stress and I now understand why people don't go down this path. I don't have the energy and patience for it. Instead of having to look after two people, it was like looking after three once I saw what a crappy job they would. Oh, they were nice...they're ALWAYS so nice...and useless beyond being a background checked body to hopefully keep watch. And I supposedly had two of the best. Can you get a job working from home?
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DianneGee Sep 2019
Wow. You summed it up very well. It’s very hard but glad i retired as soon as i did to be home with my Mom. I’ve been scared to rely on caregivers - trust? Cost! And the thought that they would not take care of her properly scares me.
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I suggest asking family doctors and or nurses who they know, recommend or services they know are good. They will be able to tell you the “ better” over the bad without saying so. I would look for positive and good recommendations over so-so comments.
It is hard but there are good caregivers out there.
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gdaughter Sep 2019
For sure this is a good way to go, but too often they are as clueless as the rest of us and all agencies can have some good and bad. The referral I got was from our elder law attorney. I was so hopeful, had heard good things, and they were still lousy at the job. It's sort of how little can we get away with.
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It takes a village.....if you have the support of loved ones and unlimited resources. There is no getting around the enormous expense involved unless you can find a reputable agency with stellar employees at a reasonable cost (not probable) or have the extended family willing to help take on this overwhelming responsibility . It is near impossible to do this on your own and maintain any resemblance of a normal life. Most on this site will testify to that. The other alternative is to spend down mom's assets by living in an IL or AL and then applying for Medicaid. Wish there were an instruction manual to help us maneuver through this difficult time......caring for aging parents is not for the faint of heart.
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You can't - unless you are wealthy and can afford around-the-clock care from an agency.
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If your folks have stellar nursing-home insurance, you can.
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You use what they can afford until it is gone, sell the house and use that to keep them in assisted care (if they could live in AL facility), and then they move to state Medicaid nursing home bed. Be careful about using your own money to fund in home care for them because you may find yourself without appropriate funds when you need home care.
As far as trustworthy and reliable - when possible hire people you know AND play an active role in going in/out to see what is going on. Sadly, even friends and family will take advantage of older folks. Same for people you don't know. If you work, you already know it's a toss of the dice if the new employee is a good one or one that needs to be fired. The main thing is you will have to participate to know exactly what is going on in the home - things can turn bad very quickly if caregiver thinks no one is looking and integrity is lacking.
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You will not go broke. You will not spend your own money, nor will you give up employment to provide care.

You will set boundaries. Part of setting boundaries is deciding what you can reasonably do yourself and what is unreasonable. If you have 3 hours a week free to help your parents, you set the day and time for that. If they have appointments on other days, they take community transit to get there and back.

So often here we read about parents that want to stay in their home, no matter the cost. Unfortunately, the non financial cost is is not on the parents, but the kids.

"I want to stay in my home, but I will not allow anyone, but my son or daughter, to look after me." Or perhaps it is the spouse or a grandchild, who is expected to provide all the care.

Some like Old Sailor are able to provide the needed care at home, Lux was so lucky to have such a loving man in her life. Others like Paul, have a demanding father who insists on disrupting his son's life and family, by refusing community based services.

My know I do not have money, nor will I give up my future to provide care to them. Neither of them, nor any of their friends provided care to their parents. Mum has seen friends having to care for their husbands at home and how utterly exhausting it is. Mum decided years ago which of the local nursing homes she would like to live in when the time comes.
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disgustedtoo Sep 2019
Wish we all had a Mum like yours! Hopefully she will stick to her decision.

Many times our mother would tell me she needed to "clear out stuff*, in case she had to get outta here." When I asked what she meant, she indicated AL. She used to visit places on free lunch/tour days, sometimes with YB.

Of course, enter dementia. Wipe the slate clean. Start over. Do not pass Go. Do not collect $200.

She refused to let aides in after a few months of 1/hr per weekday, sanity/med check only. She refused to move to either brother's place when they offered (no way I could physically care for her, so I didn't offer) and if/when you mentioned AL, PAUGH! I wouldn't live in one of those places!

In the end we had to play games to get her there. Once the facility reopened after rebuild, we had a date in place, brothers were to "assist" in the move. I planned to stay out of that, but expected to get the blame anyway. Just before the move, she injured her leg and got cellulitis, which delayed the move a few days. YB drafted a letter from 'Elder Services' at the hospital where she got treatment, stating she either goes to a place we choose or they will place her. OHHHH was she mad! Reluctantly she went, then hounded YB any time he was there during the next 9 months to take her back to her condo! She's forgotten that place now, focuses often on her previous home (25+ years ago) and her mother. Thankfully, somewhere in that tangled dementia mess she knows better than to ask me to take her.... For now anyway... It'll be 3 years by January.

(*She NEVER did any clearing out of anything! After we moved her out, I got a good look at what we were faced with! Took over a year and a half to clear out, clean up and repair to sell it!!! Clothing, shoes and handbags were the worst!!!)
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I wish I had a answer for you..I was faced with the same dilemma for my family. My friend, who is only 57, had to be placed this last week in a nursing home. It cost $6,000 a month. She has RA and can no longer stand on her own. Medicaid is paying for this. Why couldn't they have paid for Home Care instead? I've asked this a million times for any politician who was standing by me. They just walk away. We, The People, Need to Stand Up for our rights. We pay and astronomical amount for our insurance. Plus all the co-pays. And all the extra that the insurance decides it WON'T pay. This just isn't right.
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gdaughter Sep 2019
Don't know where you are, but check in with your local area agency on aging. There may be some places that support waiver programs and would help cover someone being in an assisted living...but if your friend needs hands-on care it is a nursing /aide situation. It's terrible. The whole system is in need of revamping.
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I've looked at this one from many angles. From my wealthy long distance aunt with no children, to an impoverished friend who is blind, crippled and paralyzed from a stroke w/ no children, to my own husband who nearly died this year... The Caregiver Quality is a big big challenge. Many or most of the caregivers are deeply pressured with so much survival on their plate and or sick as well they perform marginally, or they if have some skills, but their personal disadvantages can undermine their better intentions. The service is outrageously expensive, and fiscally depleting for most. From all ends of the spectrum, from rich to poor, they all say the caregivers for the most part do not care, they just want the money. It's a nightmare, and its reality.
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Hiring, providing care or choosing a facility are some of the unimaginable curses in life! What to do?

Hiring help, you have choices between agencies, some "friend" or family member or private hire.

As many know, hiring from agencies is a huge crap-shoot. Given the low pay and lack or skills needed, you might not get what you expect. Very few are "industrious" and willing to do a lot while "watching" your LO. If you can find them, hang on to them! Most companies will provide a sub if your care-giver is out, but sometimes it falls through the cracks, so there is no one and you might not even know about it! Even though it might sound like the better option, there are issues.

Hiring a friend or family member has it's own pitfalls. There should be a legally drawn up care-giver document. There needs to be more than one and they need to coordinate if someone can't make it, etc. There might be tax restrictions on how many hours a family member can work without it becoming an issue (taxes, SS, medicare, workman's comp, insurance liability, etc.) A friend would fall into the need to cover all the tax related issues, so no different than hiring someone else off the street.

Hiring private pay has additional issues. There are some who are self-employed, who should be doing their own tax payments, etc and should have their own insurances, but how to prove it? For those who are just free lance, there are all those tax, SS, etc liabilities, something you'll have to know about and deal with! Even though they are self-employed or free lance, there still is no guarantee that you are getting what you think you are paying for.

IF mom hadn't refused to let the hired help in after a few months (only 1 hr/day and not required to do anything other than check on her and make sure she took her meds from a timed/locked dispenser - they can't give them, but can point it out), we might have continued this path. It would have been difficult as we aren't local to check on things and wouldn't know if we're getting what was expected, etc. We would've had to find some way to ensure the care we wanted was being provided and if not request someone else or change agency. We would likely be where you are now.

I am relieved that she did refuse to let them in - she also refused to move anywhere or live with one of us. Thankfully she has funds/income to pay for a facility, but the move took some wrangling (POA does NOT give you the power to make them move against their wishes, even with dementia!)

Best you can do, if this is the only choice, is monitor and change if needed. Hiring in any way, shape or form isn't going to be cheap or alleviate a lot of time consumption and frustration for you. Too bad there isn't someone who could run a nation-wide company to hire out some GOOD people at a reasonable rate!

Based on your profile, your mom sounds like ours, except our mother is older. Is there no way to get her into MC? Is her income low enough to qualify for Medicaid (some in-home care money might be available)? Consider 24/7 home care is actually more expensive than a facility. Even 16 hr/day (no coverage when sleeping, not good) at $20/hr, which is a low estimate, is almost $27k/month! Our mother is in MC at a private, non-profit place, and it is less than $8000/m. Rates DO vary based on the area/region you are in, so there are places more and less expensive. There can still be concerns about care-givers and turn over, but that's a different issue. You would have to check multiple places to compare cost, care, etc. Visit multiple time, different times/day, ask other residents or their family members how they like it, etc. Don't just rely on online ratings - those can be false. See, smell and listen.
Unless you choose to take mom in yourself, you will have to chose between these
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We are facing this exact problem. Currently we are using an agency and it is costing $16,000 a month! Mom is not wealthy but my parents were very conservative, Daddy worked hard and set it up so Mom would always have assets and income. We have all agreed that every penny Daddy earned should be used for Mom's care and well being. I have DPOA and am successor trustee on all her assets but hate going to bank weekly and getting a cashier's check and see her account balances dwindling at an alarming rate. We were strongly advised by our CPA not to chance hiring a direct private pay caregiver since as others have pointed out once you do that you have all sorts of tax liabilities and employer related issues to contend with. Although we have a fairly large family, truly no one is able to provide consistent 24 hour a day care. The real kicker is when family and friends drop in for a visit or want to take Mom out for lunch or dinner, we have to still pay for the caregiver who has been scheduled in advance. Which either puts us in awkward position of taking caregiver with or leaving caregiver in Mom's home which she will not allow excepting one daytime caregiver whom she actually likes. ( That's a whole other issue as Mom has kicked 5 caregivers out of her house in less than 6 months. She accuses them of stealing, lying, lazyness, all of which we know is absolutely untrue as she accuses me and my brother of the same things.)We have had to obscure (lie!) to Mom as to how we are paying for "these strangers" in her house by saying her insurance is being billed. She would die if she knew what it is costing her! Mom absolutely refuses to leave her home; she has significant dementia to the extent she should not be alone at all and due to her personality and behavioral issues, it would be disastrous to have her at my house for extended visits. I was bringing her to our house on weekends to off-set the expenses but it was not working on several levels, primarily she is used to doing what she wants (eating, sleeping, laying around doing nothing) on her own time and we were all sort of trapped accommodating her. I know this sounds awfully selfish, but with a husband, grown kids and lots of grandkids I just am not willing to fully commit my life to my mom. We know it will be a matter of time when we have to relocate Mom to a memory care unit and that will be big time drama for her and the entire family.
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Isthisrealyreal Sep 2019
It is not selfish to live your life and have boundaries that allow you to keep your life.

Seniors that demand to do it their way don't get to hijack anyone's life so they don't have to change anything, that is selfish.
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Caregive yourself pro bono. I did.
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idontgetit1946 Sep 2019
Thank you. May God rewarded you for that. Many people have done this, contrary to what you read here. My Mom and her family took care of theirs. My husband and I took care of ours. That's how everyone used to do it, and everyone did not die at 60 or 70. We all have so many more resources than people used to have. It isn't easy, it isn't always fun. Some can't do it, but most can, but don't want to. So sad.
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idontgetit1946: Thank you! And may I add that it required me to leave everything behind - my life, my home, my family, my kid, my grandkid, my state and move 7 STATES AWAY WHERE MY MOTHER DEMANDED TO LIVE ALONE. Stepping off soapbox.
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joleperk: I understand. The caregiving I did was 7 states away and required me to leave my life and everything behind. I don't judge. What I had to do left most (99%) of people I know dumbstruck. I'm not implying that I'm perfect. Just the facts. My late, quite poor, elderly mother lived alone 7 states away from me.
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"I thought this site was for help, and most replies have been helpful, but if you just want to judge, don't bother to reply. Judgemental barbs are extra hurtful when you are already stressed."

This site is for help and as you say, most replies are helpful. Some responses may seem a little judgmental, but there are a few who *really* tick me off. Haven't seen those here yet. Taking care of a LO isn't always a walk in the park. With dementia, that walk can be in the worst park in the worst area of the world!

There are *MANY* issues to consider. OP says there are only 2 of them and both work/have health issues. My parents and mom's sisters did care for their mother, however she was one of the easy walk-in-the-park types. No dementia. Easy to please/get along with. Parents/aunts were probably in their 50s, still working, etc, but didn't need anyone to "watch" her. She passed on before they all retired, and THEY all had a great retirement!

Some of us are already at retirement age, some have enough health issues that caring for someone ourselves isn't possible. Some have younger families to care for. Some LOs are so difficult and unruly that the care giver is likely to end up with some serious health issues if they tackle this alone. It is a hard road to travel.

I DO feel for you joleperk. As I noted, your mother has the same issues as our mother, but our's is older (just turned 96.) One brother isn't local (and now that I realize his nature, it would be a HUGE mistake to have him caring for mom in any way, shape or form), the other is 10 years younger and needs to work, has no extra room and tends to let things slide, so also a poor choice. Between my age and spinal conditions and adding in that my house is NOT handicap accessible (full stairs to get in/out) and bathrooms are way too small to renovate to handicap (there are other issues, but these are certainly blocks to care here), I can't take her in.

Given that she refused to let the aides in after only a few months of simple 1 hour visits weekdays to get started, the only other alternative was a facility. As care-givers, we are NOT required to take someone in. If one can and it works, great. If we can't or it doesn't work out, so be it. We CAN still provide care-giving by being an advocate and ensuring someone is safe and well cared for.

joleperk - with all the issues and cost of hiring people, have either of you considered finding a place for your mom? Assisted Living Memory Care, not a NH (not yet anyway.) Not all are created equal, no place is perfect, but in general it will be less expensive and less stress/work on your part if you find the right place. For those who refuse to move, given dementia you just need to come up with some scenario that works. Our mother refused to consider going anywhere, so we had to use a ruse to facilitate the move. No solution is going to please everyone. If she doesn't have funding for caregivers (you imply this is costing you and your sister), explore Medicaid for your region (perhaps seek some free initial consults with EC attorney to help.) It will limit the choice of facilities. Also, sometimes Medicaid can also provide funding for home care. I believe the caregivers would have to be on their "approved" list, so it might facilitate getting consistent help (never did this, so anything related to Medicaid is just from what I have read about.)
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