I need to get live-in help for mom, in exchange for rent or reduced rent. Any advice on how to go about this?

Most home caregivers get FREE room and board Plus a salary. My sister's mother in law paid $500 a week , plus free r&b. I get free r&b, no salary, but brother will give me anything I want or need, including paying for vacations to see my grand kids with plenty of spending cash, on the rare occasions my sister comes to stay with mom.
Free or reduced r&b will get you nothing...imo.

If there is no money, then she needs to be on Medicaid. I understand that it's hard to set up, and not that great, but you seriously need help. This is the time to spend any funds that she might have stashed away. You should not spend any more of your money on her care than you absolutely have to.

I think that for your health, she should go into a nursing home, where they can deal with her behavior.

I guess I did not make myself very clear. First of all, in my post I focused mostly on the wanting practical suggestions part, not realizing that what I needed as much or more was some encouragement and emotional support. I am feeling very ragged, from taking mom to the ER in the middle of the night and spending most of my time at the hospital with her for several days, but I held it together pretty well until I watched them put her on a gurney and wheel her to the ambulance to transfer her to the rehab facility. It hit me like a ton of bricks. Then I stayed at the rehab facility all day and night to hopefully help her settle in and to make sure she was getting good care. The first night that I went home to an empty house was crushing, it felt something like going home alone to an empty house after a loved one has died would probably feel, and I still cry just thinking about it. At least I knew she was comfortable and getting better there and they were taking good care of her, and knew I could visit her any time for as long as I wanted, and I thought there were things I could get done at home because I could come and go and be out of the house for most of the day to take care of things that needed to be taken care of. But I was sleep deprived, a wreck emotionally and weirdly disoriented without her being at home, so I spun my wheels and was not able to use the time well. And then after a couple of days they started calling and telling me I needed to come in because of the behaviors I described in my earlier post. It came to a head yesterday, the 4th of July, because for several years I have not been able to be with family or friends for ANY holiday, and finally yesterday I was going to go and enjoy the holiday with some dear friends that I almost never get to see any more. Just as I was leaving they called and asked me to come in, and I had to call my friends and cancel. They finally gave her a sleeping aid last night and she went to sleep and I came home, but I was anticipating that they might call me this morning and say yeah she slept some, but now she is agitated again and you need to come in. And, I was thinking, what's it going to be like when she comes home? That's when I wrote my post. I called and checked in sometime after that and they told me she slept through the night and she was much calmer and contented and they did not anticipate needing my help until the evening when she is not being occupied with therapies and activities and meals. I will go see her then and go home when she falls asleep, which is much better, and I now feel very relieved that the rest of her time there will be much better for her and for me.

I think a lot of her agitation and restlessness at the facility has been because she is recovering and getting stronger and she is more aware that she's in a strange place and wants to go home. At home, she was VERY difficult to take care of for a few years because she was CONSTANTLY trying to go "home" (This house has been her home for more than 40 years, but she wanted to go "home" to her mother and father -who passed away more than 30 years ago), and she had a lot of VERY difficult "Dr. Jekyll and Mr. Hyde" mood swings, from sweet and easy going and appreciative and funny to angry and hateful and demanding and weepy, obsessive-compulsive behaviors, with absolutely no distracting or diverting her attention to something more positive, and I nearly lost my mind. In the last year her doctor put her on one more dementia medication, and it has dramatically improved her mood and behavior, and she is sleeping more. She rarely tried to "go home"any more, and when she did, she would only pace around for an hour or so in the late evening, then she would drop it and happily go to bed. She almost never mentioned her parents any more, which was a relief for me. My life has dramatically improved as a result of these changes, to where I would say that most of the time it is actually pleasant, and I would really be very happy to have her come home and to continue being her caregiver under those conditions. If you read any of my previous posts, you'll see more of what I'm talking about. This website has been a lifeline for me! However, the last 2 to 3 weeks before going to the hospital she was getting a urinary tract infection and I didn't know it, and she was sleeping later and later, it was getting more and more physically difficult and exhausting to get her out of bed and she needed more frequent trips to the bathroom and more help with toileting, and she was beginning to return to some of her oppositional behaviors, probably all mostly due to the UTI. I thought because she was sleeping so much she wasn't getting as much exercise and stimulation and it was making her more weak and irritable, and I was getting exhausted and my back was hurting. Her agitation at the facility and obsession with wanting to go home to her mother and father again brought back all those feelings from those years when it was so hard, and when I posted my question this morning, I was reacting to that fear that life was going to be AWFUL again.

On top of that, I was also facing the prospect of having to do it completely alone. Several years ago, I was lucky to find this guy on craigslist; he posted an ad offering to do handyman work in exchange for a room rent free or for reduced rent. He is just old enough that it would be very difficult for him to get hired full-time anywhere, he tried for a long time before he posted his ad on c.l. He fixed our car and things around the house when needed, and over time I have needed less handyman-type help, and more help with mom, so it has worked out well. Currently, he does most of the grocery shopping for us (= a couple hours a week). He buys his own food, so it isn't even room and board free, it's just rent free. He also cooks a very large dinner for us once every other week or so - just because he loves to cook - and then we split what he cooks with him. These are things he offered to do, I never required it of him. If I need to leave the house for a dr appointment or to run errands or see a friend for some "me" time, he was able to stay home and keep an eye on her (= a few hours averaging about once every other week or so). And now that she is easier to deal with, it is very easy for him to do this. I almost NEVER asked him to when she was so difficult. And, as difficult as she was, I did hide knives, sharp scissors, and anything else she could use as a weapon against ME! Even then, even though she was usually confused about who he was, she never threatened him, and now, she is more easy going and actually too weak to be a danger to anyone (or else I would not even THINK of having even older children in the house). Even though agitated at the rehab facility, she is NOTHING like she was at her worst, and now that she had a full night of sleep, she is already much easier for them to deal with, they are just afraid she will try to get up and walk on her own and they can't watch her exclusively because they have other patients to take care of. It turns out she has been pretty compliant with the therapies, and she has not been a problem during activities and meals, just not able to comprehend everything they might ask her to do, and eating VERY slowly. Wanting to get up and go home has actually occurred mostly during down times when the nurses are busy administering meds to all the patients and there is nothing for her to be occupied with. Given this info, I am now confident that she will not return to being difficult to take care of when she returns home. Of course, our guy at home has not done the toileting part, and up till recently mom has been mostly independent in that area. Since she has become more incontinent, I make sure she has had her toileting needs taken care of before I go anywhere so she won't need him to help with that while I'm gone, and she is just watching tv or napping on a recliner chair that she cannot get off of without help. He just checks in on her every 5 to 10 minutes, and if she is trying to get up, he helps her get up and walks around with her until she wants to sit back down again. If she does go in her "depends", I take care of it when I get home. He lost his car a couple years ago, and since then we have shared our car with him. The vast majority of his time is free and a lot of the time he is not even home all day, and when he is home, most of the time he is in his room pursuing his own online business interests, and he is also able to pick up the odd handyman job or car repair job on craigslist so he has some income, so this is nothing anywhere near a full-time or even a typical part-time job for him, hours-wise. It has been a tremendous support emotionally knowing that he is there, or that I can call him and he will come home if I if I need help, and that I don't have to make arrangements with some home care agency and pay a lot of money for a stranger she might not even like, to come in for a few hours here and there, and also having someone who sees how she's doing from day to day and I can brainstorm with or vent to if I'm having a difficult time. But one of his business pursuits looks like it is working out for him; if so he will probably be moving out soon.

I'm not asking for someone to take care of mom full-time and pay them less than minimum wage while I go off and live my life. I would still be the 24/7 caregiver. I just need someone who would be present for occasional help, like if she falls, which so far has only been a few times a year, and for the 5 minutes it would take to help ME get her out of bed each morning and occasional 5 minutes it would take to help ME get her into bed at night, so I don't end up with a back problem and no longer able to take care of her (if I get her a hospital bed and transfer board, maybe I won't even need THAT help), and maybe 2 to 3 hours once every other week, up to occasionally 2 times in a week of keeping an eye on her while I run errands or go for a visit with friends. Most of the time that they are keeping an eye on her she will be napping. On occasion if I really need to concentrate on something without interruptions, I might ask them to take her for a walk in her transport wheelchair (which has small wheels and brakes, so she can't roll off on her own and a seatbelt so she won't be getting out of it on her own and falling) or with her walker, if she recovers enough strength and they are comfortable with that. On rare occasions if she actually realizes she needs to go to the bathroom, she will need help getting up, and attendance while she walks to and from the bathroom and help with the toileting while she is there, and if they don't want to do that, I understand, and, like I do now, I would take care of it when I get home. I would occasionally need them to do some grocery shopping/errands if it's not a good time for me to leave mom and go do it myself. This all averages out to just a few hours (usually about 3 to 5 hours per week, or up to 7 to 10 hours during the odd week that I might need more help) of very light duties in exchange for free housing. I would welcome a single female, a single mom with a well-behaved child or two, or a married couple with or without children, in which case I would be happy to babysit children who are old enough and well-behaved enough to not need my constant attention. Someone who is in college, (especially a nursing student, who can deal with bodily functions) and can only work part time while they go to school, and can't afford rent for a house or apartment, or a couple that is trying to save up money to buy a house might be happy to not pay rent in exchange for a few hours or more per week of light duties. She, or they, would get the upstairs of the house, which is one large (two bedrooms in size) bedroom, share one of the two bathrooms downstairs (I would say exclusive use of one, but sometimes I just have to get mom into the closest one available), kitchen and laundry privileges, plus exclusive use of the large living room, which we never use, plenty of storage space in the garage, parking on the driveway instead of a carport, etc,. in a pleasant, crime free suburban neighborhood with very nice, quiet and stable neighbors. We have a well-behaved little lap dog, so they could even bring a well-behaved, potty trained small dog as well without being charged a pet fee! No landlord, no rent being raised, no loud parties nearby every weekend like I have experienced in some apartment complexes, no having to lug laundry to a laundry room, no association fees, etc. Does anyone think this situation would be unreasonable or illegal?

I have heard horror stories of people in my situation getting "helpers" that may look wonderful at first, but end up being dishonest and ripping you off, or, worse, being abusive, and mom won't be able to tell me if something is going wrong while I'm not there. So, I'm just asking for some practical suggestions on how to find someone, where to look, beyond craigslist, and not a caregiver agency that would charge too much, how to make sure I get someone who will be honest and be good to mom. What red flags to look out for, how to set things up at the beginning so boundaries and expectations are clear, etc. Does anyone have any suggestions along THOSE lines?

Thanks for the suggestions re nursing home, etc. However, mom has no money stashed anywhere. She gets $1500.00 a month soc. security, and she has a well-off sister who sends us $1000.00 each month, and even being very careful and buying almost nothing for myself and spending next to nothing on non-essential expenses, we are still hard pressed to get by each month. I have no job/income because mom needs 24/7 care, and I used up all the savings I had within the first year of taking care of her. Even with Medi-Cal (California's Medicaid) we would have an $800.00 "share of cost" for each month she is getting help from Medi-Cal, which we cannot afford. If she went into a nursing home, the soc. sec. income would go straight to paying for the nursing home. Oh, wait, she would be able to keep back $35.00 per month for personal expenses. If I didn't get a job right away, I would not be able to make the house payments and have enough to live on. I would have to sell the house, all the money would go to the nursing home, and I would have to live with my brother and his family. They have told me I could live with them, I love them, and they are good people, but I really don't want to do that, there are so many family dynamics that could make it go very wrong. What works out best, in my mind, (and I could be totally wrong, but it is what I would like to try if I can get it all together) would be to have someone like I described above, so I can even spend some time looking around so I can get mom into an adult daycare 2 or 3 days per week, so she can get more stimulation, and I can start looking for a part-time job or find work I can do from home that I can do on the days she is there. I tried a nice, non-profit daycare a couple of years ago when mom was at her worst, hoping for some respite, but she fought it tooth and nail for a couple months until I finally gave up because the struggle was more stressful and exhausting for both me and her, and not a bit of respite for me. But I think that with her condition having advanced, and with the latest meds helping so much, there is a chance she would not fight it so much, and she might actually adjust to it and begin to benefit from it - it would at least be worth another try at this point. The one thing holding this back now is that the other daycare places I have found by internet search would be too expensive, and we would need to cover it with Medi-Cal, which would cost us the $800.00 per month.

If I had to, I would be willing to rent out rooms and have roommates so I would be able to afford to still live here (I have had enough of renting a room in someone else's house or renting apartments and living alone). I grew up in this house, it is home to me, it would break my heart to have to sell it and put mom in a Medi-Cal nursing home. Dad was in one for the last 6 months of his life, and it was awful.

I'm sorry, I think I have written way too much for anyone to want to read. It has helped me tremendously to write all this, knowing that someone might read it and have some encouragement or helpful practical suggestions for me. It has forced me to organize my thoughts more than I've been able to by just thinking in my ragged, sleep-deprived, stressed-out brain. Thank you all, for any input you can give me.

Kabeeena - it's pretty clear that you know what YOU WANT and that's good. It's also obvious that you've thought out pretty well how to go about getting it, at least as far as the thinking goes. What a lot of us already know is that your mom is going to continue to get worse and in your financial situation, there's a possibility that she'll get worse and have to go into a nursing home before she passes away and you lose the family home to the state for medical expenses possibly.

You haven't indicated your moms age or how long she's had dementia or when it became severe or, how much longer the medical professionals expect her to go on in her condition or worsening. Your and send you a thousand dollars which you add to the 1500 social security already received, the sum to take care of your mom, the house and personal needs of the two of you, right? So your aunt is in agreement with your path? And there are no other siblings to contest what you're doing? For one thing, I believe you need to ask your aunt for money to consult an elder care of attorney, especially in California, to find out about setting up a trust to protect the house if possible since you're living there and you don't have another place to go.

Next, you've talked about this gentleman from Craigslist which you kind of found by happenstance and it seems to have worked out really well. Now with the possibility of him moving on, you seem so deadly an awfully concerned that you might find BAD folks next time around. Hmmm. I think you need to keep your mindset in the same place where it seems to have been all along: you have positive vibrations about what you want to do and you the track to talk to people to help you do it. in this fragile economy, I think you probably COULD find someone who's willing to have an arrangement similar to the one you had with the gentleman. Why not? A nursing student sounds like a great idea. I searched on Google Maps and it looks like several places within driving distance of Tustin.

One last comment if I may be so bold. I would suggest when you're posting to put just a little mental thought into it your thoughts for you like support and your thoughts for you like suggestions. I know you're trying to get us all up to speed on your situation but people who don't know your situation I feel lose focus when you're trying to concentrate on such a long story. If you could make it clear to us when you were giving us background information and venting, and you could make those the long posts, and then try to be more succinct and concise when you're actually asking for advice or maybe try breaking your questions up into several smaller post. We are all getting help from the site and we all want to give help in the best way we can. I think if you did that, you would get more focused and specific answers. You can of course continue the way you been doing, that would just be my idea how you could help me help you better.

You have selected in home till the end of days care of your mom if possible. It is probably the most difficult path of all caregiving. I for one wish you well and promise to read all of your posts no matter the length.

Three years ago the going rate in Miami for Monday to Friday was $300 per week, plus room and board. Assume they would want acces to the room on off evenings (else they would need to pay rent elsewhere). This rate is to care for a child or elder, not requiring medical help, not through an agency. Additional work is negotiable, if you underpay, you may find a desperate soul, who will walk out as soon as they find something better.

Advanced dementia is more complex, my friends mom attacked her caregiver with a knife, because she thought the caregiver was an intruder. Needless to say the caregiver wanted to resign. My friend removed all knives and scissors, unfortunately, mom could always use a lamp or phone as a weapon. I feel for you, I would opt for at home care, most elders do not want to leave. But be vigilant of the situation, advanced dementia can be difficult to deal with at home.

Best of luck


L

You are tired, and you are facing a very difficult task.
One way or another God will provide.
Blessings to you and your mom.
L

Hello, You have been an amazing daughter!!!! I have been taking care of my father over the last few years but I've always had a caregiver to help while I was at work. I had to sell my fathers house in order to pay for care but I had a house of my own. I use Care.com and pay $10.00. I take care of my father after work and on weekends but it is tough and tiresome. I tried to hire a live in, but I found homeless people instead. I may try it again. In your situation where you are a full time caregiver, I would try looking on Care.com to see if anyone is interested in room and board for helping with your mom. You do most of the work and I think a caregiver will be able to help you at night so you can sleep. They have screening options on Care.com for background checks and some have reviews. Part of the work for the caregiver would be to cover 4 days and a few nights. You could then find a job while the caregiver is there. We have a radio spy recorder at my fathers so I can look back to see what is going on. It was not expensive either and it gives me peace of mind knowing I can always look at the video if need be. God Bless and Stay Strong!

This question was asked five years ago and I hope everything worked out ok. This poor lady was on the edge and I feel awful for what she had to go through. I hope she found some peace.

Why are posts this old not archived or at least set that responses are not accepted.
The post is from 2013.
And to any one that does respond do NOT leave your name and phone number on a forum like this or any for that matter. Use your head people!

People! This post is 6 years old. She probably doesn’t need the same help now.