Family member caregivers -- who pays for the food?

AZ - I think it would be a shame to let your sisters bully you into what was a very reasonable arrangment between you and your mom - and in the long run might benefit your sisters if there is money left to inherit - because it all didn't get spent on a care facility. Over the course of their lives my parents finanically helped out all three of their children. My dad always said "I'd rather give it to you now when you need it than waiting until after we're dead". Although I NEVER asked, my dad always told me about these gifts to my brothers and their children. I always said "Dad, you don't need to tell me this, it's your money, do whatever you want with it". I never kept a running total and never mentioned what I knew to my brothers. I honestly don't know if my dad told my brothers the same information but think he must have. When my son was around 18 months he was diagnosed with cerebral palsy and shortly after that, autism. My husband had left us to return to his home country of Australia - he took with him every dime we had. My parents decided at the time to set up a small trust fund for my son. Basically the cost of the lawyer - which wasn't cheap, and a small amount of "seed money". When my middle brother found out about it he had a fit and peace was not restored until my parent opened college accounts for their other three grandsons in the exact same amount as the trust and lawyer fees. I would have never allowed my parents to set up the trust if I had known what it ended up costing them when the dust settled.
Just recently my mom went into a NH. My middle brother took her computer. During a fit of rage regarding something completely seperate he told me he was scouring her computer for evidence that my parents gave me more money than him. (Sigh) while I never kept totals I highly doubt he's going to find any such nonsense and it just makes me very, very sad that he's even going to try. Greed does awful things to people. I'm sorry you're having to see this in your sister.

Just wanted to give an update. Although it made sense to Mom and she was agreeable to it, this matter has caused a real fire-storm between me and my sisters. About 10 years ago, one of them borrowed about $65,000 from the folks over a period of 3-4 years because while she was going to college and only working part-time she needed help making mortgage payments, putting a new roof on her house, etc. No one ever told me about it, I happened to run across the information while going over my folks' finances after my Dad passed and I needed to go back and straighten out the check registers on their accounts where he'd had difficulties writing in wrong amounts, etc.

Finding out about the loan/s to her didn't bother me, if she needed the help and they could help her, that's fine. Except for one thing: my husband and I have needed to borrow about $45,000 from Mom due to an overly-complex situation that arose during my husband and I buying our own place here after we moved across the country from NC when I realized the folks needed someone here 24/7 -- and my sisters have made a big deal about it. To the point that one sister accused me last week of "getting the lion's share" which obviously referred to Mom's financial assets. Obviously that's not correct, since our other sister has borrowed more than I have, and this sister who accused me has known about that $65,000 a long time. And when I pointed out the difference in what each of us has borrowed from the folks -- and I have no problem with what they have ever borrowed, mind you, I've never said a contrary word to them about it -- it just called down more crap from them.

I feel like I've been played for a sucker. Not by my Mom and Dad, but by my sisters who I've always thought were my best friends come what may. The fact that I was open with them about what my husband and I have had to borrow, because it had to do with Mom's finances, has been turned around and used to stab me in the back. Never mind that if I was not looking after Mom 24/7, I could not even get a part-time job so that we would not need to borrow so much. Never mind ANYTHING that I do for Mom, it's apparently all about the money to them. They don't even give her a call once a week, unless I encourage and remind them to do it. They only live about an hour away but never come to visit her unless it is one of the weekends that they are willing to look after her while I go and spend some time with my husband -- which has at times been up to 8 or 9 weeks since the last time.

I'm just shocked. And at this point, I would not take $150 - $200 from my Mom for my share of groceries/sundries until hell freezes over.

Good for you, AZ and good for your mom! Now follow through and don't worry about your sisters. I have a motto that I had to use once in a while on one of my brothers: If your not helping you don't get to criticize.

I wouldn't be surprised if you find groceries for two aren't much more than for one. Mainly this is because it is hard to find a package of something for just one person, so there is often a good bit of waste if it doesn't keep. It costs $400-500 at the grocery store each month for my mother and myself. This includes all the food, paper items, and toiletries -- things typically bought at the food store. This is not much more than my food alone. I'm glad that your mother is in agreement with you.

I really should let my mother buy all the food. I am going to have to start doing that. She thinks she feeds me, anyway, so I may as well make it true. Sometimes I get so focused on saving her money that I forget that I need to watch my own. I am glad that we had this discussion. It helped me sort out how I feel. If we are wealthy, it is one thing. But to give so much when we aren't wealthy isn't taking care of ourselves. We have to keep things in balance.

Now we'll have to see if we can barter some extra time for you to spend with your husband. He must be a jewel. :-)

I did bring up the subject to Mom today, and she is pretty much okay with it -- she basically wanted to have some idea whether or not her monthly income (Social Security and a small survivor annuity from my Dad's government annuity that ended when he passed) would cover it or how much would she need to take out of savings if we do this. Doesn't look like very much would need to come from savings.

Babalou, I will talk with her pcp this coming week and get a referral for a neurological. Those types of behaviors in her are random, certainly not daily and her mind functions well, so I'm sure she does not (yet) need something like memory care. But her needs go beyond AL, because she can barely walk without her knees giving out, needs help toileting, needs her food cut up for her (arthritic hands ... no pain but crooked fingers and weakness), and does not see or hear well.

Okay. I was giving your sisters the benefit of the doubt. Do they "get" that you'd rather be living with your husband? Do they understand how much care for your mom would cost of you weren't there?

To look at the biger picture, from your other posts, mom appears to be declining, in terms of delusuons, verval aggression and lack of cooperation. I'm going to suggest that the time is NOW to take mom to a neurologist/ neuropsych for a cognitive assessment that determines what level of care she needs. Cost that out (AL, Memory care, living with you and hubby with carrgivers and adequate respite). Qhat agould NOT continue is you "giving up" time with your husband and your own interests /activities without any compensation or consideration for what you are doing.

Az - I hate to see you getting twisted up over these little details. Bottom line you were asking for $10 a day - that isn't even a one whole hour of in home caregiving from an agency! You deserve that and a whole lot more.

Babalou -- no, I don't think they believe I'm being compensated. They know Mom is not paying me anything.

I have been working today on breaking down the groceries/sundries to see exactly how the "shared" portion works out. Because I do keep all the receipts and work it up once every month so Mom can reimburse me for her share, it's easy to go back through the last few months and look at what my share is.

Some things are difficult to determine -- for example, when it comes to food, Mom and I mainly share on the dinner meal because she eats what she likes for breakfast and I eat what I like but I pay for those things myself already as she doesn't eat those things. When it comes to the dinner meal, I eat a larger portion of servings than she does but we are splitting the meal cost 1/2 and 1/2. However, when it comes to something like toilet paper, she uses a lot more than I do and we split THAT cost 1/2 and 1/2. Most of the laundry is Mom's, but we split the cost of detergent 1/2 and 1/2.

Also, I don't typically ask Mom to pay half the cost of my gasoline even though most of it is used for errands around town that are for joint purposes such as going to the grocery store, going to the pharmacy, going for the mail, etc.

AZ, is it possible your sisters believe you are being compemsated, hence the " business arrangement" comment? I would get yhem on a vonference call and clarify what they think is going on. If they can't see the idea that $300. a month is fair and equitable, i would see this as an intolerable burden and go back to your life with your husband.

You know, this is the second case I seen on this site that has left me flabbergasted and near speechless. The second case of sisters treating sisters ruthlessly and like doormats - suddenly having only brothers is looking pretty good. I don't have a great relationship with one of my brothers but even the as* that he is, wouldn't refuse me .46 cents a day for providing full time care for our mother. With sisters like this, I'll take brothers.

AZ - to he•l with your sisters - seriously, a business arrangement? That implies you are recieving something in return besides brownie points! Just do it! You handle the money, right? Keep all receipts and spend judiciously. No one is going to be able to accuse you of fraud or elder abuse if it actually came down to a investigation - and it won't. Your sisters are taking huge advantage of you! I am actually angry on your behalf! Either spend a reasonable amount to feed you and your mother or go home to your husband and reclaim your life! Find a nursing home for mom, call your sisters and tell them the cost and give them the date of your last day as a doormat. Sorry - I don't want to hurt or offend you but this situation is beyond unfathomable. You have done your time, sacrifice enough. Period. However once your sisters take you seriously and understand the cost involved with a nursing home - they will change their tune. Really though - isn't it time to regain your life and your relationship with your husband? Even when your sisters change their tune I don't think you should dance to it.
I am DPOA for my mom - the paperwork says I can pay myself - I don't merely because I don't need the money. The papers also allow me to pay my brother for caring for my moms cat - he has said no. But trust me, if either of us needed the money we would take it - and do so without guilt. Think about what you do day and night - day after day - isn't it work .46 cents an hour? Sheez!!!!!

Thank you @Babalou and @JessieBelle -- I appreciate your support :)

What really threw me was them referring to this as a "change in a business arrangement". As I mentioned, there is no "business arrangement". Had I been told it would be a "business arrangement", I'm sure I would have at least thought about some kind of reasonable financial compensation as well as scheduling some days off every month. If we figure cost of home care at $10/hr and that being 24/7, then I've already saved my Mom about $86,000. If she'd had to go into a nursing home, by now all her savings would have been gone, all her investments would have been gone, and her property and home would have been sold. As it is, since I haven't charged anything and AM looking after her out of love and appreciation, she still has her assets -- which I feel need to be protected as much as possible just in case something would happen (to her or to me) and she'd have to go to a nursing home and would need that money.

Yes, I'm a senior myself. Just turned 67, and my husband and I are on Social Security plus his disability compensation.

AZLife, I think the key words there are "if they were able to stay with Mom full-time." Really, they could, but it would require rearranging their lives. Not being able to help is really just a mindset some people have. People with this mindset depend completely on the one that gets involved. What a tremendous favor you do them. It is sad that the favor is not being shown back to you.

I would do what I need to do to take care of myself in your position. IF your sisters were there, they would pay for their own food. But the truth is that they choose not to be there, so don't have to do caregiving or help maintain two households. It sounds like they are pretty much getting a free ride on your back. If that is the case, they don't even deserve a word in what you do.

You personally know what is reasonable and what is right. Your sisters p*ssed me off. If they aren't going to participate in caregiving, they can at least support the sibling that is. This makes me appreciate my brothers more. They don't help, but at least they don't hurt.

Tell them their opportunity for privilege starts next week and go home to your husband.

Well, the response from my two sisters Is In and basically consists of this: "If we were able to stay with Mom full time, neither of us would expect Mom to pay for shared commodities or food. We feel that way because Mom has never asked us to pay her back for the 18+ years she and Dad provided for us. We would consider it our privilege and opportunity to give back to her for the years she has given so much to us." This followed by a bunch of criticism of me they hope I won't view as "judgmental".

Oh, and they consider my request to have Mom pay for my share of food/sundries here as being "a change in a business arrangement". What business arrangement? Someone should have told me and I would have handled many things much differently than I have.

OhJude - just kills you about the church, huh? My mom spent years looking for her right church. She found it in the strangest group of people with the strangest doctrine I've ever come across. A few times mom blackmailed me to going with her to their service plus I attended a number of functions with her - I have never come across anything like them but whatever - they were happy and mom was happy being a member. It's a pretty small group and I know money was always an issue - when mom first joined they held service in a vacant store, but that's okay, you can worship God anywhere, right? Eventually they did move into an actual church. My mom gave a couple thousand every year as her annual pledge. Then several times a year they held teas and auctions and such to raise money - mom always gave generously. When daddy died mom made a new will leaving this church a very large sum of money - daddy would have had kittens had he known! I didn't like it but said nothing because it's moms money to do with what she wants. Then mom lost her drivers licence. Every now and then someone from the church would come visit or offer a ride to service or take mom to their tea. Then it became a little more difficult to deal with mom, both in attitude and mobility - it didn't take long for the few visits and the rides to stop. Quickly it became transparent even to my mom that the only time anyone from her church contacted her was to ask for a "pledge or donation". Mind you, mom was very involved in this church until her driving stopped. Mom finally caught a clue, had me take her to her lawyer and again made a new will excluding her church. If they only knew - we are talking a mid five figure amount. Makes me smile whenever I think about it.

Can I just add it IS OK to say I don't WANT to do this any more. When that time comes and the tut tutting brigade come out and tell you how awful you are. Tell them this

Get a life

Oh but then you are able to aren't you...I am not...so butt out

I am fed up of the churches do gooders telling me what I should/should not be doing and has Mum made provision for a donation to the church in her will? WTF I bloody hope not.... apart from the person she PAYS $15 (conversion rate applied - Brit here) to take her to church each weekend (a taxi for the same distance would be $20) we have never seen the minister, no contact from any of the other members apart from one who phones once every 8 weeks or so and she commits about 2k every year if not more....and they want more?

I am just wondering if I am executor when the time comes and she has left them money how long I can string it out before I have to pay them!!!! No seriously she hint left them money but I was shocked they had the gall to even ask

I agree. Maybe its time for NH. Especially if she is not getting around on her own. My Mom can still boost herself up and that still puts a strain on my back and elbows. Won't be able to do it once she can no longer do it. When we marry, we break away from our parents. We now have husbands and families of our own. We have a right to enjoy them as our parents did there's. Our responsibility to our parents is to make sure they are safe, clean and fed. When the time comesthey can no longer remember to eat, drink, and take their pills its time to put them somewhere safe. Me, it was my home because it was easier for me. I was babysitting a toddler at the time and had to wait for daughter to get him placed in a Daycare. We all would love our parents to stay in their homes but sometimes its just not feasible. Here where I live we have two AL that are really nice. If Mom had the money, she would be in one of them. I'm 66 and husband is 69. The years are going to fly by. I will take care of Mom but I know there will come a time when I don't have the skills to do more than I am now.

Sorry, but "make other arrangements" just doesn't seem like a solution to me. Looking at this from a practical stand point regarding the mothers finances paying a total of $300 whether in cash or towards the grocery bill for a full-time care giver is a bargin to say the least - based on a 30 day month and a 24 hour day that comes to .42 cents an hour. If one really wants to be a stickler and exclude hours mom may be sleeping we are still looking at less than $1.00 per hour. Okay, so no one wants to pay for the caregiver to eat and mom has to move into a nursing home because the caregiver can no longer put a strain on her personal finances. Since mom doesn't qualify for Medicaid she self pays at the cheapest NH she can find - $3000. maybe? Now mom is paying $2,700. more a month because $300 for extra groceries didn't seem...what? Fair? Right? Is it the fact that this is a daughter rather than a stranger the sticking point? Clearly it isn't the money because I really didn't need to spell it out in dollars and cents for anyone to know paying for extra groceries vs a nursing home is the more financially sound way to go. So if it is the daughter issue, why? Because mom gave birth to her and raised her - the daughter should be treated with less generosity than a stranger giving care? You would think the opposite would be true - especially since this is not a case where the daughter needs to do this to keep from being homeless. The fact is the daughter has her own home stocked with food and a husband. This woman is giving days, years, actually of her life to take care of her mother. Time she will never get back to spend with her husband. No offense to the OP but given the mothers age, I'm guessing the daughter is no spring chicken herself - when does she get to live her own life? I also ask why this is her duty to perform alone when there are two other siblings - if mom doesn't want to pay the $300 then they certainly should. Fact of the matter is, if there is money left for the sisters to inherit when mom passes - just maybe it has to due with mom not having to pay care costs all these years? The OP is already giving up a highly valued commodity - time - time she'll never get back to enjoy her own retirement and her own home and her own husband - she's already giving up enough to take care of her mother - hard work as it is, she shouldn't have to face financial difficulty and possibly a strain on marriage as well. Personally, I think the OP is nuts but obviously what I think doesn't matter.

Just try to come up with a solution for the OP, rain.

I think in the future, if we are not to have an all out revolt by caregivers there has to be something put in place to train them to caregive effectively and safely and to pay them an amount that is relative to the work they actually do.

In the early stages of caregiving I certainly did not have a clue how much I would eventually have to do for Mum and how much it would financially impact on my life and my future. As the stages have developed I find it more than a full time job. I can't really leave the house for more than an hour without getting care in and as the law stands shouldn't leave her at all. So in reality I am expected to effectively have a prison sentence in the form of house arrest.

Should I accept that? Absolutely not but I have to pay to be let out and since Mum is a nightmare if we try to bring in an outsider that leaves.... well that would be me then!

Usually drive-by comments don't bother me, but these stuck in my craw. I guess because they were so non-supportive of the caregiver. It seems mean to read of the financial difficulties faced by some, then say that they should pay for their food with no other explanation. It is like saying that their difficulties don't matter. They DO matter as much as the difficulties faced by the elder.

I suspect that in future years there are going to be more family caregivers. There won't be any laws mandating the service, but hiring services or placement will become so expensive that many will not be able to afford it and Medicaid may have to cut back on how much it can pay. If someone doesn't contain costs we are sure to see some changes. I do see a problem, though, if one person per family is expected to carry the load at a huge cost to her/himself. Maybe someone should have care receiver classes to teach them how they can help their caregivers in a balanced way. (Of course, my mother wouldn't attend the classes because she knows how things should be already.) :-)

Really, Llamalover? Make other arrangements over a $300 difference in groceries? These other arrangements are gonna cost a hell of a lot more than $300 considering mom is getting her current full time caregiver for free.

I think the main problem JoAnn is that those people who take on the role of caregiver don't find this site until its too late. If I had known then what I know now springs to mind but its easy to have 20-20- vision in hindsight isn't it?

I know Mum hates me being her caregiver inasmuch as she hates having to be cared for at all. That said I also know she sees it as my duty (Odd that given that she put her Dad in a home - her Mum died early on from cancer and she didn't caregive to her either and when Dad got sick guess what dummy did the 400 odd mile round trip each weekend so she could have a break - she never cooked a meal once in those 5 years I prepared a weeks meals and froze them and she even bitched about having to microwave two different meals because Dads had to be pureed at the end. Does she see I need a break does she heck as like. So I am at her beck and call from about 5 in the morning till about midnight then a couple of times through the night sometimes more. The trouble is I snatch sleep where I can and I can't remember the last time I had natural normal sleep.

Did I know that when I embarked on the journey. noooooooo totally oblivious yet I did know the strain I just stuck my head in the sand

Love to all from the OSTRICH!!!!!! xxx

If Mom has enough money for a caregiver, she has enough for an AL. This "we want Mom to stay in her home" is not always the best. We have to get out of this mind set. Also that we owe our parents. It puts a guilt trip on us. We should not have to give up our lives. We r entitled to them as much as they were. People are living longer and have to realize that their lives will change.

I'm still waiting to hear back from my sisters on what they think. It's not up to them to make the decision -- it will be up to Mom, of course -- but since Mom's memory has become less stable, knowing they are agreeable and will back me up if she questions it later, would be a significant help.

On the whole, we all try to do what we can to save Mom money. She's not wealthy, but she's in good shape financially; however, her income dropped substantially after Dad passed and she is having to draw from savings every month as it is in order to get by. While we anticipate she will be able to stay in her home and pass here, there is always the possibility that her condition (or mine) could become such that I won't be able to care for her at home and the rest of her savings could be needed for a nursing home.

But at the same time, my husband and I running into overdrafts at the bank nearly every month is untenable. It hadn't dawned on me until my husband brought it up that we were paying out full cost of some things for our own place plus also paying half the cost for the same things at Mom's home in addition to my food.

Jude, sometimes I get sad when I read. I don't know exactly who you are, but I know you are a professional woman who probably spent many years learning and working in the universities. I can tell that you are very accomplished and talented. Your mother is lucky to have your help.

I get the feeling that we need to elevate the status of the family caregiver. I see so much loss of self esteem in myself and others as we go through this. People on the outside tell us we should give more and throw in a "take care of yourself" like it covers everything. However, the things we do to take care of ourselves are called into question.

We know what is reasonable and what would be abusive. I know that a parent with a live-in free caregiver should be responsible for the caregiver's living expenses that are reasonable. If I were the care receiver I would know this intuitively without someone having to even tell me. If I were not doing it, I would feel that I was exploiting the giving nature of one of my children. And goodness, I would not want to see one of my children go into poverty or go without food so I could stay in my home.

Jude, I wish that we could go back and take good care of ourselves. And AZLife, I would say to let your mother buy that food for you. It may help her feel that she is contributing. Talk to her about your money problems. She may be glad to help with the food.

Jessie: I understand that. The OP can make other arrangements then.

I gave up work to care for Mum I went from $75k to less than $5k overnight and it hurts. Now I am sorry but you cannot live on fresh air and you should not be forced into making yourself financially unstable. Trust me I know - I found out too late.

I used to pay Mum for my board and keep, and it was a substantial sum, taken from the equity from the sale of my house. Now I have nothing well virtually nothing and Mum has to pay for my food and living expenses or I have to go back to work and she has to pay for carers.

Now we get into serious money. If I go back to work she pays an agency $30 an hour for a good reliable carer $20 if it is a sitter (they do not do toiletting). For constant care while i was at work that would work out at between $800 and $1200 a week PLUS I would still have to do the other 128.

So lets look at the family finances because we do live as a family her and I. I work and do 128 home care as well....income after tax, travel etc ? about $35k

She would pay out between $45k and $67k in carer costs

Its a no brainer and that is precisely why I say that in MY opinion and it is only my opinion that caregivers SHOULD be paid for their time if the funds allow. It's actually quite irresponsible not to be. I am not talking vast amounts here but certainly enough to live on in one form or another.

If I work I would burn out very very quickly at 40 hours a week and no sleep of any quality, if indeed I could work on that little sleep. I did try for about 8 months and started to pass out through pure fatigue of sleeplessness

I might be more incline to agree with liamalover if this was one of those situations where the caregiving child could not afford to live on their own - had nowhere else to go - and this was their only residence. Clearly in this situation the OP is giving up living full time with her husband in their own home to care for her mother. I think she is sacrificing enough - too much - as it is. She shouldn't be going broke for her trouble as well.