I had been taking care of both of my parents for over 2 years. Since my father passed away last year, I have been taking care of my mom. She lives 30 to 1 1/2 hour away from me and for a long time, I have been going to her form 3 to 5 times a week. My mother has dementia and she has many health issues. She used to smoke 1 1/2 packs to 2 packs a day and now with the help of 3 to four aides, she smoke 1 to 3 cigarettes a day. She was in hospital many times in one year! Since she fractured her hip a month after my dad passed away, she cannot walk around and needed to be reminded to use her walker. To make long story short, I am taking in a way taking care of her 24/7. including taking care of her bills. My husband has been unemployed for 2 years and I have some health issues and I am in a sense working full time taking care of mom. I am not getting paid to do this and my family and I are financially strapped! I don't know what to do about this! My sister lives out of country and the original agreement was that we get equal share when mom pass away. I don't think its fair. Also I need to make some money in order to take care of mom! I told my sister that if things heading this way, my family and I can lose our home. She did not say anything nor did say anything to support me. I am so lost and scared and don't know what to do anymore. Any suggestions?
Ikle...There’s certainly nothing wrong w/being paid for what you’re doing & if you can have that conversation w/your LO then do so. Also, I don’t think it’s anyone else’s business but if sibs aren’t informed about it at the start it could be a problem later.
Just one other thing...as I’ve stated in a previous post...the whole concept of “you chose to do this so...” is just soooooo off base. Yes, I think I always knew it’d be me, the youngest, that’d take care of our mother but No, I had absolutely NO idea what’d it’d really be like or turn into. And, from what I’ve read on this site, it’s only going to get worse.
So no, this was not a choice. Not even close. I believe that there are a lot of us who simply can’t turn our backs on our LO’s; we just have that sort of humanity built into us. “Built into us”. So it definitely is not a choice. We do it as naturally as breathing.
But hey, this is what’s so great about this forum. The exchange of thoughts, ideas, suggestions. And I do respect everyone’s right to express them. I sure have learned a lot here & have received more support here than I have in my “real life”! 😻 So thanks, y’all.
Ilke...good luck. I hope you can figure out a way to be compensated for all you do.
charge, consulting a specialist would be best bet. I would think twice about being
primary care giver, think about live in help if parent can afford this. That way you can maintain your career. Most reimbursement is done on a pretty low hourly or very
low per diem rate.
Make sure you are being reimbursed at an agreed upon rate. If it's too low
consider other options. Many facilities are well run and if you are looking out for
your parent, they will be given timely reasonable care. Assets should be spent
on parent for their reasonable care and entertainment (ie not for luxury cruises
if it means you'll have to be shouldering their care costs down the line)
Whatever then is left over can be the inheritance. Just remember that many seniors
outlive their money/assets so careful planning is a must. Some siblings appear to
selfishly want one sibling to do all the care giving gratis so as to preserve their own
inheritance. Better to come to an agreement now and receive compensation up
front for your efforts and out of pocket expenses. And verbal agreements are
basically useless. Even written agreements can be contested.
Get reimbursed for your out of pocket costs for care (ie stuff you've bought specifically
for parents care or housing expenses) and pay yourself for care at per diem rates if
you can afford to accept such low reimbursement rates. Personally, if your parent
can afford live in care or quality AL, that would be better route imho. As you'll have
your career to help you once your LO passes. Those of us who ended up doing stints of
full time care have spotty employment records, poor health and that's a tougher
hole to get out of.
The courts won't care about your husband's job or your personal problems unless there is a legal will and it seems as though your sister doesn't care either.Call an elder care attorney and pray.
Taking care of the bills and such is a role all family members take on themselves regardless of their own circumstances.
As for any written agreements, once signed it becomes a binding contract because you both agreed to it before signing so don't try to get more than what was agreed to in that contract. I know you may be financially strapped, who's not? Don't try to coerce your sister to change anything that was not covered in any contracts you may have signed. If the contract was said to split things equally, then that's what you do and don't try to don't try to coerce your sister to change anything that was not covered in any contracts you may have signed. If the contract was said to split things equally, then that's what you do and don't try to get someone to give up their share of a rightful inheritance they're rightfully entitled to. Just be thankful and appreciate what you get that's covered in the agreement as allowed by your mom if she allowed you to have it. Make the best of what you have and don't try to talk people out of what you're not entitled to, just do the best you can with what your mom let you have.
Remember:
There are people out there who are far worse off than you who would be more than thankful to have what you have, so appreciate what's already there instead of complaining about what you don't have. I know it's easier said than done but this is a lesson to be learned. Don't look so much at what you don't have though you may have needs but look more at what really matters. Yes, money can buy what you need, a car can transport you and a home will shelter you, but it's the relationships that really matter. Relationships are more important but yes, you also have other physical needs.
Again, appreciate what you are allowed to have from whatever contracts or wills may exist, don't try to get more than you're entitled to if you already signed a contract. If you need more money for starters, go out and get a better job with better pay and another smart move would be to get better education by going to school. You can usually file a FAFSA and get government grants for college that will open doors to better jobs with better pay
So when October came I quit my job and took her to Florida to her apartment and we've been doing the back and forth since then. Winter in Florida and Spring and Summer in NY. She got to fly back and forth with my brother, who lives in Florida, or my sister,my son etc. I see a big decline and can no longer do this. My brother was hesitant but now has witnessed her lack of cognitive abilities. Other health issues that make it difficult for her to travel. I was compensated for taking care of her and I used Adult Day Care services in Florida, 4 hrs per day. In NY it was too far to go more than 2 times a week. She only wanted to stay 4 hrs so it wasn't worth the trip. I went shopping while she was in there. So I wasn't really getting much of a break. Once in awhile I went to a movie.
When we all agreed to me taking this on I was supposed to get the Condo in Florida when she passed away. But now we have to sell it and keep the money in her account to be used if needed when her annuity runs out. My siblings agree I should get more than them but how much, not been determined. 5 yrs Of no life driving her to and from Doctors' appointments, day care. Taking care of all of her needs, hair dying, manicures, pedicures, nosebleeds, hemorrhoids, constipation problems. Brother lives 45 minutes away and gave me a break..on a few weekends when I am here 6 months in Florida. After doing this, I realized you can only do what you are able to comfortably handle. I can't handle the non- stop care that she requires now. I am done. Hopefully, when I get back to NY....I can find a part time job and get some healthcare insurance....which is also something I have been doing without. I give thanks to God every day for keeping me healthy. You deserve to be compensated for your time. Hope everything goes well for you in the future.
My suggestion is that you don't look to get more inheritance from mom. How do you determine what your sister gets and what you get?? That's very subjective, not to mention it may be important to your mother not to treat her children differently in her will.
Getting paid fairly for income you're giving up by caring for Mom is much easier to quantify. Approach your sister. Explain that you cannot continue to sacrifice your own financial wellbeing to help Mom any longer and that Mom's funds will have to be used to pay for someone else to do the care or for you to do it.
You must keep very careful records of your time and expenses. A fair agreement between you, your sister, and your mom is the goal – not "I've sacrificed so much and want to be rewarded." Again, that's extremely subjective. Your sister may have a very different view of things and your mom might, too.
If your sister is opposed, then tell her the only option is a nursing home which will costs thousands more than you, as you need to get a job to pay the bills. I'm sure she would agree the cheaper option, and you need to live and pay your bills.
Yes, I agree that would be too easy for Medicaid to provide an agreement that is in compliance with their rules. It would keep too many families out of trouble in terms of owing them money down the line.
My understanding as to what is to be documented could many times be covered in the agreement. And most days are relatively easy to cover, it is daily cooking, laundry, shopping, companion.... Then there are days that there are doctor appointments, hair appointments, hospital stays that often include caregiver sometimes 24 hours. The list goes on and on. Home maintenance, raking, shoveling snow, replacing light bulbs, sanitizing the jacuzzi tub (yes, we have one of those). But most of the time is spent as a companion which is what siblings think is not work, a walk in the park, etc, when it actually is the most challenging. In my case an agency caregiver could not provide my mom the comfort and care that I do. They do not know her, I've known her all my life. And as Joannes stated, an outside caregiver would not know mom's life history, which is often what gets stuck in the brain somewhere and repeated over and over and over and over and over.....
Joannes-
I agree that many siblings are not emotionally suited to care for parents with dementia. That is definitely the case in my family, neither would be able to do what I have been doing for more than two years now, and that is ok, I understand that. But, they just have to let me do my job instead of the ridicule, calling in false reports to APS and lying to other relatives and even my own children to obtain their sympathy in an effort to undermine me. I have heard statements like I'm not willing to impoverish my mother to benefit you. I think this is all part of their denial of the extent of the disease. What about impoverishing me that will only benefit them in the terms of financial gain upon mom's passing. Yes there are significant assets to pay for care.
Goes on vacations and tells everyone all the fun things he is doing. Jealous, no, just can't believe he comes to visit mom once a year for a few years only if a business trip pays for it. From NYC, when my mom had cancer, to taking care of her in NJ, my girlfriend painting the house in Jersey and then it sold in one day after an estate sale and now mom is down the street at a less expensive assisted living facility so that her money can last. My mom has dementia and is 88. Sure, I can either place her at a home and care for $$$ or care for her from an apartment in our building. I have to retire in one year due to mandated retirement with government. I too feel that if I take care of mom to be paid a little so I can pay some bills. Love you mom and I have enjoyed every day with you, what a blessing. I know I might be angry, but I can't believe how selfish my brother could be.
1. Re: siblings who do it all and others who 'run away from doing anything'....my comment is to simply have an awareness that not everyone has the ability to be a caregiver and do it well. So be kind if possible to siblings where any of us know that to be true. Not helping because of other 'reasons' is another issue. There ARE many ways to help! My brother is dead, so I am alone in this, but when he was alive, he told me clearly that he could take in Dad, but never Mom. We never got along with Mom easily...neither of us. But, he said he would help with money or paying bills or fighting with agencies etc....he also lived out of town anyhow. I never had an issue with him. So siblings who don't provide actual care...CAN be asked to help in other ways.
2. Being paid for caregiving....if the parents have funds, NONE of us should feel guilty over asking for payments. YOU are providing much better care than a hired caregiver, simply because you know your parents, and their likes, dislikes, needs etc. You have a better vested interest in observing carefully and keeping app'ts and communicating with all involved. If you were not there....a caregiver would have to be paid for too. Also, I've been told that now....Medicaid will pay for caregivers in the home, including family members. That is a new law this year. So for those of you parents on Medicaid, ask about it.
3. In general, regarding getting reimbursed for care....if there is an attorney, ask that person. We have an eldercare attorney and I was told without even asking, that if I wanted to be paid I could be from their trust. I was told that because I travel to help them, I was perfectly entitled to have their money pay for all of my gas and some of my car maintenance and that if I bought either of them stuff for the house, I should pay myself back from their money. I was actually shocked at what I could pay myself back for, as my parents have been very tight with their money, and always expected me to 'show up and take care of it' just because I was their daughter. It never occurred to them, even before dementia that spending $100 for gas to visit them could be hard on my budget....and my Mom has always been very good at needing things, but not having cash with her and then forgetting to pay me back....so I just thought I was 'stuck' spending our limited monies for the rest of their lives. I thought POA and trustee was just to take care of their 'bills'....not any other expenses. I still don't 'milk' them for all I could, and for example I split the gas....when I go....I buy one way and use their card for the return trip because I honestly feel that as their daughter, I WOULD sometimes just be 'visiting'. But now I am having to make the trip twice a month, and occasionally 3 times a month....and it is getting harder to do the split or have free money from our accounts, due to the economy. I run my own business too, and due to helping them so much, this past year, my business income was down 50%, because I don't have time to spend on customer's questions/emails etc, and therefore, lose business because the younger generation wants everything NOW, NOW NOW....and will go somewhere else if they don't get the info they want immediately. When I have to travel so much, I cannot respond immediately a lot of the time. So for those who don't have an attorney involved....just sharing what our attorney said is reasonable and just to use parents money for. You can probably verify what is usual or customary in your own state. And, please, do NOT feel guilty for thinking you need some help or payback!! Ask your siblings for help in ways they COULD help too. I didn't have to deal with the inheritance issue, since my brother is no longer with us, but with the way the money is getting used up, there won't be much left as an inheritance anyhow. Now that Dad is on Medicaid to pay his facility fee, they will get paid back out of the house, and whether anything is left, depends on how long Mom stays in the house before she needs to be placed, and what they house sells for in the end....so I just figure it's better to count on nothing and be surprised if there is something left. But for that very reason, I do NOT feel guilty if I use their checking card for proper and legit pay back. There is much time spent just on finances, bill paying, paperwork submission to agencies, coordinating and making doctors visits etc....even though I am not a day to day caregiver....so keep that in mind too. It sound like many of you are doing double duty. And finally, you have to care for yourself first....whatever that entails for you and your own situation....because if you are NOT in the picture, who IS going to do what you do?? Who will be there, day to day, for your parents or parent?? If I get sick or die or cannot do what I do, my parents will have no one except the case worker at the law office....and when I need a break, my Mom is still with it enough that I can just nicely point that out to her! For a while, she was phoning me up to 20 times a day for every single little thing. Finally I just told her that I could NOT do that way, and there was too much stress on me. And I said to her directly that I didn't want to be mean....but she could easily live another 10 years....and I still have a husband here with probably Parkinson's too, and Dad is still alive....and so I just simply cannot burn myself out, cause these people will have no one. Well hubby will have the two daughters if I am not here or cannot deal with life when he needs help, but I pretty much think he deserves me to have the best I can give him, so I have to 'save' myself just in case! Anyhow...enough....but those are my thoughts on all this.
He did give me a pay schedule for our state so that I would have an idea as to what the going rates were. He "suggested" that I use that as my guideline.
I now have a long list of things to do before we can get her qualified for Medicaid. I am surrounded by paperwork and receipts that need to be organized.
I was also need to figure out what I need as far as "documentation" goes. I was told to document what I was doing for my mom to receive that care. I'm unclear as to whether or not that is a daily log or what. So much is too ambiguous for me. I like things defined. I like to know what is ahead.
I agree that the (still dizzying) price does sound reasonable. (Aside - does everyone get the same gob-smacking shock the very first time they hear in cash terms how much care costs? I know I just sat there in stunned silence thinking you could have a room at the Savoy Hotel for that!) Actually "reasonable" is not a word that has any place in the same sentence as "care." I suppose I mean normal. And as a nurse you'll also know what dividend finds its way into the nurses' salaries, hem-hem.
Your mother's being a very private person sounds like an important angle. Given that, and her growing need for specialist care, plus the fact that the more able you are when you walk into a care home, the better your chances of settling in to a decent quality of life; given all those I hope it'll be possible to bring Mel back into line with all the rest of you, and get him to see past what he probably still thinks of as the exploitation.
He's not watching too many TV documentaries about institutionalised abuse, is he? It just occurs to me that that might also have freaked him out, especially if he were agin care homes to start with.
I don't understand the Medicaid processes, forgive me. Is the problem that Mel's "wages," if not recognised as such, would therefore not be insured so would have to come straight from your mother's capital? Whereas in Memory Care, once her savings had whooshed down to a given level, all remaining fees would be covered?
I just really hope it will all come right. You're very generous, in such trying circumstances, to recognise that Mel and his wife are doing their best; and that makes me feel optimistic for you. Please update, best of luck x