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I recently moved in with my 83yo father with dementia (and my 2 young children). I am not well versed enough to say what stage he is at. He can follow a conversation if you speak slowly and make simple decisions, but he had his license taken away and was not eating or taking his meds properly, leaving perishable food out to spoil, not cleaning, etc., so it was clear he should not be living alone. The things I do to help are: drive him places, help him write out checks (he has macular degeneration and likes me to do everything but sign), clean the house, cook, laundry, make dr appointments, and all the other little things that come along with day to day life.

He has not been declared incompetent at this point, but based on his declining mental state, that will probably happen at some point. We may not have to go down that road, as he made me a co trustee awhile ago, but I want to make sure I don't do anything to cause suspicion in either of my siblings, who are beneficiaries but not cotrustees. I have a good relationship with my brother, but my sister and I have never been close, so I worry about her becoming critical as time goes on.

I realize the importance of transparency if/when I become the only trustee. There is a clause in the trust stating the trustee should pay themselves whatever the going rate is, but it doesn't say anything about paying for the type of caregiving which precedes things that will need an actual nurse. Pretty much all my friends and my husband are telling me I should be getting paid for my work, but I have mixed feelings. I am doing this out of love, so I feel like I should not want any money. We live in the house rent free (by his enthusiastic consent), so I am wondering if that should be taken into account.

I would like some input on what might be a customary, modest amount I might suggest to to them or if it might be better to just not pay myself at all.

As an aside, I heard it might be possible to get certified as a home health worker for Medicare, but I haven't looked into that yet, so any knowledge of whether that is true or how to go about it would be welcome as well.

Thaks!

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I'm kind of in the same boat, but there are differences. My mother has already been declared incompetent, so as far as I know, we can't make any title changes to the house. She had a will and living trust put in place long before being declared as such however.

As a live-in caregiver, I decided not to be paid at this time for my "services" which date back several years now, reason being that a). it would deplete my mother's finances pretty quick, b). I would have to sell mother's stocks in order to do that (and they have been earning good money), and c). Uncle Sam will rob you of about 1/3 of whatever you pay yourself as I recall, more or less...

No... What I did with my siblings instead is had them all sign notarized agreements stating that THE LEAST I will get in the end will be the house (as in they will sell me their shares of the house for $1), plus pay me a calculated additional % amount from siblings in the end as a gift after they receive their shares (if anything is left in the end), also as payment for my services.

It's a huge gamble on my part, and being un-paid for so long, just having to depend on my own small business funds, has been very difficult, but there simply are not enough funds to really pay myself with at present. Whether or not it works out in the end remains to be seen, but siblings have all signed notarized agreements, and we will have to wait and see what happens.

Now, after Mom passes, yes, I DO plan to pay myself for my trustee duties as is allowed in the trust, as there will be A LOT of my time required in order to sell Mom's possessions and wrap up the trust in the end. Any compensation to me for the untold tens of thousands of hours of caregiving though, we'll see what happens. Whatever I happen to get from that, it will NEVER be enough for my time and effort, and I just have to accept that, but at least there will be something left of her estate in the end to work with (minus the house which Medicaid can't touch though they may put a lien on it someday if it came to that), rather than having ALL of her finances depleted for paying both me and POSSIBLY her NH care in the end prior to Medicaid kicking in, plus a greater chance of a huge lien being placed on the house as well. I'm really trying to avoid that.
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Wow... yeah, I am totally in denial about ever possibly needing Medicaid. Unless our whole economy collapses, that probably won't be an issue as he has a good pension and amazing medical insurance with low out of pocket maximums per year. But I guess one should always be prepared. Thanks for such a thoughtful answer!
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neomia, you should definitely charge your father for his care. You can balance that against room and board for your children (if he is buying the food). There are at least 4 good reasons for this:
1) It makes the burden somewhat "fairer" when there are siblings. You are spending the time and effort and you are getting paid for it. When it comes time to share an inheritance (if there is anything left) then all getting the same amount is not an insult to the one who did the work. Work was paid for as it was performed.
2) Valuing your time is important. Sometimes caregiving seems totally thankless. Getting paid for it may be the only evidence that it is valuable! Of course you are doing this for love. Anyone doing this for a reason other than love is out of their mind. But your sister and brother love Dad, too, right? You are not getting paid for the love -- they are not getting paid for their love. You are getting paid for the work.
3. Getting paid puts the service on a business-like basis. This helps when you need to hire someone or take Dad somewhere for respite. As a worker, you deserve some time off, and the family has already been accustomed to pay for services.
4. You have additional expenses to go see your husband and/or for him to come and visit.

So, yes, definitely set up a care agreement. I suggest that you do this with a lawyer specializing in Elder Law, who will know the proper way to set things up to satisfy Medicaid, if there is ever need to apply for that. Also discuss with the lawyer how your moving in with him effects the home's exception from Medicaid's Recovery program if you might need to go that route. A lawyer can help you set things up to smooth the way later. Maybe Dad will never need to apply for Medicaid, but you might as well be prepared. And the lawyer might be knowledgeable about rates.
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Wow caregiver14, that sounds heartbreaking. Have you ever brought up the subject of getting paid? In my case, my family doesn't really *need* the money, although we might if my husband quits is job to come be with us. I don't really want him to do that, but our family is having a hard time being apart, and we can't move my dad out of his house unless he gets declared incompetent. Not to mention I know he will become hostile if we do, so that doesn't seem like a very desirable path. My husband just seems stuck on the idea of me valuing my time. I guess I will start asking around to find out who much people in this sort of position make.
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Also, there is no recommendation from an MD, but one thing we all agreed on is that he should not be living alone.
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Sorry I realized I was totally unclear! Should not have written this so late at night! The clause in the trust is only to pay for *trustee* duties. There is nothing about home care duties in in the trust. If there was, I wouldn't have an issue lol. I have not given up a job and my husband makes decent money. That is why I am conflicted about all this.
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If it is written in the trust that you be paid the going rate for caregiver services then don't feel too bad about taking that money. You're earning it. And if your sister gives you a problem you can give her a copy of the trust.

Deciding on what dad should be paying you is another story. If you were not his daughter you would be considered a live-in and live-in caregivers make different wages than by the hour caregivers. First you'll want to find out what a live-in makes in your area. Keep in mind that live-in's have scheduled days off which I'm sure you don't have.

Figure out an amount and then discuss it with your brother. I don't know if you've had to give up a job to care for your dad or if you had to move but things like this should be taken into consideration when coming up with a salary.

Also, a WARNING: Try not to become dependent upon this salary, whatever amount you figure out is fair because that money is solely dependent upon your dad being able to stay at home. One fall, one bout of pneumonia and the situation may totally change and your dad may need a NH = no more salary.

I'm sure you'll do the right thing and I'm glad you have your brother's support.
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If his MD has recommended help, with specifics in writing, then the Trust should contract for care at the prevailing wage in your area. You could have a lawyer draw up the contract and have Dad sign it in front of him.
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