Recently my boyfriend and I took in his sister who has brain cancer. Unfortunately, at some point she is going to pass away due to her prognosis.
Her adult daughter supposedly took all of her Mom's finances, so she would be ineligible for nursing home care. Based on her short stints in the hospital and in rehab at these nursing facilities, her brother felt she would be better off in the care of family, since she was having such a bad time of it. I was the only one with room at my house and I was retired so I could handle her while my boyfriend works from home. Her son is in charge of her finances at this point.
What we didn't realize is that she would require round-the-clock care, needing assistance with just about everything: dressing, toileting, food, all of her medications and medical appts, etc. We are trying to manage as best we can, but it has been taxing. All the while, my home has to be open to a host of visitors — both medical and family members — and because she has limited mobility and can't stand for very long, she uses a walker and wheelchair.
I guess we just weren't prepared for it all and it's only been a month. And now we don't know what her eligibility is for food stamps or Medicaid. Her son and sister were handling the paperwork, but we've had no updates as to what status everything is at.
Are we wrong to ask for compensation for handling her day-to-day? How do we get paid to be her caregivers via Medicare or Medicaid?
Look into your SIL's eligibility for Medicaid in your state. If she qualifies, apply for the Caretaking stipend.
You email them and say you are all going to care for "Mom" (not yours) in monthly rotation. And since your month is up you TELL them you are going to bring Mom, her stuff, lock stock and barrel, to the next "volunteer", if not the person of your choice to be announced.
This story sounds too preposterous. You get all of the responsibility and no knowledge of assets, no access to money, or power of attorney. I don't believe this. Of course you won't 'cause you're not blood and, btw honey child it's all gone already. You volunteered for this?
You won't be StayingYoung for long, and you may windup being the one that sells and moves.
There's always one...tag you're it.
It sounds like you are in a similar situation as I am where family wants to keep mom at home. From experience, I know Mom does much better in her own home with family she knows. At a certain point in dementia, moving person to NH will increase dementia symptoms and, I believe, shorten their lifetime. But sometimes, there isn't a choice -- which again takes family discussions.
For us, the difficulty is Mom won't accept non-family in her house and her dementia is not bad enough that we can fib about who is family. If you can have non-family, your best might be to get health aides to come so that you can do what you want, even if it is take a nap! Where I am, health aides are available for a minimum of four hours for any visit.
I'm sorry that you let yourself get in this position. Yes, it is hard work and often becomes more of a burden than family members expect when they take on caring for a loved one at home.
I read in one of your responses that you had PT and OT coming to the home, but then will expect you to take the patient out of the home for future appointments.
Perhaps I'm not understanding exactly what the PT and OT are for, but it seems to me that this young woman is terminal, and probably doesn't have very long.
Is she expected to recover?
I don't think it will be worth the effort of taking her to PT and OT appointments.
Some medical providers just keep making more and more appointments so they can continue to get paid. But the services they offer may not really be needed.
You will have to determine if this is worthwhile for her.
It sounds like you already have hospice involved. Ask if they can provide respite care. And have some serious discussions with your boyfriend about the amount of work you are being expected to provide is more than you are comfortable with. If you feel you can continue to do this, but would like some compensation to make you feel valued, talk to the brother who is managing the finances, and if she can't afford to pay for your services, push the family to apply for medicaid on her behalf. Medicaid can help to pay for a care facility or for home care.
It may not be much, but it will help you to feel better about the time you are spending doing this, currently for no compensation.
My three siblings pretended to care about my financial situation, yet never even met to talk about what my circumstances would be like, losing the last three years of income and preparation for my "retirement". They did not take my father for even one day in three years. not one day. Only one sibling chose to visit.
My advice? If they do not agree to provide you with an immediate source of funds to take care of this sick woman, get out of it now. You will end up learning that your family is not special. They do not care about your well-being. If they did, this would have been the first thing they would have offered to discuss.
Three years later, I live in an apartment in a relatively poor neighborhood of this city. I have to work full-time at 65 and wait until I am 70 to retire. I am uncertain how I will pay the bills without using up a modest inheritance, already plundered for the last couple of years.
My siblings are good people, don't get me wrong. But they made their choices, and I did what I had to do as my father's son. Now, I do my best to remain a loving brother, and accept the difficult lessons that I had to learn. You are lucky to have a husband that will care for you and you for him. I will be alone, except for in my faith.
You say this to us in one of your responses:
"We are getting to the point of where we will need to have a hard conversation with these other family members so they can decide what will be done when she gets worse because I cannot and will not continue to care for her at a cost to my mental health."
There you go. You have answered your question. Now it is a matter of deciding when you must lower the boom. Thanks for being so much a participant in your question to us. It is such a great help, and it lets you know that you already KNOW what must be done. It is simply a matter of being determined enough or desperate enough to DO it.
Hope you will update us.
Does he live with you? If not, tell him that she needs to move to his house. He can give up his bedroom for his terminally ill sister. If he does live with you, he can take his sister to live with one of the other family members, who can give up their bedroom for their terminally ill sister. Then get the locks changed on your doors.
You can then still help with her care to a degree that fits with you schedule and needs, but you will no longer be the overworked point person.
If your boyfriend refuses to step up, man up, and take charge, call Adult Protective Services and tell them that you have a terminally ill woman living at your house receiving inadequate care because her family refuses to provide it, and that they need to place her somewhere safe. (Your boyfriend's entire family sound like a bunch of grifters.)
“I don’t feel the family was properly aware of the amount of care this was going to be. I was hoping for the best but …. My boyfriend is just delusional thinking that she was going to miraculously get better”. They weren’t ‘properly aware’ because they thought you were going to do it all. Look at it:
1) The problem with the NH was that ‘the level of care was inconsistent’. Your own M is coping with it, why not theirs? Do you really know what was ‘wrong’? Were you a cheaper option?
2) We (you?) “are doing most of the heavy lifting and they just help out here and there”.
3) “The daughter has mental health issues and has 2 small kids. ... She is expected to come over 2x per week to assist but can only do so after her boyfriend is home to care for the kids. And I worry about her stealing or snooping in my house if she is there unsupervised”. More reasons why YOU should do it all.
4) “Nobody comes on the weekends to relieve us”.
5) Money to daughter – “theft..or perhaps the mom felt sorry for the daughter and gave her the money OR the daughter bullied the mom out of it”. Whatever it was, it is probably going to stop M getting Medicaid.
6) “ I do feel dumped on because the son wasn’t keeping up with the medicaid paperwork being mailed to the house. No one was following up. The son sometimes doesn’t want to accompany his mom to the appts because he works”. Another part of why YOU should do it all.
You are not yet married to BF, but if you were, are you confident that he would put his wife and her needs first? If you aren’t sure about this, you might be better off treating this problem as a gift from heaven that allows you to walk away from all of them before you get more entangled.
I’m not too keen on counseling, but a session for YOU might be a good investment.
Is she able to reassign her POA to her brother and or you? This would be what I would do, ensuring that I had authority with the responsibility.
The applications would have to be handled if your state does family caregiver compensation. They have pretty tight time frames and they kick applications back if they are not met. I would bet that everybody decided she is now not their problem and dropped the ball.
What I know of DPOA and DMCPOA is that they must meet state law to be valid. AZ attorney General website has these forms, perhaps your states AG does to. If they do, you can download them and get a mobile notary to come to her and then you have authority to deal with getting her all the help she qualifies for.
As far as the daughter, what a grifter, essentially stealing money from anyone in the family she can. I would be tempted to file a police report and let her deal with the consequences of her shady behavior towards the ill and old members of the family.
Your BFs sister is eligible for lots of assistance because of her diagnosis, I pray that you can find a way to get her the help she deserves.
God bless you for giving her a safe home at the end of her life. I pray you get help to help her.
Have the POA apply for Medicaid. Let them turn her down and cause a penalty. When the penalty period is over, she then may qualify.
If she has money to pay you, she has money for Longterm care. My Mom had 20k which got her in the door for 2 months, which got me time to apply for Medicaid and she received it the 3rd month. If she has money, like 5k, may be good to hire an Elder Lawyer. He maybe able to get her into LTC with Medicaid paying.
You need to be paid for your caregiving. check what the average cost is per hour in your area. The payment comes from her assets.
there may be programs in your area that my pay for some hours.(You do not mention her age but if she is a senior your local senior Service Center may help.
If she is a Veteran the VA may help as well.
If your boyfriends sister is no longer seeking treatment she would qualify for Hospice.
With Hospice you would have a Nurse at least 1 time a week.
A CNA at least 2 times a week for a bath or shower and to order personal supplies.
The Nurse would order medical supplies, medications and any equipment that you might need.
All of this is covered by Medicare or Medicaid.
And you could request Respite if you need a break.
And you could also request a Volunteer that could come sit with her while you run errands or just take a break.
You and your boyfriend need to set boundaries,. At what point can you not care for her. What will you do then?
If it is not safe for HER to remain in your home with you caring for her
or
If it is not safe for YOU for her to remain in your home.
Safety is not just physical safety but mental, emotional as well.
One-on-one in home care is much more expensive to provide than care in a facility where staff and equipment can be shared. As a result, you won’t “get paid to be her caregivers via medicare or medicaid” at home, except for short hours and lowest pay. It is very rarely a workable option.
If “her adult daughter supposedly took all of her mom's finances” it would not make M either eligible or not eligible for nursing home care. M needs the money back to pay for her care.
“Her brother felt she would be better off in the care of family”. Is this brother your boyfriend, or a separate family member. Why was “she was having such a bad time of it” in the NH? Sometimes people provide ‘service on demand’ at home, while in a NH there is a timetable for care and sometimes there is a wait. You are now providing “round the clock care needing assistance with just about everything”. Is that why you felt that the NH was ‘such a bad time’? What was really wrong with it?
To be honest, you need to get out of this as quickly as you can. The fact that there was no proper handover of the paperwork, no “updates as to what status everything is at”, makes it sound like this got dumped on you deliberately so that the others could head for the hills. They must have known how much care was needed. They just didn't tell you.
Wishing you good luck.