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?
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.)
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.
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.
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.
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.
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.
Wishing you good luck.
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.
“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.