Disabled Mom

[kbrgmom]

Indiana - Hello, I am not sure where/how to start this, but I want to thank you in advance for any insight you can provide. My 73 Mom has been disabled since I was 10 years old and, after she divorced my Father, moved back to her hometown where she has lived semi-independently for all but the past two years. Over the years, she has wanted to remain there while my Grandma and Uncle passed away from illness. This Uncle had been in charge of her financial matters. Two years ago, my Mom was put in an "assisted living" facility to recover from a surgery. I objected to this move as a permanent home for her at the time, and my objections were rejected from my family. When my Uncle passed away, he passed over the care of my Mom to another Uncle who had moved back to the town. Both Grandma and Uncle were said to have left a lot of money for my Mom's care (they were quite wealthy). Now that they have passed, I would like, and my Mom would like, to move closer to me. Ideally, not in a nursing home. I would either retrofit my house to make it handicapped accessible or we would buy a more suitable house together. My Uncle that is in charge of her is only willing to disclose my Mom's savings from her years of disability and a small retirement plan making it look like she only has enough funds to remain not on Medicaid in assisted living for three years when prior to this, in May, she was told by my first Uncle that she had at least enough funds to live there for 11 years. I think the money is in a trust or it is being handled just based on trust with no formal contract (Grandma left money to first uncle, first uncle left money to second uncle) and I do believe that the intention was to keep this knowledge secret from me. My parent's had a messy divorce and my family has never liked me because I am a city girl and my Dad's daughter. Sounds bizarre, but that is the truth. I don't know if there is any way that I would be entitled to know what the terms of the trust are with regards to my Mom, and I am guessing not because she never received a copy of a trust if there is one. Any suggestions on how I could make this all happen?

Thank you very much for your help.

 

[justalayman]

if your mother is a beneficiary of the trust, either she was required to be given a copy of the trust or would have a legal right to it. You have no right to it unless you are a beneficiary, which I presume you aren't.


You might also research grandma's and uncle's probate of their estate when they passed. You would be able to see where the money from their estates went. If it went into a trust, that would be stated as such. If they did the transfers prior to their death, there may be no mention of it. You will have to research it and see where it takes you.

 

[kbrgmom]

Thank you for your information. Say the money was passed down from family member to family member to take care of my Mom without putting her name directly in the trust then there would be no way for us to legally find out where she stands with the trust - am I correct? thanks again.

 

[ecmst12]

You would need to be appointed guardian, and if there is a trust, it would depend on the terms of the trust. It also sounds like you have no realistic idea about the level of care/assistance that your mom requires, so you need to meet with her caregivers to get this information. How old are you? If you want to have guardianship taken away from another family member and given to you, you are going to need a lawyer for that.

 

[kbrgmom]

Thank you. I have considered that question from all angles. I am 41 and am capable of caring for her. Truth is, a house seemed ideal, but if it becomes clear that she needs care above and beyond what I am capable of giving then we could revisit the nursing home angle. I am concerned that the home she is at keeps her in a wheel chair because she is a fall risk. This is understandable, but no one has time to walk her regularly, and so she is getting weaker by the day. I just want her to be close to me and her grandchildren at this point in her life and want to make sure that I have tried everything in my power to make that happen. I want to be appraised of her medication too, I believe that she is over medicated. I work in a hospital, at a physician's office, and would have access to good care for her. Thank you.

 

[ecmst12]

So one of her brothers is her current guardian? Do you think he would fight you if you were to attempt to take over as guardian?

 

[kbrgmom]

Yes, I do think that he might fight me. I am not sure that he has ever been appointed guardian but he may be a trustee(???). The point is, he has been very vague about it all and expresses his opinion that it is "nuts" for me to want to bring her here even though he himself is planning to move away from where she lives in the near future (then she would be there with no family at all). I am made to feel like I am being greedy by suggesting that she live near me. I hate to say it, but it really does boil down to my parent's divorce and the fact that I live and work near a large city.

 

[curb1]

What are the conversations like between your mother and her brother? Sounds like mother is going to be the one that has to push the buttons.

 

[kbrgmom]

Well, that is a big part of the problem. My Mom has always been afraid to express her opinions on any of this because she is afraid she will hurt their feelings. Also, from day one, she lent a large sum of money to Uncle #1, which in part helped him establish a million dollar business (literally) out of the original family business started by my Grandpa, and she never requested repayment on that loan. My Mom has not had any idea for at least the past 30 years how much money she has had except for the fact that whoever has been her caretaker has threatened her that "she is going to run out of money if she doesn't stop spending $9 a week on stamps" (seriously). Now, I have had to be careful, because I do feel she is somewhat compromised (she has not been able to do any rudimentary math for some time) and I don't want to coach or force her into moving near me. I do believe that she genuinely does want to be near me and my children. Thank you.

 

[OHRoadwarrior]

If you want mom to be with you, the money should not be an issue. By your own admission, you are not supposed to have anything to do with it, if it exists. What concerns you should not be a home remodel or new house at moms expense, it should be mom. At 73, her investing in your home is not a good investment, it profits only you. If you can take mom, without the "extra" money, do so. This is about your mom, not her money. I paid the expenses for my fathers last 1.5 years of life, while he lived with us. All his money went to supporting his gf and her kids at his home in another country.

 

[ecmst12]

If the current guardian is going to fight you, then it's going to cost you money to go to court and convince a judge that you are better suited to take care of mom than the current guardian. Do you have money for that? You should not expect your mother's money (that is needed for her care) to pay for something like this. She is not being harmed by the current arrangement, you would just rather have her closer to you.

Also, she's 73 and in poor health. You should EXPECT her to get weaker as time goes on, even with excellent care. She's not ever going to get stronger or healthier at this point in her life. This is the reality that you need to accept. You're not going to move her in with you and witness a miraculous recovery or have many years added on to her life. She will appreciate the extra time you get to spend with her, and it may make her happier, but it won't make her healthier.

 

[commentator]

If you want to move mom and take care of her in her senior years, I agree wholely. You need to move her out of the probably privately paid for assisted living she is in now. However, count the cost. It doesn't sound to me like you've really spent a whole lot of time with mom in the last few years. Your relationship with her family sounds more than a little strained. You are creating a little fictionalized happy world where you will care for her, work , raise your children, and things will be bop along as you've planned.

She's over medicated, okay, so we control and adjust her medications and she's not going to get worse, she's going to get lots better. In the meantime, you'll have to set up her physicians, get her on a regular treatment schedule, deal with any health crisis that arises, and allow for the fact that maybe she's NOT just over medicated, but is really a lot worse off than you realize. Caring for an elderly person always means not anticipating the best will happen, but always planning for the worst. Unlike a child, an elderly person is not going to become gradually more independent, better able to take care of themselves, but the opposite.

Maybe she's not going to be able to get up off that wheel chair if she's sat in it for a long time. Sounds more like she needs physical therapy, not just to be walked occasionally like a pet. She's doubtless incontinent (or perhaps has accidents) now that she's been wheelchair fast for any period of time. Who's going to deal with that? And how about bathing? It's no little trick to bathe a person who's unable to motivate well. What if you hurt your back? Don't have time? She's not willing to be bathed at exactly the time you as a busy wife and mother have available to do it for her? The assisted living has provided a considerable amount of social stimulation for this person, is sitting at your house waiting for everyone to come home going to be enough of that for her? Is she going to need someone with her all the time? Do you have that person lined up?

And what if you get her there, decide it's just too much, and you want to find a nursing home placement for her? What if there's not one available right away? Many of them have long extensive waiting lists. And those that do accept Medicaid, not to mention the ones that don't, will suck away her assets like dew in the sunshine. In order to qualify for Medicaid, a person must have totally depleted all their personal assets except those in carefully set up trusts.

Are you really ready to jump in and hire attorneys and fight what sounds like it has been a pretty secure and well organized method of paying for your mother's lifelong care, and go into a lengthy battle with the rest of her family, simply because you think it would be a sweet idea to keep her at your house?

I think you are sounding like one of those well intentioned relatives from afar who is the bane of the real caregiver's life. You swoop in, convince the person you're going to take them away from everything, including their old age and infirmities, and take care of them, only to run away again after having totally disrupted and upset everything. Right now your mother has a secure placement where she has been for a long time. You don't have actual issues with neglect and mistreatment. You've just got some sunny ideas about how it will all work out if she comes to be with you.

Do the research about the trust. Meantime, visit your mother a lot. During all times of the day and evening. Think long and hard about how you are going to put your whole life on hold and carry through with a monumental caregiving job for a parent you haven't really ever been close to in your life.

Talk to your uncle. If you are really who you say, a devoted daughter who is going to take the caregiving responsibilities off of them, they should welcome your involvement. If you are some fly by night relative from afar, even if you're her daughter, regardless if you are just somebody who thinks there's a big pot of money in there somewhere, and that it would be "cheaper to keep her" as the old saying goes, they're not going to work with you, and you'll have a long lawsuit on your hands. By the time it's settled, your mother may have already passed on, or be in much worse condition.

 

[OHRoadwarrior]

commentator is 100% correct. When dad was here, it involved almost constant care, keeping up on his needs and comforts. He needed assistance going to the bathroom etc... He needed assistance everywhere. When he was in the hospital, it required constant daily trips 60 miles each way.

 

[kbrgmom]

Thank you for all of your posts even though at times the responses were bitter pills for me to swallow. I think that this has been helpful because a lot of your arguments may be obstacles that I may face if I pursue this (yes, I do have funds to secure an attorney). I have spent all of my annual vacation time visiting my Mom and have made frequent weekend visits to see her too. I do talk to her daily. She has been disabled since I was very young and I have a medical background. I believe that I am fully aware of her needs. I do not have a rosy idea of what her living with me would be like - I just believe that it is the right thing to do to maximize our time together. I actually intended to extend her money not exhaust it. I do own a house already and have been in touch with local resources exploring ways to make the house handicapped accessible. I bought this house with my Mom in mind – it is open concept and a ranch. If my house cannot be suitably fitted, then I am willing to move and buy a house *together* with my Mom. In other families perhaps reasonable requests may be met with reasonable responses but that is not the case in my family. They seem to resent that I have not been able to move down to my Mom’s rural farm community despite the fact that I tried for many years to find suitable employment there and now despite the fact that both of my kids are in high school.

 

[commentator]

Thank you for continuing to listen with an open mind. As a long term caregiver and social worker, I hear more and more things that cause me to feel this is a long battle you may not really need to launch into. I ask you to think further about it, and continue your frequent visits, as you say, whenever you can get off work to come and see her. How much more off time do you think you'd have even if she lived with you?

Several more things to consider: Your mother has lived in this small rural community for most of her life. If she comes to your town, she would be out of it, isolated from people she's always known, probably won't be able to get out and make new friends. If she has a church, a social group, these things will be important to her and hard to replace in a new environment. Even though you feel that you need more time with her, would love to be her full time caregiver, the key here is that I am also hearing that you are a full time employee somewhere, and the full time mother of more than one child who is now teenage. I don't know if you're married or in a relationship, but if so, you must have the TOTAL buy in of this other person. Caregiving has wrecked a many a marriage. Being an employee, being the mother of busy teenagers and being in a relationship with someone all take serious time in your life. Care for your mother is going to be another huge issue.

Also one other thing that I have seen over and over, as people grow older, they really do go back to the first relationships they had in their lives. Many times, as memories fade, they feel much closer to their brothers and sisters than anyone else in their lives. If you launch a legal battle to get custody and guardianship of your mother it will cause hard feelings. It will take her away from and isolate her from the people who right now are very much her closest relatives. I know that you feel that you and your children could fill this void totally, but what will you do if her memory fades to the point where she no longer remembers who you or your children are?

Also the issue with her money. I keep hearing that you feel there is a considerable sum of money put aside somewhere for her care. That she loaned her brothers large amounts of money to start their businesses at some time. I also hear that it is pretty clear she's not been in charge of her own issues for a long time. That job of administering her money is not a fun one. If the uncle was totally convinced you were the best person to care to care for her and that your taking her would be for the best, it's hard to see why he's hanging on to the job so stubbornly. If you feel he's financially abusing her, this will definitely be something you need to bring into the legal arena. But from what I'm hearing, your mother doesn't want "to make anybody mad" or to rock the boat. She's not going to be your ally in this for fear of making her brother mad at her.

Realistically, there are many things going on here that will make it very difficult for you to move your mother and to assume legal control of her affairs. An important one may be that she won't eventually cooperate. But what will happen to her if this brother now passes away? You need to ask, and to know what's going on, before launching a wholescale assault to take over the whole care and financial management of your mother. Good luck to you as you work through these issues.