Strategic advice needed for mini caregiving crisis

[onebravegirl]

I am a wife, mom to two teenage girls and manage and oversee the caregiving for my Mom. Here are the facts on my Mom:

• She is 75, has advanced MS and has been non weight bearing for years
• She has live in caregivers who rotate days on and off, every week is different for them.
• I have noticed that my Mom has some moderate to severe cognitive executive functioning decline, when asked the caregivers do not admit they notice it. She has had 2 strokes and her executive functioning has declined.
• I got a call from her Edward Jones money person yesterday and they said they have noticed cognitive decline and they have to document it with their field office. They also said my Mom withdrew a substantial amount of money this month and spent it all within 2 weeks - she told them it was going to last 2 months. They were unable to give me any more details (see next bullet point). 
• I just got put on her trust doc as co-trustee. Edward Jones does not have all of the paperwork yet (this will all happen next week) and can't discuss all of the money details YET with me.
• My Mom is still very much with it in many respects and may be able to pass a dementia screen.
• I will be able to find out what the big $$ withdrawal is next week when I am on her account. 
• She cannot move in with me because she is non weight bearing and  she can't get into my home due to all of the steps I have outside and inside. I live in the city of Chicago in a house that is underwater financially and I can't move right now without bringing about $50k to closing.
• She lives about an hour away from me and it is hard for me as a busy Mom, to get away constantly to go meet with her. I also work a full time job.

I need any strategic advice for any of the following items:

• Is it time for me to take over her finances? If yes, how do I go about talking to her about this and what do I say to her?
• I would like to track her caregiver's hours. Can anyone recommend any good apps for them to turn in their timesheets so that I can see if they are being paid the proper amount for the time they have worked? I would like to do this remotely since I live an hour away.

Many thanks. 

[JaneCares]

You are OneBraveGirl!

Good morning. You've gotten some good advice already. I used to be a geriatric care manager, and helped my own parents and grandmother before they passed. I will offer some advice. I do hope you are practicing some self-care. I read your first post introducing yourself and you say you have no siblings 'per se', and you don't mention a spouse or coparent, but i hope your teen daughters have other adults who adore them and can give you a break. You are brave because you have to be, eh?

Well let's see. Money. So you have a contact at the place that manages your mother's money. It certainly would be nicer and fairer to your mom for you to have a conversation with her about her money, her spending, her probably cognitive decline which she may or may not recognize in herself or admit to even if she notices it. You'll be able to find out what she withdrew that money for and then right after that, armed with that knowledge, you can have a frank but very loving conversation. Does she want help managing her bills, the caregiver schedule, her desires for fun things perhaps? On a whim, if i were in a wheelchair all the time, i might fantasize  about a walk in tub or a hot tub. Doesn't mean it would be a wise purchase.

She is lucky to have you as a daughter, btw. Claim that. Seriously.

Say she doesn't want to talk to you about it. You have several options. One is to line up two physicians who need to interview and assess your mother within 30 days of each other and sign paperwork to attest that she cannot safely manage her money. That task alone is onerous, and there's no guarantee that 2 docs will agree. Her neurologist and general practice doc? Does she have a geriatric psychiatrist?  Sadly, or thankfully, we all have the right to make bad decisions... with our money or any other thing... but if you are over 60 and at risk for harming yourself, the State does take an interest and gives concerned loved ones the opportunity to take over. There's just an enormous amount of elder fraud in the world and so this must be done carefully. And watch out for any siblings per se or other relatives of hers who could sue you for fraud, and even when you're perfectly innocent, the hassle expense and time sink of this is to be avoided.

Wow that got ugly fast.

Let me reassure you. She will spend down and then will be eligible for Medicaid, and unless 45 disembowels the entire long term care financial system, she'll have coverage for nursing home care and MAYBE in home care paid for by Medicaid. The best way to look into the future with a crystal ball and plan ahead is by hiring an eldercare attorney. WITH HER MONEY. And get a sense of eligibility, tax repercussions, the worth of her property, all that. Lord have mercy. Attorneys who specialize in this area of practice are crucial to this journey for you AND your mom.  Off load this task to him or her, and reduce your anxiety. DO NOT SPEND YOUR MONEY ON YOUR MOTHER.  Seriously. You need your money for you and your kids. Each generation must take care of its own.

k?

One other idea, and then i'll shut up and let you respond with questions and let other group member pitch in too.

Consider hiring a geriatric care manager. There are several ways to do this. You can get a consultation, which is way cheaper than a lawyer, and get a thorough assessment. You'll then receive a plan, with links to resources, and a sense of what you might be missing. Care managers can help you plan ahead for nursing home care.  She (i have yet to meet a male geriatric care manager) can keep track of your mother's aides, interview them, fire them, if you give her that power, monitor your mother's care. She can attend doctor appointments with her and take notes, follow up on med changes, do all that. Take on anything you want to delegate. With your mother's money. Your mother then has a professional advocate who knows long term care. It is well worth the money. Her money. So what if her funds are depleted more quickly. They will not last forever anyway, and you need the help.

Because you have 2 teenagers who need you right now, and you have a job. And a life? Friends, hobbies, a worship community? Exercise habits? I dunno, other things to do?

Okay i'll stop there brave one. please write back. and thanks for writing in the first place.

Jane

who's life partner has MS

[onebravegirl]

There is some very good information in here and I have some questions for you. I am going to practice some "self care" right now and will write more tomorrow!

Thanks!

[bayside21]

Maybe you could add a bit more info ie if she has enough funds a church related nursing home with people her age range nearer to you would be an answer.  It is so hard being one hour away, I had a similiar situation, however, my parents moved into a senior income based housing while they all together.  Now we being of their age then took the same steps and moved into that type of environment which was so smart since our kids are your age.  They won't have to deal with your situation.

You needed to be the trustee for some time but at least you will be since you cannot be sure of what the circumstances are in your mothers home.  Are the caregivers from a reliable agency? Does someone from the agency check on them independent of your days?  I have seen many around our area taking long breaks outside chatting-what is going on inside?

Also if you are the only child her funds should be out of her name before any further decline.  Hope that helps somewhat.

[onebravegirl]

Thanks for your reply. My Mom has never been affiliated with a church, no funds there. We hire caregivers directly and do not use agencies. We have used agencies in the past and the caliber of caregiver and cost per day was a horrible ROI for us. We have had much better luck hiring caregivers outside of agencies. I do full background and reference checks and we have never had a problem. The current caregivers that my Mom has have been in place for over 5 years. The cost to have live in caregivers is approximately 60k a year which is much cheaper than an agency. If my Mom were to go into a extended care facility the costs would be approximately 10-12k/month due to the level of care she requires. 

Many thanks!

[EveRH]

@onebravegirl - So you're pretty sure that the large withdrawals of funds from your mother's account is strictly due to her own activities, and that her caregivers aren't pressuring her into giving them money, and she isn't just giving it to them on her own to "be nice"?

[onebravegirl]

I don't know about the withdrawals. I don't have access to her account yet. She could have lent one of them money. I went to her house yesterday and there were no big purchases that were visible to my "eyes". 

[EveRH]

If a paid caregiver knows the person isn't 100% mentally, then it's really a breach of trust for them to ask for, or accept even a loan, much less anything more than a small occasion-related gift.

[onebravegirl]

Excellent point, that will be discussed.

[nyadrn]

---

@bayside21 wrote:

Maybe you could add a bit more info ie if she has enough funds a church related nursing home with people her age range nearer to you would be an answer.  It is so hard being one hour away, I had a similiar situation, however, my parents moved into a senior income based housing while they all together.  Now we being of their age then took the same steps and moved into that type of environment which was so smart since our kids are your age.  They won't have to deal with your situation.

You needed to be the trustee for some time but at least you will be since you cannot be sure of what the circumstances are in your mothers home.  Are the caregivers from a reliable agency? Does someone from the agency check on them independent of your days?  I have seen many around our area taking long breaks outside chatting-what is going on inside?

Also if you are the only child her funds should be out of her name before any further decline.  Hope that helps somewhat.

---

Congratulations of making preparations in advance !!!

[EveRH]

Do you know what other accounts your mother has .. like bank/checking accounts? If so, once you're on her trust as co-administrator, you'll have a better idea of how to approach your mother, about her use of funds. Can EJ hold up on any further transactions a few days, until you're authorized to see what's going on?

Are the caregivers from a single agency that bonds their personnel? Another thing you might want to look into, once you understand where the large withdrawal went.

[onebravegirl]

She has one other local bank account. EJ is going to include me on all conference calls going forward. 

Caregivers are hired directly. We do not use agencies. We don't use agencies because 1) the caregiver skill level is horrendous 2) the cost is too high. The agencies take too much of a percentage of the hourly wage. We used to get caregivers from agencies and it was a disaster really. None of the agencies could provide advanced and skilled care for someone who is essentially a quadrapalegic. 

I do extensive background checks and reference checks for caregivers. The reference checks really reveal a lot. I can get a good feel if the caregiver has the skill, personality, characteristics necessary to take care of someone who is as disabled as my Mom. I have found that many people who have severely disabled adult children or parents....usually go direct and hire directly; and do not use agencies for all of the reasons I describe. I am not naive either and realize that there are some perceived benefits from going through an agency.