An Eldercare Journey

My mother who has dementia starts to run out of money to pay to live in her current facility.

The representative from the nonprofit organization that helped me find her current facility suggests a lawyer and said I should move my mother to a less expensive facility while we wait to get Medicaid approval.

I think the lawyer is taking care of this after I paid an initial consultation fee and we talk. She is not. I don’t know this.

I trust everything is proceeding as it should. When I don’t hear from the representative, I email again and he connects me to a social worker. She’s amazing.

The social worker recommends a legal firm that specializes in eldercare.

I talk with the receptionist.

I fill out a questionnaire and provide copies of a few legal forms concerning my mother.

I have an exploratory conversation with an associate.

They schedule an information session with a paralegal.

I have the session with the paralegal. I find out things I didn’t even know I didn’t know. Everyone there seems to be amazing.

They made an appointment for me to have a Zoom meeting with the lawyer.

I pay $500 for this initial consultation with the lawyer.

I have the meeting with the lawyer. We discuss three different options for my mother’s continued care. One is not possible. The other won’t work because her social security is not high enough. The third option — skilled nursing care — is both what she needs mentally/physically and is the best fit with her finances.

We discuss the steps needed to begin and successfully complete this process. There are so many.

The lawyers explain that my mother’s social security is $19 more a month than the maximum accepted by Medicaid.

My mother also has too much money in her account, more than is acceptable to Medicaid even though it’s not enough to continue to pay for her current care.

The lawyer explains that we will form a trust for my mom’s money. Once she is in a new skilled nursing facility her money will migrate to the trust.

Medicaid will allow my mother to keep enough of her social security each month to pay for her Medicare supplemental plan and her drug plan. She will also be allowed to keep a small amount for incidentals. The balance will go to the skilled nursing facility.

I can use money from the trust, as in I can be reimbursed by the trust, for things I spend money on for my mother. Things such as dental expenses or a trip to go and see her once in a while. She’s in a state pretty far away.

If there is money in the trust when my mother dies, it belongs to Medicaid.

I pay a retainer of $7960 for the firm’s services moving forward.

The law firm had to go to my mom’s current facility and get her to sign permission for me to get a new POA drafted that included the right to form this trust. The POA I currently had did not. Fortunately my mother trusts me and said yes to the lawyers. Her dementia is such that she understood in the moment but won’t remember that she did it.

I also had to find two people at her current facility willing to swear to my mom’s identity since she does not have any current form of identification. Everything is outdated.

Luckily this all went off without a hitch. I FaceTimed with my mom right afterwards and she didn’t even mention it.

Meanwhile, I had to upload copies of all of her medical plan information to the portal the lawyers set up for me. Her Medicare card, her Medicare supplemental plan card, and her drug plan card.

I also uploaded a copy of her social security card, her outdated passport, and her birth certificate.

Luckily I had a copy of a letter from her Medicare supplemental plan that showed the monthly/yearly costs.

I did not have a copy of an income verification letter from social security. After an unsuccessful phone call I discovered they would not send one to me because they do not recognize POAs. I would have had to go through a process to be in charge of her affairs with the SS Administration that would have taken a lot of time and slowed the process down. Time was of the essence.

Because we use my address for my mother’s social security account, a local SS agent was able to send something to my old address — I had moved to my new home two months prior to that — that got forwarded to me at my current address, which enabled me to access the letter online and upload it to the portal.

I went online to my mother’s checking account and located the statements that were required and uploaded them to the portal.

I called to find out about and choose a prepaid irrevocable cremation plan for my mother as advised by the lawyers.

I had to pay back one gift that my mother had given to me quite a while back because it would not be acceptable to Medicaid.

Meanwhile I talked to the social worker about finding a facility for my mom. I was freaking out because I worried I would not find one where she would be safe and happy.

But first I had to get the doctor who cares for my mother through her current facility to fill out a form 3008, which evaluates my mom and documents her need for skilled nursing care.

The doctor also needed to provide a copy of my mother’s most recent physical exam and a list of all of her drugs.

The doctor did the 3008 form fairly quickly. It still required multiple emails to her and the health and wellness director at her current facility.

The doctor neglected to supply a copy of the exam. This took another bevy of emails. She finally sent it along with the drug list.

All three of these forms were required for a skilled nursing facility to admit my mother as a “Medicare pending” resident.

I sent a copy of the forms to the social worker and waited to hear from her.

She got back to me and said that the doctor had missed one very important box of information on the form. After another series of emails back and forth the doctor sent the corrected form back to me, which I then sent to the social worker.

My mom had spent time at a particular facility two times for rehab. The people there had been amazing to her. Let’s call it Facility H. When I mentioned Facility H. to the health and wellness director at her current facility she told me that it was horrible. I was devastated.

The social worker kept assuring me she was attempting to find a good placement for my mom.

My mother was in a locked facility so it was likely she would need to be placed in the same type of facility. This made it a little more difficult to find a good placement.

A few days and a weekend went by. I got a call from the director of Facility H. She told me the social worker had reached out and said I was looking for a place for my mom. I told the director I would get back to her after I talked with the social worker.

I texted the social worker and she called me back. I told her what I had been told about Facility H. She assured me it was NOT true.

I called the director of Facility H. back. We spoke on the phone. I told her what I had been told. She said that they had activities. They were the same ones I remembered from when my mom had been there before. She said everyone went to them — the rehab patients, the skilled nursing residents, and the locked ward residents.

She told me that my mom would not have to be in the locked ward. They have technology called WanderGuard. The residents wear something (like a bracelet) and if they go near an exit door it automatically locks.

The director said she had looked up my mother’s records from when she was there before and my mom had never tried to run so they would use the WanderGuard.

She sent a video of the facililty to me.

We scheduled a FaceTime for two days later. I got to see the entire facility including a room like the one my mom would be in.

I saw people doing activities.

I found out they have an inner courtyard. Residents can go “outside” anytime into the courtyard without the risk of wandering away.

I was introduced to several people who work there.

Meanwhile, over the past month or so I’ve realized that my mother needs more care than her current facility can provide her even though it is a more expensive place. I’ve gone from feeling devastated to relieved.

I gave 30 days notice to my mother’s current facility.

I made a list of the things my mother will take with her to her new facility. It is only a small portion of what she currently has with her.

All of her clothes need to be machine washable and she will have far less dresser and closet space. She doesn’t need as much in the new facility. They provide all the furniture.

I arranged for her current facility to box up what she’ll be taking with her — mostly clothes, some personal items including her art supplies, and artwork for the walls.

I FaceTimed with her current facility to pick the framed photos and wall art she’ll be taking to the new place.

I gave her current facility a list of a few things to send to me.

I ordered some new machine washable clothes for my mom that will fit her better since she’s lost some weight and these will also be better suited for her new facility. I also order two pairs of flat shoes. Hopefully her current facility will listen and only send a few of her current things.

We are not telling my mom ahead of time that she’s moving. She may refuse to go if we do. She also would probably not remember what we told her. She has typically gone where she is told, such as to rehab, and instantly adapted. Fingers crossed.

The new facility will come and pick her and her walker up and take her to the new place. They will get her involved in some activity right away.

I’ve contracted with an eldercare moving service — the same one that moved her stuff from her condo, that we sold, to her current facility.

A rep from the moving company is stopping by her current facility to look at my mother’s stuff on Tuesday of this week. Mostly she’s looking to assess how much will need to be moved for donation and disposal after the current facility boxes up what will be going with my mother to the new facility.

Meanwhile I have ordered new pajamas, slippers, underwear, art supplies, a sweater, long sleeved tops, a comforter, and a sweater to be sent to my mom.

I had to sign affidavits before I could reimburse myself from my mother’s account.

Once the mover’s rep susses out how much will need to be moved she will let me know if my mother will be moved this Thursday or Friday.

It’s almost over.

I still have to find out if I can use my mother’s account to pay for moving or if the money will already be in trust at that point.

I need to continue to check that everyone is on the same page about what is going with my mom to the new facility.

I need to keep all of the players in the loop.

I have to learn how things will work financially once the trust is in place.

Tomorrow I take the three pairs of pants and two tops that I had delivered here, before I had secured a place for my mom, to the post office to two-day ship them to my mom’s new facility. One pair of pants needed to be hemmed. I wrote her name in all the clothes.

Then I just have to trust that the lawyers have done all they needed to do to make Medicaid approval a done deal.

Phew.

I’m sure I’ve left something out but hopefully only from this list.