Losing my mom...

sp3ci4lk

Hello.

I'm 100% new around these parts, but I was encouraged by the counselor I spoke with at the Alzheimer's Association to post my story here in search of those with shared experiences.

I (53) live in Texas with my wife, and my mom (83) lives in Miami, FL. Since moving to Texas in late 2012, I've traveled back to Miami at least once per year, be it for Mother's Day, Thanksgiving, or Christmas. My dad passed in late 2014 and, since then, I've tried to go more often, as my mom has never been very handy, often has things that need fixing, and has a difficult time finding help, mostly because she doesn't speak Spanish. My mom and I have always had a close, loving relationship, and when my mom and wife met, they really hit it off and very quickly developed a very warm, loving relationship. That was 7 years ago, and how things have changed....

In between visits, my mom and I talk on the phone 2 to 3 times per week. About three years ago (hard to say, exactly), I started to notice small changes, like my mom asking a question I answered the last time we spoke, just 2-3 days prior. Before I knew what was going on, I would often become frustrated and sometimes tell her, "I told you the last time we spoke," to which she would reply, "No, you didn't." I'd retort, "Yeah, Mom. I did." Sometimes, she'd remember that I had, in fact, answered her question. Other times, she wouldn't, but it wasn't a big deal. We would laugh about it and move on. This worsened over the course of many months, with phone calls becoming akin to the reading of a fixed script, comprised of the same stories and questions.

Then things started getting...weird. My mom has a sister who she's always been pretty close with. One day, she asked me, "Have you spoken with Aunt A?" I told her I hadn't, to which she replied, "Well, I'm not talking to her." When I asked her why, her explanation stunned me. "She told me I should make her the sole beneficiary in her will, because you're not even blood." I was adopted at 3 weeks and the entire family was always very open about my being adopted, and I was never once made to feel like I wasn't 100% family. I was fairly close with this aunt through my childhood, as me and my parents would spend a week or two every summer with her and my cousin. My aunt saying what my mom accused her of was absolutely, unquestionably NOT something I could ever imagine her saying. This all came after my mom had asked me numerous times if I recalled my aunt asking her estate attorney if she could speak with him privately - it never happened, because I was there, with them, upon my dad's passing.

Around the same time, during one particular phone call a couple of years ago, my mom asked me if I'd spoken with another cousin, K. "I haven't spoken with him in a while." She went on to say, "Well, I don't like him. Do you know what he said?" I didn't know where she was going with this, so I asked. "He said you never told your wife about your MS (I have multiple sclerosis) before you were married." This is patently false, of course, as my cousin didn't even know I about my MS at the time (unless my mom told him about it :# ). This fixation on my cousin has evolved in fairly sinister ways. For example, she now believes - and has believed for almost a year now - that my cousin K, who lives in Tennessee, has broken into her house, left family pictures she's never seen before on the desk in her office. Simultaneously, she believes he also "stole" all of her friends' names, phone numbers, and email addresses, which he used to broadcast on the internet all of my mom's misdeeds (whatever those are). This is why none of her friends like her or want to talk with her any longer.

Very recently, in the past 3 months, she has come to believe that the above wasn't only my cousin's doing, but mine, too. Yes...I conspired with my cousin. Her believe has escalated to the point that in the last 3 weeks, she will no longer answer the phone when I call. She has returned my call 3 times in the past 3 weeks, and each time she says the same thing: "I'm just calling to let you know I'm okay. I can't believe that you did what you did to me...that you could treat me that way, and I have no desire to speak with you anymore. [CLICK]"

I had called her primary care doctor, who she's seen for decades. I thought I was on her HIPAA and wanted his perspective, as a medical professional, who has seen her for so many years. After 4 calls and no returned calls, I called a 5th time and evenly threatened to report him to the Florida Board of Medicine. Of course, he was on the phone with me within 15 minutes. He said I was on her HIPAA last year, but that's expired and she'd told him not to speak with anyone about her - not me, her friends, other family...no one. But he's concerned about her, so he called me to let me know. She's not taking her antidepressant, her Galantamine, and who knows what else.

I plan to speak with an elder law attorney in Florida, but this has been so incredibly stressful. She has no power of attorney, so no one is able to take care of her affairs if she was incapacitated for a few months. In fact, other than a will, I don't know that she has any other estate planning in place. Any attempts to speak with her about these things years ago only resulted in, "You don't need to know anything about my affairs. I'll be fine." Any attempt to reason with her was met with a stone wall.

I just don't know what to do or where to take this, beyond speaking with an attorney. I don't see how I can make her speak with me if she's found competent, but I'm afraid she may not be and may be neglecting herself. Anyone have any advise, based on similar experience/s?

M1

Welcome to the forum, you have come to a good place for advice and support. You are absolutely correct that you need to speak with an attorney, but it probably goes a lot farther than that. The paranoia and delusions are pretty common. She is likely to the point of not being safe to live alone, and if she won't give you POA you may have to pursue guardianship, which is more expensive, and/or involve adult protective services. Can you go for a prolonged visit so that you can really assess her day to day functioning? Is she still driving? So sorry this is so difficult.

SusanB-dil

Hi Kevinp - welcome to 'here', but sorry for the reason. so sorry you are dealing with 'this'. Agreeing with M1 to seek guardianship, since it doesn't sound like she will willingly sign POA for you. Also, have you spoken to your aunt? I'm guessing your mom is confabulating the story. Is there anyone nearby your mom that knows her well enough and close enough to check on her? If she isn't taking meds, she may also not be eating properly - Expired foods, not eating enough, the 'good' foods instead of junk food, etc. Could a welfare check maybe even be warranted?

And as M1 mentioned, the driving? She could get lost or worse.

About the medical HIPPA, you can tell her doc your concerns and findings. They just cannot reply back with any medical info.

mabelgirl

My mom tells everyone the police have come to my home arrested me but somehow I get out and come back! I am also a thief, liar and so forth. Such a joy to live with!

yes guardianship sounds warranted . I was faced with similar situation. Does she trust your wife? My mom would trust my sister some days , so we had POAready for a good day and my sister explained what it was, Mom was agreeable and off they went and got it signed and notarized! Saving thousands in legal expenses.

I wish you luck. Thank you for sharing your story.

mommyandme (m&m)

Welcome to the forum yet also sorry you’re on this journey. Long distance caregiving is very difficult especially with no ability to really care for her, no POA or guardianship. I’m wondering if she’s still taking care of her finances and what state that’s in? Many scammers prey amongst the elderly. My mom was taken by a couple. Maybe she’ll allow you to visit for a bit. You might just apologize for whatever she claims you’ve done, if she even recalls what her claim is. Tell her you’ll look into “it”.. you’re sorry “it” happened.. etc… I imagine your aunt probably didn’t say what she’s accused of, also. The paranoia and blaming anyone or anything for whatever the patient “thinks” is unfortunately common in dementias. Maybe her dr that seems to care could reach out to get her to come in for some testing.

Do you have trusted people to look in on her? You may need to make an extended visit to assess her situation. I truly hope you can get communication going with your mom again.

sp3ci4lk

https://alzconnected.org/discussion/comment/200626#Comment_200626

Thank you for your reply.

I'm afraid I will have to seek guardianship, however that unfolds. I'll have a consult with a few elder law attorneys tomorrow.

And yes - I'm gonna have to get down there soon-ish to try and assess things, because I have a very trusted high school friend who dropped in to check on her, and he said she looks great, is super sharp and lucid, and that they had a very normal conversation for about an hour. A woman who was a young girl when she grew up in our next doors neighbor's family also called and said she will drop by in the next day or so. Apparently, my mom sounded like her "spunky usual self" when she called.

She's still driving, which is a huge concern, as she's been in a few minor fender benders already.

sp3ci4lk

https://alzconnected.org/discussion/comment/200635#Comment_200635

Thank you for your reply.

I'm afraid I will have to seek guardianship, however that unfolds. I'll have a consult with a few elder law attorneys tomorrow.

And yes - I'm gonna have to get down there soon-ish to try and assess things, because I have a very trusted high school friend who dropped in to check on her, and he said she looks great, is super sharp and lucid, and that they had a very normal conversation for about an hour. A woman who was a young girl when she grew up in our next doors neighbor's family also called and said she will drop by in the next day or so. Apparently, my mom sounded like her "spunky usual self" when she called.

She's still driving, which is a huge concern, as she's been in a few minor fender benders already.

sp3ci4lk

https://alzconnected.org/discussion/comment/200639#Comment_200639

LOL You criminal, you.

She might or might not trust my wife, but we haven't tested it yet - she's gonna call her solo and see how she responds. My gut tells me she'll just assume she's conspiring with me, just as I'm conspiring with my cousin. The counselor I spoke with at the Alzheimer's Association told me it's not uncommon for those with dementia to "step up to the plate" (to avoid "detection") when they believe they might be under inspection. Joy...

cegray561

https://alzconnected.org/discussion/68390/losing-my-mom

You're in a tough spot. I didn't read your entire post but I'll tell you that I wasn't aware of my mother's descent into Alzheimer's until after my brother died and my sister in law called and told me she couldn't take care of my mom, that I had to do it now. I had no idea what she was talking about. I started going to see my mom every other week and learned that Mom was not in control of anything in her life, bills, groceries, etc. I learned that I needed to take a major part in Mom's life. I moved her I in with me, had papers drawn up to begin making her medical decisions, legal decisions and financial decisions. I strongly suggest you do the same, with an attorney that will verify her ability to assign those responsibilities to you. Otherwise those who care more about their pocketbooks than your mom will take everything she owns.

Smilinpj

Welcome - and I am so sorry you are going through this.

The first phone call I would make is back to the doctor. He doesn't have to tell you anything, but he expressed concerns and because of that he needs to act. I just looked this up for Florida: "As soon as a physician documents that a patient can't give well-reasoned, willful and knowing decision making (the legal definition for incompetence), a health care proxy can be designated from among family members or close friends (in the order of listing found in the law)." (taken from myflfamilies.com

This may save you lawyer fees where not needed. In order, I would imagine that you should be assigned as proxy. When that happens you may need to look long and hard at her location and surroundings. It doesn't sound to me as if she is safe, and you may be too far away to help. She could be put into an assisted living facility in FL, or you could move her near you in a facility where you can actually have eyes on her.

From your description it sounds like she could be easily swindled. As soon as the doctor helps you out in being her health care proxy, you need to look into being her POA. My mom got very suspicious of everyone 'trying to take her money' and started throwing bills away. She also ended up paying $200 a month for her cable when her and my dad watch the same 3 channels they've watched for 50 years.

She won't be happy, but it doesn't sound like she is anyway. Medication is needed and needs to be monitored. If you aren't there to do it, someone else (like in an assisted living situation) can.

Another place you can turn: https://elderaffairs.org/ . Look them up online, and then make a phone call to them.

Again, I am so sorry you are going through this, but you do have places to turn.

Judi