My Mom Flipped Out in a Drive Thru - Venting

Lazuza

I'm caring for my mother who is in her 80s and has been diagnosed with AD. She was discharged three weeks ago from a physical medicine rehab after a fall with a fractured arm. Prior to this, she was living at home alone with some assistance.

Beginning a week ago, my mom doesn't remember who I am more often than not, which is becoming increasingly difficult to deal with. She wasn't this cognitively challenged prior to rehab. (I'm not saying it's their fault. They were great. It's just that I wasn't prepared for this to happen so soon.)

Yesterday morning, we were in a busy drive thru getting breakfast. The line of cars was long and, while waiting, my mother became increasingly suspicious of me - telling me things like I wasn't who I said I am and that she believed that I was trying to kidnap or hurt her. I couldn't leave the drive thru because it mostly had room for just one car to pass.

When we were one car away from the ordering speaker, my mom started screaming bloody murder and opened the car door in an effort to flee. She had her seat belt on, which is the only reason she didn't bolt. I was trying to get her feet back in the car as she was screaming and the restaurant workers heard the screaming through the speaker came running. The people behind us started honking. I told the workers that my mother was a senior with AD. My mother said that I was lying and that they should call the police. The workers called 911 and also recorded us with their cellular phones. One of them asked if he could get me anything while we waited.

We waited about 7 minutes but no one showed up. We were out of the drive thru at this point. The restaurant workers got us out by having people pull out and then they walked their orders to their cars. Eventually, I just drove off with my mom.

Many lessons for me here. A lot of people talk about sundowning but my mom's the opposite. She's worse in the morning and occasionally knows who I am by late afternoon into the evening.

My car (Prius) does not have people-proof locks on the front passenger side, so mom sits in the back from now on.

I was so scared about what people would think in that moment. Would the cops actually think I was trying to kidnap my mom? How about the workers at this restaurant where I was a regular? It's really embarrassing in the moment but this fear of mine really needs to stop so that I can focus on how to handle what my mom is thinking.

This is all new for me. My mom told me when she was more cognitively intact that she doesn't want a nursing home. Our culture generally cares for the elderly at home. However, mom never agreed to a POA. She is over assets for many programs and I have no way of mobilizing her resources for her without pursuing guardianship, which I have been told will be $$$.

Can I even realistically be her caregiver though? So far, it's been a week of not being able to go anywhere out of fear that my mom will become disoriented and freak out again. (TMI but I can't even go out to buy needed tampons and have to Uber Eats or Instacart everything.) My boyfriend dumped me over my mom now living in my apartment. He was a support because he often cares for this ex-MIL who has AD, which is the only reason I marginally know what to expect and how to care for my mom at home, if that's what I choose to do.

Needless to say, everything is super stressful. I just needed to vent.

Quilting brings calm

Have you tested your mom for a UTI? My mom behaved this way when she had one even though the doctors at the time kept saying she didn’t. Once treated, she got a whole lot closer to her baseline. If she doesn’t have one, call her doctor and ask for medication

Lazuza

https://alzconnected.org/discussion/comment/201562#Comment_201562

TY! No UTI tests since her d/c, no. I'll try to get some AZO strips?

I assumed it was worsening AD and that her functioning aligns with her brain imaging from last month, which showed atrophy and central volume loss with 3rd and lateral ventricular prominence, esp compared to the prior study.

SusanB-dil

Hi Lazuza - so sorry you are having to deal with all that. Would you not be able to get her to speak to a CLEC (elder attorney)? Sometimes they can get someone to sign for DPOA. If possible, also for medical POA. Agreeing with QBC. Could be UTI. But in any case, do get her to doctor. Even if you are not on HIPPA, you can still tell them what is going on. They just can't reply back. If she is reluctant to go, you could tell her it is for insurance reasons, or for any prescription refill needs to be seen first.

All of us HATE 'this'!

Emily 123

Lazuza,

A lot of times a UTI will really exacerbate underlying dementia. The UTI strips aren't as sensitive as a culture, which might be needed if they're showing (-). Can you get her to her doctor and discuss the meltdown too?

Key to this is that you don't have to explain this to her. She's not in her right mind. Your goal is to get her to the doctor, even if that means fibbing that you need to see them or that her Medicare requires it. Make sure the staff and provider know ahead of time what you're seeing and her behaviors and that she's resistant to care.

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It's probably not helping with her disorientation that she's had two major moves recently. PWD can function up to a point if they are in a familiar environment, but if it's removed they'll flounder. Keep in mind that your mom may be at the point where her short term memory is gone. When that happens she won't be able to imprint new information. There'll be a big gap where recent information should be, and because she has no ability to retain a memory she won't sense that there's a big gap. She can't sense time passing because she has no way to 'pin' a memory of events. Because she can't recall the recent past she'll assume that things are uneventful and that she's fine.

For your mom, especially if there's a UTI involved, It may seem like she's ended up in your home for some reason, she's had a pleasant visit, and now she wants to go home and you won't let her--you seem to be making up some crazy excuse like a hospital/rehab visit she can't recall. Because the disease impacts how she can think logically and use judgement, she may think you're kidnapping her and holding her against her will. And the drive through seemed like a good place to escape...I'm so sorry you and your mom had to go through that.

harshedbuzz

@Lazuza

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I have some thoughts to share, in no particular order.

If your mom had an Alzheimer's Diagnosis at the time of her injury, this could be a chicken or the egg scenario. Sometimes PWD will suffer a fall/injury that is the result of disease progression rather than the progression being strictly from the injury/hospital/rehab experience. It's probably a combination of the two. Sometimes PWD do improve once they're back in a familiar place, but 3 weeks out this is likely mom's new baseline.

Since mom lived alone prior, you may not have had as accurate a sense of her disease progression if she was able to showtime when you saw her. This is when a PWD can temporarily get their act together and appear more with it than they are.

That said, if this is a sudden onset behavior, a UTI should be ruled out. A lot of folks do the strips, but gold standard is a clean catch with a culture done to be sure she's on the appropriate antibiotic. If she's been like this since her discharge, a UTI is less likely.

If your mom hasn't/won't give you a POA to act on her behalf, then you'll have to obtain guardianship. IME, both my aunt and a friend obtained guardianship and were able to recover the costs from their LO's assets. I would try to obtain temporary guardianship asap. I would collect those videos as evidence that she is no longer capable of managing her affairs. Her doctors may also be asked to give opinions. Both people I know who did this prevailed; and my friend's dad fought him engaging his own attorney. In both cases the judge ordered neuro-cognitive testing as part of the case.

Once you obtain guardianship, you can investigate MCFs for mom and be her caregiver in the sense that you delegate baths and toileting while ensuring she has good care.

It sounds like mom might benefit from medication. Ideally, EMS would have responded and taken your mom to an ER where she could be transferred to a geripsych unit for medication management.

HTH

HB

Lazuza

https://alzconnected.org/discussion/comment/201571#Comment_201571

Thanks! Yes, short story is that friends connected me with an elder care attorney. (I spoke to several previously - one was referred by my job's EAP and turned out to have one of the worst reputations in my city. She was concentrating on a will instead of a POA or guardianship for whatever reason, which is why I didn't use her. I know guardianship can be expensive to pursue in my state but the second person I spoke with wanted 3x what other attorneys charge.) I reached out to her on Friday and will hopefully connect with her tomorrow.

Yes, dementia is a cruel disease. We have a MD appointment on Thursday. (It was scheduled for last Friday but rescheduled the day prior by the MD's office.) This probably shouldn't wait until then, so I'll try to have her seen tomorrow.

Lazuza

https://alzconnected.org/discussion/comment/201592#Comment_201592

Thank you! This is very insightful, especially in understanding the thoughts and behavior of someone with AD, which I'm only beginning to understand.

We were supposed to see the MD on Friday, which was the day mom freaked out. I made the appointment because of the changes in her mental status. The office called the day earlier and rescheduled for this Thursday. I will try to have her seen much sooner than Thursday.

Lazuza

https://alzconnected.org/discussion/comment/201597#Comment_201597

Thanks! Yes, as much as I would like for my mom to return home, it isn't safe for her at this time, unfortunately.

I have been reading about memory care facilities. I feel guilty for saying this but it would be nice to get some of my life back. I literally haven't had a moment to myself in the last week and not many in the last three. That said, my friends have relatives with dementia that is worse than my mom's in many ways and they care for their relatives at home. They use adult day care and in-home caregivers when they want to go somewhere.

IDK if this is realistic for us. It's not that I'm less capable than they are but I wouldn't have as much support from family in caring for my mom. Also, their relatives may have a different forms of dementia and their particular cognitive functioning may be easier to manage at home? One of my friend's relatives with dementia has forgotten how to speak English although she was previously fluent and now only communicates in Russian. I am told that she is speaking gibberish. However, she's able to dress herself, toilet, and eat if you put food in front of her. She wanders if not supervised but, to my knowledge, she has never had outbursts like my mother and she's not on psychotropics. That said, what she is saying is not understood by most people in the US, so I guess I really don't know what she is thinking.

If I'm going to manage mom at home, I'm definitely going to need help. A local AD nonprofit pointed me to care.com and a local adult day program on Friday, which I'm considering but IDK if this is the right road for us.

harshedbuzz

@Lazuza said:

Thanks! Yes, as much as I would like for my mom to return home, it isn't safe for her at this time, unfortunately.

It's fortunate that you realize that.

I have been reading about memory care facilities.

That's great. There are a couple of really important points to consider. One is cost and how mom'll be paying for this. Most MCFs charge anywhere from $6-10K a month which adds up quickly. Unless mom is quite well off or has a great LTC policy, there's a potential she could run out of funds and need the safety net that is Medicaid for her continued care. This is something to discuss with your lawyer-- Medicaid planning is something a CELA will specialize in. Every state managing Medicaid differently, so in some states mom would have to go to a semi-private room in a SNF when her money runs out.

If mom has a house, that might be sold to fund her care. If Medicaid is a possibility, I would only tour those facilities that accept Medicaid. Often these places operate on a business model where a resident is self-pay for 2-3 years before converting to Medicaid. If mom will be using Medicaid right out of the gate, there may be a waiting list for a bed. If this is the case, you'll want to get on that list asap.

Touring is best. I initially reached out to A Place for Mom. They are the devil-- I do not recommend.

I feel guilty for saying this but it would be nice to get some of my life back. I literally haven't had a moment to myself in the last week and not many in the last three. That said, my friends have relatives with dementia that is worse than my mom's in many ways and they care for their relatives at home. They use adult day care and in-home caregivers when they want to go somewhere.

No guilt. No two people with dementia present in the same way. Type of dementia, personality, mental health issues, previous relationship, and resources available to the caregiver are all over the place. One of my dear friends took care of her sweet mom in a home she had built to include an ADA compliant 3-room in-law suite on her first floor. She was also one who lost her English skills at the very end. Mom had money left from the sale of her home, my friend initially worked PT before taking leave. Her husband was very supportive and she was fortunate to have a son living there between college and grad school who could help during that wretched stage where her mom's sleep was so fractured.

My dad was not that person. He and I never enjoyed an easy relationship, he was paranoid and aggressive even when medicated. He ws resistant to hands on care from mom, he didn't do well with most of the HHAs we hired and we'd never have been able to get him moving in time to take advantage of a day program. HHAs to give mom a break were over $30/hour 6 years ago; at the end of the day, a MCF wasn't all that much more money. When he started talking about murder-suicide with mom, we had him in the MCF within the week.

IDK if this is realistic for us. It's not that I'm less capable than they are but I wouldn't have as much support from family in caring for my mom. Also, their relatives may have a different forms of dementia and their particular cognitive functioning may be easier to manage at home? One of my friend's relatives with dementia has forgotten how to speak English although she was previously fluent and now only communicates in Russian. I am told that she is speaking gibberish. However, she's able to dress herself, toilet, and eat if you put food in front of her. She wanders if not supervised but, to my knowledge, she has never had outbursts like my mother and she's not on psychotropics. That said, what she is saying is not understood by most people in the US, so I guess I really don't know what she is thinking.

Support is everything. I helped mom a lot, but I am it. Dad's brother was worse than useless-- he'd do a 45-minute drive-by visit and then call me to play devil's advocate about decisions mom and I made. Mom's sister was 300 miles away assisting in the care of one sister with cancer, one with dementia for whom she was guardian and helping where she could with another sister with dementia.

If I'm going to manage mom at home, I'm definitely going to need help. A local AD nonprofit pointed me to care.com and a local adult day program on Friday, which I'm considering but IDK if this is the right road for us.

If your mom has "behaviors" you'll need to get that part under control first or she will be asked to leave a day program. Care.com can be great and sometimes a bit cheaper than an agency. IME, unless you are offering close to FT employment, you may find that getting help is a challenge. When you only need, say, 15 hours spread through the week, your caregivers are more likely to be no-shows or leave your employment if they find a job more to their liking-- more hours, better commute or schedule or even an easier client.

HB