When it rains, it pours

GothicGremlin

Feeling apprehensive ....

Over the last few months my s.o. and I have been getting progressively more concerned about his mom ... pink flags have been going up, but now they're becoming red flags. We've discussed with my s.o.'s brother, and he's concerned too.

Their mom is showing many signs of mild cognitive impairment and very early stage dementia - forgetting doctor's appointments, being overwhelmed by life activities (including bill paying and monitoring), cutting out all social engagements (she currently lives in an independent living facility), and extreme apathy.

Fortunately my s.o. and his brother are very involved, and we have most things on autopay, so nothing gets overlooked, but we're all concerned.

We're all on the west coast, and his mom lives in SC, so we'll all be spending more time visiting there then we really have time for, but what do you do?

I'm not sure how this is going to work, us on the west coast, her on the east coast. She has no family there, but she does have community at the facility where she lives. We've tried over the years to get her to move closer to us, but there is no city in the entire state of California that she even remotely wants to live in. sigh

Quilting brings calm

GG- I’m sorry your family has now got double trouble. You know the drill - get those legal documents knocked out. Will you need to do them twice when ( not if) you move her to California?

She’s probably ok where she is for a while if you can get all the legal stuff together. However she’s going to ‘outgrow’ the independent living facility. They have stoves, and no real supervision. Her community will start slipping away when she can’t mentally keep up with them. So start researching ALs close to either you or your BIL so that you will be ready when the time comes.

We had a hard time getting my parents to agree to move back home to our state. My sister was the one to finally get my step-dad to see the light - the fact that he couldn’t take care of mom in her UTI addled state on his own 12 hours away from us. So I don’t know how you convince your MIL to move. Someone here will have suggestions.

GothicGremlin

Her legal docs and her POA are all up to date - thankfully. I don't know if she'll have to redo anything for CA. She had a fairly decent lawyer who took care of everything for her. I glanced over what she has and didn't see anything that jumped out at me, but that was several years ago before I knew anything about dementia. I'll have to take another look next time I'm back (which will be in the next month - yay).

The other good thing for right now is that her facility goes from independent, to assisted, to memory care. If she stays there, she's set. But none of us want her to stay there. It's just too far away without any nearby family.

So yeah, the big problem to solve now is getting her to move nearer to us. If you listen to her though, you'd think that CA is a third world country with no doctors. In reality, there are some really nice areas in CA.

MP8

GothicGremlin, I moved my mother from CA to TX, a similarly difficult move. It took about six months of my brother and I talking to her frequently and emphasizing things that we thought she would see as advantages: lower rental rates, being able to see her grandchildren more often, not so many wildfires, etc. She eventually decided she would. It also helped that my brother had suddenly decided to move from California - he was a couple of hours away from my mother - to another state, so she was a little off-kilter to start with. Never mind that once she moved, we found that she really shouldn't live alone and none of what we thought would happen actually did.

Your SO's mom may hate the idea of California but maybe you could sell her on specific things that she might like? That's what worked for us.

Iris L.

Is her CCRC part of a chain? Is there an affiliated CCRC in CA?

Iris

[Deleted User]

The user and all related content has been deleted.

harshedbuzz

@GothicGremlin

I am so sorry for everyone involved. I hope your SO and their brother are able to act as a team to make the difficult choices that lie ahead for them. Is one POA or is the duty shared?

There comes a time when it becomes critical for the POA to be eyes-on and able to get to the MCF/ER quickly, meaning it is probably time for a move. I would use the fiblet @Victoria2020 suggested. Mom comes for a visit and just never returns to SC. It's how I kept my dad north to PA-- a decision I made while it was easier because he was in MD vs FL. I told him he was staying here because he had some follow up appointments with his doctors here. Rinse and repeat.

In your shoes, I would suggest a routine checkup with bloodwork and a CT scan to rule out other treatable causes of dementia just in case. Does mom have sufficient assets to pay for MC in CA coming from SC which generally has a lower cost of living? Would the facility where Peggy lives be a good choice for mom?

HB

MN Chickadee

Sorry you have this going on parallel to Peggy. It seems like perhaps you either push hard now while there is a chance she can comprehend the consequences and logic to the decision, or you wait until she is farther along when you can use filblets and work behind the scenes, call in temporary etc. Either way I would select some MC facilities near the POA and get on wait lists so you are ready. Are there funds to hire a companion or care manager in SC? It would be really great to have a set of eyes on her to give you updates independent of the facility.

GothicGremlin

Yeah, this is definitely one more thing I don't need, but more importantly I'm sorry this is happening to my s.o., his brother, and most of all to my mom-in-law. She's a cool person... very bright, and especially thoughtful. I don't like that she's all alone on the east coast.

@Iris L. - Sadly no, it's not, and to make matters worse, her facility is actually gorgeous, I can see why she likes it so much, and why she really doesn't want to move. Her apartment in independent living is elegant, and the grounds are lush in that South Carolina way. The only thing that could be better there is the food. 😄 But then again, I'm not a southerner and didn't grow up with things like hush puppies(those are old timey shoes, right?) or she-crab soup, so I'm not really qualified to discuss southern food.

Thanks @harshedbuzz - Thankfully both brothers get along really well, and already act as a team. They're already making plans. My s.o. has her POA for financial, and his brother has her POA for medical. I have full confidence that between them the right things will get done.

And yeah, she'll be fine financially in CA. She'll probably be somewhat better off as her current facility is pretty high end. I've thought about the same facility as Peggy, but I don't think she'll be happy there (although I don't know). Peggy's facility is nice, but it's not as nice as where my mom-in-law currently lives.

Bloodwork and other scans are already in progress, thankfully.

Yeah, @Quilting brings calm she's good for now, but we all know how quickly those doors can close, so we're trying to figure out ways to get her out to the west coast asap. She's too smart right now to fall for @Victoria2020 's fiblet. It's going to be really really hard to get her to move. I remember what a difficult time you had with your parents ...

@MP8 - Yes, it's the wildfires that make my mom-in-law not want to move here. She's also not fond of earthquakes either. She likes the ocean and California has some really beautiful beaches, so we're trying to make that a selling point. We'll see.

Hiring a care manager is a great idea @MN Chickadee . There are enough funds for that and I think it would help ease my s.o.'s mind a bit to have someone there.

It's been a week, and it's only Tuesday.

GothicGremlin

Well.

Here we are in SC, no more pink flags. They're all red now. I don't know whether she's MCI or whether she's progressed to some form of very early dementia, but it's one or the other.

My s.o. performed his first fiblet today - he told her that her car is too dangerous to drive (after she told us that she's uncomfortable driving), and that she shouldn't drive it. Next month my s.o's brother will be here and he'll sell the car. She's coming to terms with it...

Tomorrow my s.o. (he has her medical POA) is going with her to a doctor's appointment that he and his brother set up for her. He's already sent an email to her doctor outlining our concerns. I'm sure her doctor is going to want her to see a neurologist (which would be great), but I don't think that will happen until at least January when my s.o.'s brother comes to town.

When my MIL moved into her independent living apartment, she had to take the MoCA or the MMSE test (I can't remember which one it was), but she took it and did just fine. I'd love it if she took it again now, since we have a baseline... I think hell is going to freeze over before that happens though.

Sigh. I'm hoping against hope that her doctor says it's something else, otherwise I guess it's "here we go again" time. At least this time I have Peggy's dementia under my belt and can advise my s.o. on tactics.

Quilting brings calm

The PCP can ask a lot of the same questions as the MMSE/MOCA. Mom’s doctor did that - Including the clock. He didn’t tell me the score though. A speech therapist did it one time when she was in the hospital with her urosepsis.

harshedbuzz

@GothicGremlin

The hits keep coming. I am so sorry for all involved.

The PCP absolutely can administer the MMSE or MoCA. These are screening tools to identify who needs to be evaluated although they can be used to track progression.

I would have SO ask ahead of time especially if you have the results from the previous screening. If you don't, I'd ask the admissions person at the community what their cut-off is. That said, sometimes in the early going, a PWD can test fairly well especially if they have a fair amount of cognitive reserve.

Your SO is fortunate to have access to someone with your lived experience.

HB

Emily 123

I’m so sorry GG. I’m very glad that she recognizes and has expressed her fears about driving. My mother felt like her reaction times were slower and she was becoming too tentative. That said, the reaction time to operate a car is much higher than for other daily activities, and she was able to maintain IADL’s for a while. She was fairly late presentation (90) before she had a precipitous event. Your being so attuned will let you both guardrail her well, but I’m sorry that this is happening.

forbarbara

You can’t make this stuff up - not even in a song. This disease just doesn’t play by the rules. Stay strong GG and kick butt!

GothicGremlin

Drat.

Drat, drat, drat, drat, drat.

My MIL's doctor is 99% sure that it's Alzheimer's. Also, it turns out that she took a version of the MoCA test at her last wellness check at the facility. Her doctor was able to get a copy, and it showed a decline by a few points.

She's also depressed (but we knew that). The plan is to start her on lexapro and then have her go back to her doctor in six weeks. My s.o.'s brother will be able to be with her for that appointment. Once she's got that under her belt, she'll start aricept, and maybe namenda. He didn't want to introduce too much, too fast.

I don't think it's sunk in yet to her, which isn't good....

@Quilting brings calm - that's exactly what happened - he got the results before my MIL got there for the appointment.

@harshedbuzz - the hits are indeed still coming. We were able to get the results from her last wellness check, including blood work, so this was all good.

Funny about the "lived experience" - last night my s.o. was writing up a note to give to the doctor before the appointment for the stuff that my MIL wasn't going to bring up. My s.o. showed it to me and I told him (without even reading it) that it was too long. 😄 I could see it was two full pages of dense writing. Since it was a shared document, his brother chimed in with "it's too long" (he has an autistic son and has been dealing with those doctors for a long, long time). I suggested short, bulleted items. It all went well.

@Emily 123 - You are so right about that car. Thankfully, this morning my MIL was out emptying the car in preparation for selling it. That's a win.

@forbarbara - thank you for that.

I really don't have a song for this. All I have is a line from my favorite Dead Lights song, Ice Queen. The line is "Hail the Ice Queen, she falls apart at the seams. We’re all just sinking ships at sea." It's not a song about dementia, and my MIL isn't an ice queen (she's a very wonderful lady), but those seams are falling apart, and I can relate to our sinking ships.

Quilting brings calm

You’ve got this- and your BIL ( legally or not) is going to be helpful with his experience too. Getting her depression medication will help. Mom’s scores got better. She is Sertraline and mirtrazipine as she has both depression and anxiety.

Go slow with the Aricept. My mom is on donepizel. She did fine at 5mg, but had severe diarrhea at 10mg. We had to drop her back to 5.

Edited because my pain medication is making me loopy

MrGremlin

Hi all, just wanted to thank everybody on the thread for your advice and support (and of course thanks to GG for sharing the info). Looks like I'll be hanging out here as well as GG!

It's very true that GG's lived experience is a huge benefit (as is my brother's); and, my Mom thought ahead so the paperwork is in place already. Her PCP is a gerontologist who's seen her for years, and from what he was saying has a lot of experience with other PWDs, so that's good too. Still, it's not going to be pleasant. But I'm glad we navigated the car issue with minimal problems ... that, along with the in-person observations and appointment with her PCP, was the main priority for the trip.

CatsWithHandsAreTrouble

Hello Mr gremlin, hugs to you and gothic. Hang in there. The three of you sound like a good team for your mom and I hope that continues to be a great benefit as your mom starts this next chapter in her life.

Jgirl57

So sorry Gothic Gremlin you have this news. Your experience will be helpful but it really is crappy. Welcome MrGremlin. A terrible disease but this forum helps a bunch

Quilting brings calm

Welcome Mr. Gremlin. We will be here for you as well as GG. GG’s and your brother’s experience will help. Keep in mind though that every PWD is unique and their symptoms don’t always match the person next to them. Your mom’s experience could be slower, faster, less agitation, more agitation, etc.

forbarbara

GG and Mr. G - what a team! So good that you have each other to weather this storm.

SusanB-dil

@MrGremlin welcome to 'here'. Sorry of the need to hang out with us, but yeah, here we are in the same proverbial boat...

mommyandme (m&m)

Welcome Mr Gremlin! Sorry bout your mom though.