Aging parent and caregiver check-in Sept/Oct

[litskispeciality]

midwestmama, I think you were in another thread about finding help outside of A Place For Mom. You might want to look in to advocates to see if they can help navigate who has openings based on beds, funding etc. I found one through a social worker at my dad's PCP office. My dad's (horrible) Geriatric Psych also has a social work team that recommended the same person. They were supposed to send me a packet with resources in my dad's area too, but alas they suck and I got nothing. I don't think we're anywhere near each other, but I'm happy to PM the ladies name as she was happy to refer me to another agency if we moved my dad out of her area. Good luck, and huge hugs!

janegold, also echoing to check for UTI and then maybe see if you can schedule an appointment with a geriatric psychiatry place if the symptoms don't let up. We had to wait a looong time and get 2 referrals from my dad's PCP and Neuro. They eventually did some (inconclusive) memory/cognitive testing. Basically at some point just about all of my dad's doctors said we had to work with Geri Psych, and the place also works with my dad's memory care facility, so it's good to get on a list if you can.

[ssmjlm]

I don't know where to put this because talking to DH is 50/50 if he's going to actually see the point I'm making.

BIL is suddenly trying to plan for if FIL needs care is all worried about the house. That ship has sailed, DH asked him when I was pregnant to switch the deed and FIL refused.

I tried to explain to DH the actual costs of nursing homes and threw out $5k as the ballpark. He thought that was way too high. I told him, FIL doesn't have that much cash, you're going to have to sell the house to pay for care if he lasts more than 3 years anyway (or sooner).

FIL lives alone. He doesn't get around great, but is stubborn. His house is a dump that will need to go to a flipper or a tear down. I don't know that you will ever get the smell of woodstove, pipe, coffee, and old man out of the walls. He didn't use central heat for years and only burned the wood stove. I shudder to think what's behind the drywall.

Alas, DH refuses to stand up to anyone and explain realities.

Don't even get me started on MIL and her husband's $60k cat room, of which they don't have the cash, so they're taking out a HELOC.

[litskispeciality]

janegold realize I didn't answer your other question either. I lost my mom over 10 years ago, but looking back I think my dad pretty much declined within about a year of her passing. My brother and I were talking recently about how he just never really bounced back. My dad was still pretty young (62 I think?) so it could have been different, but even after a little dating he just kind of became really depressed. I think it's person dependent, but I can sadly see how losing someone so close to you after so long just kinda takes everything out of you.

[RitzyHeifer]

Sept 19, 2024 7:14:20 GMT -5 stemmie said:

RitzyHeifer , Institutional Medicaid is the safety net that covers placement in facility if the individual qualifies. Some state programs will fund a few hours of care in the home to avoid/delay placement.

Thanks! I realized later I was using “MC” thinking it stood for Medicaid, not Memory Care (derp).

But yes, our state covers in home care and assisted living with Medicaid. MIL’s state only covers full nursing home care that she doesn’t quite need yet. A few weeks ago she was amenable to assisted living but now it’s stay in her home no matter what (no matter what being a dangerous and bad situation….)

[mrspez07]

Has anyone taken FMLA to care for a parent? Thoughts/opinions?
My focus at work is crap and trying to figure out solutions. I’ve been chipping away at sick time to cover meetings/visits with my mom, but that’ll run out soon.

[ProfessorArtNerd]

In a strange turn of events, I’m suddenly off the hook with my aunts decision making. The social worker where she is now was able, with the help of some of aunts local friends, to find an old but valid will and advance directive. I’m not even on it, my sister and aunts best friend are. My sister and aunt have a strained relationship due to the aftermath of other aunts death in 1/23.

No idea why she’s on this directive and I’m not. But now I can just focus on checking up on her physically and financially, and I’m not obligated (even in my own mind!) to go down to Fla and figure
Things out. Whew.

[livinitup]

mrspez07 I have suggested it and approved it as a supervisor. Basically, it meant the employee went to HR and told them what they needed. From what I’ve seen, the main resistance to using your FMLA is the reduction in pay with no reduction in work load. So, this person didn’t have less clients or less documentation obligations, they could just leave the office or not come in about once a week. The employee was required to use up all sick time before using FMLA.

I think a person’s experience of FMLA is dependent on the organization and culture. A few years later, in another department, HR let the FMLA person use “donated PTO” from his boss. It was a little wonky because it was a brand new idea (and addition to the employee handbook) so HR didn’t have a set plan.

The org doesn’t have to dock your pay, they just can. They can also reduce your workload. Or some jobs just automatically get coverage because of the nature of the work. You may be able to ask for more remote days in lieu of days off. It’s a huge pita for HR to dock pay (they have to pull your stuff individually for payroll), so they do like have a set schedule (certain days off or certain reduced hours per week, every week or every pay period), but are required to let you have flexibility, by law.

I would recommend reading your employee handbook and aski bc questions with your supervisor and/or HR. You can always ask. It seems like a big deal until you do it.

[waverly]

Sept 20, 2024 11:04:45 GMT -5 mrspez07 said:

Has anyone taken FMLA to care for a parent? Thoughts/opinions?
My focus at work is crap and trying to figure out solutions. I’ve been chipping away at sick time to cover meetings/visits with my mom, but that’ll run out soon.

I've taken it for my kids.  It's basically just job protection so they can't fire you.  I had to use PTO in conjunction/ at the same time as my FMLA.

I did not have to do other responsibilites at that time as I was on maternity leave.  But in your example, you could use unpaid time with your FMLA and take 1 day off a week (intermittent FMLA) for appointments.  But, whether you have to make up the work would depend on your organization.  In mine, I would be fine to make it up on another day or assign it to my staff as I am their manager. 

[snapoutofit]

My mom has Alzheimer’s and lives in a very nice assisted living. Last October there was a fire so she had to move to a sister facility while they were redoing the place. Today, FINALLY, almost a year later we moved her back and she is all out of sorts. She was wild today! I was moving a card table and chairs (which we were using temporarily) and she was trying to pick up and move the table. She was fluttering and buzzing all around me “what can I do? Can I help? Did I take my pills today? Is this place closer to you than the other place?” It is so hard to stay patient when we get stuck in this loop. When she gets really confused she always thinks her dentures are broken. I’ll get at least two phone calls tonight about it.

[RitzyHeifer]

I thought of this thread while at dinner tonight (Applebees with a preschooler because why not raise young kids and care for aging parents at the same time?) A pair of older couples sat behind us kvetching about their adult kids hassling them. One woman went on and on about her ridiculous kids wanting her to wear and apple watch in case she fell outside, so she would have a way to call for help. One of the friends says “I thought you had a fall recently?” And she replies “oh yes, last week Tuesday I fell and broke my nose and had to lay there yelling for 20-30 minutes until some neighbors heard and came to help me…”

Ah yes, how dare your kids want you to NOT have to do that again…

[idahome]

mrspez07: I didn’t request or use FMLA when my dad had spinal cord surgery or rehab. I didn’t request/use FMLA when he fell, was hospitalized, then did rehab, and finally found his place in a skilled nursing facility even though I was constantly at appointments, on calls, or in meetings helping my mom coordinate everything.

I AM able to use FMLA for mom my who was hospitalized for 2 weeks due to multi-organ failure and then spent 2 weeks in rehab. She’s home now but has weekly tests and monthly specialist appointments.

I should’ve taken FMLA with my dad. I’m glad I have it for my mom,

These are the exact reasons we should use FMLA. I hope your employer understands it and approves it if you request it. The bummer is that almost all employers require you use your accrued time off before going unpaid. And caring for another person isn’t covered by any STD so chances are strong that eventually you’ll be taking time off unpaid.


Caring for parents is no joke.

Good luck to everyone.

[cricketwife]

mrspez07, I took intermittent FMLA to care for my mom when everything first was shifting to me. It wasn’t ideal for me because my workload was not reduced. So I would take one (sometimes two) days a week to do all the stuff I needed for my mom and then spend the weekend catching up on my work. It allowed me to do doctor’s appts, lawyers, etc — all the things that have to be done during the workweek, but it didn’t bring me any relief. I was bitter about the whole situation. If I were to do it again, I would not do intermittent FMLA and just take x number of weeks off. I was worried that something would happen and I would “really” need FMLA and have used it all up. But that was silly because I was in crisis mode and there’s no way things could have been more stressful than they were.

So definitely use it if you need it, but see if you can do it in a way that helps you and doesn’t exploit you.

[cricketwife]

Sept 20, 2024 16:18:14 GMT -5 snapoutofit said:

My mom has Alzheimer’s and lives in a very nice assisted living. Last October there was a fire so she had to move to a sister facility while they were redoing the place. Today, FINALLY, almost a year later we moved her back and she is all out of sorts. She was wild today! I was moving a card table and chairs (which we were using temporarily) and she was trying to pick up and move the table. She was fluttering and buzzing all around me “what can I do? Can I help? Did I take my pills today? Is this place closer to you than the other place?” It is so hard to stay patient when we get stuck in this loop. When she gets really confused she always thinks her dentures are broken. I’ll get at least two phone calls tonight about it.

PSA- If your loved one is ever in any kind of facility- assisted living, rehab, memory care, etc and there is an impending emergency - flood, hurricane, natural disaster, burst pipe/water outage, and they ask you to take your loved one until it passes, know that if you take them, they are your responsibility until the issue is resolved.  For example, Hurricane Ian demolished my mother’s first facility but because I left her there, they were responsible for her safety. They had to evacuate her to another facility during the storm and then find a bed for her at yet another facility while rep the first place.  The first place has still not reopened.  I know it sounds cold, but imagine trying to find placement for your loved one in the aftermath of a natural disaster and the shortages too beds that already exist. If you want them with you in that situation, that’s great, just know what responsibility you are taking on it you get them. 

OP, I hope your mom readjusts ok. 

[litskispeciality]

I have been on the phone for over 4 hours today. My dad's health insurance will finally let me talk to them (depending on who I get on the line), but now they're saying they're going to drop his insurance because he moved counties in the same state. I had to talk to Medicare too. I couldn't update SS stuff, and missed their call back instead of holding because I was on the phone with insurance. This is all after over an hour of paying dad's bills last night because some places won't take online pay.

Meanwhile my dad's PCP is still wrong so the old PCP is calling me asking for updates, but I don't have the right info and Memory Care can't just answer every question as soon as I need info.

I really worry I'm going to have early cognitive decline because of the stress of doing all of this. I really, really wish I had someone else to help, someone to share the responsibility, even just for one call. I may seriously look to see if I can hire someone to help handle whatever else has to be done because I can't spend half a work day + on this, plus my own job and life!

Sorry it's been a loooong day and now I'll delay DH and I getting away for the weekend because I used my breaks for phone calls.

[midwestmama]

Well, I think the time has really come for MIL to get on a waiting list for a MC facility. Yesterday she had to call DH on the way to DS's football game because she couldn't remember how to get there. Guys, we live in the same town that DH grew up in, which MIL also grew up in. It hasn't changed that much. And the biggest thing is, the high school (and football stadium) is the same building and location as when DH was in HS here, so MIL should not forget how to get to the school/football stadium. DH said after the game yesterday he would start calling facilities next week about getting on the waiting list. I suggested that he ask his sister to help (she lives 1000 miles away, so can't help with in-person things, which I'm sure is on purpose), since she is a SAHM (her kids are 7-14 and independent enough that she can take 30+ minutes here and there to make calls), so he is going to reach out to her this weekend to ask for her help. (And if he doesn't, I will reach out to her. DH has done quite a bit the last couple of years taking MIL to appointments and helping out as needed.)

[lilypad1126]

I have no idea what’s going on with my mom. She has terrible back pain (muscular? Nerve?), unrelenting nausea, no appetite even when the nausea is under control, she’s losing weight, terrible constipation, and no doctor seems to care. They are ordering tests, which take weeks to schedule and get in for, but in the meantime, the docs seem to be shrugging their shoulders. I flew up there last weekend when she called in a panic, and I thought we’d turned a corner. I took her to the ER, they did some X-rays, pumped her full of fluids, and she was able to eat. But she just called me this morning and is back to saying she doesn’t think she’s going to make it thru the week.

I live multiple states away (it’s a 3 hour plane ride to get there). My job is understanding but at some point that’s going to run out. I do have an actual job to do and I can’t do all of it from her kitchen table. I’m her person, so to speak, but I just don’t know what to do for her. I already have plans to be back up there next Friday, which I reminded her of, and she replied with, ok I’ll let you know if I need you to change your plans to come up before that. Um what? Like, I want to be there for, but I can’t tell how much of this is she really is dying and no one is doing anything versus anxiety that she doesn’t feel well and hasn’t for some time. And my husband would like to anctually spend time with me, and my job would like me to, you know, work.

[janegold]

Things are getting harder with MIL. As mentioned upthread, her cognition seems to be going downhill, particularly noticeably since FIL passed away in June. I don't think she fully realizes what is happening, but she's so frustrated and sad and MAD about it.

My 7 year old is out of school today and yesterday for Rosh Hashana. H is out of town and I still have to work. MIL kindly called on Tuesday and asked if she could help me. I said it would be a huge help if she could come hang out with DS on Thursday for a few hours so I can get some work done. (I am WFH, I wouldn't otherwise leave him with her for an extended period of time.) She said she would be here at 930, which I said would be great because I had something going on at 10.

At 10a yesterday, she still hadn't shown up. H called her and she was still at home, had no memory of us discussing a 930 start time, and was mad that I hadn't "kept her in the loop" to tell her what time I needed her. She showed up at 1030 flustered and angry. She called to DS from the door (wouldn't come inside) to tell him to get in the car. I asked where she was planning to take him, and she snapped "I don't know." H and I have discussed with each other that we aren't comfortable with her driving the kids. I MIGHT have let her take him somewhere in our tiny town where there are no roads with a more than 30mph speed limit, but I certainly wasn't going to let her take him to some unknown location. I said gently that H and I would prefer that they stay at home. She said she didn't want to stay home with him, called goodbye to DS ("Maybe I'll see you in a year"), and left. And now she is FURIOUS at me for not letting her take him, says she'll never set foot in our house again and that we'll need to find a "new grandmother" for the kids.

She has always had a tendency to immature behavior and can hold a grudge like it's nobody's business. But I suspect these types of issues are going to become more and more frequent now that she is getting more confused and we are able to trust her less. It's sad and frustrating.

[vasc]

I think I posted upthread that the AL where my aunt and her dog live called me three weeks ago to say the dog wasn’t working out and that it needed to live elsewhere. There had been some bathroom accidents that in hindsight we think were related to changes in food, but also she had a mouth tumor causing chronic bleeding from the gums.

I was kind of side-eying things though because id get different reports from different personnel that the dog had been scratching at the door, barking, etc. I don't believe all of that to be true, but i knew the bleeding was an issue.

We were initially going to have the dog euthanized but at the last minute i chickened out and instead offered to keep the dog at my house. Neither of us felt that the time was right for euthanasia.

Dog got ten more days at my house before i did have to tell Aunt that the bleeding was getting worse and that i felt we should euthanize before it became a ruptured tumor emergency situation. She agreed and so we had it done at a local vet's office Wednesday.

Aunt is devastated….sobbed and sobbed. But on a practical side, having the ten days where dog was with me gave her practice at existing in her AL room alone. Being *alone* is her biggest fear and just the dogs noises and breathing were always tremendously comforting to her.

We picked up the ashes and paw print today and they're displayed in her room.

[livinitup]

vasc I’ve been following your story with your aunt and her dog for a while now and thought that I’d share how impressed I am with everything you’ve done for her. I’ve only heard and seen the smallest glimpses into her/your story and I am so impressed by how much you’ve done with such a tough situation. The move! Gosh the waiting to move, too (and her passing on options). And now you took the dog in with the face tumor. With the bleeding and accidents. And he had to be euthanized. You have been so kind and so willing (and what seems to me) patient with of of her tough transitions.

Your aunt is very lucky to have you. My grandmother shared her regret at outliving her family. It must be a very deep pain to outlive a favorite dog.

You are wonderful. You really, really are a wonderful person.

[vasc]

That’s so kind of you to post livinitup, thank you. My mother, Aunt’s sister, passed away 18 months ago after a terminal diagnosis. She’s my favorite aunt and the last close relative I have alive (there are others but not emotionally or physically close).

I’m estranged from my Dad, so I’ve delegated his elder care to my brother.

[minzy]

We got my dad to the family wedding two weeks ago which was a big highlight. Then my sister and I were able to do another spontaneous whimsical thing with him which had meaning to all three of us, which was also great. His wife, who had been insistent in her position in taking care of him alone, lasted only a few weeks total after essentially kicking us out of her house. I cannot begrudge her that part at all; his care was impossible for anyone to keep up indefinitely. Fortunately, a nursing home slot opened up. He had a rough week leading up to his move there (which included an ER visit due to something I think he only dreamt). He has had a few weird delusion-type things and I am wondering if it is “just” chemo brain (he is still getting palliative chemo), another stroke, or if perhaps he has actual mets to the brain. :/

My younger daughter and I have come out to check out the new place. I think the change from when she saw him last (earlier in the summer) was jarring to her. Yesterday we spent a few hours hanging out and wheeling him around the grounds. It seems like a decent enough place, though it’s a little disconcerting with many residents appearing catatonic and there is one who yells “Help me!” all day long. Of course, my dad can’t hear much (especially after the hearing aid box-roof of the car situation of this week because of course that happened… so only one works…) but he can hear the neighbor screaming. 😢 Hopefully today is a better day but yesterday he was so muted and dulled, very slow moving, and barely could stand. However, he was as particular as ever and he did try on sweatpants for us. (Who knew that Snoop Dogg makes sweatpants!?)

Today we are going back to celebrate his birthday. I cannot believe he’s made it this far. Unfortunately his twin isn’t feeling well enough to make it out but we may try to see my uncle on our way home.

I still have to square up my dad’s property transfers and he’s made that more complicated by wanting a life estate so that may not happen in time. I’m not sure when I’ll be back but I am guessing it will be soon.

[Wallflower]

Mom had a fall in the night either Friday or Thursday night. When I saw her yesterday, I was so focused on getting groceries to the kitchen and filling the bird feeder that I didn't even realize until I walked back through her bedroom (i.e., the dining room) and saw blood all over her pillow. She's got a black eye and a cut on her head, hidden in her hair. No signs of a concussion, thankfully. And of course, she didn't have her alert necklace on, as it charges overnight. Also, and probably more importantly, she only wears it occasionally because she's convinced that all it does is send out a sound so other people in the house can come find her. And if she's alone, what's the point?

I'm told her that this is a very big step towards us deciding that she can't live alone anymore. I'm redoing my downstairs bathroom soon so that she can use it more easily, so we can't push a decision until that's done, but I think we are a big step closer.

[madDawg228]

For those of you ending up with a lot of paperwork for being a caregiver, estate stuff, etc: how do you file/store all the physical papers?

I'm currently driving myself crazy finding a good filing system for my parents' estate, brother's guardianship & my own paperwork. I can scan some things, but I need some hard copies of a lot of the paperwork.

[mrsslocombe]

madDawg228,

My husband just has crates with hanging file folders (about the size of a milk crate). He has one folder that he carries with him that has the DNR, POA, etc. It's easier for us because most of my ILs paperwork is still at their home, so it's not interfering with our own paperwork.

He organizes the crates alphabetically, but each crate has a designated "theme" so all the house-related stuff is in one, the medical stuff is in another, etc. He's down to three crates, it had been more than 20 at one point. It took him months to go through and really pare it down.

[minzy]

Oct 9, 2024 9:38:22 GMT -5 madDawg228 said:

For those of you ending up with a lot of paperwork for being a caregiver, estate stuff, etc: how do you file/store all the physical papers?

I'm currently driving myself crazy finding a good filing system for my parents' estate, brother's guardianship & my own paperwork. I can scan some things, but I need some hard copies of a lot of the paperwork.

I need to do this too and have been contemplating an old school file with folders. I think my poor husband is starting to get exasperated at the growing paperwork piles that I have in a few different places now… 😐

[madDawg228]

mrsslocombe Thank you for responding. That sounds like a good system.

[pinkplasticdoll]

My dad is having incontinence issues and refuses diapers, when he wets himself he is drying the clothes on lamps and has burned holes into multiple pieces of clothing. He doesnt have any medical issues and it seems to be just the progression of the disease. Also, my brother is in denial so thats a barrel of fun.

[minzy]

Oct 9, 2024 11:24:45 GMT -5 pinkplasticdoll said:

My dad is having incontinence issues and refuses diapers, when he wets himself he is drying the clothes on lamps and has burned holes into multiple pieces of clothing. He doesnt have any medical issues and it seems to be just the progression of the disease. Also, my brother is in denial so thats a barrel of fun.

Can you just send him some briefs (or “undergarments” as I have trained myself to call them)? My stepmother actually pulled me aside once and told me to stop calling them diapers. I didn’t think my dad, the patient, gave a shit, but I asked him, and he said he would prefer I not call them diapers, either, so for his sake, I don’t. These are pretty good to the extent I can review such things without actually using them myself:

www.costco.com/depend-fresh-protection-plus-incontinence-underwear-for-men%2C-ultimate-absorbency.product.100664458.html

[jac]

pinkplasticdoll,There are cloth briefs that look like underwear. Short of that, can he ask his doctor about the pills that help you pee less? My dad uses both.

[litskispeciality]

Big hugs again everyone.

vasc , I agree that you've been such an angel on earth to your aunt and her poor pet. I think you've gone so far above and beyond to do everything you can.

pinkplasticdoll , my dad's now former home health aid eventually talked to me about replacing all of my dad's brief cotton underwear to Depends, which look a lot like underwear. I guess what helped me is that my dads memory was so gone I think he eventually forgot he had regular underwear.

Speaking of which that reminds me I have to get more to my dad's memory care facility because they don't provide those. Trying to take the high road that it'd be hard to track for so many residents in different sizes, but my dad's place is literally $12K a month so at some point I want a little more for the price.

PDQ PDQ

It seems my dad was accidently completely taken off of Ativan that he was taking at least twice a day most days. Apparently now most of the staff only give it to him if he asks for it. A nurse at my dad's now old PCP office talked me down from something else and then reminded me that I'm empowered to speak with the staff about making sure my dad is offered the med without having to remember to ask since he has dementia...but I shouldn't have to do that. I also actually got a hold of someone at his Geriatric Psych place within a week (this is HUGE for them) about prescribing a new anxiety med, but it's up to me to call Memory Care to schedule an apt when Geri Psych does their next rounds. I have a message in to medical at MC because they're sick of my calls and don't pick up. I feel like I'm spinning my wheels in burn outs.

Oh and it appears memory care only has one person over night so my dad's having a lot of bathroom accidents. Again trying to take some high road that health care is super understaffed and places like memory care pay super low, but I'm quite worried for my dad's safety. Weekends are very short staffed too and it's been so hard to see my dad such a mess. The nurse outside of MC seems to think that I'll eventually be able to take a step back, but for now I have to keep advocating for what my dad should already have.

My husband's so frustrated with the memory care place, but I'm trying to tell him we have no other options. I can't go through a move again, nor will my dad be able to handle it. There were no openings when my dad moved so there is literally no where to put him, and I worry the other places would have lesser care. I keep trying to get to support groups, but I'm just so drained by the time they happen I don't go.

*ETA: My dad's Ativan Rx was written "as needed" and it was a huge struggle pre-memory care to get him enough medicine. No one was understanding or monitoring him taking at least 2 pills a day. There was a plan with the Geri Psych to get my dad used to Lexapro, then eventually slowly take him off of Ativan, but that fell off with the move. I just feel so bad for my dad if he had any withdrawal symptoms. He asked for the A when I was there last week, but I don't think the caregiver understood and/or gave him a pill. Again he shouldn't have to ask for it as at some point he'll forget he even has a script.