Aging parent and caregiver check-in Sept/Oct

[litskispeciality]

Do we want to start a new thread? Let's try to keep this PDQ unless it's a general quote. Giant hugs in advance because this stuff never gets easier.

[litskispeciality]

My dad's been in Memory Care for almost 2 months. I was somewhat prepared for a potential decline from threads on here and talking to a nurse at his (now old) PCP's office, but it's so different when it happens to you. In one sense my dad is moving a *little" better due to more (consistent) OT and PT, but memory seems to be going at lot more. Dad seems to understand he's in a facility, and I think he's really sad. Thankfully I don't think he's mad at me for "putting him" there, but I think he misses his old independent place. I really hope the staff takes my dad to as many activities as we were promised upon move in as I don't see it on weekend visits, but maybe they're shorter staffed?

I truly don't mean to be rude when I say this so please go easy on me. My dad's still able to communicate pretty well and he's a very social person. I think he's having a hard time with the mix of cognitive states in different residents (not their fault, it will happen to my dad too). When I left after my last visit they had my dad sit at a lunch table by himself because he likes to watch TV (he does) and he doesn't have one in his room. I know they're doing what they see as best for him under the circumstances, but I wish he had more people to chat with. That really perked him up when he'd sit with certain friends at his old place. Nothing I can do, but it just hurts my heart.

I'm still fighting with my dad's insurance to update his PCP from his old doctor to the current provider at MC. I get 3 - 4 calls a week from the old PCP asking if I had any luck. Old PCP's office is going to have the president of their company call because I can't get anywhere, nor could one of the medical directors at MC calling the provider line. I sent the POA docs however they weren't notarized, so I think I'm going to have to send them again (with notarization), then wait 7+ business days to process the new document. Totally aware of laws, but insurance agent keeps saying "can we just talk to your dad to have him authorize that you (I) can speak and make changes?" But we've all explained he's in MC so no he can't. Insurance actually called the MC place while I was on a call, but MC said no and transferred him to the medical team voicemail. I'm just sick of the run around and don't have time to chase it anymore.

Finally, pretty sure I'm in full caregiver burnout for whatever level of caregiver you can call me for not living with my dad full time. I tried to go to a support group through MC the other night, but I was so tired after work and 3 long calls with dad's insurance I skipped to recharge. I'm going to do some research and see if I can sign up for Better Help sessions for counseling. Thankfully we're still aiming for a vacation before the end of the year, so hopefully that can provide just a small relief.

Huge, giant hugs to all of you in advance. I don't want to tag anyone, but a lot of you have been on my mind, and I hope your situations are somehow getting better/easier.

ETA: I don't have access to my dad's health insurance online. I have his laptop but we didn't unfortunately get him to do a password manager for everything. Please everyone safely update your passwords or write them down in a safe place.

[circa1978]

Well, I just called my 72YO mother, who is generally pretty with it, and she picked up and said hello and then screamed I'M ON THE PHONE and hung up on me. ?? She texted me later and said she was talking to someone on her iPad and got confused when the phone rang, so. Sigh.

[jordancatalano4ever]

Well this thread is timely and helpful. My mom didn’t eat for two weeks and ended up in the hospital because she was so weak. Didn’t find out until I called three times this week and no answer. Finally called my dad (who never calls) and he was all oh she’s in the hospital no biggie. 🤷🏼‍♀️
Then found out the same day my MIL was having a stent put in her heart but my in laws NEGLECTED to tell us and found out morning of from BIL. Poor thing had spinal surgery to fuse discs and can barely walk and has Parkinson’s but FIL refuses to move from their two story house so she has to slowly climb up and down everyday. There’s no full bath or bedroom downstairs but he refuses to acknowledge what a problem it is. I’m outraged about it but my husband won’t push because the stress flares his MS.

Getting older SUCKS. Thanks for creating a space to vent and share.

[stemmie]

Hugs to all.

jordancatalano4ever, I've noticed among the elders I know that many lose all empathy for others (even absent dementia for which this is an early symptom) and it becomes all about them. Your poor MIL. I hope her stent procedure goes well.

circa1978,ugh. My mom and her phone are something else, too.

litskispeciality, Memory care is such a hard thing to get used to. Especially for men as the gender ratio is skewed so female. The best ones allow residents to age-in-place but that means most folks don't get placed until they're beyond care at home so there won't be many folks in a similar level of function with whom he could interact. My dad was very chatting until the end and recognized the others as very impaired so he only spoke with staff. They tried to get him into activities, but he was never a bingo, beaded bracelet kind of person-- musical performances were the only thing he would routinely attend.

My mom's been a lot lately. She had PT and a doctor's appointment last week. This week she had a surgical consult with urogynecology, eye injections for her AMD, flu and COVID vaccines and got her hearing aid repaired. And I took her shopping twice. I'm tired.

[vasc]

Primary caregiver to aunt, age 81 and blind.

We are approaching the 1 month mark for her move to Assisted Living. From the outside, I think she’s doing great - she’s learning names of her neighbors, attends two meals daily where she sits with the same group of women (they staff call them the Golden Girls), she’s attends programming, and she even started physical therapy this week.

When asked how she’s doing, however, she will quickly say she’s terribly homesick and wishes she could return to her home tomorrow. I know I keep waiting for her to say “You know, this place isn’t half bad.” She very well never will.

Two weeks ago she had her first visit by the staff PCP to establish care. We discussed her mental wellness being her biggest health hurdle at the moment (vision too but thats stable….). They referred her for a geriatric psychiatrist. I happened to be at that appointment also (virtual from her room) and she told the geriatric psychiatrist that after her dog dies she hopes she doesn’t live much longer. Basically a life without her dog won’t be worth living.

[minzy]

Such huge hugs to each and every one of you.

My dad (stage 4 pancreatic cancer/stroke) is still chugging along at home with his wife in the house only she owns. The latest development is that his wife threw a tantrum and functionally kicked my sister and me out of her house. I don’t think it’s tooting my own horn to say we provided him with exceptional care. One or the other of us had more or less been living there since late April and we had mapped out a schedule between us through October to continue to provide him coverage. I have seen his wife spin it as “the girls had to get back to their families” but that is not how it went down. Although I am approaching it with the mentality of a group project with the semester not yet over, I will never forget the venom she spat at my sister. Simultaneous to her being nasty to us, she fired the home health service we put into place, and he was discharged from both PT and OT. Her daughter is nearby, but his wife is otherwise managing him entirely on her own, which I think is absolutely unsustainable for any length of time. I basically just sit and wait for the call that he fell or has otherwise been hospitalized. They have put in an application for joint assisted living but I have no idea how long the waitlist is.

I am going back Wednesday, probably driving the 4.5 hours (depending which car I take) after a full day of work (trying to finish a complicated issue before then) and being present at a Girl Scout meeting. His step granddaughter is getting married and I agreed to take care of him at the ceremony so the rest of them can focus on their other family/the bride, etc. My dad and I are meeting with a lawyer licensed in both states (where my dad lives and where he owns property) and I am hopeful we can split my dad’s property with more specificity so it is a clean chop from his wife and her family at his death. We are going to try to avoid probate altogether. Fingers crossed. I really liked the guy I consulted with so hopefully we can get shit done and kind of fast.

In the meantime, I miss my dad. Since I now am only talking to him on the phone and he can’t hear well, and she is always there… she is always there. The recent CT scan showed lesion shrink and the liver function tests were looking better for a minute but his oncologist said he would not describe my dad’s response to the chemo as “robust.” More is still planned though.

My husband is glad to have me home and I am trying to spend quality time with my girls. The one is currently living her best life with friends in our basement for a sleepover; the other told me yesterday there is a boy who is “sweet” to her and I’m trying to be a cool mom and not outwardly show the “aaaah!?!&)&?” that I’m feeling. I’ve also been showing my beautiful face in my office again so trying to bank some brownie points there. But I’m exhausted.

[midwestmama]

Huge hugs to all.

No word if MIL actually rescheduled her driving simulation test or not. I'll have to ask DH if he's heard anything.

I learned recently that most MC places (at least in MI) require some level of private pay for 2 years before they will accept Medicaid payments as full payment. The acquaintance who shared this with me had just moved her mom to a MC place, and it's $4700/mo for a private room. MIL's only asset is her car, and if she sold that, she could pay for about 1 month of MC. So I have no idea how she'll even be able to pay for the first two years, even if she went with a shared room, which is a bit cheaper. DH and I can't afford an extra monthly payment in the thousands, nor would DH want to pay it.

[livinitup]

midwestmama I don’t know if the information you received about a required 2-year private pay is accurate or not on face value without details. It could be more of a spend-down of assets issues. The 2-year mark tracks more with the average amount of savings/assets a retired person has to pay for MC out of pocket before they are out of funds and they qualify for Medicaid. If your mom does not have a house to sell or money in an account, then she may be there already.

[midwestmama]

Sept 16, 2024 9:32:03 GMT -5 livinitup said:

midwestmama I don’t know if the information you received about a required 2-year private pay is accurate or not on face value without details. It could be more of a spend-down of assets issues. The 2-year mark tracks more with the average amount of savings/assets a retired person has to pay for MC out of pocket before they are out of funds and they qualify for Medicaid. If your mom does not have a house to sell or money in an account, then she may be there already.

Oh, good to know, thank you, livinitup!  We will check into that for sure.  I hope it is as you shared.

[mrspez07]

I almost chimed in last month, but now I’m in the thick of it. Mom has MSA, which is a cousin of Parkinson’s, so slow deterioration of motor skills and functions. She’s been maintaining for quite awhile until Aug. she had 2-3 UTIs and they made her mentally off. Only at these times would she insist she needed to go to a nursing home, and we would talk her out of it. She has also probably been depressed for a long time, but it had become more apparent with her lack of interest in the grand kids when they came over. Her mobility had also deteriorated and my dad was having a harder and harder time helping her get to bed, the bathroom, etc.

She couldn’t get up last Monday and went to the hospital. Had an infection in the bladder, and blood clots. She’s still there a week later while we look for a nursing home with hospice overlay.
I spent the weekend managing my dad, visiting places and trying to be there for my kids. I’m exhausted, and work is so blah right now.

The one we liked best was much further across town than the one closer to where all of us live. But, we’ve decided to go with the closer one. In reality, she’s going to be in a bed in a room most of the time, and not taking advantage of all the fancy supplemental features of the place, and convenience will be important. I hate that we couldn’t keep her at home, but she insisted this was what she wanted. Honestly, she’s just ready to die.

[stemmie]

livinitup,

That "2 years private pay" thing is the case in a lot of communities. When I was shopping for my dad's MCF, this was discretely mentioned at a couple of places including the place we chose. Because of this practice, getting into a nicer place on Medicaid directly can be a challenge as spaces go to current residents.

The other piece is that in some states, Medicaid will only fund skilled nursing not memory care. I'm in PA which doesn't, so when shopping I found a MCF that was owned by a company that owned the SNF next door as a different entity-- they offered reciprocal "credit" if needed. The other option would have been a CCRC, but the one mom liked didn't accept dad after evaluating him.

midwestmama, It's eye-watering how much these places cost. $4700 seems quite low by today's standards. Dad's MC outside of Philadelphia was $6800/month 6 years ago and my aunt outside of Boston's was almost $9K/month. COL plays a big role in pricing. Another thing to watch for is being lured in by a lower tier of care pricing and then having the facility upgrade them to a higher level at a higher cost. Both dad and aunt were on all-inclusive pricing except for incontinence supplies, medications, hair cuts and outings.

[killercupcake]

67 y/o dad with Alzheimer’s. Mom is primary caregiver but I obviously get all the updates as I’m the only child.

They got into the Cleveland Clinic here in town last month. We’re waiting on the authorizations from my dad’s insurance and then he will go in for another MRI and a PET scan to see how bad it is.

He was also diagnosed with latent TB so he’s been on antibiotics for about a month.

But he seems to be declining very quickly all of the sudden. He wasn’t oriented to place last week and forgot who my mom was for a bit.

He’s also been getting aggressive which is not my dad at all.

My mom keeps sending me links to articles about things that cause memory loss and I get why she’s doing it, because she wants a fix, but I really need her to accept reality so we can all move forward and figure out a plan. It’s not the antibiotics, it’s not some random thing, it’s not his rheumatoid arthritis (though him never getting it treated when he was diagnosed almost 20 years ago probably didn’t help) - he has Alzheimer’s. It runs in his family. This is it. It’s been this way for about 4 years now.

[litskispeciality]

Thank you stemmie,. I appreciate everyone's honesty and feed back here, I've learned a lot. I'm sad to see so many things are "normal", but also somewhat comforted as I really feel my dad was mis-diagnosed and often wonder if he could still be independent just a little longer with better early treatment. Nothing we can do now.

((( vasc,))) (((mrspez07,))) (((midwestmama,))) ((( killercupcake,))) and everyone. mrspez07 I want to kick her in the shins on your behalf. I know this stuff is REALLY hard and takes a huge toll, but she can't treat all of you like that. I hope you can get some rest, then see him again. Ugh, I'm so sorry.

Memory Care is so freaking expensive. The advocate we worked with warned us Assisted Living in my dad's general area would be $9K and we're paying almost $13K for MC. She also warned us as mentioned above that some places sell you on one price, then add on a lot of fees once you're in the door. Again the whole system needs an overhaul because people can't afford it now. We'll never afford it when we need it.

[karinothing]

My dad is 88 and had heart surgery to fix a leaky valve last week. We live 2K miles apart but my brother is there and doing a good job taking care of him. My dad refused PT or any extra hospital stays so he went home early. My brother goes over there every day after work to check in on him AND finally convinced him to get a cane. I am hoping that the surgery means he will have as little more energy now.

[vmars]

My dad suffered a severe spinal cord injury in July and is now quadriplegic. It feels like he aged 20 years in an instant. He was completely independent and in good health before his accident. He came home from rehab a week ago and they have a live in aide. Unfortunately, the aid doesn’t get up with my dad so my mom is up every 2 hrs to try and shift his weight, etc. she is totally sleep deprived and I am sure she is not doing everything the way it needs to be done. She is 74 and has nerve damage in her back. We are looking into a night nurse but it may end up being too expensive. We think if he goes to a nursing home he will completely give up. They don’t qualify for Medicaid and Medicare doesn’t cover any of this so they are paying out of pocket almost $400/day for a live-in.

[ProfessorArtNerd]

Im going to start with the good- my MIL had both of her knees replaced this year. It was a tough recovery both times but now she’s back to watching my toddler while I work! She can walk with him and chase him and sit and read books. And even though he hadn’t gone over pretty much all summer, he was so happy to be at their house

My aunt (dad’s older sister) is fine, physically. But her mental state is just awful. Unfortunately, she never got me the paperwork to establish POA before her stroke. She’s definitely not of sound mind- she doesn’t know her address or what year it is. The worst part about her being strong physically (sounds weird. but you all know what I mean) is that she keeps trying to leave. They might have to Baker Act her back to the hospital. And this is all happening a thousand miles away.

And if you saw my weekend random, my mom is being really demanding of my time recently as well. She’s having a bunch of memory slips too. I hate this

[cricketwife]

My mom is in a “boutique” care home, meaning small, not fancy. It’s a true house with 4-5 ladies in it, all with some sort of dementia. It’s been a great place for her (the first place was awful and I moved her out to here.) But the best caretaker has recently quit, following tow of the ladies falling (not on her watch). So one is definitely in the hospital. I don’t know if the other is also or if her family moved her out. Anyway, for the past few weeks, it’s only been my mom and one other lady. The care has deteriorated, even with just two. And I am very worried that the are going to be financially insolvent and that I’m about to get an eviction/were closing letter and scramble to find another place for mom. And it’s heartbreaking because I’ve visited so many places around here, talked to an attorney, social worker etc and all the places are awful. This was by far the best option. I’m hoping that I’m worried for nothing. But even if she stays, the care has significantly declined. Argh. It’s so hard.

[Wallflower]

(((Hugs))) for us all.

My mother is 92 and still living at home, with a lot of help from my brother and me. Overall, she isn't doing too badly but she does have memory issues.

But the worst, most horrible thing has been that my sister passed away two weeks ago. And Mom forgets - oh dear GOD, I cannot think of anything more horrible than reliving that news. In the last several days, she seemed to have internalized the information so if she forgot in the moment, a small reminder saddened her but it was just a reminder of something she knew. Then yesterday, she called in tears to ask if I'd heard the news. It was all new, all fresh. Thankfully, 90 minutes later, she seemed to have let it go and was back to living in the moment, happily.

[minzy]

Oh Wallflower I am so, so sorry for your loss and your mother’s reliving of it anew. That’s awful. 😢

[litskispeciality]

Oh Wallflower, I'm so sorry for your loss. I can't imagine how much harder it is on you to go over it again and again like that. If you haven't already please be sure to get some help for yourself whenever you can. Many here have recommended checking your companies EAP, and I'll echo that as well. Oh big huge hugs.

[janegold]

Has anyone lost a parent after a long illness and then had the other parent seemingly start to decline immediately? That's what happened with my grandparents, and I think we're going through with MIL. FIL passed in June after a battle with dementia/ALZ, and MIL was very out of it and confused for a while after. I chalked it up to her being overwhelmed with grief, stress and exhaustion.

It could still be all of those things, but I'm starting to worry that maybe she's going through real cognitive decline, as well. Just an example - she received her first survivor's check from FIL's pension a few weeks ago, and called us to say she was depositing it, which she did. She called H panicked yesterday that she has no money and needs to buy milk (I've never ever seen her drink milk...). I check her bank account online because I know she deposited the $7k pension check a few weeks ago; it's all still there. No idea why she thinks she has no money, but H calls her back to tell her she has plenty, doesn't she remember depositing the check? No, she has zero memory of receiving or depositing the check. And then, this morning, she calls H again asking for $100 because she is going to lunch with a friend and has no money. Doesn't remember the conversation from yesterday at all, still has no memory of receiving or depositing the pension check.

Ugh. I'm not ready to do this all again....

[janegold]

Wallflower, I'm so sorry. That sounds terrible.

[vasc]

Aunt dog, the one with a tumor, has been making potty messes on the floor of her apartment overnight. I’ve been dreading that the personnel would call me to say the dog can no longer live there, and today a director finally did. I broke the news to aunt and she is devastated. She said she will have her euthanized (age 14 with a tumor, definitely the right decision) but is adopting the narrative that the AL is forcing her hand. “We never should have moved here…”

[mrspez07]

janegold
Find a way (urgent care, PCP) to have her checked for a UTI. Not saying it’s not memory stuff, but if this seems very atypical, might be worth eliminating that as an issue. Those things make women (especially) mentally off.

[RitzyHeifer]

Sept 16, 2024 12:39:47 GMT -5 midwestmama said:

Sept 16, 2024 9:32:03 GMT -5 livinitup said:

midwestmama  

Oh, good to know, thank you, livinitup !  

In a similar situation with my MIL and have found it varies wildly state to state. The county “Council on Aging” (called something different in different states, but googling that term usually gets what you want) can connect you with a Medicare expert who can help guide. We were able to find resources where MIL lives and where we live and both agree and gave sound advice.

in our case, MC in our state covers assisted living after the spend-down but in MIL’s current state only pays for full nursing home care. …. None of this matters now that MIL has dug in her heels about staying in a 3500+ sq ft house on 70 acres and can care for none of it, let alone herself but I digress (out of frustration).

[RitzyHeifer]

Wallflower , sorry to hear of your loss. Big hugs here, and lots of thoughts with you.

[RitzyHeifer]

Sept 18, 2024 20:28:02 GMT -5 vasc said:

I’m sorry! Also recently been through something similar with MIL is at home yet, but it was so much more complicated with the dog in the picture. Such a great companion but poor pup was so physically unwell and causing such practical problems like potty messes, grooming time, etc

[stemmie]

Wallflower, I am sorry for your loss. My sister had died years ago and as dad's dementia progressed he became confused about whether she was OK, sick or dead and asked after her constantly. It was hard. A dementia-educator suggested we use a "therapeutic fiblet" telling him she was "busy at work" or "on vacation" if he couldn't recall after being told once after it happened. She said it was kinder to tell him what he needed to hear than the truth. YMMV-- this wasn't a fresh wound for me, so it was presumably much easier.

janegold, This sort of thing happens a lot IME. I agree with the other poster who suggested a test for a UTI. My mom's (maybe MCI/no diagnosis yet) been hospitalized twice in the last year for symptoms triggered by a "silent" UTI-- the first time she was combative with BP 200/98 and the second fatigued with a BP of 98/55.

That said, it's also common for both partners in an elderly couple to have some form of dementia. Because different dementias have a different feel, personality and rate of progression, families can miss symptoms in the more functional "caregiver" spouse. in such long-term relationships, partners, even those with severe dementia, seem to scaffold the ability to function in each other-- remove that and it all goes sideways.

[stemmie]

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.