AGING PARENTS

this week my mother used the actual phrase "a knife in my heart" when I asked her to stop telling me how terrible I look in selfies and that I shouldn't take those kinds of photos, or at least share them with family.

Is your mother's name Livia?

sounds like a healthy boundary to set to me. those comments can weigh on you over the years even if in their mind it seems innocent or 'typical mom comments'.

mom gets on me about the way I dress and i'm like "I'm 42"

yeah, my brother gets it all the time too, your haircut doesn't look professional, you're being uncouth, you don't look nice in those clothes, you should think about how you come across, your kids keep pulling gloomy faces in photos and I would like you to have a word with them, you should never share a picture where you look that terrible (in response to a pic of me and my partner happily rock scrambling at the beach in winter). Had it for years. I'm 53, he's 49, just maybe we are pretty on top of our presentation and interaction with the world. And when I call it out, she's "devastated" (literal quote) that I could imply that she is anything other than purely supportive and positive, to question it is the occasion for said utensil in said organ. Thank god it was an email because the Livia reference would have surely caused a visible reaction on my face.
And holy shit Neando, if anyone was due a break ... fantastic news.

your mom and mine must have run in the same circles. when in reality they should be happy you feel comfortable being open with them. otherwise you get kids that grow into adults that talk to you in single word sentences and speak through gritted teeth and tell the real truth to your therapist.

and thanks!

My mom got moved to level 2 memory care this week which my sister is protesting. But this same sister disagreed strongly with me when I said mom was having serious memory issues 2 years before mom finally got diagnosed so eh whatever. I'm generally very happy to be living thousands of miles away and never visiting and leaving those judgements to the professionals.

i had to tell my parents both point blank that i did not want their feedback on my physical appearance. their response was "we made you!" and i replied that i did not care, that it was my body/appearance and i was not interested in their opinions.

kind of a damper on the good news from yesterday, after weeks of trying without success to get mom to treat the billing thing with urgency, the thing I predicted happens, she gets told dad owes $1500 from his social securit yfor July and August, and she is acting panicked now.

I wrote back a long, stern message saying this is exactly why I told her to get moving on this and that her inaction forced me to get involved after I had told her I could not take this on, and now she is acting shocked by something that should be a surprise to nobody. told her I loved her, but that she needs to get on top of this.

I won't see that refund money from amended taxes for 4-5 months based on current timing, and I cannot foot the bill. I have an applicatio nfor a grant at my company's help fund but I have no idea when that will show up.

it will be solved one way or another (I'm not gonna let dad get evicted, and I predicted mom would fuck this up so I already have some other things in motion) but it's just the lack of listening to me that frustrates me.

xxp LL I think that is perfectly valid, and I am pretty scrupulous about only saying positive things to my daughters (which is not the same as no feedback, I realise). Life is hard enough without another set of arbitrary standards to comply with.

I really don't get the impulse of parents to criticize their grown children's appearance. Sure, I tell my 13-year-old to brush his hair (he wants to wear it long, fine, but keep it minimally groomed), but the adults? What's the point? They all have their own style and it's really none of my business. I think they all look great.

My mom used to absolutely rake my clothing choices and I mostly ignored her, but managed to make it stop when (in front of her friends) I told her, ‘one of us gets to write for Harper’s Bazaar and Vogue, and it’s not you.’

For me it's less about disparaging comments than the abundance of appearance-based comments themselves -- it felt like my value was tied up with what i look like and it made me feel like they didn't see me at all, they only saw what i look like. It felt like the way i looked was the primary thing that mattered to them. when it occurred, the disparagement was disguised as "just asking questions" type pass-agg behavior when it did come. "so...what made you decide to cut your hair so short?"

my answer to that type of question was always "idk" because i do not owe anyone an answer about my stupid hair as a middle aged adult. i also do not have any witty or scathing retorts so i go with "idk"/DNAQ

it's a thing parents/moms do that I wish they wouldn't. one time in high school, I went to church looking odd (I wore shorts and black socks with sneakers....I had no style). I got home and mom flipped out on me, like got angry and said "do you want to look like a DORK?". she was humiliated that I went out that way and I was really hurt by it because literally nobody gave a fuck but she was harassing me over it.

today she keeps telling me to stop wearing heavy metal shirts and I'm like this is the way I dress and feel comfortable and I don't care what the fuck people think about it, why do you?

so I had to break down and start a GoFundMe because although dad isn't *yet* going to be evicted or anything, if mom doesn't furnish the money to the nursing home eventually, he will be, and if she does and she can't pay rent, then *I* will be evicted.

so I start it and my brother refuses to help me share it because he 'doesn't feel comfortable'. so I had to respond 'hey dude, uhh...this affects *me* too, not just mom. I'm near bankruptcy and do not have the savings to pay this myself, I will be out of money and unable to pay rent in a few months if I do that".

literally tired of the effort I have to put in to get anybody to do things.

part of the reason is he mistakenly thought the room and board was free now under Medicaid and still doesn't get the "has to give up $784 of his Social Security that mom used to use to pay bills and this calculation is also wrong by almost double but we can't get traction on fixing it".

Damn, if my brother pulled that, I'd tell him my foot up his ass would feel a lot more uncomfortable.

yeah i'm like boy is it easy to be prideful when you aren't the one impacted by it.

I did find that there is some taxpayer advocate group that can apparently help you work with the IRS to get manual amended return expedited so I'm going to try that. getting an extra $8k in less than 5 months would be a godsend . getting it at all is a relief though.

the problem is now solved. for privacy i'll not go further than that but I know some incredibly supportive people is all I'll say.

I feel the most relief I've felt in some time.

WOOO YEAH

Excellent news, Neando. Pat yourself on the back for that one.

That is very good news.

Dad's in the ER. he can't swallow basically.

Only happened because I kept on the nurses when I observed dad unable to eat.

Sigh

thinking of him and you

thank you tabes. so he has an infection and severe dehydration (because they neglected him this week). he's doing a lot better now that he's on an IV and antibiotics, but my mother and I are livid an I've already lodged a complaint and filing one with AHCA right now.

He's stable, in PCU (one below ICU).

Possibly feeding tube time :(

But he's severely underweight. 122 pounds as a six foot tall man.

Investigating other nursing homes to move him to ...

It all just got realer. I was a bit naive about what a big step a feeding tube is, but also...that dad might not even want it. The doctors have urged us to be cautious and consider the possibility of...hospice.

To do that, we have to ask a lot more questions. But today was the first day I looked in dad's eyes and realized we may be nearing the end.

Mom and I are sobbing and consoling each other in the ER

Oh, Neanderthal, that's a real tough thing. Wishing you and your family the best navigating this.

Man, I am so sorry. Hang in there.

But today was the first day I looked in dad's eyes and realized we may be nearing the end.

After all your struggles to maintain him in health that's a hard (and huge) realization. Glad you and your mom are pulling together on this. If your dad is anything like mine was, he needs to hear that your mom will be loved and taken care of in his absence. That will free his mind to think about how much he's willing to endure to stay alive. Much love to you and your family in this painful time.

Sorry to hear this, N. I just went through this with my uncle, who passed in July. I visited him in the hospital while he was still speaking and watching TV, on a Saturday. He passed the following Monday, will both my cousins (his daughters) there, listening to Merle Haggard.

When I saw him, he was still talking about wanting to take a roadtrip up north to see his old haunts.. it was clear that trip would not likely happen, but I was still helping him plan and offered to drive... it was pretty heartbreaking

oh N, thinking of you and your dad and mom and sending you good feeling.

I send you my condolences and sympathies.

Yeah, best to you and your family.

Keeping you all in mind, Neando, and sending hugs across the miles

Take care Neando — you’re def not alone in going through this. My dad went to hospice last September and passed in May. My sister in law (not even 50 years old) went from chemo to hospice in a matter of weeks and then we lost her within a few days. It’s all a lot to take in and deal with.

Personally I think hospice can be beautiful and freeing, and it also sounds really scary to most people. Glad to know you and your mom have each other.

Sending you and family my sympathies, neanderthal.

god i'm so sorry Neanderthal, i wish i had better words to help you and your family

you've been so good to your father, and you've fought so hard for him. he raised a wonderful man and must love you tremendously. i am so goddamn sorry.

my condolences to you as well, La Lechera -- that all sounds rough

So sorry to hear, both N and LL.

thank you so much everyone.

today felt like three days. but we got through it.

Personally I think hospice can be beautiful and freeing, and it also sounds really scary to most people. Glad to know you and your mom have each other.

very much so. I think dad would rather spend his last moments there than alongside a bunch of neglected patients in a nursing home.

it was a tough day for me as I had to play so many roles. gave the doctor his case history going back three years, there to prop mom up as she was faltering. she broke down saying "what am I going to do without him?" and it was so hard to hear that, but....she is resilient and is intent on not making decisions based on what would make us feel better but what would make Dad feel better.

Dad was an independent man all of his life. He fixed cars. He worked on roofs. He managed stores. he was strong and muscular. he has probably been in Hell for years because of losing all of that. I always told him "you took care of us for years - let us take care of you". but he never wanted that for us.

My brother, otoh, is being a right prick about things. I know he's scared and that's how it's manifesting, but he's expressing it in unhelpful ways.

we invited him to dinner to talk about things and he is very much not on board with Mom and I. he feels like we're rushing to 'give up', when in actuality, what we're doing is saying 'if all of the efforts in the hospital don't get him back to swallowing and eating again and restoring his lost muscle mass, dad wouldn't want a feeding tube, and we need to CONSIDER palliative care'. He seems to think even the consideration is a sin against Dad.

so at dinner, he kept interrupting mom and I, being rude, talking over us, nostrils flaring, eyes bugged wide out, saying "dad seemed ok to me when I visited", ironically saying mom and I were raising our voices at him, and then he said at one point that he thought we were in a rush to give up, and idk where I pulled it out of, but instead of losing my famous Neanderthal temper, I got angry (internally) and said outward "we all need to take a breath. every one of us here loves Dad early and none of us wants to lose him, and we're all scared. You (*pointing at bro*) have been interrupting Mom and I since you got here, and Mom has had a really tough day. I need you to LISTEN to me right now - after you listen, then you can offer your two cents". and he finally went silent.

We aren't even moving him to palliative care yet - the hospital wants to see if he responds better after his UTI is cleared, his BUN comes down, and he's more hydrated, and see if he can pass a swallow test there. but I told him point blank - even if he does, he has a BMI of fucking 16 right now. he's malnourished. we'd have to build his weight back up an that is no easy uphill climb. we can try it, but we have to consider the fact that it won't work and then the next step is a feeding tube, and....that could lead to more infections. aspiration. choking. pain. would he want that?

He's still not really on board. I'm trying not to be too hard on him because I know what this is really about - he loves dad, dearly. I don't doubt that. He's getting married in March. it means a lot to him for dad to be there. now today he's hearing not only might he not be there, he might not be with us anymore. that thought hit me today and it stung me too.

but we are also dealing with complex feelings like his, and we need him to quit using his fear as a shield, or expressing it outwardly towards us. as I told him - we're all on the same team. sadly I think this whole ordeal with dad the last three years has caused a bit of a fracture with my brother and I that I didn't think would ever happen and though it won't stop me from loving him or being there for him, is going to leave a lingering resentment that will resonate long after dad is gone. that makes me sad, but I am also a forgiving person.

thank you all again. Love you all.

♥

I'm sorry the family dynamics of this are so complicated and frustrating, Neando, especially when you love everyone involved and you just want what is best for your dad. Sending you love.

So sorry you are going through this, N. All my love to you & family.

so he has an infection and severe dehydration (because they neglected him this week). he's doing a lot better now that he's on an IV and antibiotics, but my mother and I are livid an I've already lodged a complaint and filing one with AHCA right now.

Yes it's infuriating. Our experience was that once we could no longer care for my father at home, the hospital's neglect was what killed him. That was the point where it stopped being a thing we could steer or navigate, we were being swept along and it was more of a struggle just to manage our own reactions and keep pace with the rate of change. Just the shock of losing someone in a matter of weeks to an easily preventable condition after breaking our backs and turning our lives upside down for years.

I hope it doesn't come to that obv, wish for a much better and different outcome for your dad and for you, sincerely. wish i had some helpful words or insights but i don't, though i know what you're going through and i feel for you.

Little more positive today. I got him to smile (I told him a poop joke). First time in weeks.

But I'm a sideshow. He got a jolt of electricity when mom arrived.

They're looking at constipation maybe being a cause of delirium. Nobody checked that yet as it wasn't part of his immediate emergency.

But, being realistic, despite him looking better I still think we're headed towards palliative care. It's just that perhaps he'll be feeling better when it begins.

My brother is relieving me and I am headed for time with friends.mucg needed

things dramatically improved since Saturday in a way that shocked my cynical ass.

there didn't originally seem to be much hope that clearing his infection was going to repair his cognitive impairment and unwillingness to eat. but one of the doctors also noticed he hadn't taken a shit once since being in the hospital and also noticed he was retaining urine, and decided to have his bowels looked at, and they determined he was severely impacted (again), and had him given enemas and a catheter.

I have to say, I've had my (sometimes major) issues w/ this hospital before, but the doctors in the PCU unit are on it. they've read his case history thoroughly, which is how they made some of these decisions, and...between that AND his underlying UTI/other infections clearing...he's restored to a baseline I haven't seen him at in months.

obviously I have to temper my excitement by saying - he is still extremely malnourished and the overall prognosis is still not great. BUT...he's talking again. in fact, more than he did in recent weeks. he's smiled quite often. He waved at the doctors when they left. and...he passed his swallow study and is back on solid foods, albeit in limited quantities at first. he's off of oxygen.

on Friday I thought we might only have a week or two left with him. now I'm slightly more optimistic.

Palliative care may still be the call. I would much rather him be in an environment where he's not neglected and anxious due to his living conditions, and where food isn't withheld because of fear of aspiration, and he's allowed to eat when/how often he wants. and so far, the hunt for new nursing home isn't going great - Medicaid beds hard to find.

but what matters to me is he looks so much more peaceful now. it was scary to see him Friday. he stroked my hair on Sunday, like he used to when he was still living at home.

also I asked him to point to the smartest guy in the room yesterday and he pointed at himself so....he has his sense of humor back ;).

as with all of these things, I expect the news to be akin to waves at a beach, with positive developments offset by setbacks, so I'm planning to just take care of myself the best I can, as is the rest of the family. the plan, as always, is to constantly show dad how much we love him so no matter what he's going through, he never feels alone.

<3

(btw, obviously by 'talking', I really mean 'occasionally repeating what we say or saying 'yes/no' in sotto voce', but he was barely doing that in the last month).

my test for him is me saying "quotes and quotes and quotes, add another quote -" and see if he responds "make it a gallon", since he's a Marx brothers fan. when he says that, usually I know he's doing ok. :)

so he's being discharged today due to his improvement. this created a big quandary, as we had nowhere near enough time to find a new nursing home, especially with labor day weekend, and we absolutely did not want him going back to the previous shithole. also, nobody prepared us this would happen, but likely because they didn't expect the improvement that happened.

we are leaning towards hospice. and I know how that's going to SOUND to everybody, particularly those who don't know how it works. we think, paradoxically, he will improve and do better in this environment than another nursing home. we also don't think he has a long time left in his current condition, as he's malnourished. and also, I know that about 20% of patients graduate from hospice to having a better prognosis on life, at which point we could find a much better nursing home with much more advanced time.

obviously this would be MUCH easier if dad could tell us what he wanted. but he has ways of communicating and he seems receptive to it.

our visits with him in the nursing home were miserable for the last month. mom came home crying at the way he looked multiple times. dad looked stressed. it was chaos in that place.

and the same conglomerate owns a lot of the nursing homes here, so would I trust them?

There is ONE nursing home I would trust sending him to - the very first skilled nursing place he went to. and guess what...it doesn't exist anymore. LMAO. someone else bought it. I'm not going to trust a changed ownership.

my brain keeps saying "you're choosing the easy option" which makes no sense because the 'easy' option is sending him back to his nursing home and then spending five months trying to deal with the guilt of watching him waste away there.

or an option that makes him comfortable and maybe allows him to gain some weight back and not need hospice anymore.

I don't know. I'm scared and tired....but my decisionmaking, mom's, and hopefully my brother's will be based on his experience, not ours.

sending y’all love and glad to hear his condition has improved, Neanderthal!

fwiw I have known people who have left hospice and lived for years after, as well as those who entered and were much more comfortable and at peace in their final months. do not feel guilty for doing what is best for his health and happiness and you and your family’s sanity

thanks!

so apparently whatever nursing home we get dad sent to, they'll be another layer of protection, going to that facility rather than it being in-patient.

the case manager did not want to help us initially find another place, saying it would be 'easier for us to do it on our own' even despite the fact it was Labor Day weekend and all of the admissions offices closed until today, but the hospice care leader asked her to talk to us and help with it.

if he has to go back to the old shithole...well...at least he will have the hospice care team assisting and consulting with the nurses there on his care, as well as helping with things that are getting overlooked.

as always thank you tabes - and thanks for that perspective!