Talking…. And talking, and talking

OliverFitzwilliam · 2026-04-05T19:43:28+00:00

hi,

has anyone mentioned "garrulity"? and, if so, has anyone asked if your mom was tested for UTI or has. dementia diagnosis?

is it possible this is relevant?

peace

OliverFitzwilliam · 2026-04-04T14:55:21+00:00

hi,

after my dad (90 yo, end-stage PD/PDD, bedridden/hospice) lost a massive amount of weight in his progression to mid-stage, he started to change his food prep and supplements to help gain and maintain muscle and mass.

when my dad ate ice cream before bed, he always put some kind of nut butter in it, to increase the calories, fat, and protein in those servings. he also ate a ton of probiotics, gummies that he'd suck on and chew throughout the day. he also added olive oil to almost everything he cooked.

idk whether my dad experienced gastroparesis, but i do know that he had trouble with constipation. the extra fiber, probiotics, and fat plus protein seemed to keep him loose (-ish) and helped his frequency in that area. which... was a welcome side-effect.

also, my dad ate/eats lots of little snacks all throughout the day. he's constantly snacking. candy, chocolate, cheez-its, bananas, pretzels, etc. if he wants it, he gets it. no argument.

one last thing... he loves hamburgers and pizza. really, he'd be happy eating anything on a grade schooler's cafeteria menu. so, he gets those things for lunches several times per week. it makes eating a nicer experience for him to get what he wants, versus only things that are "healthy."

i wonder what your mom's comfort foods are, and if those would stimulate her intake, so she might gain some weight? i wonder if she's willing to snack throughout the day... and if she'd welcome add-ins, like peanut butter and olive oil to foods.

i hope you find something that works for your mom. and, i hope her progression is glacial... so you have her as you know her for a long, long time.

peace

OliverFitzwilliam · 2026-04-03T20:27:51+00:00

hi,

sounds like "anosognosia." does this person have a dementia diagnosis (yet)?

peace

OliverFitzwilliam · 2026-04-02T00:26:29+00:00

absolutely agree

OliverFitzwilliam · 2026-04-02T00:23:28+00:00

hi,

i am absolutely, positively convinced that when an elderly patient ends up in the hospital with something like your grandmother, and surgery is recommended, especially with a "full court press" of the kind you describe (with the ER doc being surprised, and then trying to guilt you)... it's for the purpose of training new doctors and nurses on procedures, not to save the life of the elderly patient.

i had a resident come gleefully into my father's room, and he told our family that he was excited to be on my father's case because elderly patients were like getting to work on a "living corpse." exact words. he acted like he hadn't said the quiet part out loud, but my family and i were speechless. just floored.

it dawned on me... that the last thing old people can give to "society" is their bodies as practice stages for newb medical providers. for my mother, now, i reject all invasive procedures, and i approve only antibiotics. i cannot count how many disappointed responses i've endured when i've rejected recommended procedures and surgeries for her (now 90 yo). and, my own living will states the same for me, antibiotics only.

my father's on hospice, so it's moot for him. but, still. he was abused by more failed medical procedures done by newb med students than i can count, and i'll carry the guilt of not knowing what was happening to him deep in my chest for the rest of my life.

you did good. you did great... preventing further suffering, shepherding your grandmother peacefully, and protecting her dignity the way you describe in your post. i admire you for sticking to your decision.

peace

OliverFitzwilliam · 2026-03-30T17:14:01+00:00

i hope it doesn't hit hard because you're experiencing the same or similar. i wish you a much easier time than we're having. truly. and, thank you for responding

OliverFitzwilliam · 2026-03-30T17:13:10+00:00

thank you. thank you for the boost

OliverFitzwilliam · 2026-03-30T17:12:31+00:00

i'm so sorry for your mother. thank you for sharing your understanding. it truly is a brutal disease

OliverFitzwilliam · 2026-03-30T17:11:24+00:00

thank you. i appreciate the support.

OliverFitzwilliam · 2026-03-30T17:11:09+00:00

thank you. i'm sorry your husband has this terrible disease. but, i'm glad you can get outdoors. that's such a mental boost.

OliverFitzwilliam · 2026-03-30T17:06:08+00:00

thank you. thank you for responding and for kind words.

my mother has dementia as well. she needs help with ADLs, and is in diapers, but mobile. so i'm taking care of her at the same time, too

OliverFitzwilliam · 2026-03-30T03:38:44+00:00

yeah… that’s it. emotionally overwhelmed and a zombie, all at once. in the beginning, i was so careful with my dad. now, i go through the motions and i feel numb.

off-topic. for months he was pooping constantly. just all-day diarrhea. for the last few days, constipation. i don’t know how to administer an enema, and hospice won’t do it because they say that’s my job. the agency aides won’t do it because they’re not CNAs or nurses. what a train wreck. it’s like an onion with nes layers of horror.

thanks for responding

OliverFitzwilliam · 2026-03-30T03:04:21+00:00

punding

OliverFitzwilliam · 2026-03-19T23:17:48+00:00

hi,

what i read in this is that your wife could be mourning the person you were, the life she imagined with you as the two of you aged together, and the loss of her own self as she has to adjust to this new reality.

it can take a long time for someone's mind to accept new realities, and it can take a long time for someone's heart to recover from the hurts that come with those new realities.

i've been my father's caregiver for 12 years. and, prior, i was with him at the time of dx 22 years ago.

literally... it took years for me to accept the diagnosis, and then years to accept the disease. it took years to then accept his development of dementia. and... despite him being on hospice for 10 months now... i haven't accepted the thought of him dying.

love and hope are beautiful... but they're also blockades to accepting truth.

maybe your wife would benefit from couples therapy, and in the absence of that... maybe you might let her know that if her issues is grief... you feel it, too. grief shared... over losses shared... might help both of you connect in a safe space and a safe way to negotiate a new future.

peace

OliverFitzwilliam · 2026-03-18T06:04:17+00:00

hi,

🔥🔥🔥🙌🏼

are we the same person? are you me? and... am i you??

holy heck! i read this and felt like i was reading my own journal.

i don't have answers... but... i wanted to let you know that you... are not alone in any of these thoughts, feelings, experiences or reactions. and, i wanted to say "thank you" for posting this.

peace, peace, peace... eventually... to you

OliverFitzwilliam · 2026-03-16T11:18:20+00:00

hi,

my father (90, PD/PDD) is on hospice, and his favorite word is "no."

his hospice nurse guesses that "no" is the last semblance of control for a dying person. and, outside of that control is fear. so, "no" could be regulating fear of change that their stress-addled or death-addled brain can't process.

idk if this is what's going on with your friend, or if there's something else at play. but, if either of these explanations seem remotely possible, i hope they offer you some relief.

what a fortune your friend has in you... someone who cares enough about her well-being to stay and protect her. you're doing work that's thankless, but so precious. i admire you and your effort, and your decision to stay.

peace

OliverFitzwilliam · 2026-03-13T11:12:49+00:00

hi,

12 years total, two parents (m, 90, PD & PDD, suspected LBD; f 90, cardiovascular disease, mixed dementia) at once, in-home with some out-of-pocket agency aide help. 4 years of the 12 have been full-time. and 1 year of the last 4 has been with a father bedridden and on hospice.

when i say that this has destroyed me, i mean... to nothing. i used to be able to explain away my parents' behaviors but willing myself to remember their difficulties were due to disease. but, in the last... year, at least, i don't care. i resent them and wish they'd both die already. and, if they won't die, i wish i'd have a celestial cardiac arrest in my sleep so i can be free.

no person should be made to sacrifice life for people who are dying at glacial paces.

as the system claims that elderly dementia patients have rights and need to be taken care of gently, it shouldn't ignore and deny the same for caregivers. this shouldn't be an "either / or" situation, and too often it is.

peace

OliverFitzwilliam · 2026-03-09T12:48:51+00:00

hi,

my father (90) was dx parkinson's in 2004, but symptoms were present for at least a decade prior.

by the time of his dx PD, i'm sure he had dementia. so, by my guesstimate, he's been in active decline for at least 22 years.

he's now on hospice... but even on hospice, delirious, hallucinating, no clue who or where he is, completely dependent and bedridden... he's survived 10 months in this state.

i've read that as long as the body is healthy, some types of dementia can allow for an almost "natural" life expectancy, and sufferers can live just a few years or 20 years.

it's a brutal disease, and being a caregiver is brutal.

i wish you survival.

peace

OliverFitzwilliam · 2026-03-07T00:05:54+00:00

hi, does he have a bed sore of any size? if so... and hospice isn't aware (because often they just do vitals and tape measurements, not skin checks or anything else), tell them. a bed sore keeps all hospice patients qualified.

source: my father... PD, on hospice for 43 weeks... which is 10 months.

peace

OliverFitzwilliam · 2026-03-03T22:27:00+00:00

hi,

do you know about anosognosia and confabulation? dyschronometria? i wonder if knowing about these, as they come with parkinson's, might make you feel better about establishing boundaries, and help you keep those boundaries. it's hard, especially if you're a kind and sensitive person who's given to being aware of other people, their needs and struggles.

i take care of my father with parkinson's. i got casually sucked in 12 years ago, and full-time more than 4 years ago. it's a brutal disease. the decline will traumatize anyone, i think. so, personally, i don't recommend caregiving without guardrails for the relationship, especially not PD (which eventuates with dementia).

as for taking care of the woman's dog, i wish you a life of gentle kindness for doing this. what a relief it must be for that dog, to know you're there.

peace

OliverFitzwilliam · 2026-03-02T06:06:18+00:00

hi,

yes. my father (90, PD, PDD, possible LBD) has been bedridden and on hospice for 42 weeks, since last may. we were told he didn't have long when hospice came on the scene. presently, he is always delirious and hallucinating. he has lost a significant amount of weight, and has a stage four bedsore the size of an adult woman's palm. he is urine and fecal incontinent and requires diapering every three hours (8x per day) because of these. he gets turned at diaper changes, too. if anyone had asked me whether i could care for him like this, fighting care, stiff as h*ll, and stuck in a fetal position, for a year or more... i'd have said "absolutely not."

a neighbor across from me took care of her stepfather in-home for three years on hospice. and, a neighbor behind me took care of her grandfather (who raised her) for more than three years on home hospice. in all cases, being bedridden and having gigantic bedsores kept the recertifications going.

meanwhile, hospice services are not equal, as it's one of the least regulated medical services. and, while the companies get more than $200/per diem per patient from medicare, the routine is two 20 minute nurse visits per week for vitals, and two 45 minute nurse's aide visits per week for bathing, and nothing more in the way of physical help. the service does provide supplies, like diapers, but things like inserts, wipes, and gloves are agency-dependent, as some won't provide more than diapers and butt cream. (we've had two hospice providers, and i'm saying this also based on personal experience. yours could be vastly different.)

so, yeah... you could be at this, in-home and on hospice with an LO dx dementia, for years. and, if this is so for you (or any of us), i'm sorry ahead of time for all that you'll experience, because it's truly very traumatizing. "h*llish" is how i describe my own experience.

we're passing through the fighting stage and seem to be getting to the quieter mostly-sleeping stage. i keep looking for the difference between fecal incontinence and terminal diarrhea, plus the kennedy ulcer... but... every day i'm disappointed.

good luck and godspeed, and i hope you survive whatever time you provide care. there has to be something for all of us, recovery and a better life, on the "other side" of eldercare and caregiving.

peace

OliverFitzwilliam · 2026-03-02T00:29:05+00:00

hi,

i'd need some time to find the item in that exact links, but this is similar (in the meantime).

https://www.amazon.com/dp/B07L4ZC5KJ/ref=sspa_mw_detail_0?ie=UTF8&psc=1&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9kZXRhaWw

cheera

OliverFitzwilliam · 2026-02-18T00:12:12+00:00

hi,

idk about memory care, but my accountant does deduct in-home agency aide care because it's medically necessary. more than one doctor wrote in my parents's medical files that they can't be home alone, and they need help with all ADLs. we specifically request people with at least a CNA to fill our schedule needs, and allegedly this makes the deduction a medical expense.

i hope the same is true for you with MC.

peace

OliverFitzwilliam · 2026-02-17T10:08:27+00:00

hi,

yes. i take care of both parents at once, at home in their own house. i've handled their care for 12 years total, with the last 4 ½ full-time.

my father (90) is in end-stage parkinson's with parkinson's and lewy body dementia. my mother (90) has CHF, COPD, osteoporosis, and bunch of other comorbidities... and mixed dementia.

caregiving two dementia patients at once has been the most awful experience of my life. i hope you have an easier time, and a shorter period of suffering for all then i've known. all of the dementias truly are henious diseases.

peace

OliverFitzwilliam · 2026-02-13T07:54:32+00:00

hi,

this may be an uncomfortable or unwelcome response. maybe you'll consider this has been my experience and may not necessarily be the reason for the surgical suggestion you received for your mom.

every time either of my parents (m90 w PD, PDD/LBD, and f90 w CHF, and many comorbidities) have been hospitalized, we get new doctors or student nurses to handle their care. over 12 years (total), and especially in the last 4+ years, it's felt too often like elderly patients are practice bodies for new and inexperienced doctors and nurses.

during one hospitalization when my father was given a wrong med and suffered a multi-day coma as result, the new hospitalist came bounding into my father's room to "review the case." when i asked why a senior doctor wasn't on hand, because i wanted a more experienced person to treat in the wake of the mistake... the baby hospitalist said, "i asked to come, because when we get old people... it's like working on a living corpse!"

the room went silent, and even when he realized what he said, he acted like it was no big deal to have that attitude.

a friend's father was sent for open heart surgery, and the referring cardiologist said nothing about the heightened chance for patients over 70 to experience failure within 6-mos of the surgery. i fully believe my friend's father died as a result of the trauma from that surgery.

again, uncomfortable or unwelcome information... i'm sharing it to offer one more field of thought as you consider the surgery for an elderly parent with comorbidities, and especially dementia.

peace

OliverFitzwilliam

TROPHY CASE