Dad and brother refuse to make any changes. Any advice?

Oh I feel for you. Nothing is a straight line. Not at all. As for the issues I mentioned, they are all unrelated. Just that (very luckily) the Dr. was checking out her muscle strength in order to diagnose the T.I.A. (vs something else), and that's when he found pain which he investigated and determined it was diverticulitis. As he said "does this hurt?" "does this hurt?" she said yes. yes. and I could see the pain on her face. So that was lucky, if you can call it that. Also, the corneal ulcer was unrelated to the vertebra fractures. It's just that we were paying so much attention to the back, we put off going back to the eye doctor, and no one knows what caused the Mooren's ulcer, but I fear if we had gotten back to the eye doctor sooner, the thinning cornea (probably from dry eye and eye never closing all the way) would not have gotten worse and worse. Just dealing with the back- discovering what each pain was or wasn't- getting a referral for an MRI. Getting to the hospital and dealing with that. Having cement (kyphoplasty) injected into her fractures, and these happening only one at a time. So you go through the whole process from scratch three times over. Each thing having so many miscommunications from various doctors offices, it's just unbelievable. So, the four things I've mentioned are all unrelated. As for the eye drops and gels and ointments- they are tweaked all the time. She's back on a steroid drop now, but is down to one drop a day, from three. We've been going to cornea specialists almost weekly for two years. It exhausts her, but she's been able to do everything that has been asked of her. Dad too- he's the helper and wheelchair driver. That's why I mentioned, we have to know that we won't be perfect in all this. We do the best we can- and the patient has their own opinions and desires and fears. During Mom's back proceedures, I was still working for the first two. Commuting 100 miles a day round trip to try to help them. It was horrible. My job was an eight month temp job, and I was allowed out of the committment at seven months, but this started after six months, so I still ended up working and commuting for six weeks. Fortunately, I'm not working. I gave up my apartment, my career, my life- and that's how it felt (because in the beginning I just thought Mom would get better and that's it), but now it doesn't feel as if I gave up everything- just traded everything in for a different life. Take care- you're doing a good job. Don't give up!

oh, cc, my mom was 84 as well; well, I guess 83, maybe just 82 when this initially happened but then actually she'd been having these eye - well, like you, mainly just one - problems for several years, but seemingly starting with her cataract surgery. So if yours didn't have the rheumatoid arthritis, they don't have any idea what caused the ulcer? but I've never heard of that with and it runs in my husband's family, a cousin just died from it this week, a 2nd one. I didn't know anything either and learned a lot; that's actually how/why I think hers started with her cataract surgery; they never associated it with that. Actually let me back up even more; she actually didn't have that until after she got Bell's Palsy; that's really when her eye problem started, except not really sure we knew it then until she needed the cataract surgery. She was one of those who didn't completely recover from the Bell's Palsy. But you've got me curious now too; how was yours connected with her fractured vertebrae from her osteoporosis; my husband's uncle has that but there's never been anything about his eye about it; I think he's had 7 fractures; has she had hers fused? From what I thought I learned on the internet her Bell's Palsy weakened her zonules -heard of those? Also, the doctor who did her cataract surgery (along with another long story) was fairly new; the doctor who we thought was going to do it was retiring from it and turned her over to her and guess never really thought about the Bell's Palsy thing at the time) possibly apparently (again, according something learned on the internet) may have scraped the back of her cornea or at least it said that if that's done can leak fluid all the way to the front, causing this what appears to be tearing that's typically assumed to be from dry eye which her regular eye doctor had put her on Restasis for but which just kept making it worse but, again, this was a new regular eye doctor after she'd kept trying to go back to the one who did her cataract surgery when her eye would keep swelling up but she could never see her, until one day she just happened to see there so knew she was in the office but still didn't get to actually see her so that's when she walked out and wouldn't go back; turns out she could only be sure of seeing her if she actually made an appointment. It took me a while to find out that when you just show up like she was doing they see patients on a rotating basis; they wouldn't even tell me that for the longest for being so afraid of violating these HIPAA regulations. Husband's uncle's also had those T.I.A.'s or at least thought that's what it was since he also supposedly had Afib, but how do you get from that to diverticulitis, which my mom had but no T.I.A.'s, like her mom, my grandmother. I guess I may have to begin with when I would call her eye doc's office ask about her specifically, what was wrong since they just kept giving her eye drops - not sure about steroid - so why did they say to stop your mom's? and lube but it just kept coming and going till finally it quit going till those blisters popped and even after the whole bandage contact lens thing - how long has your mom been having to go for her eye? think mom did that for a month or so; know it happened in May, I went later that month, she started it, then he took the lens out in, I think, July after she'd finished, pretty sure, the bandage contact lens thing - she started complaining of pain in it that they said was nerve damage going to it but they said they wouldn't give her anything for it; she'd have to get it from a neurologist, which she'd insisted on going to when she was going through the Bell's Palsy to have a MRI to make sure she hadn't had a stroke, which said she hadn't but he actually had put her on that very medication back then but that was before (or around the time but she didn't have it yet) the new Medicare medication coverage so it was fairly expensive so she didn't take it like she was supposed to till they found out and put her on one of those manufacturer patient assistance programs till they took her off when they came out with the Medicare program, which then wouldn't give her the brand name; had to be generic and she couldn't go pick it up from the pharmacy anymore; had to be sent to her house and she had to order it, which she couldn't remember to do; some dementia with them too, so she'd run out until the pharmacy started working all that out to get it back in again so they could start going to get it again and them take care of it but it had gotten lost in all of this stuff but had no idea it was actually even for this eye pain; guess didn't really know why he'd originally prescribed it, but certainly didn't know had anything to do with nerve pain - (long story there too). Actually think the prescription had actually run out by that point so couldn't even get anymore anyway without going back to him and she more concerned about the eye itself than the pain at that point with them also saying they weren't going to do anymore for it/her at all so trying to deal with her about that; they just wanted her to get regular contacts, which she couldn't handle, as opposed to the surgery they'd already said she would have to have to actually hopefully fix the problem, which they said she couldn't handle either, so I had actually already found an optometrist who had said he'd work with her on them but then turned out he didn't realize how bad she was and he didn't have anything he could work with her on or any real way to test her to see what she needed so he wanted to send her to an optician 2 hrs. away who would have a large number in stock but then she got sick and couldn't go anyway. But she didn't really want to go that route anyway; she really wanted to have the surgery but the closest one to her was also around 2 hrs. away the other way from me but I'd found one down by me so I eventually just brought her down here to me and got her right in; why? because he was new too; can you imagine where this went? I wonder, looking back, if I should have done it but she was just so upset I didn't know what to do.

My Mom's 84. She's had eye problems for a while (years), but especially one eye. She never had eye surgery. The kind of ulcer she has is usually associated with rheumatoid arthritis, which she doesn't have. I was ignorant as to anything about the eye. I've educated myself via the internet, and there are some great sites and even chat rooms. Mom's initial problem is dry eye. One thing can lead to another. Her eye didn't get the attention it apparently needed when we were dealing with her fractured vertebrae (from osteoporosis), which fracture one at a time (she had three fracture). What you describe about the doctors is typical, unfortunately. Since I did learn so much, I was able to catch doctors - e.g. one said to stop a steroid eye drop after a while, and I said "should we taper that?". She said good question. Yes. And she told me the tapering schedule to use. But if I hadn't known to catch that... And it happens all the time. There is so much chaos in these doctor's offices. I have to forgive myself for not being perfect and catching every thing and doing every thing. Sadly, these expert, best in the world doctors help me do that by being so imperfect themselves. I say, well sometimes I catch something they don't (in a moment), so we're all in this together. e.g. We took mom to doc because of T.I.A., and he diagnosed diverticulitis. It's crazy what comes around the corner. Mom did say she had pain, but then I ask about it as we're waiting for the doctor and she says the pain is gone. Not! So now I'm learning to not believe a pain is gone until I'm sure. Now I asked her (because the antibiotics could be 5 days or 10 days), and she says "oh, I don't pay attention to it". We're doing 10 days because there was no relief after 3 days. She has some dementia too. And I've got Dad with dementia also.

My mom went through a time of bandage contact lens; she had blisters that popped, while at the same time her implant from her cataract surgery became dislocated into her retina, which, to me at least seemed like they acted like was the bigger issue or at least they sent her to a retina specialist rather than a cornea one, so I thought must be and thought that's what they were saying was the cause of her pain; could just picture this - again, at least what I thought at the time - glass piece in her eye; but instead when got there he said was the cornea issue, and why never thought about why he was okay with treating it rather than her being sent to the cornea specialist; learned later - he was new - that he didn't even know there was a cornea specialist there he could have sent her to and I didn't know at the time but turned out she knew and also turned out her regular eye doctor had already tried to send her and she wouldn't go because it was at the same practice as the eye doctor who did her cataract surgery that she thought is what caused all this in the first place and maybe was. Do you know what caused your mom's ulcer? She seemingly had problems with it almost ever since her surgery and dealt with all kinds of eye medicines - how old is your mom?

Thinning of one cornea of the eye. "Mooren's Ulcer" (corneal ulcer), eventually perforates (tiny hole). We go to Bascom Palmer Eye Institute weekly. There is a glue they use (a version of super glue) and a bandage contact lens. I do four eye medicines- about ten applications during the day and some of the night.

corneal perforation?

Hi again- I just wanted to mention how my week went, with my sister coming from across the US to help out for a week. It went great. She's fantastic, and I got to see five friends. Each visit with a friend was shorter than in my former life, and this is an adjustment for my friends. Mom and Dad enjoyed the week with sis very much. Mom was a little troubled by the change to our norm. I stayed with them all week too- just could come and go as I wanted. First two days were showing sis our routines. Probably the BIGGEST benefit to me is I'm no longer as alone as I had been- at least my sister has experienced it, and lived through some of the surprises re: Mom and Dad's behavior and disabilities now. Sis has been gone six days now, and the positive effect on me is already starting to fade, but there's only so much that is possible for a person to do to help, and she did it all. Long overdue, and can not be achieved by "visits" (that's just bs), but the long-distance sib can do this if they want to. My sister is a wonderful person, so I expected no downside and all up- and that's what I got. On her last day here, I got to sit outside by the condo pool and let some of the stress go. During the week, Mom had a TIA, and was diagnosed with diverticulitis, and we went to the eye doctor for continued help for her corneal perforation. So it was a tough few days for Mom, and she's much better now.

was gonna say what's the point then anyway but guess you're saying not always sent home but not sure he'd want anything done anyway; why she didn't call, he didn't want her to; he doesn't want anything done, but son seemed upset when he got there that she hadn't but then he didn't either, not sure if thought too late; could it have been?

I would say yes, deb daughter. Apparently many people can have mini pre strokes and mini pre heart attacks. Frequently they ignore them and or go to dr or hospital but are sent home anyway. Better safe than sorry.

special, not sure about pensions, not sure what pension type savings are; thought pensions were income - anyway, got another call today from hub's aunt - not entirely sure it's not just a repeat of before - well, wait, okay - sorry, let me try again - she's called before and said she's been in bed sick for a week - let kids know, nothing's been done, didn't let me know - long story, trying to get there - said same thing again today, why said wasn't sure but then she did go on to say she did manage to get up day before yesterday, go get her hair done and has been up ever since but still saying she's sick - and especially today said she hadn't gotten dressed and this was at the end of the day and if you knew you'd this definitely isn't like her - okay, hub said their home care worker came while she was gone - she, hcworker, has said she's not supposed to stay for 3 hrs. when she comes and she, aunt, was figuring up how long she was gone and, normally true, she's definitely not gone that long and hcworker, according to her, was definitely not there when she got back, and aunt has said, anyway, she's started putting in on her calendar, so if she did and she was there when she got back, should be there, so...okay, hub/uncle just went to the doctor - and, also, to clarify, he goes to the VA - now they have their own whole other system of POA; they don't recognize outside ones - now, right before he was to go to this already scheduled appointment he had two incidents, a fall and another incident, which aunt said was either another stroke or a heart attack so he was scheduled for his routine bloodwork on a separate day before he was to go see his doctor, so she asked me to call to see if they would be testing, re his blood work, to see if he had had a heart attack and if not, to do so, so I did, talked to a nurse, who said she was his but was not the one I'd talked to in the past who'd said she was his but didn't question because this one at least talked like she would try to see about getting it done via getting the doctor to order it, where the other wouldn't really work with us, would say she didn't have the authority; it had to go somewhere else, which had ended up being this one in the first place, so...thought everything good to go till got a call the day of, I think, but after, his appointment, saying the call had angered them - didn't seem like to me when I talked to them but, again, didn't question, thought, well, maybe so, and they just didn't want to tell me; now today aunt, who did go (was thinking she'd said she wasn't but no, that was to get his labs done, which, maybe is when she should have so not really sure maybe what might have happened then, which seems when should have, anyway) said that while waiting for the doctor, nurse or technician - she not really sure who - called son, who took - and started taking them to the doctor, after I had started, after they quit being able to just take themselves - them, out of the room and talked to him for a good little bit and he wouldn't tell her what about but, from the call I got later, appeared to be about my call re the request to test re heart attack - still not really sure if did test or not and by then and certainly now would be too late - but the idea that he'd had one seemed to downplayed at that point, although not really sure was at the time, aunt was questioned re not having called an ambulance for uncle, even though uncle did not want one, so here's one issue - should aunt have called one?

The assumption that poa cant be changed is absurd as a misguided elder can be swayed to change it by their abuser. Family that sees the abuse,however have a very, expensive and lengthy battle ahead to remove someone abusing their poa.

So many elders become childlike, or frightened easily or are so overmedicated they become easily manipulated at times.. It is a disgrace we tolerate such abuse and disempower any witnesses or family witnesses it all comes off as a battle for stuff, not right and wrong.

1 greedy, inept sibling or anyone close to the elder can basically disempower anyone and everyone else. One day you have a mother and father and overnight you are shut out. I agree the elder will not admit or may not even know of the financial abuse or want stripped of all contact from others,but are being lied to that no one cares to come by the very one that negated others involvement misusing their power of attorney..
It does happen.

Again, thank you debdaughter. I dont understand why some find elder abuse so hard to fathom. Or why there are so many "laws" that basically eliminate other family entirely from input should 1 misguided person abuse the elder financially or physically. Of course physical is only a tad easier to prove. It is really frightening.
I have a very little tolerance for the disbelief that such occurres a lot or the focus on gratitude overshadowing this serious worldwide issue.

a good estate planner might sort that out - there are things that can be done with excess income, like putting into Miller Trust or annuities - rules and regs and limits vary state by state though, it is definitely best to have help with it as errors can be costly or even run afoul of the law and incur penalties.

Yes. That is what I am talking about. My understanding is it will affect all pension type savings and Ira's.

one of the main ones being that, to protect the elderly, they protect their assumed competency; in other words, when they go out to investigate, they take their word and most of the time, they're not going to tell them what's really going on - fancy that - now, special, what is this govt. mandate you're talking about re elderly having to withdraw their savings before age 70; are you sure you're not talking about mandatory IRA withdrawals "starting" at age 70?

You can take action and nothing happens. It is naive to think the wheels of justice turn as fast as we would like. It is NOT AS EASY AS PICKING UP THE PHONE. The agencies, are ill equipted to deal with the amount of reports made. To legally change POA is certainly not a fast process. My father died very quickly compared to the time involved to report, prove the "legally condoned" medical and financial abuse. That is naive to think otherwise. We are grossly inadequate in helping abused women and the elderly.
It is hard to prove, more so when shut out from access to information, and or the elder. You are naive, to think otherwise. I stated myself and other family saw this unravel, and morph into abusive as nothing changed, but got worse and worse.
It was too late and very hard to prove,after the fact as evidence was destroyed. Again I have stated this and if it seems "simple as picking up a phone" trust me it is not. I wish it were. The net is full of people and their loved ones betrayed and abused by the "system" in place now reharding elder care.
Not everyone walks in the same shoes, and many, cant complicated and agonizing issues are at stake.

Please, someone who is doing caregiving for 3 years which is 24/7 has more than earned gratitude.

If someone who is caregiving is neglecting the elderly parent/parents than you call the police who in turn involve social services.

Seriously, if someone thinks the caregiver is neglectful or abusive, take some action. It's as easy as picking up the phone.

Otherwise, it's BS.

Let's get real, in the majority of cases the caregiving falls on one adult child, usually a woman, usually single. They get no help because the others don't want to help or that adult child "chose it", because they were the one who offered help first, not knowing that down the road they owned the patent on helping mom and dad.....LOL.

If someone thinks a caregiver is being abusive or neglectful than take action.

All of these negative comments toward one another needs to stop. This site is to help each other, not attack one another's viewpoints. Unless you have walked in someone's shoes, do not assume you know what is best for another. Please people, have compassion for each other. We are all struggling...Be healthy both in mind and body. Do not blame...

Time now though to move on special ...I refuse to call you nothing special now... they will get their just desserts ...may not today but it will come. As I have said many times without ALL the facts we cannot judge, we can just make comments that may or may not help depending on the situation. One thing I know for sure, and I speak first hand in this to dwell on bad things keeps you in a bad place around which the thorns grow thick and fast so break free my friend and live as you were intended to be - free to be who you really are - time to walk into the sunshine once more

At the risk of offending..shunning family help CAN be a sign of abuse or secret arrangments being made NOT in elders best interest.

What hurts is the loss of parents to this huckster my brother turned out to be. What this has done to the family..the lies he spread to weave his web. That my mother is so confused and blind to it all.

Also his gf, suddenly retired from her job almost exactly same time as will change. Hmm. It is just full of such "co winky dinks"

Neither sis or I had the money to fight this. Perfect crime, right now to cremation of Dad, no proof he was over-medicated and oxygen with held.

It is true, money (really wasnt any really)does weird stuff to some. Land immediately put up for sale Mom dumped and left at hospital. We can do nothing, no power. She still thinks the world of him, she is blind regarding her favored son.

Hurts like h*ll..have had to accept it. Laws is without poa or in the will status...nothing can be done as long as elder doesn't see "Reality".

Perfect crime.

Agreed. I was a mostly stay at home mom for 37 years. Husbands jobs kinda demanded that be so. My kids were really spaced out. It is easy to just "drop off" the planet socially due to constant mom demands and even the most stoic can buckle from the day in and out constand demands as by default buck stops with you. So I understand burn out, no matter the circumstances.

In retro spec I can now look back and see the role I played somewhat in MY own isolation at the time. Energy levels were at an all time low.cant see the forest for the trees.

I was also IN person with my Dad, fighting brothers "attitudes"every step of the way.

I am like "good golly you have a line of people willing and trying to help here and your issues are faulting that"

Later we all found out why,besides being a jerk..he was insistant on isolating Dad so that Dad wouldnt spill the beans brother had drug him drugged up to change his will. Bullied him into it. Shocking and abusive.
He had lived there free, and now that might change if Dads other will stayed intact for a three way split.

My sis and I could have cared less at that time about the stuff, we were shocked at how he abused Dad. We were there offering respite, brother Refused it and changed his will dumped him in the home to die alone. P d q

Total sick time of Dad? End of August till October. Caregiver burn out? Ah, no, pure greed.

When my Dad was poorly and he was dying my mum and dad lived alone together if that makes sense. Mum doesn't do caregiving - she hasnt a clue how to, never did, not to us not to anyone. Her mum died from cancer her dad from Parkinsons and she didn't caregive to either BUT she made bloody sure they were given care because that was her skill set - managing.

When Dad got sick and couldnt eat solids she didnt know what to do - she is no cook - if it dont come out of a tin or packet or frozen you dont eat where mum is concerned. I wasnt there to care during the week I lived 4 hours away but I rang every day to speak to them both and listen to mum moan - because she needed to moan - this was WAY outside her comfort zone. Then at weekends I went down prepared a host of pureed meals - all meat and each veg pureed separately, and some soups for him to have for the following week. Mum went out and got the break she needed.

When my daughter went to stay with mum after Dad passed (her choice I might add no one asked her to and knowing my mum I did advise against it) then my Mum started to be very demanding. My daughter wouldn't acknowledge she wasn't coping, I spoke to her at least once a day to make sure she was OK and then came the shattering news, despite all my support, my daughter had a complete nervous breakdown. This was my trigger. I gave up work almost immediately - contractually I couldnt walk from the job but ASAP and came down to care for Mum, sold my flat at a HUGE loss (the market had just slumped) and my daughter bought her own house which I am so glad she did. Five years on daughter is almost well again although still struggles from time to time.
She now rings ME every day to make sure I'M OK so please dont think being absent means don't care it doesn't; it means don't caregive for some (or can't caregive due to other commitments - like paying a mortgage or loking after children for others) or in my daughter's case was burned out - simple as

Oh, thank you Deb daughter. The National Centers for Elder abuse have done polls and studies that reveal a child living off or with the elder is THE mostly likely to abuse the elder financially or otherwise.

Now am I attacking anyone here, no. But many times it is done. Last minute will changes.sense of entitilement, elder fears due to confusion or loss of memory etc. It is VERY real.

I certainly understand the never ending costs for eldercare or how picking up incidentals, gas to drs etc occur and the elders resources may be tapped if the have any to spare to balance out these costs, BUT. Some caretakers feel super entitled and do begin to lose sight of whose money it is etc. It happens.

And yes. There are many children who get off doing NOTHING,yet show up with hand out at will time.

Unfortunately there is lots of middle ground here too. To assume the worst in others is fraught with problems. To overelevate self, is also damgerous.

We never know ALL Circumstances, but POA is way overrated and families go on long after parents pass.

People really need to grow up quick in these circumstance. Elder care is a time bomb ticking as baby boomers (me) are getting there now. It is going to be the issue and it needs much more done to lessen the impact of the current problems their children will face.

One issue clearly is government mandates that elders 70 and over MUST withdrawl all savings before age 70. Many elders that planned well and are expecting to live off the interest of their savings cannot survive long if they have to withdrawl all interest earning monies.

Another is being forced into medicad by such legislation and current hospital and hospice policies.

We are trashing all options to the elder and their families to survive old age, their healthy financial and physical survival in their sr years.

In Tx there are things besides trust funds that protect elders life savings and homes. The are not well advertised, but essential to allow elders good care, and not to become or force their families into destitution.

Lets put our anger in letters to our represenatives to make elder issues more pallative to all.

Ps ex military and police family by marriage. Again you cannot make too many assumptions. Everyone has circumstances.

And yes, there comes a point where there is choice. To be mature, adult and realistic. You cannot avoid this forever. It IS the fundamental issue. It is fraught with choices and options, and frankly if you are resenting it that much or your siblings time to step back and see if YOU, your guilt or pride or caketaker burnout are somehow related to the issues.

No one wants to be bored with my complex details of the "total turn around" in my family,suffice to say brother GREED and lazy ruled the day, not the best care for my Dad or inclusion of a multitude of family members giving and offering help to him and my mom.
People would be shocked outta their socks at the blatant abuses and cruelty that were going on. Could I stop any of it? Believe me I tried, but he had POA, and clearly my mother had been convinced by him ( probably by threats to abandon her ( and he backed this up by doing it to Dad first) in a horrible, uninvestigated nursing home.
I. was smack in the middle of an expensive and animosity filled divorce from a 37 year marriage, and had a CHILD of 16 at home needing me, her parent,to care for too.

I stood to find myself homeless due to divorce issues that insisted be given my sole attention and my older girls were having babies and needed me AND Irishboy, I had a child at 41! That is really not unusual nowdays at all.

So does this mean I didnt love or care for my Dad. No. I was very involved in spite of my own immediate and concerning issues. Spent tons of my own money and had been through out parents elder years before they got old and ill. I had little to spare after divorce, yet still spent as brother wouldnt part with a dime, parents supported him the majority of his adult life FREE.
Of course I will get my dander up to anyone making uneducated assumptions about others. Been there done that.
I can clearly see (as would anyone who read up on these issues) polarizing based on faullty and inexperienced or immature typecasting and assumptions as it serves serves no one. Chastizing based on one frame of reference is rude, mean, counter productive and polarizing.
We all have our stories and all love our parents. Nuff said.

I have to chime in here on the side of nothingspecial. I felt responsible for overseeing dad's caretaking by grandson; just about the time he started we also got a new housekeeper that we were both concerned about, maybe for different reasons but at least for me turned out to be one of the best moves that could have been done; she truly was my eyes and ears. Was very concerning when gs's gf wanted to and did go to work for the same home care agency she worked for and wanted to take over dad as her client but, thankfully, I was able to nix that; find their reaction very interesting; if that didn't speak of exclusivity then what would? True, in a sense, at the time, just being there was somewhat enough but not sure would have been had housekeeper not already been in place.
But suppose what I really appreciated was her, hm, relationship? with me, as in looking to me as at least one who did care even though I wasn't the one who was physically there. She understood about having other responsibilities other places.
And did not see me as doing nothing just because I wasn't there, just as she also didn't see him as doing everything just because he was. But she was also very good at gradually getting him to do more that needed to be done if he was going to be there. But definitely not to make him feel like there was no point in him being there at all.
I do feel like I may have come across the other way because of bringing up the times I did go but there were definitely times I didn't feel I could and I'm so grateful she understood that because there were times I was when grandson definitely didn't want me to; he never actually denied me coming; actually he'd call and want me to come; he just wouldn't want to stay as long as I did when I did go, which not sure if that's quite the same thing or not.
But still I wasn't just staying; I was staying until certain things were worked out that she understood but he didn't, like getting the home health care arranged when he came out of the hospital; could he have done it? maybe.
Should I have let him? what about when it wasn't getting done like it was supposed to be?
Do I just walk away from my dad? what about when it turns out the home health agency sends what turns out to be a social worker but under another guise, truly, was that deliberate or just a coincidence? She supposedly was there just to set up telemetry but they send out a social worker for that? Especially when there'd already been issues at the hospital with the social worker there not wanting to send him home with him being the caregiver - do you not think they might have talked with them and told them? Especially since he was only allowed to on a trial basis? But yet he tells me that she tells him that I'm the problem? While she's telling me that she'll put me in the same role as the housekeeper does; in other words that she'll make sure to report to me?

And, yes, I can imagine how it must feel to be on the other side. But it was somewhat because of what had happened in the hospital; it definitely took more than one person there; that's why I stayed there and, no, don't believe he would have if I hadn't it; he didn't see it necessary but then he also didn't like the way they were handling it either but also he didn't even want to handle it initially if it stayed that way when he came home; they didn't even want to let him come home at all because of it; that was the real reason for the trial, to see how he was going to do. And I do think you've hit; the issue is guilt, now guilt for what, not being able to do it all, but why such an issue....

He was shocked when he came into the hospital room and saw what was needing to be done but he blamed them for it. He never expected to have to be doing that.

So the issue was how was he going to handle it, now that just being there was possibly no longer going to be enough? Would he do or be able to and if not, would he say so or be too proud to or, yes, in his case, once he'd been, he felt, basically forced into being that, want dad's house too much to, which found out he did badger dad to give him; just that he never would.
Know how heated he got after dad was gone about it; I wonder how heated he got with dad in trying to get him to do it before.
I didn't know that hospice could and would actually quit but I do know that had things gone differently his housekeeper, that I still stay in touch with, just finally really leveled with me and told me she was getting ready to report him; she had just hated to. Not really sure what got through to him but think she must have finally; maybe she even told him.
But he did start doing more; it was just way too little, way too late.
He wanted to just be there, nothing more. Dad wound up being severely disappointed in having him come but that's where I just don't know at that point what we would have done. Do know it's created some real issues.

First. Gratitude must be earned. You cannot just blindly assume someone living with the elderly parent is doing a good job of caretaking. Brother told a good tale but in reality did very little to actually care for parents, yet wanted exclusivity. While i have no doubt the majority of folks are REAL caretakers, many fake it and actually do very little but are convinced they are doing a great job, just being present.
What I feel essentially wrong with this situation is the utter disbelief that anyone can "take care" or show care unless they are physically there.
This belief system can cause huge problems in actually pulling together with the resources everyone has to manage care as a family refusing to become poloriazed, as realistically most siblings cannot just "drop everything"as much as they may want to.
I see a common stalemate with the opposite end and extremes the do it all vs the do nothings.

I also see "locked in " belief systems" really affecting caregivers and those "shut out".

Not every situation is fixable, true but many are. The thing to do is to get people less polarized, more into, doing what they can. Not in a damned if you do damned if you dont situation.
In this thread a woman is being typecast as not caring because she isnt physically there. Wrong. She wants to be there yet is being denied access.
Wrong.
This is the issue. Catch 22, she has tried to help in ways she can, and was rebuffed. Who wouldnt just give up?
This woman didnt and shouldnt. There are red flags all over and to me it is easy to see the real problem. Caregiver in trouble and yes, he has brought some of that on himself by negating "solutions".Or working with realities that HE is losing his capacity to cope. Perhaps a mature person could see that. He cannot.
Being on both sides of this issue myself, I know the dynamics. This is Not a job for one person. Ever. 1 stubborn person can negate the help he/she might have gotten for relief if he/she could think outside the guilt, I can do it all box.
Just like people think parenting is a snap, until they have kids. Uh ,no.
People that have NEVER cared for someone arent always prepared for the down and dirty of actually doing it. There is no job training but on the job.
You cannot assume that just because someone is PHYSCIALLY THERE, that they are doing a good job of it. Some do many dont, but are too proud, or have their eye on the prize(parents home or stuff) to admit it.
It can get very heated, to get real about what is really involved.
My Dad, had a horrible situation, and hospice was threatening to stop coming due to it, but brother let his pride get in the way of a solution. Just wouldnt hear anyones input at all.
Nor did HE do anything toward the goal of actually caring for Dad passed the end of his own self vested misguided nose.
Pride ruled the day. That didnt help our Dad one bit.And destroyed ALL goodwill in the family.