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

PLEASE NOW ENOUGH. Vitriolic to-ing and fro-ing serves no purpose. No-one has the right to criticise another until they have walked a mile in their shoes. I have been guilty of doing just that in the past so for anyone I have had a go at (with the exception of the troll a couple of weeks back) my apologies.

We may read and think we understand but we really don't. This is why I say please offer guidance help and support for people who are finding the path difficult but want to do their best whether it has come late to them or not.

Caregivers and past caregivers have both a lot to offer as long as it is supportive. So come on peeps lets pull together here instead of the unpleasantness I am seeing xxx.

Hi frenchmadeline, took me a minute to put together what you were saying; yes, dad's hospital and his cousins were in two different states; adjoining though so not really in different parts of the country but yet, in reality, though only a river, but a river between, they do act as if they are, and think are considered, to be in different parts of the country, so do think that could explain a lot. Something that hasn't been talked about a lot on here is our own situation that we might be dealing with, like yours; with me, when dad wound up actually in the hospital I was actually in the middle of a baby granddaughter who'd just been born 2 weeks before, found to have a heart condition and been transported to the Regional NICU and maybe - have to try to pull out the records to be sure of exact timing - then been transferred over to the children's/babies CICU unit and possibly already had had the meeting where they'd said there was nothing that could be done for her short of a heart transplant and been listed for one - while trying to help the parents by helping take care of their older daughter but still that wasn't actually me, so I did leave her with them; mom could take her with her to the hospital and left to go be with my dad; I'm glad, I'm assuming this is what happened, that your husband was able to come of the ventilator after 11 days; we were told with my dad, and it was; well, no, I think I've just realized it was actually just 8, that that's as long as they could keep him at that hospital on a ventilator - this was a later hospitalization - that then he would have to be transferred to an acute long-term care facility, and this is where I was having trouble understanding what your were talking about, that the two closest ones of those were each in a different, different state. My new granddaughter had at least also been on a ventilator; she might have come off by then.

How did your husband get necrosis? are you saying he had the therapy first and that's what caused it and Mayo said it was normal but they would do a hip replacement but only for cash, since they couldn't justify it medically? that's what they said my dad had, of his foot. And also they ended up saying that's what my little granddaughter got. Not sure what you mean by "triage" doctor; that's a term I normally only hear re the ER but know that mom was sent to therapy for her hip as well, but only because her primary physician's nurse saw what shape she was in and got the doctor to at least do that, so not sure if that helped it get to the point of bone on bone that when she went to her chiropractor for her back, he also saw what shape she was in and did x-rays and found it, so she finally was able to at least see the surgeon without a referral from her primary, who wouldn't give her one, and be told she definitely needed a hip replacement but that he would have to get a medical clearance from her primary, who still wouldn't do it, until she fractured it and fell or the other way around, as I'm sure you've heard often happens. At first I thought you meant you were still in Germany; wish I'd thought of that, or they had, and done that; never even thought; how did you? well, wait, think I got it later. But you've been trying to get back home for 10 yrs.?! Not sure I really understand what the hold up is. But I didn't think Mayo did his hip. What happened to his foot?

I haven't heard you say anything about kids, but I did all that I did with one, but I'm still not convinced frustratedsis either had friends or had ones she could leave her kids with or that she could have with her custody situation; I just don't think we know enough about her situation to say that but I'm also not sure she was worried about her brother's sole caregiving role at that point; I think things were still, or at least seemed to be, going fine then. It seems, maybe because you're female? that you don't mind your brother and sil coming, even if it does make extra work, while he just can't see taking that on; not sure dad's grandson would have had it not been for his girlfriend. Though one problem I, at least had with it was they wanted to do for dad on their schedule, not his, not sure how you handle that with your mom and they didn't like me saying anything about so I just tried to do it myself but they didn't like that either but they then did start doing it more on his schedule, just not following it themselves, which I guess is okay but then, at least to begin with - it wasn't what dad wanted so in some ways I still did or at least, and I can somewhat understand, they didn't want to be told any different but then she wound up having neck surgery, I think it was, so I'm not really sure what happened because I was back dealing with my granddaughter by then, who had ended up having a temporary surgery, while still being listed for transplant but getting worse and not getting one, till it was getting to the point of needing to do what her doctor, but not the local hospital, said was her only hope, which was to have her lifeflighted all the way to Boston for major open heart surgery, basically just as girlfriend was getting discharged and be having to have therapy, while dad was ending up back in the hospital as well, so at least for then it worked out but it was just a hard time but she did recover and got to where she did start cooking gourmet meals! just not what he liked. Though I think they would have liked for me to stay in the local motel, and, honestly, with the way they were, I might not have minded having somewhere to go, but with everything with the granddaughter being 2 hrs. away, I just couldn't afford so they just had to put up with me; sorry, like said, I tried to work myself rather than be extra work. So did your stepfather move after all? because I thought you said he wouldn't move to Florida, is where I thought you said she wanted to move to but they have an apt.? then I thought you're saying that's where you are but you were in California? In many ways, though, it was good that it was grandson taking care of dad because it wasn't any problem for him, just because of the size difference, even with the back problems he says he has. But that wasn't something that was an issue that often. So you've been taking care of your mother since 2004; do you not feel you can go off when your brother comes; that's what grandson would do when I'd go stay with dad. I thought your husband was still working; grandson did give up his income to take care of dad, but, thankfully, he was a veteran, so we got him the pension to get paid some to do it. So did your step-father not work?
My dad was somewhat that way after he got to where he couldn't work, with not wanting to spend or even thinking about anything being needed. They actually wound up going to the food pantries for food to eat, until they changed the rules and they couldn't anymore. He could live on beans and what was in the freezer, while mom liked to have a little more; he had it; she just would have to finally get it out of him, I guess kinda like you with him, though, of course, don't quite understand your whole situation.

I am also a member of an email group where we are somewhat doing just that as our ones that we were taking care of are passing on - was going to address some of the other issues but life is moving on for today anyway so will see

Yes, Jude, I agree. Irishboy has dine this before on other threads,and is very prone to attack. That does upset me as this site has not the prerequisites he claims.

Having elderly patents (or any caregiving situation) can become very complex.

Mine certainly is. I apologize for my anger. But I know people need support for these complicated circumstances that can arise.

Just because someone is circumstantially unable to pack up and move in, to physically care for their loved one..doesnt and shouldnt exclude them from concern or a diffetent way of caring..long distance or otherwise.

I live ten minutes or less from parents, am willing to share care and cost..but loafer brother is terridied he can no longer "free ride" off parents and has wrecked family with his issues.

That doesnt and shouldnt put me or anyone elses care or concern in the garbage.

nothingspecial, don't paint the whole group with a biased paint brush. Because one person goes on attack doesn't mean everyone in the group has. Sheesh. I think both you and irishboy have anger issues.

My brother cracked and went nuttsy after just 3 weeks of taking my Dad to drs and theraphy and he had me, my mom, my dister and several other concerned family members helping. Yet, he is incapable, but has the legal power to be an idiot.

I was there every step of the way..he has issues AND greed. But he can be a jerk based on one wrong legal move on my parents part.

Do I stop caring, no.

I am banned because of brothers greed and immaturity as is my sister. It happens. Let people still dealing with situations alone. Nothing happens in a bubble. I have no legal power. Brother saw to that. Nine days before Dad passed, brother panicked, and took an over drugged man to change his will, dumped him in a home. Lwft him there and it was a horrible place. Several family members DID intervene, but no one has the money for legal intervention.

My mother is still living and being abused by greedy controlling brother. I feel this womans concern.

By the way, I did caregiving everyday till the day before my Dad passed and my motber is now in a similiar situation. Sister and I are being banned and not informed or allowed by controlling and self vested brother. I did caregive from beginning till end with my Dad and would also with my mother but brother has all the legal power and is taking advantage of them both. That is very clear.

Agree with that Jude. Everyone here should treat pther with respect and courtesy. Why are people here ? Because they have elderly patent (s) or a family situation.

Very few here are the least bit "open" to diversifide curcumstances of the many of us in that situation. A multitude of issues surface in these situations legal and otherwise. Not everyone's issues are the same. Some very resentful folks need to realize that and deal with their anger and resentment n healthier ways than attacking concerned family members input or questions. Concern and caring manifests in all forms. I believe the original poster explained her circumstances, and elderly issues are progressive and anyone that comes to aide at any time and in any way should be respected and appreciated and helped, not attacked.

Geeze, step out of your resentment shoes, Irishboy.

As I have said before we should be offering help and guidance not further pain. Yes I think she needs to visit no I am not going to deride her for not going earlier as we have no idea of her circumstances and second guessing helps nobody. Plea from the heart here and from one of my dads saying if you cant help dont make things worse

Wow! People need help and you write your resentment and hate into the "help. Being overly defensive and isolating a parent are HUGE red flags.

Nothing Special, yes it is her dad to.....BINGO! Where has she been the last 3 years??????

The brother has been carrying the FULL LOAD. Now she is concerned?????

Nothing special, I know several caregivers who were the sole caregiver due to "do nothing siblings".

It is a very common situation, as seen on this board.

Frustrated sis has been typecast. No wonder she left the building. She has circumstances. One being her brother REFUSING her access. That is concerning. Greed of trusted sibling needs investigated. She is not company. This is her Dad too. Perhaps she trusted sibling to do right by patent in her circumstantial absence and now has indicators that trust has been misplaced.
I think she is wise to be concerned, yet she has been shredded for her concern?

Wrong move from site input. Resentful caregivers make huge mistakes and them blame trying to intervene siblings input or concern. What a mess some caregivers bring on themselves then bad mout their own siblings concern. Such defensiveness needs looked into. Caregiver Self fullfilling huge mistake going on here..

Do not agree Irish boy that what happend to you is true in all situations. Some "caregivers" have issues (including being spoiled or overly trusted by the parents to the parents and families later determent).

Legal and other resources do NOT alway intervene in such situations. Elder parents can become like domestic abuse victims and or are over medicated, isolated, child like and trusting, narcissistic and abusive themselves. Sometimes greedy, self vested, and ill equipted siblings take advantage of all of this and really concerned family member can be LEGALLY shut out from changing that alone.

Elderly are prime abuse victims on all levels. Do not assume they do not have circumstances barring them from "helping". Caregivers need help when this level of resentment surfaces, irregardless of what they perceive the real situation to be.

You, had one situation,however perspective is everything and even your situation may not be exactly what your mind from YOUR perspective tells you it was.

This is a massive "black hole issue"that need light abd legislation shed on it. Elders are isolated, takenadvantage of and yes, legally murdered every day on the US. Biggest offenders? Family members.

I agree that the brother needs help. Who knows what lines his Dad has been feeding him with to make him feel guilty? He feels stuck, and even though he protests about any help, I think that you should make a visit to see what shape he is in. He is looking at it like he is a failure at his 'job' of looking after his dad, and I think that reassuring him that he is not, but could use some help might cause him to be more receptive. Depression can cause people to shut down and be paranoid about other peoples motives. He may be like me - stuck with no other recourse (and I no longer have a social life, either.) If you could get a social worker to back you up about moving Dad to a center, please try. If your brother has looked after two parents this far, he has done a noble job of it, and no wonder he is depressed.

Hi Debdaughter: I suspect you may be correct in that the hospitals are in different states, no doubt also in different parts of the country. We are in N.E. Florida and as I said in my original post, the hospitals I spoke of are in Jacksonville. And it was the Mayo Clinic that picked and chose their way through the myriad of tests that could possibly have benefited him the most. He did not fall. He is a secretive man by nature and he waited over a eek before he told anyone that he was suffering from nauseousness and vomiting. Sure my husband and I talked about the sudden weight loss.. But our hands were full. I was going in for rotator cuff surgery and was not able to use my right arm. My husband is trying to become acclimated to coumadin, one of the results from an emergency heart procedure at Thanksgiving, and which during the surgery itself an "emergency" occurred, requiring his being put on a ventilator and heavily, very heavily sedated for 11 days. Ironically I am caregiver for my sweet 87-year old Mother, who went through her five days in hospital in January for an unexplained seizure and thank God is doing fine, though it pains me greatly she's lost the ability to form sentences.

I believe the hospitals here have a real chance of causing the death of one of us. The Mayo Clinic already forced my husband into retirement. He had avascular necrosis of the hip. The "triage" doctor (a new system it was trying to safe costs I presume) insisted he do exercise for lower back pain. But his pain was excruciating and eventually, though only really about 11 months, his hip collapsed and we went to Ghent, Belgium for a hip replacement since Mayo acted like it was a normal event and wanted its $45,000 cash up front. We are trying to get back home to California and have been since 2005 but it is my stepfather who is standing in the way. He's already told me he considers his life over, why stand in our way? We did this relocation because my Mother wanted her husband to accept early retirement and both of them move down to Florida. He wasn't doing it. So my husband God bless him gave the okay to sell our ocean view home, leave our friends for a few years and work on getting my Mother settled. (My husband was an international business consultant with clients in China, Hong Kong and Europe. His basic needs were a telephone, a computer and a reasonably close distance to an international airport. Now, thanks to Mayo he has two replaced hips and one knee replacement. When doctors give him the go-ahead he will have foot reconstruction surgery. I just pray we'll be in California then.

As to the original poster she has little leg to stand on, IMHO, and in that regard I am firmly with irishboy. She could have left her kids with friends AT ANY POINT IN TIME if she were worried about her brother's sole care-giving role. When my brother and SIL (I love them both, he had three major stomach surgeries due to surgical error while her life was saved two decades ago by a heart transplant at OSU) visit to see my Mother I have extra work. Even telling them how to do things can be a real pain in the a--. My brother asks things like how thick should I slice her pizza. It makes you crazy. But at least this time i made it clear that having had rotator cuff surgery I would not be offering them any gourmet meals! (I learned my lesson last visit when they stayed with us. So did they. They stayed at a very nice beach restaurant and left for its comforts whenever they felt like it. Same thing for my stepfather; he does sometimes help with my Mother because i have three bad discs but he's kept their apartment and off he goes whenever he feels like it. Mostly I'm glad when he walks out the door. My husband and I haven't had a vacation, unless time in a hospital bed counts, since 2004.) My brother and I have both worked through our savings and our retirement funds, though I am worse off than he), and yet my stepfather, who literally didn't have a cent when he married my Mother 30 years ago, is awash in cash that was consistently put away for a rainy day by my Mother, while he's the cheapest man God ever made. If he spends $100 a month on her it's a miracle. I finally made him contribute to food costs because they have gone up so much; and my Mother bless her heart, has a singularly great appetite, especially for chicken and steak.

God bless you all and I hope one day we can have a place to write about how, all things considered, we wouldn't have wanted it nor would we have done it any other way!

and, oh, they're advertising around here! but, yes, that's what's beginning to cause the problem; it's causing a lot more people to do it and that's exactly what's causing the whole houses thing to be more tapped into; it' always been available but they just hardly ever actually did it but now they are and the families are getting all upset.

Jude, wow, didn't realize you'd spent so much of your own money on your mom's house; won't say we spent that much, maybe we should have, we did spend some for same reason, to keep them safe; dad wouldn't do it but it needed more; told dad's grandson when he moved in that, as he talked about it, if he'd spend on fixing it up, doing what needed to be done, to keep up with how much and that when it was all over I'd be fair with him about it but either he didn't trust me, didn't want to do it himself but have it done and who he was counting on to do so never came through but it never got done. Does your mom have a car? dad still did, though it began to fall apart, like the house, so more and more, grandson did begin to use his own vehicle as well, though dad never used his, this was after he quit driving. Where grandson began to have issues is when he began to use the money he was getting to take care of dad, not from the state, though we do have some programs like that, but those are very limited here, but, thankfully, in that sense, dad was a veteran and they have access to a better program, to pay to keep up his girlfriend.

But, now, he couldn't have done anything like take dad's money to go buy another car or anything like that; all he had access to of dad's was just what was in his checking account, but, oh, he did also use his money first to go in debt to buy himself a top of the line truck; well, maybe not quite but in light of his finances, yet, rather than something he could actually afford, especially when he'd already done that once and had it repossessed and it almost happened again when dad passed right before he got this one paid off and yes, he/they/him and his gf had to have the best of everything.

However, I understand what you're saying; dad actually had no knowledge that grandson was getting paid; he couldn't understand the concept of him needing it when he considered he was taking care of everything; not sure how it would have all worked had he really understood what was going on.

But, especially since grandson was getting paid, even if he didn't understand, I really think he should have been doing what he was wanting and he just wouldn't do it.

I will say, along the lines of the trust, for the veterans, though they're trying to change this, you can do that and go into facility cost-free immediately; that's what that guy did; for everybody else that has to be done more than 5 yrs. ahead of time - they do what they call a 5-yr. lookback to see if anything like that has been done and if so, they can still take the house and sell it to pay for your expense of care but not until after you've passed away but that isn't done until you actually go into a facility for care but the putting it into trust the contract saying you can stay there is called a "life estate" over here; that's what my fil had done for my mil for when he passed away; sometimes it's drawn up in such a way that it only applies if you do actually stay in the house; other times, as in our case, that wasn't actually put in, so she still has it even though she's remarried and moved out, so even though the house is deeded to her daughter - and there's more, like was gotten into on another post on here - and she's rented it out, even though mil doesn't like that, though not sure why and since she has the life estate she has the authority to not allow it, although not sure she realizes it - if she ever has to go to care - which is something the kids are beginning somewhat to be concerned about with things that are happening, although think it's more from thinking they don't know what they would do because they're seeing it as her not having anything, since they think they do and they think they couldn't afford to give it up - they would come after that property since technically it's still hers; it only has the life estate; it's not in a trust or anything; don't think they understood enough about that, although the attorney should have, I would have thought but maybe not; he wasn't an elder law one but think he should have referred him to one; maybe he didn't even know enough to do that.

She does still get fil's pension even though she's remarried; you didn't used to be able to do that; she watched her older sister go through that; she wouldn't ever marry the man she lived with for that reason; not sure what she would have done had that still been the case, don't think she would have just lived with this man - though they're not quite, she has a used to be friend who seems to be doing something very similar and we know somebody else seems to be the same way but at least she didn't have to deal with that.

So, now, Jude, with you having put that in your directive, you can do that and with everything else you've done financially, they would have to do that, for free? the whole withholding food was part of the comfort care I ended up putting dad on that really did upset grandson but he wasn't eating anyway; I'm assuming that's the situation you're talking about, right?

wow, in some ways though, that might have been a relief to grandson; he had a really hard time seeing dad like he was; and, maybe if he'd actually done that, to me, too, but as it was, I pretty much just stayed with him all the time. Would you actually not want to be with your mom?

To go back, grandson wasn't working anyway when all this started with him taking care of dad; actually, in some ways, though I hate to say it, he was like that husband you were talking about that worked on the side, but, though, in all fairness, there were some other circumstances that had led to that being the case; it wasn't really the way he wanted it and things seemed to have changed now that he is paying in; he really, before, didn't expect to live that long but the longer he's lived the more I think he thinks it just might be possible and he won't have what dad had; he's not a veteran and now wouldn't be able to be, not that I expect that program to still be that viable then anyway, like what you're saying's happening over there; happening here, too. But I'm trying to think the same way you are, about me, is he going to want to do that for me; am I going to want him to but how do you define illness, what if it's not an actual illness you have but just the normal aging process? how would that be handled?

It's the old old story deb you need a lawyer to set up a trust - well actually you don't but you do if you want to seal all the loop holes ask around I am sure there are specialists in that field although they won't advertise it....after all it wouldn't do for us all to do it now would it!!!!

but can I from this side? you know they say we're not like you but we have much the same system, just by different names - we pay into Social Security and Medicare and taxes that go for Medicaid - don't know why we don't just make a named entity as well - as well as unemployment insurance so that, yes, same thing, the sick, retired and widowed can get benefits. But, yes, they never intended that you wouldn't go ahead and save on your own as well, like my parents did, too. I was just telling my cousin this this past year that I don't think it's right either; these people, like my dil's grandparents that spent everything they made to expect to then be taken care, but I think they really thought that's what they were promised; as far as I know they never bought a house, while my parents went without to do so; not sure they (dil's gps) ever went without; we anything; we call it the housing projects here or we do have subsidized housing (Section 8) that that's all they've lived in, at least as long as I've known them; now he's in a nursing home that he doesn't have to pay for but yes, even those who've never worked can also stay free in one as well, while, yes, if mom or dad had gone in, they would have had to pay so I do understand; guess what had been trying to say or ask, in theory, I don't agree that you should shelter - or put in a trust - your home to get out of it but otoh hand I don't like it that those who never tried to have anything - why? to not have to pay, either - should get it free and you, who did work hard to have a home and save, should to pay for yours and theirs as well - so what's the answer - somebody has to pay - so what? really, you should charge everybody? - because I think, maybe, if they did, his kids would come up with it somehow, if they insisted he had to be there, which, right now, I'm not sure is the case; do know the daughter the made his guardian really didn't like it because she liked getting dad's check to have him live with her to pay for her a place to live so she didn't have to live in the projects, which, actually, she couldn't do anymore anyway or get the subsidized housing because she wouldn't go by their rules but she's just got her niece, my dil's sister, who gets a check, which we're not sure how that is since dil can't get one, living with her now paying for her place.

But I was talking about what you're saying, I know other people, on the other hand, who do have the money to hire the accountants/lawyers to put all their money in a trust, not just their house, to go into facility and not have to pay when they could easily afford to do so and this is after they've apparently spent a fair share going around the country playing golf.

I have to agree re the pyramid selling CM. Beveridge proposed that all working people should pay a weekly contribution to the state. In return, benefits would be paid to the unemployed, the sick, the retired and the widowed. They were told cradle to grave....h*ll I was told cradle to grave.....

He never said don't work or don't save we will give you everything. It was proposed that your savings would give you that bit extra when you retired, so Mum and Dad did just that

It isn't the age alone that rankles CM it's the fact that it's not a level playing field. I believe that if you work and spend all your money and of course you can, then it is unreasonable to expect the state to provide ....example:-

My Mum worked alongside a woman in exactly the same role as she had both were managers in their own right. Mum and Dad went without to buy a house - Dad worked two jobs just so we could have a holiday as children. The other woman and her husband who also had a good job lived in a council house (I dont know the equivalent in US but it is housing owned by the state and rented for quite a low price). They went abroad when people didn't; they went on cruises two or three times a year had expensive cars (which miraculously never got stolen or damaged). They have always had the best of everything and spent to the hilt. Now she lives in a nursing home and she doesn't have to pay for that either. However she did pay National Insurance (like we had a choice in the matter!)

In the same nursing home is a woman who has never worked nor has her husband - and I quote - he did work on the side and it saw us all right. This means he didn't pay tax on it he didn't pay NI on it and spent his whole life working hard at doing as little as possible. She too gets a free place in the home. If Mum wanted to go (and she doesn't) into the same home it would cost us 5-600 pounds a week and I think that that is shameful given what they gave up while others squandered their money or defrauded the state. There is no positive to having scrimped and saved - you have effectively saved it for the state to take it off you.

All I am saying (and I did promise I wouldn't get into this debate) is that keep the playing field level. It is for all or for none. At the moment if you have the money and can employ the accountants and lawyers you can circumvent the payments even though you can AFFORD BEYOND ALL DOUBT to pay for the care. the only saving grace in that is that you can't CHOOSE which care home you go to .

As always it is a rich and poor divide with the middle folk paying %age wise the most. Now I am going to remind myself that I am not going to debate this further...repeat Judith you are not going to debate this further ...yes I know I said that before but I'm not!!!! grins at CM

Jude, National Insurance may turn out to have been the biggest pyramid selling scheme in history: I'm watching that space. Along with income tax, introduced as a temporary measure 200 years ago don't forget. Our services, along with those of most Western economies, have been funded mainly by borrowing since WWII and sooner or later we will run out of credit and the bills will fall due - (see Greece).

At which point we will all just have to look after one another, using whatever resources we can lay our hands on. And maybe that wouldn't be so catastrophic, after all.

But meanwhile no one lives for free, and it's a mystery to me why it should ever be assumed that age alone exempts a person from responsibility for paying his way if he can.

Nothing I have to take issue with you on one point although I agree with what you are saying about looking after your children. HOWEVER

As a caregiver I am entitle to FEEL how I want - it is a fundamental human right. BUT if I act on my feelings via exclusivity, isolating a vulnerable parent, withholding care, medical evaluations, then it is indeed abuse, let alone physical emotional or religious abuses that occur regularly, the latter being things like offering non-Kosher food to someone who is an orthodox Jew or not getting them to see a minister/ priest/ Imam/ Rabbi or any other religious person I have not mentioned.

Where we differ is on the financial side. I maintain that it is wrong for an elder to expect a child to give up their access to essential funds (ie work) and to devote their time (100% of their time in some cases) without some sort of recourse to payment for that. Not every caregiver has the financial wherewithal to do that and it is perfectly reasonable to expect some remuneration whether it is in a weekly wage or some other means.

HOWEVER it is NOT OK for the caregiver to do so without a discussion and agreement on this (although this may have to be with a POA or guardian). It is NOT OK for them to help themselves for unreasonable expenses like buying a top of the range car to drive Mum about when a reliable second hand jalopy would have done or buying ridiculously priced shower gels because they prefer them when an off the shelf everyday one would have done.

After paying bills for several years and paying rent too I might add I now live rent free and mother pays for my food and for the transport I have for HER NEEDS - she refuses to get a taxi so she has to pay for the running of my car and I see that as reasonable. The only time I have sole use of it is when I go shopping or on a rare respite weekend and I pay for that. I use the money I get from the state to buy day to day things like a meal out for us or some sweets for her, I happen to like a particular brand of coffee so I buy that and it pays for my clothes etc. I invested 40K of my own money into a property that she has sole ownership of and I did so to keep her safe because she would not spend the money although she had it. I just think it is too too fraught with difficulty to generalise over caregiving and finances and feelings - we all have trodden different paths and our views are tainted by them - because we are human after all - well you all are...me I am definitely not human right now!!!!!!

I live in UK so it is a lot different. If I put my house in trust then it cannot be sold because I don't 'own' it per se. Simply because my Son and Daughter and Grandson will be the trustees and there will be a contract in place to say I can live in it for the duration of my useful life.

Then, if I need to go into care - like I said god forbid - then the house cannot be used for collateral. There is a reason for this.

When I first started work we didn't need health or retirement insurance we paid in weekly to a National Insurance. Elderly care was free. We got a pension when we reached 60 (65 for men) Now times they have changed. No longer can I retire at 60 I have to wait until 65 (hmm no comment from me on that one - I get weekly carers allowance of £61.25 and that is it I might add but when I reach 65 that stops) Elderly care is no longer free and the rising price of houses is something the government has seen it can tap into. So if you save all your life you have to pay for care; if you don't ever work (not because you can't but because you don't want to) and live off the state for your entire life you get free care and that rattles my cage! It appears to me, and I don't want to get into a political argument because this is the way I feel not how I expect others to see things, that all my life I played the game and paid into the system and now I am getting to the age where I expect to get some back I am being told NO because they changed the game rules - well no dice, I am taking my ball back and I am not playing.

BUT on the health side my directive stipulates that the ONLY people who may take care of me are professionals or people who are qualified in care. It also states that in the event that I have an illness which is either terminal or from which I will not recover or (but not limited to) dementia, to withhold food liquid and medication/medical attention other than pain relief (coward here when it comes to pain although to be fair I do have a very high pain threshold - I was asleep naturally when the nurses woke me to tell me to push because I had already delivered my daughter's head and they needed the shoulders through).

My children may visit me in care but not more than once a week. I absolutely do not want them to go through what I am going through and if the only way I can do it is through the law then so be it.

It is fundamentally wrong, in my opinion, to expect my children to care for me. Again in my opinion, my children should be living free and useful lives to support the state via taxes in the provision of care (like I said it's different in UK). What I do not want, and will not have, is my children feeling guilty for not being my caregiver (and I know neither could do caregiving nor do I want them to therefore I am not taking from them something they want) so I have acted beforehand and stepped in to that end.

Like I say I dont expect anyone to agree or disagree with me I am just telling you all how I see things on this side of the pond and as for changing my mind I won't so please don't try to make me - it would be a waste of time! Stubborn 'ornery cow on a mission here!!!!!

debdaughter, when I say the brother has no friends, I mean he most likely has none to socialize with, because he can't leave the father alone. He may have people he talks to on the phone or computer. But if he is crying on the couch and feels like a prisoner(that is what the OP said), he is isolated.

That is very common on sole caregivers, they can't leave the elderly parent to go out for the evening, and pretty soon the invites dry up because the answer is always no, I can't make it.

Also he no longer works, so what is there to talk about? Caregiving, dad's latest fall, the caregiver doesn't want to talk about that, and honestly people don't want to hear about it. So the caregiver finds they can't discuss their work, can't discuss a movie they just saw(unless it is on TV), they don't have much to say. So they retreat into themselves.

When your friends are talking about their weekend getaway, or the new restaurant they ate out, and all you have is caregiving, you feel inadequate and don't want to burden others with such talk.....so they find it easier to just not interact like they used to.

It's a side of caregiving many who haven't done don't think about.

Nothing Special, your name suits you. You don't know what you're talking about. Most "do nothing" siblings have no suggestions. Because they don't want to play a role in the situation. They're "hands off".

So it isn't in most cases that the sole caregiver is arguing over how to handle the care, they can't get any help even when they beg and stand on their head asking.

You're way off, it's not about arguing on how to deal with the parent's issues, it's that they play no role in it.

French, I had actually forgotten about the falling; of course I'm not sure he's going to the ER with all of them - or any? did it say, have to look again, but understand what you're saying but wonder if it's the same everywhere, when my dad fell - and then drove himself to the doctor where they sent him to the ER, they sent him home with a head wound that they did not staple and with only oral instructions regarding otc antibiotic to keep it from getting infected that he did not understand and therefore it did indeed happen, while in a different state when his cousin did the very same thing they not only admitted him and kept him for a week for "observation" but then wouldn't even let him go home then but sent him to rehab until he was completely well. But sending him home in an ambulance; where do you ever see that? they let him drive himself home; bu later, when he was taken as opposed to driving himself, they didn't even have to be asked before admitting him, but they wouldn't do the surgery they would normally do on, say, my dil, but they did keep him that time for a week but sedated the whole time, which just made his whole overall condition worse, so not sure if we accomplished anything or not. Maybe that's why he lost 20 lbs. We've managed to get CT scans done, though, through ER. But if sis's dad has been going to the ER with each fall I'm surprised they haven't called in a social worker yet; they finally did with dad, unless he's not actually been hurting himself; they've been telling us they can only deal with life and death issues; everything else see your primary physician; I've wondered if that is the care rationing but he should be on Medicare I think. Not exactly sure what's going on; know dil's surgeon said she should have kept her after her surgery but been told it was something regarding the hospital and she has insurance but through the ACA. And not everybody can, at least not easily, especially if they have chronic health issues!

@surprise. Why on earth would even a moment think that one has a choice as to whether or not an "elder" relative could remain at the hospital and be admitted no less. Certainly a neuro or psych eval would be manna from heaven these days when the E.R. staff is much more likely to send home the patient in an ambulance the duplicate of that which brought them. Ask for admission and a full work up would I am certain be met with stunned silence. During the past two months my stepfather was discharged from two very different hospitals, both in nearby Jacksonville, one of which was the estimable (?) Mayo Clinic. Each time the discharge was put through very late on a Friday afternoon after what used to be called "observation" and some IV fluids, as I was told the tests he needed (one of which a CT Scan of his lung, which an Admissions X-ray had shown an ominous looking nodule. I was told by an intern that the supervisor had overruled doing the scan while in hospital. That and the other tests would have to be ordered on an out-patient basis by his Primary Care Doctor, but then for some reason he put them off for another two months time. Clutching so-called discharge papers he came out just as sick if not sicker than when he went in. He definitely weighed a lot less. I'm sorry I really this is off topic but I felt it had to be said. Maybe the folks at your local hospital have their hands tied. Maybe it's the rationing of care we know is coming. You know, when only the wealthy will get good and true health care. I've seen it in other ways too, just as my own husband has been the victim twice of very major mistakes in hospital. My advice is to stay well everyone!

Jude, when you say you have an advanced directive - regarding your children not taking care of you - what does that mean? are you talking about financially, thinking putting your house in trust to take care of you but, no, that's not usually what that means, is it? how do you plan on working this out, that the state won't be getting involved either - we did save them as well but only because we used federal VA funds

nothing special, first, I'm assuming you're talking about me in leaving a teen alone so let me clarify, my husband, his dad was here the whole time; it's just that he went to work, so teen was left here during the day by himself and I'm well aware of what you're talking about and know of others who both parents went off and left their teen alone all the time with consequences ensuing but that wasn't quite our case so for the most part things went pretty well and not sure what long term means to you but I had no one else - I have no siblings so what was I to do except, well, I guess maybe I should have taken him with me but that's another issue or maybe I should have insisted they come down here but could I make them? no....guess they could have just gone to a facility....

grandson was the only one and he was working at that time; now later, with mom, no....not married, no children full-time and the thing I haven't mentioned is all the living off my mom and dad he'd done!

but yet when he was put in that position of taking care of dad he sure didn't want me continuing to make any decisions even though he'd had nothing to do with anything when he started; therefore had no idea of the situation.

but I'm executor, Jessie,

and I will say, though not really sure this happened while I was gone, but possibly because we had a tornado right before I got back; he wasn't old enough to drive but he knew how and we did have a vehicle here at that point so he did take it - and I would have dared anybody to have had a problem with it, though I suppose I might have for having left him, but anyway - to go to a friend's house that was safer than him getting underneath ours, which is what he did to begin with then got scared the house might fall on him and kill him and there's more to it than that that, true enough, not sure I knew about then, but also let me say he did have a brother here as well to look out after him, who had a different work schedule than dad that he could go to or rather suppose brother could come get him

but, Jess, I am so glad you hear you actually say you actually do enjoy the free rent of living with your mom; I've never heard anybody say that; if anything, say it's not worth it - really? even grandson would say it, even though he would talk about how stressful it was having to try to come up with it every month. And dad was also paying all the utilities and at least all the food, if it was acceptable to grandson, which it wasn't but that was on him, not dad; he would have. Not sure he ever really thought about appreciating it, though, even though it meant he could keep all the money he was also getting paid to take care of dad for; maybe he just thought, as I've gotten the idea, that he deserved it all for doing it, instead of seeing it as helping him as well, like dad was looking at it. He would have had to tell him over and over as well, since dad had dementia, as well, which is why he thought he deserved; he had a hard time with that having to tell him stuff over and over.

But, really, in his case, he resented me before all this ever started, unlike Ozark. really - in dad's mind it made the most sense, as well, for grandson to be the one, since he wasn't married and he wasn't working, so how was he coming up with rent money every month? I really don't know what I would have done had he not done it.

I'm not sure really what dad actually wanted at that point.

But do know grandson did get exhausted. But I wasn't going to feel guilty over it. He would hear of doing nothing different, except, maybe, getting some respite, though he wasn't really wanting to do that, because he did want that "favored child status" nothing special's talking about; he wanted to be their child and was jealous of me that I was and he wasn't - and he did want their house and all their money as well; and he did want me cut out of dad's will and for me not to have anything of theirs either and even though he wanted me when he found dad collapsed not sure he wanted me coming and having anything to do with dad because, yes, when dad wanted him coming and being the one taking care of him he did indeed feel entitled to it all then because of that. He did have that attitude of once he started living with dad, he was the only one to have any input into his care and I began to see him isolating dad and yes, he began to use dad's money for things for himself - yes, even though he was getting paid to take care of dad - now withholding care can get somewhat nebulous but he certainly wasn't doing what dad had wanted him to move in with him to do, although I do have to say he was still taking him to the doctor, although I do wonder if it was only because, in his case, he was under the VA and if he hadn't he would have been questioned on it but some of the above is why I definitely went when he was taken to the hospital where I had input into what happened there and the way he handled things at that point with me there they came very close to being concerned about him being abusive to him and not wanting to let him go back home with him.

He had to have a meeting with the hospital social worker and convince her before they would and then it was only on a trial basis. Looking back now and based on what his hospital doctor said on his last admission I don't understand why hospice or palliative care wasn't called in then and had I known they could have been I think I would have asked for it; we/he, I believe, could have used that resource, although, again, I'm not sure he would have actually wanted to have them coming in. Maybe I should have gone ahead and gone along with them wanting me to get guardianship of dad but then they should have handled the way they got his hospital doctor to say he needed it better; they really botched that one. I also think once they decided to let him go home with him they should have provided more practical instructions on how to handle the situation they were concerned about, something that I believe hospice or palliative care would have done, at least it was something they were more concerned about when it was done at his last admission.