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

The reason is there is some hostility is how the OP views her brother.

Here is what she said: My brother believes he is in prison- counts the nights he sleeps on dad's couch and cries. Normally he is stoic, capable and very independent and now he appears to be in a severe depression.

Ya think? The brother feels like he is in prison because he has done caregiving for 9 years non stop, not surprising that he cries on the couch. As I said earlier surprised he hasn't been fitted for a straightjacket.

One poster on here said "I know it's not much of a vacation for you to go"...LOL. Vacation for the OP? How about the poor brother? When does he get a vacation?.....oh I know "he chose this".....LMAO!

No reason the OP couldn't have at least visited once a year and told the brother "you relax, I'm here now". Too bad if that meant no vacations for her, her brother needed help.

She is very "hands off", she arranged for the family minister(it's not her minister) to go with HER FATHER to take tours of ALFs. Perhaps if she had done that in person along with her brother the father would have gone into one two years ago.

I see no comments of gratitude for what the brother did all these years for THEIR PARENTS, but I see critical comments of the brother. Oh he's going crazy now. If things have really gotten this bad than shame on her. She is her early 50s, how young can her kids possibly be?

Maybe this is a ploy? Brother took care of first mom for 6 years, now dad for 3 years, dad is starting to wind down for good, better get there have the brother declared crazy in time for reading of the will.

Think it doesn't happen? Guess again.

Whoa, Irishboy. We don't know these things. We tend to bring our own situations into our answers. I know I definitely brought mine into my answers when I spoke about what the brother must be going through and what he may need. But we do not even guess if the OP has been involved or not. It is apparent that since she is on here that there is involvement. I believe the people who talked about burn out and depression for the brother were the ones who had it most right. I also know that it is a difficult situation to help the caregiver when they get to that point. When we're sitting on bottom and it looks a long way to the top, it is hard to stop the climb out.

The OP seems to want to help. She knows her brother and father, so probably has a better idea what will work. My first thought was an SSRI for the brother if he is depressed. My second thought was a part-time job with a caregiver coming in to help. He needs a return to the world in my mind more than his father needs help exiting it.

I've been sitting alone with my mother this evening. She is out of touch today and not understanding words very well. I thought of how nice it would be to have someone else here so I wouldn't be going through this alone. A journey into a scary place is a lot better if you have people with you. I am just hoping that frustratedsis can find a way to help her brother get out of that low place. I understand how he got there. Do I ever! Getting some joy and hope back into his life seems to be what is needed. Someone needs to give some care to the caregiver.

I hope he will go on respite. And I also approve of the idea of telling the father that he has to have some help come in if he wants to remain at home.

Well, again I agree with Irishboy. When the sister suggested she'd come for a visit right away... a visit? It's way beyond that point now. The uninvolved one doesn't get it. My sister told me many of my responses to her comments or questions were along the lines of "no sh*t". Well, that's right, get a clue. Mom's in a hospital bed in her living room. What part of that doesn't spell something out for you? My sister is just four days away from experiencing this first hand, and I have planned to go to a friend's house for pizza. First pizza in two years, and first meal with a friend in seven months. Overdue? Oh yea. At least Frustratedsis MIGHT help and get up to speed as to what reality is now. I have another sibling- rarely calls- thinks he's doing right. what? We disown our siblings for this kind of misbehavior. Heads up.

Do the brother and father have house cleaners? If not, hire some for a few days a week to clean, organize, keep the whole kitchen in shape- keep the bathrooms spiffy, do the laundry, maybe even serve some food- water some plants, wash the windows, replace lightbulbs. Lots of hours involved here, but it's needed and it was said they have some money for what's needed. Will Dad let this kind of help enter the house? Did Dad ever have house cleaners in his younger days? It's not controversial.

Irishboy, it doesn't say he took care of Mom for 6 years. It says he took care of her (don't know how long), and she passed (6 years ago). Then he must have helped Dad for three years, not living with Dad, and the past three years he has lived with Dad. Monumental. (My parents are positive, respectful, friendly, and old, hurting, and confused as heck. If they were difficult, that would be a whole different thing- and I'm quite exhausted as it is.)

Jessiebell, while I agree we look at our own situations when we respond, please review what the OP wrote.

1) No mention of gratitude towards the brother, after 9 long years of caregiving both parents. Only comments about his mental state. He didn't get this way overnight. If things are really this bad, than shame on her. She let this guy get this way.

2) She had a stranger( their family minister but a stranger to her) take HER FATHER on tours of ALF's, that is something she should have been involved in.

3) She's made to feel like "company", well sweetie when you have no involvement with doing the hands on caregiving, and you decide to show up now you are COMPANY, which many times means more work for the already overworked caregiver.

Why the concern now? Where was the concern 3yrs ago, 6yrs ago, 8 yrs ago?

ccflorida, you're right. The uninvolved one doesn't get it, but they're always quick to put down the caregiver. You can't live on the other side of the country, stay away, and than get your knickers in a twist when you're made to feel like an outsider. You don't decide after all this time to now take a role(for whatever reason) and expect the others involved to just say "OK".

My antenna goes up when I see a long time noninvolved sibling suddenly become interested. Usually there is an ulterior motive.

And I hope you enjoy your meal out with your friend, you have more than earned it.

ccflorida, thanks for pointing that out. But he took care of both parents, as did I.

And mine were like yours are, kind and respectful. And it was still exhausting.

I feel for the brother. No reason he had to go this alone, there is FMLA, get someone to watch your kids(they do have a father and can't be that young when you're in your 50s), get on a plane, and offer some help.

Irishboy, you're reading stuff into the post that may not be true. He cared for the mother until she passed 6 years ago. He didn't move in to provide 24/7 care for the father until 3 years ago. We don't know when he quit his job. Maybe frustratedsis will fill in more details if she is still in the building. All we know for sure is that he has lived in a difficult situation for 3 years. I have a feeling his father probably was the primary caregiver for the mother before she died and the son helped out. That would make sense, since he didn't live there then.

Irishboy (cute, as I'm an Irishgirl) we're not sure of daughter's situation though I do somewhat understand; I'm 56 now and basically started 6 yrs. ago, so guess, though I hardly thought about it at the time or really not till now, I was 50 and I had a 13 yr. old at the time that I left at home to go stay with my mom while she had hip surgery, but I had a husband; we don't know her situation with her children's dad, although even as I type this guess I've been thinking she probably didn't have one since she said she'd been raising them on her own but yet she talks about the custody situation with not being able to leave the state, which does say she must have some type of relation with their father but really starting off with that over the respective ages of her and childrens ages; mom passed away the next year; dad was ok for the next year but then he had a bad fall and hit his head and wound up at ER where they probably should have put staples in his head, might have kept it from getting infected but point they sent him home by himself even, while his cousin who had the same thing happen they did admit him and keep him for a week and then sent him to rehab but was in different state, anyway I went and stayed then, again leaving my then 15 yr. old home, who was home by himself when a tornado came through - only finding out just today how scared he was; he was told then he didn't need to be living by himself so started talking about selling his house and moving into assisted living, while in the meantime I did get a housekeeper in to clean kitchen, bathroom, do some cooking, then dad started wanting his grandson to move in with him to be there so he finally agreed to early the next year; I went that summer and was when dad said he was going to tell his doctor at his next appt. that he was going to quit taking his medication but never got the chance; he wound up in the hospital for 2 weeks and I went and stayed then plus another 2 weeks after he came home till we got his discharge plan of care worked out I went back the next spring when grandson wanted, to let him have a week's vacation, when son would have been 17, then went back again that fall when he needed to be gone again so can somewhat see both sides

Jessiebell 3 years is a VERY LONG time to be doing 24/7 care by yourself. I did that with my dad for close to a year and came to close to be coming unglued. Life was running to the supermarket for a quick trip or Target, or taking him to the doctor, that was it. My father would even say to me "this is no way for you to live", well you do what you have to do.The OP seems surprised that the brother is becoming "unhinged". What the h*ll does she expect? And why did she wait so long?

debdaugther, I'm sorry your son went through that tornado that way, but teenagers aren't toddlers. You can leave the state for situations like this, you may not in a custody battle take a minor child out of that state permanently, but you can leave the state yourself, leave the teen with their other parent or another responsible adult, take FMLA from your job, and get on a plane and deal with the situation, it's your father as well.

And if the brother makes you feel like your company, oh well, when one adult child is doing this solo for a long time, someone coming in to the house who doesn't live there, well they are company.

You can't do caregiving long distance.

irish, that was my point; I did make those trips and does sound like she could have too; don't think she's in or has been in a custody battle; just that, like you said, she couldn't just move her children out of state, but possible he wouldn't work with her to keep them for her to go but think the question was more how old would they have been, toddlers, with her in her early 50s now?

and was thinking possibly same thing as Jessie with dad mainly taking care of mom when he here but not necessarily all the time anyway, why I had to go take care of mom when she had her hip surgery; dad wouldn't have been able to do it but, yes, either way, 3 yrs. is still a long time; dad's grandson didn't even have to do it that long and I was still there 5 times

Yes, she could have to, but she hasn't.

Two years ago she had a minister local to her dad and brother take the father on tours of ALFs. Why didn't she do that? Fly in, and handle that, don't leave it to a stranger. And even if the ex-husband said he wouldn't take the kids, than get a family friend to do it or a neighbor or a friend of your kids.

Someone will say OK. You say I need to get to my dad and brother, can you watch my kids for two weeks, if necessary you pay someone.

And you go for 2 or 3 weeks(FMLA protects your job).

And we're not talking toddlers when you're in your early 50s, the oldest is probably an adult.

My issue is the lack of gratitude towards the brother, and the annoyance that he is having issues(He is BURNT OUT), letting it get to that point, and than being offended cause she made to feel like company, well too bad, you're out of the loop, you haven't been involved, now you want to run the show long distance, doesn't work that way. Sorry, you don't let one sibling carry the load for years and than decide to play a role, and expect them to bend to your ideas.

If she does "visit" than you listen to what is going on, and if you're asked to dive in you do so, that means laundry, cleaning, whatever. And if the brother is falling apart than take some responsibility in being so hands off and letting that happen. I hear a lot of criticism of the brother, but not much empathy or any gratitude for doing it all alone.

Her profile says she is caregiving for her father, no your brother is doing that.

For Frustratedsis, I hope these responses have helped with insight to what to do and where your brother might be at/coming from. 1) I also encourage you to get there now and make sure your brother knows it's to physically help, not judge him and Dad. 2) When you're there I recommend caution before making any changes. Don't assume housekeeping or whatever will be the answer. While it might be just what is needed, it may not be what helps the most/a drop in the bucket, and it might even be seen as insulting (how about if someone presumed to clean your bathroom their own way because it was "too dirty" for them). Of course not your intent, but be aware/sensitive what you see and what they need could be different. 3) Also, I was in my 40's before we had our first child, and our closest family is two time zones away. So, I understand that your kids might be younger than some assume, and in any case finding trustworthy care can be very challenging just to get three kids safely to/from different schools let alone 24/7, and that not everyone gets to dictate their work schedule for time off without risking unemployment. I knew very few people locally beyond work and social niceties before the kids were in school, and the people I know now need help for their own kids and literally can't fit three more kids in their car even if they could help. So people shouldn't underestimate or judge too harshly your potential difficulties in arranging it. But it sounds like you have a plan now, so yes... go...now. 4) From a caregivers pov though, when my sister (finally, so it felt to me, although she also had things to deal with) came for a week it was difficult for both of us. Because of everything I was managing, I had a daily and weekly routine with doctors etc. carefully planned, yet on edge for a potential 911, 24/7 for years too. No extra time for errors or explaining. It barely felt worth it to me. By the time I showed her everything and she got the hang of it, she'd be gone again. At a minimum it takes time to orient/train even a sibling in the routines that work. I worried how she'd physically change or lift him on his difficult days. And, until someone is hands-on, caregivers just don't know what the visitor/sibling's view of "help" looks like. How could you even know what's needed until you're there? I realized it was important she came. But understand it can feel like "one more thing" for the caregiver, even if you are the best helper and sibling in the world. 5) Also, although well-meaning by others, my advice would be to NOT "invite" ("alert" is their word) social services unless you think it's grave/dire (and then the police for a well check if you want someone to actually show up) until you are there and have assessed it and addressed it with your brother. In my experience the "social workers" by title were mostly case managers, not credentialed, either unorganized or overwhelmed, and their methods of interviewing (interrogating) sadly didn't translate well for my Dad. Also, the approaches range from no response to swooping in and taking all control including financial and not regarding anyone's wishes or well-being. In between I found one at the city level who was the real deal and helped me navigate the county/state system along with a pro-bono legal group (they didn't do any work but guided me in what to assemble) for financial assistance of in-home help. It was daunting though and took a year, several 3" binders, and an astute judge followed by more visits. I finally got the call the assistance was granted...literally the day my Dad died. 6) So, be kind to your brother. Listen. Find out what help looks like to him. Offer to take on what he needs most. But also realize just asking/answering your questions may be overwhelming so you may need to just figure some things out. Your brother may have had an initial run-around or threatening experience when/if he reached for help from agencies. Also, on the upside, be assured some people in the govt. agencies can/will help at least with information and some caregivers can deal with the most crotchety people and help moderate them. On the downside, some agitate them, and others simply walk out without notice. We found all types on care website. Those with nursing/aide backgrounds worked out the best for us in managing crotchety and physical issues/fall prevention and recovery because they've seen it all and have experience with lift belts. In-home cameras were the best investment for peace of mind and sorting out the capable ones 7) Have Dad checked for neurological/pathological if he keeps falling and treat your Dad's depression. My Dad was finally diagnosed (not by his neurologist or the hospital which recommended out-patient "balance" therapy which was a waste of 6 months, but by a neurosurgeon recommended by one of the nurse aides) with normal-pressure hydrocephalus. A brain shunt did wonders for falls with a huge improvement in incontinence. A small addition to Rx helped depression. He was already on major anti-depressants, but I left an urgent message for the doctor who'd been hesitant to change anything that we had to do something NOW when Dad (who was not a dramatic person and thought every day alive was better than dead) started talking about wanting to die/kill himself. A small change (just 5mg of a different Rx), lifted the world for him. Meanwhile all 3 meds they tried for dementia/Alzheimer's made him an awful, awful bear. Awful. 8) Reassure your brother there's nothing wrong with "trying" therapy, an antidepressant, or anti anxiety too for a "rough patch" himself. Find out what his concerns are. Go from there. If he can feel the relief of not being overwhelmed to tears it will be good. But for people with strong convictions or fears (such as becoming addicted to something or to seem as weak) there is understandably a lot of resistance. Maybe introduce your brother to this site and let us reassure him too. Caregivers usually don't have/see how to get the time to take care of themselves or reach out. When/how do we go to a doctor or support group to talk about it if we're 24/7 about Dad even if we're not the ones with him? Just getting them into the car can be an ordeal especially if they are fall-risks, disagreeable or just unpredictable. 9) Make a commitment. There's immediate and lonf-term help needed. Come to help, and before you leave set the next date. It may likely need multiple visits to really know what's going on and to really help with the hard stuff. You sound like you care and want to help and that your brother and Dad need it. 10) This community is intended to help support and offer advice from our experience and resources. Best wishes. Please do let us know if we can help more.

I think it is very easy to criticise when we're looking through the window with all of our baggage impacting on our thoughts and we really don't know what support, if any, she has been offering or indeed able to give although it doesn't appear to be all she could have done (just telling it as I see it).

Her children must all be 18 now as she doesn't get child support so they are more than capable of looking after themselves. I do appreciate that financially she may not be positioned to get across country but in a worst case scenario her father could pay for that and it would be acceptable as payment for respite.

I think given the difficulties she faces, (let alone the immense challenges her brother faces and her dad for he is clearly not well) we must try and find a way through this mess rather than heap guilt on someone who isn't really coping with her own life too well at the moment.

Now I am in the UK and if you involve social workers you automatically involve social services - they are interlinked so excuse my lack of understanding re the exact wording or services you need to invoke although there are people on here that will help you with that translation.

Scenario Your father's needs are not being met - even though he is in denial he still has needs that are not being met, he's just not aware of them.

You have to SUPPORT your brother so in the first instance make sure he has someone in the house for 2 hours while you take your brother out to somewhere quiet and serene, where you can get a coffee and where if he suddenly breaks down on you he won't have a load of people staring at him. Explain you are her to help but you need to know from your brother WHAT is happening, WHEN it is happening, WHY it is happening, HOW it is happening and WHERE it is happening. He might get belligerent and repetitive but this is a process you have to go through. Explain that to him

Then for each problem ask him what would make that something he could MANAGE - not cope with we can all cope waaaaaaay belong what we want to. This is about him taking control back. Now we can see Dad isn't go to give in too easily but then neither will the professionals. In fact if he is awarded a guardian his options may get closed very very quickly as they tend to seek to tick a box. Mr xxxx in care...safe tick looked after tick...you get the picture

1 You need to get a POA arranged ASAP - if you don't then you cannot (and neither can your brother) act in your father's best interests - and let's not forget it is your father's best interests that are at the pivotal point of all this. However if he has dementia and I am pretty sure an assessment will show he has then the POA wont be straight forward because he cannot consciously, and with rationale, give consent... so 2 problems that YOU need to HELP your brother sort - please don't go in all guns blazing he has done his very best and he knows it is not enough to meet his Dad's needs, he just doesn't know how to make it right.

2 Your brother must have respite and he must have it now - if not there will be two people to look after and pay for, or worse

3 You will either need to be the respite or you will need to arrange for respite to be paid for - your brother is unable to see the wood for the trees right now - he is incapable of arranging this in all probability. I would definitely try to persuade Dad top go into a respite situation for 2 weeks while you clean the house through, redecorate, make it safe ...quite frankly whatever excuse you use is fine as long as he goes. Then you can have him assessed and you can go through that house with a fine tooth comb cleaning everything from top to bottom as a gift from you to them. If brother looks like he might not be happy then tell him. Honey I haven't been here for you for whatever reason and now I need to take some of the burden off you - you cannot be expected to do care and all the rest so I am going to do the whole house through for you and you sweet bro are going to laze in the sun, potter in the garden if you want or go swimming in the creek but you ARE going to rest up while I take the strain for a while.

This has benefits... Dad comes back (unless he decides to stay on) to a clean and tidy home
His son is rested and stronger and hopefully now on medication if he is deemed to need it
Dad will have had a routine put in place (you can bet a care home won't tolerate his narcissism or his poor hygiene/incontinence denial) that you brother can continue with
Incontinence assessments should have taken place by then and you need to ensure their guides are followed through
You can have prepared and frozen a whole host of meals for them and shown your brother some warm sisterly attention as he tries to work through his issues... If he needs to work then Dad has to have care and at the very minimum a care line that will call assistance. If he is to stay at home and care then he needs to be paid - I have said this a million times caregivers cannot and should not feel they can live on fresh air
This is just a tiny part of what you need to do so don't expect a break, expect blooming hard work .....your brother has been giving of his best for a long time now and he deserves a break

Brilliant answer Cared for Parents far better than mine and so insightful xxx

I'm obsessed with this discussion because for me it offers so much that's key.
How 'bout this: "I am so hurt that he completely rebuffs any efforts I make to try to get them help, resources or set boundaries."
I say DO NOT do that. You are discrediting his judgement. You don't actually know what you're talking about yet. I would imagine it is on par with having someone with no kids (or with kids for that matter) insinuate you should do something different in raising your kids (you're not doing it right). The situations your brother is wading through are so complex, you'd have to "be there" to see how and why he has done what he's done and hasn't done what he hasn't done. That's why I'm suggesting that after a week or so of you relieving him, you might be able to see what else you can help with. We haven't even touched on the medical quagmire and how messed up it is. If I told you every detail of what went wrong in the lead-up to my Mom's (relatively) simple surgery in the O.R. and what we were told about the schedule vs what actually happened- with my Dad alone in the waiting room most of the day and me in pre-op next to mom who is getting deeper into anxiety- which I'd asked in advance if she could be given something for the anxiety (days in advance)- "oh yes", well "oh no" was what happened. Then post-op, me discovering blood on her head. This was back surgery. Oh yes, they clamp her head and sometimes they can break the skin. Didn't the doctor tell you about that? no And one nurse, doing paperwork- Mom trying to rip tubes out. Me yelling directly toward the nurse "help- is anyone here?" Her yelling back at me that she's doing paperwork. It truely goes on and on, as my sentences are doing. That's just some of it. I could never describe the disjointed quagmire that every medical process entails. Even making one phone call. On hold, on hold, on hold. Leave a message. Wait for return call, wait, wait, wait, call again. Ask for authorization. Referral? No not a referral. An authorization. Where was I? LOL at myself. Anyway, don't offer suggestions. Go lend two hands.

Irish, I do understand; I don't know why she hasn't been; yes, I do have a good support group, if you will, or maybe rather I should say my youngest son does, not so sure I would have it, but for him they took care of things for him but she might not have that; we just don't know her situation; don't know if she could afford to pay anyone, not sure I would have been able to

and not all jobs are FMLA protected; I believe the place has to have a certain number of employees for that to apply and we don't have any idea what her job situation is.

and, like cared for said, we don't know how old her kids are; she might not have had them till late; I know of 2 right now who didn't so right now theirs are not very old at all

But having said that I understand where you're coming from; she actually does sound somewhat annoyed at having her life somewhat interrupted now; as in brother's been doing this "just fine" all this time; why now is he having problems, all of a sudden that she's having to deal with. I think she probably hasn't thought this was the way it should have been handled all along; seems I detect some resentment at brother "giving up" his job to do it; seems a comment was made that he did it voluntarily, so she probably thinks something should have been done before, like dad going into assisted living, which is probably why she had that done - now, not sure of that situation either but possible she actually thought dad might have gone along with it more with his pastor; I at least wouldn't call him a "stranger"; at least I would hope he wouldn't be; actually in a lot of ways I would think he should be less of a stranger than her, no more than she's been but also, if he like my dad, she may have thought he would listen to "him" more than her, being just a "girl", at least my dad had some of that in him but also from the time frame being presented here son/brother was already living with dad; was this before or after he'd quit his job (may have said, may have to go back and look); where was he with this at that time; was this something he - or even dad - was wanting - or something just sis/daughter wanted - could that be the issue - at least in my case my dad had brought it up but was also conflicted regarding grandson - could that have been the case here? Maybe that's where the annoyance is coming from - she wanted to do something earlier - dad and brother didn't but now maybe it's gone on longer than either one anticipated and now brother's burnt out, when, if they'd just listened to her earlier then it wouldn't have gotten to this point and then to make her feel like company now when she'd wanted to do things differently before and maybe they wouldn't even let her.

maybe there's no empathy for brother doing it alone because that's the way he'd wanted it when she'd wanted to do something different before now; maybe even all along - and now brother's crying because he's burnt out but yet he still wants it done his way not hers - could that be?

I don't think we really know what her intent actually is.
But it still sounds like she really thinks her dad should be in assisted living or at least I don't get the idea - and is something I think could have been being done at a distance - that she's been trying to get in-home help for him through a social worker - I know I did that from a distance for my dad through his medical social worker - I'm the one who had to because at least at the beginning of grandson's stay with dad he couldn't handle any of that kind of stuff; merely staying with him was all he could do. To begin with he'd had no experience with any of those people; he'd just begun to even take him to his appointments. I'm just glad I already had a housekeeper/caregiver, in that sense, in place before he started; of course at first he wanted to get rid of her, but he came to really appreciate those 2 hrs. of respite she provided every day but really am glad it was in place, because just right before then the social work agency that had put it in place had yanked them all away and had just gotten it worked out to put the new "one"; where before there were 2, but it actually worked out so much better, having just the one or maybe it was just this particular one, since she had worked in a group home for developmentally challenged adults, so she understood "crochety", where I'm concerned that as dad got worse the others wouldn't have been able to handle him.
wow, that whole hydrocephalus thing is intriguing especially in regards to the incontinence issue, which was an issue, at least at first - maybe like it being caused from a stroke - but even that became manageable - but to get away from the medical to just the falling - I wonder if that's an issue with brother - now in dad's situation that, to some extent, was the least of the issues - my dad was small; grandson was bigger, so getting him up when he fell was not an issue. But as far as the medical re brother I'm wondering how he is living, just off dad, since he's quit his job; if so, how could he afford to go to the doctor? know that was an issue with grandson and it wasn't even quite that situation; long story there.
Again, as far as commitment to when he can go back, we still don't know how old her children are - said they must be 18 since not getting child support; no, not if she's in a joint custody arrangement. and needing and wanting help are 2 different things. but we're not hearing anything more from her anyway so maybe she's there

it sounds as if he has developed major mental illness issues himself from this situation. He might be afraid of not having any where to go or money of his own if Dad was put in a home.He might be embarassed if the house has gotten out of control and is not clean.There are so many reasons why he might not want you to come. My sister has cancer and won't let anyone but my 82 year old mother in her house and her estranged husband.She says everyone else has poison germs on them?

I think frustratedsis has left the building. Still, it has been a lively discussion.

Greetings all. I am very new to this site, and to caregiving for that matter. As I've mentioned, I have ongoing depression episodes which began several years ago. The realization that my DH is slipping into dementia is devastating. We have been very best good friends for 30 yrs. The roller coaster of emotions is more steep and scary than just about anything. I have already made many mistakes, been irritable, angry, and resentful. I expect that I will continue to mess up, even with the best intentions. I need others to listen and talk to. If I were frustratedsis, I'm afraid I would need to leave the building too.

Suzz welcome in to our tub of delight ....the water can get hot at times. Sometimes people do need to know that they are actually not caring. frustrated cited in her profile that she was caring for her Dad but then said her brother was hence the confusion I suspect. Her brother appears to be hands on so he is without a shadow of doubt the caregiver but he is burning out and her comments supported that and to be fair to her she knows that.

The issues that came forth were harsher than I tried to be (mind you I can be vile so dont go thinking I am a sweety!) My concerns were and remain that if he is so so down that he sees her as company and he doesnt want company then he is really really low and that needs addressing pretty damned quick.

Sometimes an abrupt approach can raise awareness to this but it wouldn't be my preferred route if someone is already worried about their relatives. She just needed a hefty push to make her see that she cannot dither any longer. the time for action was about a year ago but failing that it is an immediate need.

Dementia is a terrible terrible disease and we have to learn to hate the disease not the person because they may change beyond all recognition. Caring for people with dementia is really really tough physically, mentally and emotionally and we have all experienced the roller coaster ride that you are experiencing so do take heart in that you are not alone.

When you are at a low ebb and want to ask a question that you think might reap an unforgiving answer why dont you say just that .....something like ....look people I am really about tolose it completely and I am worried that I have done something stupid and I dont know what to do next or where to turn can you help me?

I often add be nice when I am feeling low. my problem is mood swings ...typical of depression I know but I can go from zero to hero in about 1 milisecond. So when someone is churlish or a bit rude I go one of two ways...vitriolic and Im not nice when I am like that ...or I retreat and say nothing for days. I think quite a few of us do that periodically so come and join the caregivers and let us support you when youneed us xxx

ccflorida, I agree. It's wrong to discredit the brother, he has holding down the fort all these years. I don't see any credit or gratitude on the part of the OP.

debdaughter, great comments. However my father used to have an expression regarding excuses "if your mother had been a man she would have been your father". Sorry, most people qualify for FMLA.

Even if she didn't, than use your vacation time. Not fun to have spend vacation time at dad's house, well tough cookies, when does the brother get a vacation?

And no one(at least in most cases) want to go this alone. So I doubt the brother wanted to be a "martyr", lets look at the facts, he is single(divoreced) with no children, she has kids. In most cases it is the single child(who has no kids) who ends up being the caregiver because they're viewed as the one who has the least responsibilities(whether that is true or not).

So they start doing the caregiving, things get more difficult and than you hear "well you took this on"....LOL. Happens all the time.

And when I said stranger, I meant stranger to her. It's not her minister, she doesn't live there. Perhaps having him along would have helped, but she still could have attended.

And than being offended because you're viewed as company? Grow up. You are company, you have been out of the loop, you live in another part of the country, you don't just now decide to get more involved and expect your brother to just roll over.

The OP can help, but you go in and you listen and do what is asked, in fact don't wait to be asked, start cleaning, get the laundry going,etc....but don't take over.

Suella, let's not say he has major mental issues. He may have had a slight collapse(who wouldn't), let's not make him out to be something he isn't. To be doing 3 yrs of 24/7 caregiving for what sounds like a difficult man would be a big job for Superman or John Wayne.

The OP should have gotten more involved sooner, you get on a plane and go. It never should have gotten to this point, never.

Irishboy, I have a feeling your family isn't helping you and it is triggering you here. I am sorry that I wrote the message that started us down this negative path. This isn't helpful to anyone. I think we can call off the attack dogs now.

Maybe Frustratedsis is on an airplane now. Well, maybe not. My sister will be on an airplane in a day and a half, coming to relieve me. I've got three visits with friends planned. My sister is excellent- just has been too distant, but now she will experience the two different dementias of Mom and Dad and she will get up to speed and realize what reality we are in now. She's always been great. I don't know why this slow start, but better late that never, and that goes for a lot of the people in our lives. For a few, it is too late- that ship has sailed and they missed it. Mom and Dad are going, going,

Jessiebelle, you partially right. Yes, it was all on me.

But it's called "critical thinking", you review what is written.

1) There is no gratitude on the part of the OP for what her brother did.

2) She is annoyed that the brother is now like this, well your lack of help got him there.

3)Annoyed she is viewed as "company", well that's what you are at this point. You don't live there and have had no role in this situation, what do you expect. Many caregivers when the non involved sibling shows up find the "company" to be nothing more than extra work.

4) She arranged for a nonfamily member to take her father on tours of ALFs. She should have been directly involved in that.

She has been hand's off for years. She also played the "well he chose this" with the brother being the sole caregiver. Why is that so hard to get?

ccflorida, I hope your sister steps up to the plate and you get your well deserved break. But remember sometimes they show up and freeze, they don't bother to visit and get there and don't help. I hope that is not the case for you and she steps up to the plate and let's you know you're appreciated and says "THANK YOU SIS".

I get what you're saying, Irishboy. I live with my mother and have brothers who are not involved. I'm not angry with them, because it doesn't bother me they aren't involved. However, I do think I would be a bit chafed if one was upset because I wouldn't put Mom into a NH or AL or something. I mean, like, are their legs broke or something? If either thought it necessary and wanted to do the work to make it happen, I would cooperate with them. However, if they thought it necessary and wanted ME to do the work to make it happen, it would be a different matter altogether. I know what kind of fighting and wrangling I would have to do with Mom to make it happen. They are welcome to that fun!

I think it's possible the brother did want to be the "martyr"; at least in my situation when dad's grandson started "complaining" and I was willing to do what it took to put dad in a NH, too late for assisted living in his state at that point, he didn't want to cooperate with that, because yes, he had his own issues at that point - let me go back and see if I can zero in on it - on the previous page

Well Jessie see how you feel when mom passes and now your brothers are all of sudden involved. Because it happens all the time.

Doesn't matter if the estate involves only a small home and a small bank account, the uninvolved suddenly become the involved.

I applaud you for doing it on your own(I know the drill). But it's their mother to, even if one adult child is the primary live in caregiver, the other/others can help as well. Even if to say "you go to lunch and a movie, I'm here for the day", and do this once or twice a month.

I went back and looked at the OP's post, her children the youngest is at least 11yrs old(maybe older), these aren't little kids. She has been divorced over 10 years. They can be left with a family friend or relative.

because, yes, like Suella was saying, he'd gotten to the point, because, even though he was getting paid, like someone else was saying somewhere he'd gotten himself into a situation with his own relationship that he was spending that money on keeping them up, so that he didn't have enough money of his own if I placed dad somewhere - well, further, he really wouldn't have any because he would no longer be even getting paid to take care of him, and then so actually by then it wouldn't even be just him, it would be the one that was depending on him as well - and like somebody else as well - (oh, wait, that was somewhere else) - they were waiting on some money to come in - they just weren't expecting this situation -

Irish, if she has any - she may not where she is - but if that's the youngest, how old is the oldest?
but let's go back - he may be a martyr, but on the other hand, what if he didn't actually volunteer, but, like you said, he was there and single and daughter wasn't, so dad just assumed he was available, like my dad did with grandson - same thing - he was there and not married; I wasn't there and was, so he just assumed that he was available - and - was he? well, he did have his own life, but did he really have any responsibilities/obligations? but he didn't really want to move in with dad but...he didn't really want him selling his house and moving into assisted living either - now why? what was his problem with that? he said he didn't want to live where dad did or in his house at the time....but...when dad died he wanted it - or least the value of it....tried to get dad to sign it over to him....dad said - no - it was to go to me....so....he did eventually decide he would move in with dad....but really should dad have waited for him to make that decision - he wanted to wait for him to make a decision and he couldn't bring himself to actually tell dad he wouldn't actually move in with him but in a way think he kept hoping dad would decide differently, even if it wasn't what he wanted, at least he wouldn't have to make the decision, but he never would, kept waiting on him, till he felt he had no choice, but at least that would get him in the house, where he thought he would then stand a better chance of getting the house and then actually wanted it more for giving up everything to move in with him but dad still said no; he didn't see him as having given up anything because he didn't see him as having anything anyway; he didn't see how he was paying for anything because he didn't understand how he was living anyway because he didn't see or know how he was living and he wouldn't tell him, so was it dad's fault - was it his? who was being what in this whole situation? and then it was over - dad did die - grandson's in the house he'd said he didn't want to be in, was still saying he didn't want to be in but had no money, then, no where to go, so then what - he didn't want to leave the house he didn't want to be in because of all that and he wanted what little dad had left for the same reason - now, should he have it because he was the one staying there taking care of dad even though he was getting paid for it - should that mean anything -
and remember I was not totally hands off - I did go - in your opinion, since I've said how much I went - was it enough for you? and remember I left my - yes, granted, teen-ager, home alone to do it - was that good enough?