I am in my early 50s, divorced and live across the country from my dad and older brother because of parenting custody laws in the state that I moved to when I was still married.
My older brother who is divorced too, cared for my mom before she passed 6 years ago and then moved into my dad's house and has cared for him 24/7 for the last 3 years.
During this time, my brother gave up a career that he enjoyed and has been absorbed further and further into dad's controlling and narcissistic ways.
Dad is 87 and has begun to fall at least once a week and become increasing confused. He is incontinent and absolutely will not agree to anyone coming into his home or going into any group type care. He could afford help and probably ALF but is bound and determined to stay in his home until they haul him out on a stretcher. Brother fully believes that if he set a deadline and left dad- he would be prosecuted by the law when Dad passes alone in the house.
Two years ago I had our family minister take dad to tour some assisted living homes nearby and dad completely refused to move. I've urged brother to hire a PT caregiver- he checked into this and then said, Dad's so difficult, no one would put up with him.
Recently, dad has had hernia surgery, recurring staph infections and fell in church and hit his head on the pew and paramedics had to take him to the ER where he needed 7 staples in the back of his head.
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. He did see a psychiatrist a few years ago but refuses to take any depression meds or get counseling for himself.
I told him I can fly out to visit next week and his response to me was "Absolutely not! I can't handle company at this time."
I am SO HURT that he now classifies me at COMPANY instead of his SISTER!
I am so hurt that he completely rebuffs any efforts I make to try to get them help, resources or set boundaries. I also feel guilty that I live so far away- I've been raising 3 kids the last 10 years on my own and work quite a bit to try to make ends meet since I am not getting child support any more and have not remarried.
Would appreciate your thoughts about what we are going through...
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".
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.
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
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
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.
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
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.
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
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.
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.
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.
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.
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.
debrakgray, that's the kind of help I got. None, I had to ask a 45yr old man to please go get the mail, take in the empty trash can, while cleaned soiled bed sheets.
Than I had people said to me "well maybe he doesn't know what to do"...SMDH...he sees me preteating sheets to go in the washer, while he sat on his a** talking on his phone.
I noticed the OP in her profile says she is caregiving for her father, no your brother is doing that. I understand your own children come first, but at some point she could have done much more than she did. Don't make the brother who has done 9 years of caregiving the bad guy.
That said, Olly is right. Brother feels obliged to do it all himself, he is afraid if he gets a taste of what it might be like to have some help, he won't be able to handle it alone again, and yes, you should go. "I am NOT company, I do not expect to be entertained or taken care of, I am your sister and his daughter, and if you think I am going to let you kill yourself doing this all alone with no respite, you have another think coming!!" You may find that Dad is being taken care of perfectly well and brother is overstating things. You may find it has gone to hell in a hand basket. Whatever you find, you will at least have a shot at figuring out what you WANT to do, need to do, and wish you could do...and then what is actually possible for you to do under the circumstances. Maybe you will find there are some things you can manage from afar and reduce your brothers workload, and maybe you can set up a regular respite plan, even if no one is willing to make a more major change. Maybe you can set up a webcam and Skype for them and manage a chit chat with Dad after you go back that would give your brother a few unoccupied minutes on a regular basis. I'm afraid you have almost no way to know until you go.