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I'm visiting for a week and don't want to cause friction with anyone. I think caregiver is overwhelmed and is perhaps not as respectful as should be, to the point of causing unnecessary stress. I can't take over Dad's care yet, although I would like to in the future. Caregiver will not accept any suggestions as to how to speak more carefully. I however can not bear to listen when he yells at him for walking too far or for anything else that would be alright if he weren't so frail. If I just walk away he sees that as ME disrespecting HIM the caregiver. I guess I could just sit there and make eye contact with my Dad so he knows I love him. Dad has a personality disorder that makes him extremely depressed whenever he is disparaged or disrespected, he also has an impulse control problem and could go the other way, becoming quite angry himself. I thought perhaps I could do a little strip tease just to distract them, but that would only work once if at all. One of the biggest issues is explaining why we don't want him to drive, and the other is we are afraid that in his gullible impulse control state, someone will talk him out of all his money. He has mild to moderate vascular dementia that is sporadic. So it is difficult to watch the caregiver who will not taking the steps to watch the special how to videos on how to deal with someone. He just says I don't know anything because I am not there often enough. I know that whenever they get into a shouting match, my father is sick in bed the next day, so he's paying a price for this. I also know the caregiver is giving 100% of his time and effort and his "best." except for the not wanting to learn anything new in how to deal with the emotions of his patient. Caregiver is also family member and has POA. Any advice would be sorely appreciated.

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This is not traditional caregiving, I guess it never is, but you can't substitute a paid helper as a caregiver for my Dad - he doesn't realize you are caregiving half the time. He just needs constant friendship by his side, someone to remind him everything is ok basically and to explain the constantly changing world to him. and yes this is dementia, not willful. So it isn't just step in and change his diapers, it's more like explain to him why I'm here and brother isn't, and then he wants every detail. What caregiver needs is some time that he can PLAN on and make plans with his wife so he can take a REAL break, not just a breather. and Sharon is right, it is worth it to risk the scrapes and bruises in order to let someone else share the tasks but I understand that as caregiver he feels responsible for ANY bruises, so therefore part of that is his own ego, not so much concerned of the scrapes but of himself being blamed.... and the person that would blame him the most is himself! Some people are their own worst enemies. Dad is ADHD, needing to be constantly occupied, yet losing some cognitive powers so can't do very much that requires deep thought on his own.
I am beginning to feel that so many families are torn apart during caregiving situations over misunderstandings. The stakes are so high (a mistake can take a life!) that intentions are over analyzed and over rated, and we are very suspicious of everyone's motives. I find myself doing it and then reminding myself, hey this is my brother, I know him, I know he means well..... we just need to communicate better. (And one of us needs to lighten the f...k up! LOL)
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I understand the fear of leaving a spouse or parent in the care of someone that is not around to know the "routine" but I also know from experience of caring for my spouse for 18 months after his stroke that if you don't let go the control and take care of oneself you can't care for the loved one. Tunnel vision while living with the dependent person is rampant. Five years after my husband's death I am still glad I was able to care for him and give him time with all of the family for the 18 months when doctors told me he wouldn't live but 3 months. He wanted nothing to do with a nursing home, as my mother now doesn't want to be there, I listened to him and my heart. I didn't expect family to help, they were content to come visit for a couple of hours and walk away back to their lives. I looked for and accepted help from the county and the hospice the doctors referred me to. It was frustrating at times but I will never ever regret giving him the time he needed here on earth. ANY respite is better than no respite. Any stomach upsets, any bruises will heal. If a person feels they have to control and protect to the exclusion of other family members..........they are losing vision of life itself. Give the others a chance to share some private time before it's to late. EVERYONE deserves the right to KNOW what the full time caregiver is living and to give respite when they can. Accept it and be grateful. Every day is different but that doesn't mean it's wrong or right there are no absolutes. Just as when you bring a new baby home, bringing a sick/aging parent home to care for is worth the effort but no one can keep them totally safe and well at all times. Learn to enjoy the times that are good and let go of the upsets/discomforts.
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"Until you walk in a family member's shoes who does the care giving, you can't begin to understand the affect it has on that person." GeeBee, that's why TINT is *asking* - to get suggestions from people who will see her brother's perspective. I give her a lot of credit for that.

Sharon, the trouble with more distant siblings offering to take over is that, to do the job safely, you need to be used to the routine and care needs of the person being looked after - so it's very hard for me, for example, to relax and let other family members look after my mother. I'm afraid they'll drop her, or bruise her, or give her something to eat that'll upset her stomach. It's not just a matter of control, or "chilling out, dude" - you really do have to know what you're doing when you're looking after a 1924 model. And the thing is, if they bring her back and her gut is upset, or she's become very confused, or the skin on her shins has been damaged, or any of the other hundred-and-one small things that can go wrong - guess who has to clear up the mess? It makes handing over more trouble than it's worth. Not before time, I have found a brilliant facility that will take my mother for one week's respite care every few months, and that week off is a lifeline for me. The difference is that I can leave her in very good hands and walk away knowing she will be completely safe; if it were any of my siblings in charge, I don't think I'd sleep all week.

But I agree with you both, that very few things are more infuriating for a full-time caregiver than people chipping in their twopenn'orth of advice without first trying to understand the reality of a situation. TINT is trying to, that's the point.

Hm, there's a thought… TINT, is your father fit enough to go away on vacation anywhere? A week or two somewhere he'd enjoy? That would give your brother a week off without his having to go to any trouble or expense, if you or others were able to accompany your dad. You'd need to find a specialist resort, probably, but there are places that cater for people with disabilities. Just an idea.
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I care for my mom and am at my whits end. When someone, who does absolutely nothing to help, has an opinion without knowledge, I want to throw them out of the house. Until you walk in a family member's shoes who does the care giving, you can't begin to understand the affect it has on that person. Even with help, it's a very stressful situation. Do it for as long as the other person has, and then you might be a little more understanding. Since you are not in a position to take over right now, at least give relief when you can.
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You say you are visiting...my suggestion is to take over care of your father the time you are there and give the caregiver a break. That may improve the relationship between he and your father and you and him. Suggest he take a vacation completely away from the area for the time you are there, give him positive feedback more than suggestions of how to handle things. I've learned the hard way with my sisters that because I lived two states away and couldn't drive in every other week that they resent me for the care my mother required of them. We rarely speak now that I am here. That's a life long thing and for another topic, but my resent kept building because I'm always told how "wrong" I am and not respected as an adult. Try the positive, try to set quarterly visits of a week or two weeks that you can relieve the caregiver. MHO
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I feel for him, TINT, I really do. You wouldn't BELIEVE the frustration that mounts up. Hope the visit's going well and the family's having a good day. Update us later? x
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wow you guys. we all have the issues eh? so wonderful to hear you supporting us all - us supporting us all. I had written pages it seems and in trying to condense it down and not overwhelm didn't get any more on here. I'm on way to visit now, can't wait until I have time to read more. You all sound wonderful and countrymouse it sounds like you might have some stuff going on similar to my bro, so it will be so good to continue this conversation. i must beg off now but i thank you so much, it feels so good to be heard!
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Also,

Don't go in like a General making demands and statements about what is wrong. Start with what is going well. A few compliments before a suggestion may go a long way.

Sharon
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Sounds to me like the problems are not your dad and his care. It's all of the siblings/family members/caregivers in this scenario. I wonder if all of you sat down together to talk if you could do just that: talk. Without getting angry and screaming and yelling and stalking off. Talk about the issues and some solutions.

My husband is one of six siblings. When his mom needed something, phone calls were made. It wasn't easy for everyone to get together at one time, and we all only lived, at most, an hour apart. But phones were used and problems were solved. And not all of the siblings get along that well, but when push came to shove, what needed to get done got done, and by everyone.

Oh how I envy that because I am an only child and have no one to share the burden with.

Be thankful for all of your family members. Try to work together.

Sharon
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Countrymouse I hit the button report this post I thought it said reply to this post, so sorry. I am soooo happy someone heard me and will not let what happened between my sons and my nephew happen to your family. They are all the family they have...each other. As my sister and I work on repairing what we destroyed, these boys live around the corner from each other and don't speak. My parents hearts would be broken. They would be so disappointed in both of us and deservedly so. We were raised in a close family. Every weekend, one moms family the next dads. Neither my sister or I are married now. My sons have each other leaving my nephew alone. I'm afraid it may be unrepairable. Hearing us say terrible things about each other as they were also dealing with their adored grandparents declining health and eventual death. If anyone else hears this please do not make the children have to deal with the mistakes yoou've made!
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TINT - just to recap: the household currently comprises your father, your brother, a dependent sister (is this permanent dependency? - or will she fly the nest in due course?) and… who's the fourth? SIL or another, non-dependent sibling?
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Beechgirl the way you describe the tension between yourself and your sister, and the impact it had on all the children, is a cautionary tale: thank you for expressing it so well. I think you can see that your sister *thought* she was being supportive of you! - and it really wasn't working like that.

I have a similar situation with a SIL (wife of favourite son, alas), who whenever she sees my mother tries to roust her up and motivate her, and behind my back tells anyone who will listen that I'm under too much stress and 'too close to the situation' and 'over protective'… It drives me up the wall and makes my very frail, mentally frail, depressive mother even more miserable and self-loathing. I think SIL sincerely believes that if mother pulled herself together and acquired some moral fibre, she'd be right as rain and going for brisk walks in the good country air. What's a little heart failure, kidney disease, stroke, arthritis and dementia between friends, after all?

But, for my lovely nephews and my children, their relationships with one another are all at stake here. I am grateful for your wake-up call.
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And for me to show up from 3000 miles away to live there, one more person for Dad to support does not sound helpful. It is a very rural area and I would not find work there that paid more than minimum wage if that.
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One it is not just two people in the household, there are four. Two it sounds honorable and selfless to give up my life to live there, but what about the people here that Ileave alone? Their lives are also important. Most importantly there are other people in their lives and they don't see it. Think that CG is the most selfless put upon person in the world. The other thing and this is perhaps the biggest nit of all is that there iis that fourth person - my sister, who is my Dad's dependent. You can't just call in authorities and tear apart someone's life when you really don't know what is going on. You say a third party would find out, I don't think so. I think a third party would tear things up even worse.
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I moved in with my mom and was her caregiver as she sank further into dementia. My sister who lives around the corner would come to visit for an hour every week or so. She had nothing but negative comments about everything. Spent a great deal of her time yelling at mom, as if this loving, gracious woman who had raised us was acting this way on purpose. She thought mom was just being lazy leaving me to do everything. Telling her she was ruining MY life. Mom passed in 2006 and my sister and I are just repairing our relationship. Beinga full time caregiver is extremely stressful, thinking back there are so many instances where I lost my temper that I regret now. I wish I would have asked for help. There are day care programs to give the caregiver some time off. Many agencies are out there that can give your brother some advice. Perhaps putting together a list for him of where he can ask for advice. He may take advice from those who have no emotional investment. Coming in for 1 week and trying to change things will most definately do nothing but anger those involved. I wish you and your brother success in navigating what was the most stressful situation I've yet to deal with. Who paid the price? My 2 sons and my sisters son who as now young men had to sit by and watch their mothers act like babies fighting over their Grandmother. They haven't recovered and the cousins don't speak. Families get torn apart. Tred lightly!




emotions
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ooo off to visit them.... more later....
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Ooooohhhh dear. In the best tradition of the old Irish countryman asked for directions: "well, now, I wouldn't start from here." But what on earth possessed your parents to hand POA to… oh well. Too late.

You're right, your father does have a right to squander money, right up to the point where he ceases to understand the decisions involved and/or impoverishes himself so that it begins to impair his quality of life (plus don't forget all the regulations around wilful divestment and what have you).

But in any case if your father is emotionally vulnerable, and your brother is a bit vague around financial management, and the pair of them together could make a right pig's breakfast of all this…

Call a family conference. When you say you're 'not ready yet but would like to' take care of your father, is that a wish or a plan? Hint: it had better be a plan.
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Sorry to be so rude, but if you're visiting for just a week, why should the caregiver listen to anything you have to say? Unless, of course, you're willing to stay longer than the week and relieve the caregiver of his/her duties?

You don't say who this 'caregiver' is. One would assume s/he's a brother/sister?

At any rate, caregiving is exponentially exhausting, both mentally and physically. To see an adult act childlike, especially a loved one, is extremely hard on the psyche.

You get to go home soon. The caregiver does not.
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Thank you so much countrymouse, yes on all accounts. The situation has been going on for so long.... Long before there was any dependency. It evolved. And I don't know what to say about finances, he isn't great with numbers and I would love to know how they are doing, but don't want to imply any lack of confidence in him. It is very difficult too because we had a big falling out a few years ago that we are trying hard to overcome in order to care for Dad. His personality is so different from mine too. I hate conflict, whereas I think unless you get really mad, it doesn't count for him. oops, I just unloaded more!!!!! We are very concerned that Dad might squander funds on "investments" and yet do NOT want to exercise any guardianship type thing to prevent that, as that would be extremely insulting. I feel he might even have the right to squander his money, but at what point does giving money to strangers cease being a right and start being a "danger to himself/"
I fear I may have hit too many topics and so I apologize if this is hard to follow.
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ThereIsNoTry, has your brother lived in your parents' home for long? I'm not criticising the job/room/board thing, it's more or less where I am at the moment; I'm just wondering if he acquired POA and the caregiving role by a kind of default, because he was on the premises?

I agree with what I think you suspect - that he's drowning and can't recognise, let alone admit, that he needs help with his increased caregiving role. This is very difficult for you, I sympathise.
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It could be that caregiver has his own problems that need to be sorted out before he can care for someone else. But for the moment, this is his unpaid livelihood, his room and his board, and eventually what is left is his inheritance.
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Pam, they are getting help several days a week. Caregiver sees this as an intrusion and no help at all at first. Now thankfully he does use the helper to work with Dad to get some exercise as that would relieve Caregiver of at least that responsibility. Part of the problem is a mistrust of having strangers in the home. oh it is so complicated.
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GardenArtist, with all due respect, you are not understanding of the situation. The Caregiver has many options to help relieve - there is money available to spend on care, there are also has two other family members at home, cooking, cleaning and providing emotional support. The situation is so complex that I am trying to write it down elsewhere now to sort it out in my own head so that I can explain it. Briefly, I think it is just a personality conflict and they should not be living together right now, maybe they've just been dealing with each other for too long. We all went through a traumatic situation involving my Mother's death too and it has been really intense for over a year now. After her passing it has become apparent that my Dad has special needs, has a bit of dementia, that is easily covered over when someone has the time and energy to work with him as my mother did, and as Caregiver can only do to a point, since he has a family too. A family living off the income of my Dad.
All I'm asking is how can I sit through an altercation without taking sides? Especially since in my head I have. - I do feel that he is ignoring avenues of help, has money that he won't spend. We could guess that Caregive knows that I feel that way and so is ultra sensitve, but it doesn't help the situation.
I tried to boil it down to some concise facts, thanks very much for reading this.
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So you've tried flashing your knockers… Dang, just what I was going to suggest.

They're both terribly stressed, aren't they. First of all, congratulations for being so thoughtful about their situation, recognising how hard things are for your brother as well as too rough on your dad.

But he mustn't yell, not in whole sessions like that. Really he mustn't, it's abuse. I understand that you've tried to talk to him and he's not prepared to hear you, very difficult. I don't know: could you try recording a shouting match, leaving your brother alone with it and saying "seriously, just listen to yourself, that's all." I really do sympathise with him, I raise my voice too and regret it, and I get angry and stressed too. The important thing is for him to know where his buttons are so that he can react differently.

The huge difficulty you have, of course, as pointed out above, is that you're a back seat caregiver and have to be incredibly tactful - but I know you already know that. That doesn't mean you're not entitled to an observer's opinion, though, and to speak up constructively when necessary.

Don't do the "it's ok Dad" conspiratorial wink thing, though - if your brother sees that he will go justifiably bat-sh1t, as my daughters would put it, and so would I. Nothing is more infuriating than someone nudge-nudging behind your back.

Phew. It sounds as if your brother is exactly where I was about a year ago, when mother had a broken wrist and we were adjusting to her still recent-ish dementia diagnosis. She would not do anything to help herself stay safe. She rocketed around the house, two further trips to ER with a cut head and face that looked as if I'd taken a rolling pin to her, and no matter how I pleaded with her, explained the dangers, begged her to call me whenever she needed anything… gosh I'm getting stressed just thinking about it.

Anyway. NOW, of course, I realise that the reason she was agreeing and then immediately doing the exact opposite of what she had promised not five minutes before was… da-DAH! - that she was suffering from dementia, and that all of that breath I had spent on lecturing her was a total waste. Not to mention the tears, rage, terror and chest pains. Might as well not have bothered.

What your brother needs to get, is that he is wasting his breath. I am not blaming him for not realising that, because even once you do know it still takes quite a long time to take it TRULY on board and stop suspecting that your parent can understand perfectly well when they want to. Your father doesn't comply with your brother's safety-and-welfare rules because your father doesn't believe that the risk is there, or doesn't remember that the risk is there, or both. He isn't being wilful. Well! - he may also be being wilful. But basically he genuinely does not see the problem.

When you say your father's 'walking too far' do you mean inside the house, or going out of doors and out-walking his strength and coming home wiped out? If keeping a closer eye on him indoors is an issue, the alarms they use in care homes are the only things that helped me. You carry a monitor with you, your parent wears a wristwatch button which he can press (he won't!) when he wants something, but also you can get pressure pads that go on chairs, beds, strategic sites on the floor under the carpet and so on, and when they're triggered the alarm goes off so you know when they've 'escaped' again. Life saver for me, I must say. My mother says "I can't get away with ANYTHING."

I also have a close match with your brother in that I don't think I realised how exhausted I was. You get sort of determined to win? If you try hard enough and think of enough brilliant strategies and arguments, then by sheer force of will you can get your parent to understand and comply. Obviously, I don't mean that you consciously look at it this way, but I think that's what I was trying to do.

I think the idea of arranging relief care is a great idea, I'm just not sure how it's going to play with your brother - be careful. But do get some info on in-home alarm systems, they really are a pressure valve. Best of luck x
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You live in New Jersey, so call your nearest office of the aging and get some help for the caregiver. Even if it is just a once a week visiting nurse or a volunteer who will sit with dad, it will provide needed relief. I am sorry you are not ready to help out. Do the best you can.
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I assume you're joking about the strip tease? If not, I can't imagine that would solve anything and am actually rather appalled that you would even suggest such a action to be performed in front of family members.

You wrote that you can't take over your father's care yet, but you're not entirely satisfied with the existing caregiver. Without sounding condescending, I think perhaps you don't really understand how stressed the caregiver is and aren't seeing the whole picture.

If you want to be a part of your father's care, it would help to start doing something as soon as you can and relieve the burden for the existing caregiver, who you say is spending 100% of his time caring for your father.

This probably sounds harsh, but having been the sole caregiver for my father and knowing how others in a similar position feel, I honestly think you're not in a position to criticize unless you're willing to step up to the plate and help care for your father, ASAP.
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