<p><<yet, he=“” wouldn’t=“” file=“” a=“” report=“” about=“” his=“” office’s=“” not=“” being=“” in=“” compliance=“” with=“” ada=“”>></yet,></p>
<p>didn’t you say earlier he was a government employee. Not sure if he is/was a federal employee, but I can tell you for a fact that the government ALWAYS jumps thru hoops to make accommodations. You do have to ask first though, they aren’t mind readers! I can’t fathom a federal agency not attempting to comply with the ADA.</p>
<p>Only you can decide what you want to do and are willing to do… </p>
<p>Having said that, what you have described seems to me to be a reasonable line to be drawn - you have done more than many would have done and they are asking for way more. Seems like they push and push until there is no more to give.</p>
<p>I’d personally have backed off long ago.</p>
<p>“As I write this and read this over, it does seem like I’ve been caught in a net by some people who exploit their situation and use others”
I think that just about sums it up. You are being used by a couple of manipulative “victims”,[ sorry to sound callous but that’s how I see it] who will continue to use you as long as you let them.</p>
<p>“didn’t you say earlier he was a government employee. Not sure if he is/was a federal employee, but I can tell you for a fact that the government ALWAYS jumps thru hoops to make accommodations. You do have to ask first though, they aren’t mind readers! I can’t fathom a federal agency not attempting to comply with the ADA.”</p>
<p>He’s a state employee. One of their other friends backed off from helping them because she said he complained a lot about the lack of accommodations, but never really tried to get some important accommodations that he needs – like an accessible bathroom.</p>
<p>NSM, your original description of this man and woman say it all. Take the illness out of the equation for a moment … these two appear to have a very dysfunctional relationship. He seems quite controlling, and she in turn is trying to control things outside of her relationship (perhaps to compensate for the lack of control within?). Personally, I would drift away … without any guilt.</p>
<p>I do a lot of work with families who have children with cancer. For the most part, they are amazing people. I would nominate nearly any of them for a hero award. In the mix, you do occasionally meet families who feel that they are entitled to everyone’s help and awards of all kinds. It is an awkward situation when your meet such folks. They are truly in need, yes. They are in an awful situation. You feel the sympathy, you want to help. But their attitude is such that it bothers you. It is the expectation that all should cater to them. </p>
<p>In any terrible situation, the goal is to get those who are hurt back on their feet and self sufficient again. It is not to set up a network of dependency. This is a crucial point in assistance to those who are hit with catastrophes. Not only does not aid have to be directed to the acutely affected areas but needs to to help those involved to learn to deal with the chronic phase of the situation and future acute crises. It is sad that there are people who do not want that independence. It was a nasty surprise to my husband’s relatives, when they realized that we stepped in to stop a hemorrhage , but that we expected all of the close members of the families to pitch in as well and that we were going to step out of the picture once a balance was achieved, and ultimately H’s cousin was going to have to take charge of his own life. There is still a tremendous amount of resentment that we are not continuing as benefactors. MIL is also very upset that we expect her to handle the everyday things in life with assistance, yes, but also responsibly if she chooses to live independently. </p>
<p>It was a great surprise to me that there are people who want to be pitied and be the beneficiary of charity. I can see how many government assistance programs went awry because of these types. When folks are hit by disaster, I am happy to help them during the dazed times with the goal of getting them to stand on their own feet. It’s a problem if they feel that the assistance is an entitlement.</p>
<p>So true that it’s a problem if people feel that assistance is an entitlement. Makes it even worse if they’re chronic complainers and blamers. It must be a personality type, a sort of behavioral disorder. NSmom, it’s no wonder you feel resentment, like others have said, I would have cut them off a long time ago. But – if you have any sense of guilt about this, it might be worth it for your own piece of mind to decide what you are willing to do, set the parameters clearly, and then do it without hesitation or resentment. Don’t think further about it, just do it and move on. </p>
<p>I often think about this when confronted by an especially annoying homeless person. The problem with people in need is that sometimes they are truly irritating individuals. It’s truly a challenge for the saintly, which I definitely am not.</p>
<p>There’s a reason why these people have to ask for help. They have probably always treated others in such a way that no one wants to be around them. </p>
<p>Usually when someone experiences a crisis, people go out of their way to help, as with cptofthehouse’s story.</p>
<p>I am sorry for the loss of your dear friend. You gave her a wonderful gift of time at the end of her life.</p>
<p>Your dilemma reminds me of the threads about relatives who live beyond their means and then expect brothers/sisters/parents to bail them out over and over and over.</p>
<p>It also reminds me of the “I send lots of care packages, never hear they arrived, and visit only to find them unopened in a closet” threads. What will they do with the extra sets of sheets that people donate? throw them into a closet unused?</p>
<p>There are takers and givers, but the givers need to set their limitations so they don’t get used just like family members have to say no to continued financial bailouts and kids need to miss a few packages to be reminded of good manners.</p>
<p>Best regards.</p>
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<p>Amen! At my church, we provide a lot of service to each other, but the rule is: be self-sufficient. If you can’t be, look to family first. Then to the church. And the church is just a short term fix, until you can figure out what to do long term.</p>
<p>I’ve seen some examples of situations, usually when someone has suffered a catastrophic injury or illness, where 24 hour involved care is needed, cannot be afforded and a community/neighborhood gets together and makes a schedule of duties–with everyone contributing. These situations are rare.</p>
<p>Thank you so much for your comments. I had thought there was something wrong with me for secretly wanting to run in the opposite direction from these people, and to feel used and put upon since it seemed that while their situation is difficult, they had the resources to help themselves without asking me for help.</p>
<p>“What will they do with the extra sets of sheets that people donate? throw them into a closet unused?”</p>
<p>That’s what has happened with a couple of things I’ve given her before. For her birthday --which I cooked for and along with other friends helped set up – friends and I gave her gift certificates to a beauty spa 10 mins. from her house. Last I saw her, she was still complaining about her hard life, her stress, and she mentioned that – even though at the time her husband was at work all day – she had never found the time to use the spa certificates and didn’t even know where she’d put them. I wish I had used the money for myself!</p>
<p>After she told me that she wants to meditate, but can’t leave her husband at home in the evening to attend, I also had given her a book and CD on meditation. Later, when she yet again complained of her stress, she told me that she’d never used those things. The book and CD were things that I had loved.</p>
<p>“There’s a reason why these people have to ask for help. They have probably always treated others in such a way that no one wants to be around them.”</p>
<p>Your wise words probably explain why most of the people who have known them for years seem to keep a distance from them.</p>
<p>NSM,
Given the number of threads we’ve had on variations of this theme recently (yours, mine, worriedmom845 and NorthMinnesota’s, to name a few, re: giving time, money, items, etc to people who seem to feel entitled to it), this must be the season for kind-hearted and giving folks to feel taken advantage of! </p>
<p>I was struck by these two comments:
and
Apparently he got over his shyness at needing to let a stranger help him or he wouldn’t have placed the 1st ad for help and hired her back when your friend/his now-wife took the job. I can’t believe she got suckered into paying HIM for the opportunity to live with and take care of him, but that was her choice. I fully agree with you and all others here in saying that if they have no problem asking unreasonable requests of you, you should have no problem either ignoring the request or politely declining the opportunity to play doormat. Good luck!!</p>
<p>Cut, baby, cut. Or at the very least, get yourself out of the head coordinator role and begin distancing yourself. Clearly you are a very giving person, and it might be time to ask yourself in this case, what are the triggers with this woman that keep pulling you in? Whatever they are, they are very strong. Your resentment is telling you that you are overgiving; the balance is off. You will need to prepare for how and where you will set your boundaries in this situation by deciding how much you are willing to be involved (emotionally and logistically), how much you are willing to do, and what you are going to say to establish your new boundaries as well as what you are going to say in response to requests from this woman. If you don’t have some sort of plan, you are more likely to give in to the next request for help.</p>
<p>NSM, you seem like a wonderful friend and had done so many things for your friend. I do find it appalling that someone would actually ask you and send you a list of things that are needed, especially if you are not family or a very close friend. Even close friends respect one another and would never put the other one in a position such as this.
They are probably so used to asking for what they need because it is the only thing that works for them. I’m sure they have gone through a lot of people and this is the only way they can get what they want. I know people like this. Wear them out til they leave and then find others to contribute, wear them out, they leave and the cycle continues. These kinds of people have boundary issues. They don’t know where it lies.
Obviously, she has no qualms about sending you her list without any regard to your feelingsor friendship then this should give you license to set your boundary without any guilt or reservation.
Usually where I come from, hospice provides for a lot of things free of charge to the patient and family. I totally get that she must be going through some difficulties with an incapacitated husband and maybe she didn’t think things thru early in their relationship, such as that it would require this much work and that he had a thug for a son that she has to deal with now and when hubby may die. Maybe she is resentful, maybe she is lonely and thinks this is a way to get people involved in her life. She is going about it in such a wrong way. This is probably due to her bipolar illness. If you want to maintain a friendship with her(I am in no way saying you should) but if you feel that you want to maintain a friendship with her, then maybe tend to her emotional needs like lunch out, a movie to help her. For christmas if you exchange gifts with her, sometimes a gift card to their favorite grocery store where she can buy some of the things they need. I have done this myself. At least you can feel that you helped in a small way without feeling used and abused. I would probably ignore her request and invite her to dinner and a movie, if you want to stay friends, otherwise cut your ties, because it will always be something with this friend of yours. After her husband long illness, then their will be the son to tend with, then her grief and the list will go on and on. When will it be your turn to have a friend that is interested in what is going on in your life?
Good luck with this.</p>
<p>NSM, I have a lot of friends who do not deal with life the way I would. I still consider them friends and can enjoy their company as they enjoy mine because we do not get into those areas of disagreement. The same goes for our family. </p>
<p>One of my closest friends does business in a way that I cannot support. We do not discuss that sort of thing. I do have lines that I do draw in these relationships, but if someone is not over those lines, I can enjoy his/her company.</p>
<p>cpt is nice…I’m more of a cut and run type. This person will move on and find new people to use…</p>
<p>What milkandsugar said.</p>
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<p>Let me preface this all by saying that hospice can never be used only for respite care. For someone to sign on for hospice, a physician must certify that, given a normal trajectory of a disease, that person has approximately six months or less to live. Not to say people haven’t been on hospice services for longer (they often are), but someone can’t just choose hospice because they want respice services. The Medicare hospice benefit (and most insurance companies) will provide up to seven days of respite care for family/caregiver breakdown, but that care must take place in a skilled nursing facility.</p>
<p>That being said, if he’s on hospice, there’s an assigned social worker. Sometimes it takes a week or so for that social worker to get out for an assessment visit, depending on scheduling, but in the meantime, they have to have made contact by phone. Social workers are particularly cognizant of family breakdown, and know when to step in and intervene if the situation is a health risk to either the patient or caregiver. I do know that, often, during their assessments, social workers will ask about support systems for the caregivers. If it seems they have little support, the social workers (and even other team members) might suggest the caregivers reach out to friends if possible. I can very easily see that kind of suggestion being given to the wife, and her taking it to mean she must get help from friends… after all, you said she has bi-polar disorder - you’re only hearing one side of the story, and you have to consider the lens through which the wife is hearing the suggestions from hospice. </p>
<p>While their are ‘adult’ children within close proximity, it is important for people to understand that that can mean absolutely nothing when it comes to taking responsibility and helping out. My bet is that if the son is just out of prison, he’s got some serious issues himself. Just because there are grown children (even living under the same roof), it doesn’t mean that those children are helpful in any way. It’s sad, but true in so many cases. Usually it involves some sort of estrangement, somewhere on a continuum; I suspect he’s using them as room and board until he can get on his feet, and is emotionally already out the door. It just plain stinks, but many times friends become more involved in care than adult children do. I see it often.</p>
<p>Next issues, while he initially hired her to help care for him, he probably was more independent then, and didn’t need help with personal grooming and hygiene needs. So it was different in that context than it is now. Hospice benefits include twice-weekly (minimum) visits from certified nurses assistants, but not all families choose to utilize that part of our services (usually they have a paid caregiver living in the house). However, I would say that if we have a patient without a paid caregiver living in the house, and they refuse CNA visits, I would bet that the patient is a male 90% of the time. Men have a much harder time accepting the kind of personal, intimate care that is often needed by the time they are on hospice. I could tell you story upon story of men who fought tooth and nail before even agreeing to meet with one of our aides. Most the time our aides win them over, starting slowly, if given a chance to meet with them. </p>
<p>However, this in no way excuses the unrealistic expectations this woman has placed on people. I can see how forces joined together could easily create a situation where someone won’t agree to bring in a paid caregiver due to modesty, distrust, and a fear of the unknown. As I mentioned earlier, the kind of care he most likely needs now is much more personal than what the wife provided him when they first met. I can also say that if this woman is at her wits end, and cannot handle his care alone, hospice will insist they either hire a caregiver or put him in a skilled facility. If she cannot handle it (meaning she can’t cope with the day-to-day tasks of keeping up a household, including meals, cleaning, and his care), they will eventually tell her she has to hire someone or put him in a residence. If she chooses not to, the hospice has the right to discharge him from their services. They will not be part of any situation that involves safety risks and/or possible neglect. It becomes a liability for them, i.e., what if she’s trying to help him up to the bathroom (and it is known by all that she should not do so due to her own health problems, and has been told not to) and he falls on top of her. Families must be compliant with hospice rules to be part of hospice.</p>
<p>Many hospices also offer volunteer services where a volunteer is assigned to a family, and makes weekly visits. Often the caregiver uses that time to either run errands, catch up on some sleep, go to their own doctor’s appointments, etc. What strikes me so odd about this situation is that this woman is so resistant to what I know are other more professional resources available to her. Granted, she may not be telling the hospice team the whole story and may be pretending that she can handle it all fine; if that’s the case, they have know way of providing some sort of intervention if they don’t know. Literally, we’ve had to have interventions with family members who are totally dysfunctional. </p>
<p>This has gone on way too long, but I just wanted to reiterate that there is likely much more to the story than you’re being told. It doesn’t mean you don’t have a right to feel annoyed and irritated by her demands, and I wouldn’t change how you’re handling it. But just remember that there’s a hell of a lot more going on in that house, and she’s obviously in chaos mode. Really, this doesn’t even come close to some of the situations I’ve encountered. My favorite one this year was the situation with the adult children of one of our patients, who was in a nursing home (relationships between the patient and children was not great). They scheduled the funeral before he even died. Literally, I was called out to see them when he was alive on a Sunday night, and they already had the funeral scheduled for Wednesday; needless to say, they were frustrated that he wouldn’t die so that they could keep to their schedule. The staff at the nursing home told me this, and we’re absolutely appalled. It created quite a rift between the staff (who was quite angered at the family) and the adult children. So yea, don’t even assume adult children always mean well.</p>
<p>Follow your gut that you don’t want to get further involved. I have a good friend who feels stuck taking an elderly neighbor to the bathroom on weekends when her caregiver is off. The woman calls in tears about how badly she has to go and my friend has to drop everything and take her to the bathroom. The woman has a daughter out of state. My friend has tried calling the daughter, last time the daughter pretended it was a wrong number. It can be very difficult for well-meaning people to extricate themselves from these situations.</p>
<p>electronblue, maybe your friend could call social services and explain the situation? Perhaps they could find a resolution to this.</p>