Interested in your opinions on this: Am I right to feel used, and to cut the cord?

Parent Cafe
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<p>A sort of friend of mine whom I met three years ago married a man who has a chronic, ultimately fatal disease that causes one to continue to physically deteriorate. He is in a wheelchair, and until the past few weeks, has been working a professional government job with a good salary and excellent benefits. He is unable to walk or to even move his hands well enough to write or help himself in the bathroom. </p>

<p>My friend has a variety of major health problems herself including being bi-polar and having some chronic physical diseases. </p>

<p>Ever since I’ve known her, she has been complaining that their friends won’t do things like provide respite care for her. She says her husband would not want her to hire help – something that they can afford – because he would be embarrassed to have very personal help from a stranger. She must have been desperate to finally be using hospice’s home care services for, she says, respite care.</p>

<p>I got an e-mail from her yesterday informing me about her husband’s using hospice, and asking me and other friends to loan them bed sheets (used to help turn him), and to supply them with cooked meals, babywipes, and detergent. </p>

<p>In the past, I have provided them with meals, hosted her wedding shower, helped with their potluck wedding reception, helped with the surprise potluck birthday party he hosted for her (friends like me did all of the work. I also addressed and mailed all of the invitations, and was never reimbursed for about $20 worth of stamps that he had promised to reimburse me for). </p>

<p>Her grown son who was recently released from prison is now living with them, but it doesn’t seem that they are expecting much of him. The ill man also has at least one adult offspring, who lives in another state.</p>

<p>I am wondering whether I’m a mean person to be irritated by their requests and to not plan to help them out more than I have in the past.</p>

<p>I think that if one can afford care, one pays for such professional care before turning to friends. Similarly, it rankles me to be asked to buy things that they can afford. I am fairly certain they can afford things like detergent, meals, and wipes since my friend has told me her husband gave her a credit card with a $20 k limit, and she told me she has never used that card.</p>

<p>The couple are friends, but not close friends of mine. Our friendship has mainly consisted of my seeing them at a spiritual group they used to attend, and my hosting her for lunch sometimes, and listening to her tell me about her problems. Our “friendship” has been very one way, though she has sent me some nice thank-you notes.</p>

<p>More background: Before I knew either of them, she met him when she answered an ad he had put in the paper while he was looking for someone to help him with his physical needs. His friends had forced him to place the ad after they had gotten tired of having to rush over to his house to pick him off the floor. </p>

<p>After he “hired” the woman to help him at home, they fell in love, and he wanted her to pay him rent for living there even though she was cooking his food, driving him to work, cleaning the house, and doing a variety of very personal things to take care of him. Since they were “in love”, he also stopped paying her.</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, but I still would value your thoughts about this.</p>

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<p>It must be tremendously hard for this couple to cope with such a situation.</p>

<p>But you shouldn’t do anything more than what you are comfortable doing.</p>

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<p>You have been quite a good friend already. It is past time for them to call in the professionals, assuming family will not rally. A one time friend let me know that their lessons to their children was that if people are not telling you “no” you are not asking for enough…perhaps this is their view of “friendship”. Take care of yourself, your family, and those friends with whom nurturing and supporting is mutual. IMHO</p>

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<p>Seconded. </p>

<p>There’s a great book for establishing a care circle for situations like this; it’s called “Share the Care.” (There’s a website, too: sharethecare.org) I’ve participated in setting up/working in three such groups; they can be a great help not only to the ill person/ill person’s family, but also to friends who want to help, but don’t know how.</p>

<p>And one of the cardinal rules, according to the book, of participating in such a group is “don’t do anything more than what you are comfortable doing.” I absolutely agree with that.</p>

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<p>I find it very odd for someone to outright ask for those things. In my experience, when someone is ill or there is a death or something of that nature, people often rally and provide some meals but I have never heard of the person who will receive these things asking for them. It seems like a bit much, particularly if it is not an issue of money. It is one thing if a friend asks, “is there anything I can do to help?” and the person responds that it is difficult to deal with meals right now. But asking for it is putting people on the spot. In my view, she put this letter out to several people and it is a CHOICE if you want to volunteer goods. I could see possibly if you had some old bedsheets you no longer need, dropping those off. Then you did something on her “list” and someone else can choose to do whatever they want. Do not feel you HAVE to do anything. Volunteering ought to be a choice and I don’t think she should have asked you so point blank as she did.</p>

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<p>Long-term care is a hard issue as relying on a few people rapidly taxes them to the point of them leaving (unless there is a strong tie like family or guilt). I think that anyone in a long-term care requirement situation would like to conserve their assets and asking others is one way to do that. I think that most people, certainly those here, would try to address their needs within their own resources before asking others for help.</p>

<p>I’ve worked in hospital med/surg wards and there’s a reason why nurses get paid well and are in demand: it’s tough work. Caring for patients that can’t always care for themselves can involve very dirty work or work requiring a lot of strength or dealing with people that aren’t in the best of circumstances expecting a high degree of service even when you have a staff of five for a ward.</p>

<p>If you want to provide help, do it on your terms. Figure out what you can reasonably do without inconveniencing yourself and your family and provide that. If you are asked to do more, just say that you have other commitments. If you’re treated like a doormat for that, then I would consider providing my resources to others that would accept it more gracefully.</p>

<p>The long-term care sounds like something that they need on an ongoing basis and burning out your friends is a good way of winding up with no support at all.</p>

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<p>And one of the cardinal rules, according to the book, of participating in such a group is “don’t do anything more than what you are comfortable doing.” I absolutely agree with that.</p>

<p>Excellent advice. If you are a religious person, you can trust God to meet their needs. There may be some people who have always wanted to help them but haven’t known what to do; maybe God will put the request in their hands and they will feel led to help. If you are not led to help, don’t feel guilty. Or maybe God will meet their needs by leading NO friends to step forward, which will convince them to hire help and pay for what they can.</p>

<p>There is a couple in our church who always need help. He is a pharmacist who is chronically unemployeed. She has a masters degree from a good school but always chooses to take very low paying jobs with little responsiblity. The hat has not only been passed to help them pay their mortage, but also to fund two expensive mission trips to Asia! I’ve never felt led to help them, but others have. If they feel good about helping the couple, so be it. I feel fine about not helping them.</p>

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<p>So glad to see that this is about a “sort of” friend, and not one of your kids! (I have read several inattentive/unappreciative kids threads lately.)</p>

<p>IMO you have been doing a LOT for someone who is not even a close friend. If you are feeling taken advantage of, then it is appropriate to pull back. You should not be doing things you will resent doing. </p>

<p>OR you could choose what level of support you do feel comfortable giving (the loan of sheets, for example) and simply communicate that you will be able to come through with that request, but may be limited with respect to the others on the list.</p>

<p>However, I would not totally “cut the cord” at this point. With her H starting hospice, your friend is probably under great stress. Also, if he is in hospice, it is likely a temporary situation and a funeral is likely sometime in '09. You may want to stay at least somewhat supportive up through that point, and then reevaluate the relationship once the circumstances are different.</p>

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<p>If they have the means to purchase food and other essentials themselves, they shouldn’t be asking acquaintances for it. If they don’t have the means, they should first look to immediate family for help and then on to charitable organizations such as Hospice, church, etc. The live-in son would be a good place for them to start. I wonder if he’s contiributing to rent, food, etc. They’d have to be at very rock-bottom financially to not be able to afford these basics. For cooked meals, why can’t the son cook if she’s unable to? </p>

<p>Regarding the credit card - I don’t think you can infer that because it’s a high limit card they don’t use, they must have a fair amount of available funds. Too many CCs are handed out or they might have been acquired under one condition (when they were employed) and are still just hanging onto it. Good for them if they haven’t entered into large cc debt as a result of the illnesses.</p>

<p>You said you met them as part of a spiritual group. If this is an organized church or a large group, maybe you can suggest she discuss their plight with the minister/leader who could put out an appeal among the members. They’ve already stepped over the boundary of asking for help so this aspect shouldn’t be an issue.</p>

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<p>I have provided respite care for an incapacitated family member, I am surprised that she would think life’s intimacies should be shared with friends & family, better to keep ones dignity and pay a professional stranger.</p>

<p>It changes the relationship, the care taker is doing something above and beyond reasonable asking and there is not the intrinsic love of mother for baby (maybe for some elders, but not all!) to give you a willing attitude, the right attitude has to come from within, but it can be tough not to resent the duties at time, especially if incontinence is involved.</p>

<p>I would not recommend jumping into that, especially if they can afford it.</p>

<p>It sounds like she is functionally unstable, she has been making a life, but not in a traditional 8-5 work style. If she really has a bi-polar Dx, then her being unreasonable is not as unexpected, but it takes a lot of moxie to send a veritable grocery list to others!</p>

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<p>Does anyone else find it strange that this man “fell in love” with his caregiver, stopped paying her to take care of him, but started charging her rent when she moved in with him?? What a great deal. He gets the same level of care, but now she pays him instead of him paying her. </p>

<p>This reminds me of the Seinfeld episode when Jerry starts sleeping with the woman he hired to clean his apartment. Once they start sleeping together, she stops cleaning – but she still expects to be paid. Jerry finally realizes this is like – well, prostitution.</p>

<p>NSM, I agree with what everyone here has said. If you’re not comfortable with this, don’t do it. Time to cut the cord.</p>

<p>Good luck.</p>

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<p>“it does seem like I’ve been caught in a net by some people who exploit their situation and use others”</p>

<p>It seems to me that you’ve nailed it, and that no further analysis or guilt-tripping is necessary. You might also want to read this:</p>

<p>[Amazon.com:</a> Beware of Pity (New York Review Books Classics): Stefan Zweig, Joan Acocella, Phyllis Blewitt, Trevor Blewitt: Books](<a href=“http://www.amazon.com/Beware-Pity-Review-Books-Classics/dp/1590172000/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1228862544&sr=8-1]Amazon.com:”>http://www.amazon.com/Beware-Pity-Review-Books-Classics/dp/1590172000/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1228862544&sr=8-1)</p>

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<p>u<em>u</em>dad, it’s not usually a matter of whether the family can afford meals; it’s the matter of preparing them – shopping, chopping, cooking. Caregiving for some conditions can take tons of time and energy, and having someone drop dinner off can be a great help to the family.</p>

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<p>I agree with jyber209. If you can somehow not feel guilty about not helping without it turning into dislike for the wife, that would be great. Her husband’s illness has more likely put a terrific strain on her. In five years, she may look back and be appalled that she put out such a request.</p>

<p>We know a couple where the husband has had ALS for about 8 years; he’s lived longer than anyone had predicted. Sometimes I’d see her at the store and her face looked so strained I thought it would break. Ironically, now that the end is near and he has professional care, she looks much more relaxed and gets out a lot more.</p>

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<p>I agree with everyone else. You don’t owe this woman or her husband anything. Do what you feel comfortable with. If it were me I would probably be running fast in the other direction. That said, given what else you’ve said about the man, I wonder if he forced her to write the e-mail. You may want to remain friends with her, but I’d put him at a distance to the extent possible.</p>

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<p>NSM, I have been in that situation a number of times. Sort of in it now. My MIL seems to feel that she is entitled to everyone’s help and donations because she is elderly and disabled. She doesn’t get it that she has to do what she can. Because she has sufficient funds to pay for the assistance she needs and is able to manage help, she is not charity material. She really wants to be.</p>

<p>MOre than 13 years ago, our sky fell in when our middle son was dxed with cancer. Our community, family, neighbors, schools, everyone rallied and gave us an unbelievable amount of help. Collections were made, dinners were cooked, Make A Wish contacted us. It was a very humbling experience for us and we are ever so grateful to this day, and still work and donate for all of the organizations that came to our aid at our darkest time. My MIL was not helpful at that time, nor was my mother. Both grandmoms ducked for cover. THey were, however, impressed with all of the help we got, and my MIL feels that she is now in need and wants the same treatment. It annoys her to no end that we donate and work for a number of such organizations, and do not come to her beck and call. That she is able and not in such bad shape is something she refuses to face. I cannot get through her thick head as to why everyone was so quick to help in our acute situation, but that we were very much on our own two feet as acute moved to chronic. We so appreciated the help and boost, but did not expect it, and used it to get ourselves in shape to take care of our predicament ourselves.</p>

<p>When we were involved with other family members who were hit with a crisis a couple of years ago, the reaction was the same. There was the expectation that the help would continue instead of to the goal of getting the family on their own two feet. Such a contrast from when my brother was dxed with a medical crisis. He was all for taking care of himself, and only used our help to get him and his wife to that stage all the faster. Some people don’t get this.</p>

<p>I see this in our fundraising organization as well. There are some families and individuals who expect a lot of help instead of being grateful that they are getting any aid. What an ugly way to look at things. It really is a spoiler. I don’t think they understand that the purpose of these efforts is to get a situation into an equilibrium.</p>

<p>If anyone can come up with piece to explain the way help works, I would love to see this wording, as this is a problem I see often.</p>

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<p>Thank you all for your comments. I see that I have been being used by people who are extremely skilled manipulators. </p>

<p>I do not want to give (she calls it “loan”, but I’ve loaned her other things that I’ve never seen again) my sheets to someone who can afford sheets of their own.</p>

<p>I don’t want to buy wipes and detergent for people who can afford to buy their own. Heck, they were looking to buy a house in my neighborhood. They are not poor.</p>

<p>I do not want to cook meals for people who could buy cooked food or have their own relatives cook their food. Not only is her grown son living with them, but she has grown daughters who live in this area.</p>

<p>I do not want to literally wipe an acquaintance’s butt – especially when that person has close relatives who can do so and also has the funds to pay for professional help.</p>

<p>I do not want to hear any more sad tales from her about how he would come home with wet pants because he wasn’t able to use the bathroom on his own (Yet, he wouldn’t file a report about his office’s not being in compliance with ADA). </p>

<p>I don’t want to hear how exhausted she is and how her back aches and her blood pressure is sky high because she has to pick him up because he’s too proud and cheap to agree to get a hospital bed for his home.</p>

<p>I don’t want to hear any more complaints from her about how their friends wouldn’t provide her with respite care even though her husband could afford to pay for professionals to do so.</p>

<p>I am sorry for them, but I prefer to be around people who do their best to help themselves when they have problems, and who don’t expect friends to do things for them that they could pay for or get close relatives to help with.</p>

<p>Earlier this year, I flew out of town to spend an afternoon with a close friend of decades who was at home dying, and had support from her husband and from hospice. I helped – including with very personal things – because I loved her, not because they asked me to. They never even hinted that I should do anything for them.</p>

<p>That situation was very different than is my current situation. I feel sorry for the disabled man and his wife, but I don’t need to feel obligated to help them especially since I’m not that close to them and they do have the resources to help themselves. </p>

<p>As my former therapist told me: I don’t have to be the universal [insert slang for breast here].</p>

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<p>

I understand but it seems unusual to send out an appeal like this when they can still afford to purchase food, possibly can afford to purchase already-made meals, and have an adult son living in the home who could probably cook as well. Friends and acquaintances in this situation will usually volunteer to occasionally drop off cooked meals (as the OP has already) but the demand for it seems to be asking too much.</p>

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<p>If you’re looking for some outside confirmation of your decision, I think everyone who has posted has said the same thing–don’t help these folks if you don’t want to do so. Don’t let them guilt trip you; you aren’t obligated to do any more than you did.</p>

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<p>Yes, this struck me too, and leads me to suspect that the request for aid had more to do with an ongoing willingness to exploit others on HIS part.</p>