Parents caring for the parent support thread (Part 1)

<p>Would have reported this morning, but talked from 9:15 till 11 with my social worker friend with whom we shared a mutually cathartic conversation. She is a lovely women going through some bad times.</p>

<p>Early yesterday morning, realizing from advice given here, I felt compelled to prepare for my mother a cost comparison of Assisted Living vs. 24/7 home care. I called the “resort like” Assisted Living residence where my MIL had lived before she went into a Nursing Home and learned that the base monthly cost is $3,820 with a supplement based on the assessment of your level of need. Not exorbitant. They luckily had one unit open.It is only 20 minutes away. The services provided are tremendous and obviously the benefits of quickly selling the house and eliminating the costs associated with home ownership would greatly increase my mother’s assets. I typed this up in detail.</p>

<p>Then typed up for comparison the costs associated with 24/7 care and living at home and taking a reverse mortgage. Quite time consuming but worth it or me to feel informed, prepared for the lawyer, and to having something in hand for my mother to read and ponder. I did learn from talking to a payroll person that each caregiver’s “gross” salary would bring each woman’s daily cost to about $200. On top of that, the payroll service itself (not very expensive) has to be paid.</p>

<p>Was restless, so left for the lawyer with an extra hour. Quite lucky because my country road had two occasions of traffic blocked for one-way traffic, a great delay, and had to call the lawyer’s office three times to find it. It was incredibly hard to find. Inside, it was exactly like a PBS scene of a lawyer’s office in a Dicken’s novel: papers piled to the ceiling, puppets, parrots, dolls, tapestries strewn all over. </p>

<p>The lawyer greeted me warmly and said, Excuse me if I seem a bit wobbly, but I just came from my husband’s memorial service. I was shocked and offered extreme condolences. He had died on July 1. She gave me a full 60 minutes and was completely focused and taught me a lot. First, I told her about the cost comparisons I had prepared and she asked to see them. She read them and said, “Well, you basically done all my work!” She said her advice was for my mother to sell the house and move into assisted living and mentioned another nice local place. I told her that I agreed strongly but that I thought my mother would strongly resist. The lawyer said, I have had many clients faced with the identical decision and there are some who despite the disadvantages will not budge from their home. It is their decision. She gave me the business card for a lawyer she worked with on all her clients’ reverse mortgages and said he will do his best for us. She also told me she would put me in touch with a payroll agency that handles many employers with just one or two employees, and she said they are quite reasonable. She did express a concern that caregivers, despite experience dealing with sick people even to their death, were not skilled nurses, and she pointed out that I would be driving my mother to multiple MDs a lot. She also told me, which I didn’t know, that it was vital to add liability coverage to my mother’s homeowner’s insurance When we stood up to part, she asked me, “Are you an English teacher?” I said I was! Never was asked that as an open-ended question, curious. She said she was an English teacher before she went to law school.</p>

<p>On to the nursing home. My mother looked terrible. We chatted and she asked, what did you learn from the lawyer? I explained that the lawyer determined that the best course for both her health and assets was AL at the nice place near us. My mother angrily said to me, “You are treating me like a unit! I am your mother!” But I felt it was important enough to not let it go. I told her, you asked me to see the lawyer. This is her expert advice with which I agree. You will have greatly better assets and skilled care. But it is your decision. She insists that she will stay home. I realized it was pointless to show her the papers I had typed up, but I warned her that the costs would be much greater, and I repeated what I told her on Sat, that she had three years worth of assets, likely less. I felt I needed to press her to understand, so I asked her do you understand? Do you recognize that when your assets run out you will 91 years old and live with skilled nurses in a nursing home? She said yes.</p>

<p>But then she said, I thought about how your girls would go away to college and you would have room for me and I could order my meals from restaurants. I had to reply, The lawyer told me she strongly advises her clients from taking this course (the lawyer did in fact tell me that) and all the experts I have consulted have said the same thing; you will need skilled nursing care, and you must conclusively understand that that is impossible. She said alright.</p>

<p>Then we talked about my children and out of the blue she said, I love you, I love your daughters, but I do not like your husband. I was aghast. My husband is a bit of a spendthrift and has on his own bought her Christmas presents, Mother’s Day, birthday presents, entertained her/drawn her out with questions like, How did you celebrate Christmas as a child? Does chores/fixes things. It was a completely bizarre remark.</p>

<p>Then she asked me, Would you take me down to my childhood neighborhood (in the Bronx, now a slum) so I can have a real Jewish corned beef sandwich and buy a seeded rye bread? I said, of course.</p>

<p>Then, a complete non-Church goer after her wedding, she started reminiscing about the different churches my father would take me and my sister to (he was an observant Polish Roman Catholic). Mentioned and talked at length about the various churches, first communions, etc. I infer from this that she is thinking about death.</p>

<p>Anticipating tomorrow’s caregiver meeting, I spoke this am in advance with my mother’s MD and her social worker that my mother would insist on going home and I was sure (in my unprofessional opinion) she was not ready. The social worker wisely told me, Don’t mention the 24/7 caregivers! I asked the MD, if it agreed with her judgement, to tell my mother to anticipate at least another week in the nursing home. </p>

<p>Tomorrow at 11 am I pick up another Polish caregiver at the train who will work 24/7. And the agency has a second woman interested if need be. I emailed him terms to go over with the woman, if he hasn’t already, and insisted she bring references.</p>

<p>Have not heard a word from my sister in two weeks.</p>

<p>Sorry for the length of this post, but had to tell the whole story. Hope it was to some degree entertaining, at least the part about the corned beef sandwich!</p>

<p>Dharmawheel, you say that your mother needs skilled nursing care. But I thought that the Polish women were not skilled nurses. Rather, my understanding was they were caregivers not trained in nursing care.</p>

<p>Well it’s good to know that an expert looking at your specific situation is so clear in her recommendation. Maybe your mom just needs a little time to wrap her brain around it. I would not hesitate to show her the numbers though; in fact, I’d insist on it. These are the cold hard facts. </p>

<p>Could you arrange for her to talk to the attorney personally? I’ve found that usually I’m the very last person who can make my mom believe something she doesn’t want to hear. A neutral third party is best, especially a professional. </p>

<p>And the remark about your husband – designed to distract you and throw you off balance. Don’t fall for it.</p>

<p>Cardinal Fang, you are right, the Polish women are not skilled nurses. But as I wrote, in their references, adult children had described how these individual women had provided care to very ill parents, even to the point of death. Perhaps I am jumping the gun in saying my mother at this point NEEDS skilled nursing care. She might not NEED it yet but she will need it later (nursing home scenario. And perhaps we will have to go through the circus of moving her to AssisedLiving prior to an out-and-out nursing home when it becomes clear to her that she needs an environment that more resembles a nursing home with nurses on call). The attractiveness of the AL is that skilled nursing care is available on site; the contrast the lawyer made with this and the caregiver scenario, is that I will have to be taking my mother to the MDs a lot. At this point my mother needs help carrying things, someone to clean her house and do the dishes , someone to cook her meals, do her laundry, change her bedding, bathe/shampoo her. She insists she can dress herself, but it takes her a long time. She insists she does not need help in the bathroom. She can walk, slowly with a cane, and when she goes out she uses a walker. I am not sure if she needs someone to listen to her heart and take her blood pressure every day. Her nurse will be at the caregivers meeting tomorrow and I’m sure we’ll talk about that. This morning my friend the Social Worker–her job is to visit elders in their homes and check on them for Medicare/Medicaid somehow–she is not a nurse–she said the NS will not send a person home unless they feel they are ready, and who knows? Maybe at the meeting tomorrow the nurse/SW/PT person will urge Assisted Living due to how they assess her level of need. </p>

<p>LasMa, you gave me the idea of bringing my two pages of cost comparison to tomorrow’s meeting and in the presence of the team ask them to join me in urging my mother to look at and compare the costs.Put under that degree of pressure, especially if they recommend Assisted Living, might have some bearing on her thoughts. But with me solo alone yesterday, I can’t emphasize enough how vicious and hostile she was to the Assisted Living scenario. If things go in that direction tomorrow–the team recommending assisted living-- I can also urge her to talk to the lawyer herself. </p>

<p>Maybe the team will support you in urging her to talk to the lawyer. </p>

<p>Just had an evil thought! If your mom still refuses to consider AL (I’d give her a couple of weeks; this is still very new), then say, “OK, so we need to start thinking about where you will live when your money runs out.” Then take her to visit the seediest nursing home you can find. Maybe AL won’t seem so bad if she sees the alternative! </p>

<p>I am really dreading this meeting.</p>

<p>Dharma, we’ll be with you in spirit.</p>

<p>Dharmawheel, you had a full day yesterday! It must have been very emotional for you too. I think your mother may have spoken so insistently against moving out of her home because she was getting ready to spring the suggestion that she could live with you and “order meals from restaurants.” That’s kind of funny-pathetic, no?</p>

<p>I agree that you can give her a little time to get used to the idea. It’s a huge shift for her to think about.</p>

<p>Congratulations and good luck at the caregiver meeting. ((((((hugs)))))) too!</p>

<p>Yes, we will.</p>

<p>Dharma, as you’re thinking and talking about this situation, I urge you to distinguish between on the one hand the unskilled care that you are hiring the Polish women for: cooking, laundry, bathing your mother, the kinds of tasks you or I could do; and on the other hand, skilled nursing care that would have to be provided by trained nurses. Your mother now needs unskilled care, which costs about $200/day. It’s likely that soon she will need skilled care, and that will cost a lot more.</p>

<p>Dharma, we’re supporting you in spirit all the way. Hang in there. We are with you.</p>

<p>I agree with what was said. Sending hugs and good wishes for this to resolve well. </p>

<p>Let you mom have the full scope of information.She cannot put her head in the sand. Use every resource to inform her and get the AL side totally shining.</p>

<p>Also when it gets time to move her, move her to AL - whichever one is the better one. If she complains about it, have a visit to the other one. Keep putting off any chance of going back home. If you do not bend (and you do not facilitate her moving home, your mother does not have the physical and mental capacity to have it happen w/o your help).</p>

<p>Ever hear the saying ‘do not give a drunk a drink’ - well why help your mother move home when that is not best for her, let alone for you? Your mother may live well into her 90’s - why should she be living in a medicaid nursing home when she can have her money stretch with AL and care paid for by her?</p>

<p>However, after all is said and done, you @dharmawheel are putting more burden on yourself for your mother to stay in her home, which also will not be the best decision for her health and well being. So you are cheating your family and your mother because your mother wants what she wants in her fantasy wishing.</p>

<p>Sorry if this is a little harsh. I have no ‘dog in the hunt’. Your mom has been using bully and manipulative behavior - and trying to pull you under with some of the conversation you had with her. She knows where to attack to try to get what she wants.</p>

<p>Dharma, just a thought about terminology. You’ve been saying to your mom “when you’re 91” which may sound a little more distant than it is. Heck, that’s another whole decade! </p>

<p>Fang, you posted about the cost of unskilled help, and the high likelihood that Mom will need some kind of nursing help at some point which costs significantly more. It sounds like we may be looking at two years or less. So would it be dishonest to say instead “when your money runs out in a year or two?” The shift in perspective might jolt her. </p>

<p>I don’t believe the facility can discharge her without an adequate and appropriate discharge plan in place. If she needs supervision/care and this is not in place, then it is unsafe to discharge her to her home (this is NOT your job to provide this service). Stay focused on that, and that AL is an appropriate D/C plan. If you allow them to discharge her home, their work is done. Stay focused on the fact that there are not resources/services in place to have her in her home. Be prepared to think of safety risks (stairs, step up into tub/shower, no safety rails,etc. Also, many AL facilities will allow a person to try it out for a week or 2. Many older adults are apprehensive, and once they take it out for a spin, as it were, they are more comfortable with it. Many older adults are frightened of change. Acknowledge that with her, ally with her fears, but stick with your plan. Don’t get sucked into the side diversions.</p>

<p>It is very unlikely a treatment/discharge team will involve themselves in your family finances, so to be honest thats probably not worth spending much time on. Their job is to get her an immediate discharge plan. After that its not their issue.</p>

<p>I am concerned about the stream of Polish caregivers. Ask if they are legal residents, can drive, have reliable transportation, are adequately trained, will commit to a certain length of time, etc. But if in home care really isn’t an option, then stay focused on AL. If mom is going to act out, let her do it there, in the facility, where the team can address her behavior. </p>

<p>So, bottom line. Dont get into side issues. The caregivers, the cost, etc. Stay focused on safety issues, and that the only viable option is AL at this time. Good luck.</p>

<p>I had a crying breakdown with a nurse when my mom was in the hospital. I was so afraid they were going to release her, and she was in no way capable of taking care of herself. The case managers really were very helpful.</p>

<p>However, no one can force her into AL or nursing care. If she says she’s going home, they’ll let her go.</p>

<p>Good point, jym. I believe it’s actually illegal for them to discharge a patient if they know that adequate care isn’t in place. So Dharma, talk to the case manager or discharge planner and tell them that very clearly. Ask them to chart it. Remind them every day. Yes, literally every day. Healthcare can be a very inefficient bureaucracy.</p>

<p>One more point. It sounds like your mom is non-compliant (walks with a cane when she is supposed to walk with a walker, etc) Does she take her meds as prescribed? Apologies, I’ve forgotten what got her hospitalized in the first place, but hospitals do not want Medicare readmits within 30 days after discharge, or they run the risk of getting fined by Medicare <a href=“Medicare To Penalize 2,217 Hospitals For Excess Readmissions | KFF Health News”>http://www.kaiserhealthnews.org/Stories/2012/August/13/medicare-hospitals-readmissions-penalties.aspx&lt;/a&gt;&lt;/p&gt;

<p>This is one reason that staying focused on safety and compliance can help drive the point home that she is not ready for D/C.</p>

<p>All responses appreciated. About jym626, #3455, if discharge options are discussed tomorrow as happening soon (the MD said today she is advising another week in the nursing home but that doesn’t clear up the problem, only pushes it back) the two options will not be AL or “back in the home” as though she would be alone. I, myself, could pretend to that. In fact, the Social Worker told me not to mention 24/7 caregivers myself, but my mother certainly will do so. It is all that is in the foreground of her mind, and she will certainly bring it up as a guarantee that she should be discharged asap.</p>

<p>I’ll look at the kaiser link later, but what happened was ER/hospital/3 wks nursing home, then 3 days home/ER/hospital/right back in the nursing home. So some Medicare rule allowed her to be virtually readmitted to the nursing home in a snap. I think it was about a week between nursing home stays. She has “secondary insurance” which my social worker friends says covers a lot of nursing home days (100?). I don’t know the rules about in/out/readmit etc. if there was a third go-round.</p>

<p>The rules of the Polish agency are very strict. The women must be either US citizens or have a Green Card. The owner insists on years of experience with references. The women do not drive but I live a mile from the train station and would be providing transportation to and fro.</p>