Newbie questions about 24/7 caregivers: legal questions, etc.

Parent Cafe
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<p>I’m sorry, but it’s hopeless about the oil tank removal/replacement and the timing of the signing of the contract. The oil tank will be removed, probably tomorrow, and the new one put in. I can’t bother my realtor at this late hour and get her all involved in altering plans. My realtor sent me a clear email this morning saying words to the effect that the contracts will be signed after the oil tank removal and replacement. She doesn’t seem concerned about the sequence of events and has faith that we will go into contract next week. I would really, really, hesitate to “push” her. But I do feel confident, based on the words of the two men who examined the Tank Tech report, that the problem is superficial and that the soil is not contaminated. If it is, (unlikely) we will perform a complete remediation and the buyer will be satisfied and sign the contract. After the buyer agreed to “take on” the extensive job of repairing the septic system, there was a pretty clear understanding that in turn we would repair the tank situation before the contract was signed. </p>

<p>An update. I was SURE the "caregiver conference was at 3 pm but at 1:35 the SW called and said they were starting, where was I?. There was a misunderstanding about the time, and we had the conference by speaker phone. The SW gave the sad report that she keeps catching my mother keeping her hearing aids in careless places; my mother left her brand new hearing aids on her lunch tray and they were discarded. So I have to deal with that. The PT director spoke next and said my mother refused to go to PT today, and if she continues to refuse, Medicare will not pay for her. My mother spoke very slowly, without focus, with long pauses, about how she has night fears and cannot sleep, and because she is tired she could not attend PT. She is declining. I told the PT director that if she refuses to go to PT tomorrow, I will come down and talk to her and emphasize that she will lose Medicare if she does not go. We all agreed that the MD should be consulted and that she be given an Ativan or Xanax to help her sleep. Also, her legs are swollen and purple and she has trouble walking. Her expected day of dismissal/move to AL was Nov 1. The SW said they expect they will have to keep her longer (oh my goodness), in which place, I see no recourse but to pay my mother’s rent at the AL for November to secure the room–otherwise we will lose the room-- and furnish it for her. Please hope for her to gain strength and be able and fit to move to AL. This decline since the pacemaker was installed is unsettling.</p>

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[quote]
You need to finish the AL paperwork. Get that off the to-do list.</p>

<p>I know you’re thinking the senior team can help, but is it so hard you can’t do it and be done with it? It doesn’t have to be absolutely perfect you can always supply a detail or some correction later.[/]</p>

<p>Oh yes, the paperwork is so easy, I have all my mother’s numbers, insurance cards, everything. Its not really all that time-consuming, I exaggerated. I was complaining because I was doing applications as well as undoing all the work I had to do to hire the caregiver. That is almost finished. </p>

<p>I emailed my lawyer, and yes, I can represent my mother at the closing with my DPOA.</p>

<p>With help from LasMa, I found a wonderful couple to help clear out the house. I was just proofreading an email to the guy when he called. He was all in favor of having my antiques friend do an Estate Sale first, and for him and his crew to deal with everything else–tag sales, donations, dumpster, and even move her furniture into her studio. He is coming over Monday morning to look at the job. </p>

<p>Definitely, she has to be able to walk, dress, need no help toileting, and being reasonably self-sufficient for AL. She needs assistance with those things right now, unfortunately. We have to get her there. At her initial nursing assessment, she was judged as needing “no additional care.” That may change. I hope her own will-power and the NH can get her strong enough to move to AL mid-Nov, Dec 1…</p>

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<p>Dharma, so sorry about your mom’s physical decline. This was something that I was concerned about. Is she on any cardiac meds that would contribute to the leg edema? The NH needs a medical consult asap to prevent any skin breakdown and threat of infection. Has she had any lab work recently? What is the status of her kidneys? What is the NH’s plan of action to address her current condition? PT on a limited basis can be offered at bedside. She may not be physically capable of PT today and this needs to be addressed today!</p>

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<p>Has she been evaluated for deep vein thrombosis?</p>

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<p>The swollen and purple legs are definitely something that needs attention. My dad had chronic leg swelling and cellulitis that were finally and quickly remedied with elastic stockings. Sorry this is happening right now!</p>

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<p>I just printed out the last three posts and will bring them to the NH tomorrow morning for comments/evaluation. I will have to talk to my mother about cooperating with her care givers (a complaint over the speakerphone) or they will take her off Medicare. First I am determined to finish the AL application tonight and deliver them to the AL. I had to go to CVS twice today. The MD package of papers to fill out said enclose a list of meds. So CVS kindly printed it out and I went and got it. Then I got to the residency application and THEY wanted a list of meds. So we had to do it all over again. The oil tank stuff is being done and people are frightening me about that. I was on speakerphone for hours to cancel disability and workman’s comp for the caregiver and after 40 minutes it turned into a busy signal. Most days I forget to eat anything until 5. </p>

<p>Off to get back to work on the AL application…</p>

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<p>Take a deep breath. This hectic and uncertain time will pass.</p>

<p>Just do one thing at a time.</p>

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<p>Ugh it’s all coming back to me. Moving the parent’s meds into a new place is almost as hard as moving the parent into a new place. </p>

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<p>Horray! CT mom, I have taken a deep breath and am smiling. I finished the application and enclosed POA,living will, health care proxy, finished he application for the NH MD, enclosed lists of meds with both, wrote cover letters to both, sealed manila envelopes and placed in the car. An AL receptionist is there 24/7; I’ll drop it off at 7:45; left a voice mail for the Director to look for it. Then to the NH. Also have to go to the Comcast store some distance away and bring back all the stuff; closed my mother’s acct but they don’t credit you until they get all the stuff back. Just poured a glass of white wine (anyone drink Bandit in a box?)</p>

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<p>I’ll lift a glass to you tonight, Dharma. A good day’s work, and progress made. </p>

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<p>Well done! </p>

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<p>People have written about having large or small problems with NH staff or dynamics, and I had an interesting experience today so I thought I would write it up here. I took the comments about about purple leg problems/complications and wrote it up for her MD. She must have immediately read it, or skimmed it more likely, because just a few minutes later she approached me as I was sitting at breakfast with my mother; she asked me to step aside and said my mother’s legs were improving; there was nothing to worry about; she was thoroughly being seen to. Something happened later which made me realize I should have pointed to each of my points in my letter about my mother’s legs point by point and asked her to address them. But I just thanked her and let it go.</p>

<p>This was this morning, Thursday. When my mother and I returned to her room, she said she slept poorly the night before, Wednesday night, but on the previous night, Tuesday night, she did not sleep at all, had what she called “night terrors,” hallucinations, and panic. She said she kept calling the night assistant for “something to calm her down” and was told (the rules, understandably) that she was not authorized to give anything. But my mother said the aide seemed annoyed at being summoned.</p>

<p>So I paged Dr. A and she came to the room; I repeated what my mother had told me and said I requested if she agreed, given my mother’s age and condition, to a sleep aide - Ativan, Xanax, Ambien… She was very vague and said (I don’t understand this - she is an MD) he would ask the psychologist to see my mother today, and based on the psychologist’s assessment, the psychologist would decide if my mother should be seen by the psychiatrist who only comes in on Tuesdays. I went to the waiting lounge and called my mother’s psychiatrist and relayed my mother’s trouble and what the MD had said–suggesting that my mother might have to wait till Tuesday for a sleeping aide, which was unsatisfactory to me, and asked if my mother’s psychiatrist could make a personal call to the MD at the NH and prescribe (I imagine the resident MD could prescribe it herself, too) a sleep aid. The receptionist at my mother’s p;psychologist’s office talked to my mother’s psychologist immediately, she called me back, and said there the MD said there was nothing unfortunately he could do - that the network of care had to be done among the NH staff. So I went to my mother’s unit and politely reiterated my mother’s troubles Tuesday night to the head nurse, demanded (politely) that the psychologist see my mother today (this was around noontime) and urge the MD on staff to consult with the psychologist to prescribe a sleeping aide. I asked at the desk to have the psychologist call me BACK after she talked to my mother. She did not. At 4:50 I called and asked for the psychologist to be paged; she answered. We talked about everything I wrote here, but I asked , what about the sleeping aid? Wasn’t that, it seemed to me, the vital issue? She said my mother’s MD had left for the day and she herself could not write an RX. I said Get an MD on call to write an RX and get her a sleeping aide IF the MD understands her age and health problems (takes them into consideration). I asked her to call me back after she contacted an on-call MD and made these arrangements (or if the MD said no). She hasn’t calledand its almost 6 pm.</p>

<p>So what if my mother cannot sleep tonight, has fears and anxiety? For an 88 year old, ill woman in a nursing home, to not be able to sleep and be anxious/agitated must be quite awful.</p>

<p>I will call to talk to the psychologist tomorrow morning about what happened eventually last night, and if she says something vague, or that she didn’t follow through, I am considering talking to a superior administrator. Would this be wise or unproductive?</p>

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<p>Ask for the case manager. Also, I’ve usually gotten better results at SNF by talking to them in person than by phone.</p>

<p>I wish I could say my experiences at SNF are different than what’s going on with you, but unfortunately this has been typical for us. Right hand doesn’t know what the left is doing, impossible to talk to someone who can solve your problem, no one seems to have any sense of urgency, etc. Persistence is needed, and lots of it. Sometimes you really have to advocate vigorously for a loved one. </p>

<p>I’ve found that outside doctors seem very reluctant to tread on the turf of the SNF doctor. </p>

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<p>I’ve been thinking it over–why couldn’t the MD treating my mother–the MD must be a geriatric specialist or close to it–prescribe a simple sleep aid and write it this morning when I spoke to her? Why did she need to consult the psychologist, which is completely unnecessary, because the problem is my mother needs SLEEP, not psychotherapy? (That’s another story) Why does the psychologist have to wait for the psychiatrist who comes in on Tuesday? This makes no sense. The problem my mother needs a good night’s sleep so she has energy for the next day. This should be obvious to the MD who is her primary caregiver. I won’t ask for the case manager yet. Thinking over whom it is best to talk to, I’ll try to speak to my mother’s MD who can write the RX and I can try to make her understand it is a SLEEP problems - let’s put the psychologist/psychiatrist input aside. </p>

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<p>Why put it aside when some of her sleep problems may be due to anxiety? Medications have side effects. If they can use a non pharmacological approach and teach her how to relax, I’d be all for that.</p>

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<p>Did the nurses or doc confirm your mother’s report of sleepnessness and etc?<br>
None of us know if this is just a “sleep” problem. What I would ask is why the doc hesitated- is it something about the meds combo or some new med related to the recent pacemaker insertion? There is sometimes hesitation to add meds on top of meds. Especially when one is compromised. </p>

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<p>The medication can have an unintended side effect-- it’s not just a sleep problem if she is anxious. If she is given anti-anxiety medicine like Xanax, there needs to have been an evaluation showing that it is medically indicated. I think you have to let them do it on their schedule. See if there is any other way for them to help your mom become calm and relaxed before bed. A bit of chamomile tea? Soft music? A favorite novel to reread favorite passages? My mother used to read and reread Pride & Prejudice. </p>

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<p>Your experience is quite common at a NH. My mother’s nurse calls me a detective because I never take what they tell me without doing research of my own. My mother would probably be dead by now (and that’s no exaggeration) if not for my intervening and demanding a particular treatment or change of treatment. Don’t be afraid to question what they are doing or not doing.</p>

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<p>An if mom is sleeping a lot during the day, it would not be surprising she might have difficulty at night. </p>

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<p>There are undoubtedly noises that she is not used to hearing at night. It’s often hard for people to sleep in unaccustomed surroundings. The bed and pillow are not what she is used to, she has bodily discomforts etc. If there is a roommate, that can result in more noise also.</p>

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<p>Dharma,
You need to know that sleeping pills don’t always work for everyone. And, as others have pointed out, they often come with side effects that can be worse than not sleeping. Let her get used to the place before ordering sleeping aids. They can create more problems than they solve, so they should be used very carefully.</p>