Parents caring for the parent support thread (Part 1)

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<p>I’m editing out the rant about my own mother. I backed off and then some. I will be her emergency liaison with docs. I still occasionally drive her to an appt, will take her for shoes, I have short talks with her on the phone. But there has been some real (avoidable) frustration and pain to me and my own family from her actions and then she started to slop it over onto D2.</p>

<p>42 years sounds like too long with that psychiatrist when the core problems remain unresolved. How do we know he is good? Maybe none of them have helped YOU because she appears competent to them, when they have their moments with her- and she is their client, not you. (You don’t have full poa, right?) Maybe except for the attorney (she’s working for you or Mom?) In many cases, it’s our own counselor who is the person who should help with personal perspective and struggles to reach a right decision. </p>

<p>You have choices. </p>

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<p>Our posts overlapped again. Thank you for liking my costs comprisons because, you know, they were all I had/have. I do not have a “VOICE” I am recognizing today that others with compelling voices could have/should have talked to her. To talk about “voice” in this matter, forgive me while I retell a story I told to Old mom. My mother’s relationship to me isEXACTLY like this: I am the detached, polite, patient customer service rep at Lands End.I am always polite, deferential, anonymous, distant. My mother is the querellous caller who complains that something she wants is not in her size, not the right color, etc. We “settle” our call but no meaningful communication is reached. We never really “touch” each other. I don’t know why this is, but the roots certainly go back to early childhood. More recently, it is I think because she wants more time and devotion from me and my daughters than we hardly come to match.</p>

<p>Poodle calls!</p>

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<p>And this is not your sister’s fault. She extricated herself from what is a toxic situation.You can make choices that limit your role, too.</p>

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<p>Dharma, keep in mind that your mom’s shrink and lawyer and all the others are working for her. So they are going to look at things from her perspective, her desires, etc. They see you as one of her resources, nothing more. None of them – NONE of them – is asking the question, “Can Dharma reasonably do this?” Why should they? They’re not working for you, and your well-being is not their concern. You’ve shown yourself to be available, so they assume that is the state of play. And they will continue to see you as a resource until you tell them otherwise. </p>

<p>ETA – You need a hug today. ((((()))))</p>

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<p>LasMa makes a very good point. It is trivially easy for professionals to assume that you will turn summersaults and be at your mom’s beck and call. If you are clear with them – all the time – about your boundaries and your mother’s need to contract with someone to do x, y, or z, your life will be better. They may be relying on what your mom has told them, or just assuming that you will do whatever, but if you’re polite and firm they will get the message. </p>

<p>“Not my monkeys, not my circus.” </p>

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<p>LF, look at me…I came back to add a ps. But first, I am sorry you edited the rant about your mom. I would have glad to listen.</p>

<p>Hey. guess what…for the second time (this Fri pm) I too am taking my mother a long distance to be fitted for special orthopedic shoes. She had pain in a hip and went to a osteo-whatever they’re called. He said it was just arthritis. But in the NH her skilled physical therapist told her one leg, because of scoliosis, was shorter than the other, and that was why her hip hurt and the PT made her a special insert for one shoe and the pain went away. So she needs new special shoes for this new problem.</p>

<p>About the shrink. Remember, he has carefully seen her through and recover through 3 hospitaizations for manic-depression (the endogenous, “core problem” inherited from her very sick mother), knows his meds like a wizard, (changes them for her based on carefuly observed symptoms, behavior, sleep patterns, weight) always returns calls personally and promptly, and knows a great deal for a shrink about all the other meds she takes for different things.In the hospital, he visited her bright and earlly every day. He advises her about arthritis, dosages and usages of all sorts of meds, and gets on the phone with her other MDs to discuss meds and assorted health issues, not just psychiatric. He is very aware of keeping her safe, sane, and stable on meds. She mostly sees him for med management. Yes, she has needed him for 42 years and will all her life. Yes, I do have POA, and if I delve into my meeting with the lawyer I would characterize it as my(my mother’s and my) MUTUAL predicament dealing with what is best for a frail 87 year old ailing mother.But my mother paid and is the client. Right now, I am very disappointed–especially with the shrink–for not urging AL to my mother one-on-one. It seems clear to me now that in their professional responsibiities they shoud have tlked deeply with her with her seven week decline and new medical issues, the shrik should have called the Cardiologist, done so because she is technically their client (pays both bills) and their job is to assist her best. and not leave it up to me, who only knows about these issues from what I has learned on the internet.</p>

<p>As to whether I should have forseen this and been more prepared and inforned? Before this 7/8 week decline my mother was quite strong and independent. Took walks down the sidewalk with her walker.The difference is acutely noticable. I “naggged” my sister over email for years that we had to prepare for the future and she told she she would come out from Reno when the time was right and we would do it together, which obviously didn’t happen.</p>

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<p>Dharma, your mom is a master manipulator. She really knows how to pull your strings. I still remember what she said about giving your sister a piano. That’s her saying to you, better watch out, your sister does nothing for me becauset that’s your job, to do everything for me. Your sister can do nothing and not only get the piano but you’ll walk it to her on your back.</p>

<p>That is the worst kind of person for a kind-hearted direct person to deal with, the kind of person who goes with the flow and when an obstacle presents itself, finds a way past it no matter how hard it is to do.</p>

<p>I can see how you got sucked in when your mom wound up in the hospital and then nursing home. That happens to me too. But you know about what they say: fool me once…</p>

<p>Therapy, therapy, therapy. That’s what helped me. But it’s really hard.</p>

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<p>Lasma, arabrab, if what you say is true–and I have no reason to doubt it–the it is a pity to open my eyes to how little extent a well-paid professional, especially, an MD, can have so little personal interest and sense of responsibility to a long-time patient (and her obviously stressed, looking-for-guidance) daughter. I was the VOICE on a phone talking to them–a human being. Could they be so callous and in a hurry not to question me about my own thoughts and considrerations?.</p>

<p>And LF, my sister is partially at fault, I politely disagree. As I wrote above, two years ago she told me in an email she would come from Reno when need became apparent. She let me down.</p>

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<p>Old mom, how was the service? Hope it went well and waiting to hear!</p>

<p>Oh, the piano and the wedding dress remarks are by far my favorites.</p>

<p>Today I got mad recognizing how little help and guidance I got from the professionals involved and wrote a lot, if you care to read in an idle moment…</p>

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<p>One more thing, Dharma: I know the feeling of bearing the weight of the world (and your mother AND the piano!) on your shoulders. I remember sitting in the emergency room with my dad and having to run outside to call the healthcare agency to make sure my stepmother had 24-hour care since he was being admitted and I couldn’t get a cell phone signal inside. Running back and forth and back and forth and feeling like the loneliest person in the world bearing this burden.That’s when I first discovered this thread, and finding a group of anonymous, wonderful people who knew exactly what I was talking about was such a comfort.</p>

<p>Yes hugs to you (((((Dharma)))).</p>

<p>Thanks for remembering about the memorial. Of course I had to do it all myself and a certain sibling of mine was not only no help but an impediment, but I got through it and it was wonderful. Now to get my girl off to college on the 18th…and then what? I have no idea.</p>

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<p>Wildwood- I’m so sorry about your issues with your dad. My mom (lives w me) is incontinent w dementia, but luckily can take care of changing herself at this point. She uses poise extra long extra absorbent (says overnight on the package) pads inside the depends underwear that she wears 24/7. She also uses disposable bed pads on the bed at night. It is so frustrating when the person can’t help themselves in this area. Mom ruined a wood chair recently. Sometimes she has no clue that she’s wet herself and not changed in time to prevent leaking. I hope you can figure out a solution that works for your dad.</p>

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<p>It doesn’t matter what you sister said two years ago. There are posters on this thread who feel/felt their siblings were facilitating a bad situation. They can speak for themselves, but I wonder if they would get involved if they disagreed their involvement is needed today, right now, STAT. Or felt their emotions were already spent and their emotional support exhausted. (Or sometimes we just have odd eggs for siblings and we deal with that as best we can, look for whatever is good.) When I recently raised concerns about my mother to my brother, it took him two weeks to get back to me and he said- she’s competent, she manages, you’re too worried, those are her problems. </p>

<p>It’s not “how little extent a well-paid professional, especially, an MD, can have so little personal interest and sense of responsibility.” They sound like they are seeing this differently than you are. </p>

<p>They may see her as cooperative and passing the mental status exams, alert and engaged. You see the flip. You may be the voice on the phone, but they have to mind the patient relationship, legally and via professional guidelines. They are not required to take your input as gospel and act on it. Same with our kids over 18. </p>

<p>Confirm with the attorney just how much authority you have with your POA. If your mother hasn’t been declared incompetent or unable, you may not rights to the extent you think (lots about this on the web.) Can be different in different states. If you do have full authority today, you can move her to AL. </p>

<p>You need to raise your concerns and needs with your own counselor, who is beholden to you.</p>

<p>My brother in CA had a serious enough motorcycle accident that the idea he’ll be my mother’s point-guy if she moves to AZ is off the table. Leaves me, in new england. Means, if something happens to her, guess who has to get on a plane. </p>

<p>ps. if the shoe piece fits and works, why does she need new shoes? Some issue with the piece being temporary or not secure in place? Does she walk enough that this is urgent or could it be done a month from now? These are the small sorts of questions that come up. If she wants to go grocery shopping, can she ride the electric cart? Or can you make it a small market, very short time limit? We can’t always be perfect.</p>

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<p>Arabrab, I meant to comment earlier that $120,000 is a shocking amount. If I may ask, where do you live? We are paying half that, and we are fully legal, and do not live in a cheap place. Of course, adding to caregiver cost are the high costs of homerownesrhip, and those two costs, combined are way higher than AL.</p>

<p>Oldmom, I’m so glad your memorial day for your dad went well. Now you can move on. </p>

<p>As to the rest, no, I think my sister, my mother’s shrink, the elder-lawyer and the Social Worker’s should have done more for me. The only personal-friend ally I have/hasm(besides the great support on CC) is a Social Worker mom (we met through China adoption) who helped me a lot before she left for Cape Cod for a much needed vacation. She has gone into a much-needed seclusion for two weeks. </p>

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<p>Dharma, I don’t think the shrink etc are unkind at all. They are merely doing their job, which is to look after your mother’s expressed interests. </p>

<p>Have you ever told any of them that you simply cannot do all of the things necessary to give your mother what she wants? What do you think would happen if you were to say that to them?</p>

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<p>Dharma –
I pulled up my old spreadsheet. MIL was in California.
I budgeted 384 days of care (24 hour days) – the “extra” days reflected that we paid double time for aides on Christmas, New Year’s, Thanksgiving & Easter, which were otherwise hard to staff. Her primary aide got 10 days a year paid vacation. Her other full-time aide got 5 days a year paid vacation.</p>

<p>Average pay was $12/hour – more for the primary aide during the day (who could drive, and who tool MIL to doctor’s appointments, did banking, shopping and scheduling of the other aides, and lower ($10/hour) for the part-time aides. Aides from the agency were $18/hour. MIL was not at the time subject to overtime rules.</p>

<p>So, wages alone: $110,592/year
Social Security/Medicare: $$8.460/year
State Unemployment: $460/year
Federal Unemployment: $125/year (this seemed to vary a lot. no idea why. some years it was much larger.)
Workman’s Compensation Policy: $240/year</p>

<p>Total cost: $119,877/year. </p>

<p>That didn’t include the extra cost of food for the aides, or the costs for incontinence and health care supplies. </p>

<p>MIL was very lucky to have a LTC policy that paid about a third of the cost.</p>

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<p>Dharma, I am sorry you are alone with this. I wish your sister could help you, but I doubt your sister would have a greater voice than yours. I just wish you had support. When the professionals say “it’s her choice” they are really saying it’s her’s and your’s since your mom cannot do what she is doing without you. They see you as a team. I suspect they think they are helping you as they have no idea you would love to leave the team. </p>

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<p>Thank you Arabrab for the breakdown! That’s a lot of work and I appreciate it. Our costa are, like I said, about half, BUT mother does not have long-term insurance. The biggest difference is, our wages are much lower. Workman’s comp, for some reason, is much higher.</p>

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<p>Dharma – If your costs are about half, is your mom even paying minimum wage? </p>

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<p>I would like to provide a different perspective about “enabling” and siblings choosing to become disengaged with their elderly (perhaps dysfunctional) parents. Being in a similar situation to Dharma, I understand that my siblings may not want to be physically involved with our parent (as in visiting). What I don’t understand is why they would not want to assist with tasks such as taking care of bills, taxes, researching facilities, etc. I believe the reason they feel free to do this is because they know there is someone who will take care of it (me). They’re not concerned (as I am) that if they decide not to be involved our parent will not be taken care of - they know she will be and they won’t have to be involved or spend their free time doing it. What I’m sensing from Dharma is the sadness and frustration one feels when you realize your siblings don’t care to know how this will affect your life. I’m tired of hearing my friends tell me that my sibs probably aren’t thinking that deeply and they just don’t want to be involved. That doesn’t make me feel any better; I wonder why aren’t they thinking that deeply - if they truly cared about me they would. This sadness and betrayal just adds to the sadness and stress I feel caring for our parent. </p>

<p>Regarding the “professionals” opinion that Dharma’s mother is competent to make her own decisions; I found that many “professionals” don’t want to be the bad guy. They are happy when there’s a family member who is willing to continue the status quo and do the legwork. If that family member opts out, it makes things more complicated for them. </p>

<p>Dharma, in putting on my more objective hat, you have made some great strides in becoming disengaged with your mother. In my opinion, taking her for orthotics is not critical to her quality of life. I gave up tasks such as this with my parent and, guess what, she survived and is OK! In addition, I question your mother’s competence and wonder if there is not some dementia involved. In my experience, this posturing and manipulation, though inherent in her personality, may be a desperate attempt to cover for her cognitive deficits. Even if this is true, there’s no easy answer or way to get her out of the house and into a facility. </p>

<p>Sorry this is so long and if I’m projecting too much!</p>

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<p>Cashel, your post rang so true for me! Especially this part:

</p>

<p>My dad’s and stepmother’s gerontologist only saw patients in the office on Tuesdays. In the practice, most of them worked several full days a week at the related nursing home/rehab. It so happens that Tuesday is the day I see my therapist. After missing several appointments, I asked if they could see someone else. At first the woman who makes the appointments said, no, you are Dr. ___'s patient and you have to see him. After a couple of times, I said to myself, wait a minute, that’s ridiculous. And guess what? They could and did see someone else.</p>

<p>When I started saying, no, I can’t do this or I can’t do that, I found that various functionaries found a way to accommodate what I could do. It was extra work for them and if I would do it, better for them. I had to speak up.</p>