Parents caring for the parent support thread (Part 1)

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<p>These posts are so helpful to me. I have come up with a lot of new organizing ideas. There is so much to think about. I really like the idea of keeping the log of the state of parents mental capacity. I am beginning to become increasingly concerned about my father. I think he may be in the beginning stages of dementia and I fear that, at his age, it may progress rapidly. He is still in independent living but needs a lot of assistance with daily tasks and gets very overwhelmed.</p>

<p>I can not tell you all how much I appreciate this thread and how people take the time to post. I have so much on my mind that I haven’t fully absorbed all of your ideas so I am planning on rereading. The thread is a godsend to me because unless one is going through this, no one understands.</p>

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<p>I have started to keep a log, not only for my dad, but also for me. You just never know what little piece of information will turn out to be important later on. Plus it is handy to have dates of procedures and hospital stays easily available.</p>

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<p>Quoting for emphasis. I’ve learned this the hard way. </p>

<p>The other reason to start working with the case manager (as they’re called here) from Day One is that different people may be managing the case from day to day. It’s important to be sure that all of them are up to speed on your parent’s needs.</p>

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<p>Yes, especially these days with very short hospital stays, there may be a different social worker present every day nad it’s important for them to all be “on the same page” for your loved one. It’s VERY easy to fall through the cracks and a “Oh, sorry, there’s nothing that can be done retroactively,” will NOT pay the bills that will accrue. </p>

<p>Healthcare providers do want to help, but someone from the family on behalf of the patient has to be on top of things and be SURE to advocate and keep everything coordinated. Most social workers are simply pulled in too many directions and will respond to the squeakiest (but NICE) wheel.</p>

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<p>HiMom and LasMa- You make very important points. Being in touch with your parent’s discharge coordinator from the beginning is critical. Elders can be eager to go home and sometimes cognitively compromised, making it easy for them to under-estimate their current needs and “decline” additional rehab care. If you are nearby and discharge hospital to home has been proposed, it helps to do your own observation of your parent’s readiness- are they with it, able to stand comfortably and walk well to the lav, strong enough to do stairs if required, able to care for any incisions, take meds, etc. Physical therapists at the hospital should also have input for this and be able to answer specific questions. </p>

<p>As others have stated, skilled rehab post-hospital discharge is usually covered after a 3 day (not including day of discharge), registered hospital stay. I find it confusing that the Medicare site says SNF care is possible within 30 days of this qualifying admission, yet once discharged many (including my family) have been told that this coverage is not possible. Anyone understand the circumstances under which this is allowed? </p>

<p>Ensuring that my parents had an appropriate Medi-gap policy has saved huge amounts of money. I initially had no idea how routinely skilled nursing rehab was necessary for elders. Reviewing the current Medicare regulations and any additional insurance policies that are in place for skilled nursing/rehab coverage is worthwhile. A major reason many elders get extra benefit out of having a Medi-gap insurance policy is that Medicare covers only 20 days skilled nursing days in full and for days 21-100 the current deductible that a patient is responsible for (without Medi-gap insurance) is @$145/day, with full pay after that. As others have said, clarify this coverage with both hospital discharge staff and then with the skilled nursing facility as individual circumstances can vary. Skilled nursing business/billing staff can be a big help as they benefit directly from elders having good coverage and often know the insurance options in their state well. Medicare coverage parameters can change annually.</p>

<p>Good luck with all this.</p>

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<p>Also important to be realistic about the situation that the elder will be returning to–resources that will be available, whether there are stairs to negotiate, who will be in the household, mobility needs and aids, memory, whether someone is available to be with the elder 24/7 or whatever length of time needed, ESPECIALLY at night, when many falls and worse may occur.</p>

<p>Good luck to everyone dealing with this now, as many of us will need to navigate this in the future as well.</p>

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<p>HELP requested from the experienced crowd:</p>

<p>I am advocating for an elderly neighbor. She has had a perforated colon since before Thanksgiving, was in the hospital, then out into aftercare. She spent about 10 days in aftercare in unmanageable pain.</p>

<p>Back into the hospital last Thursday. She is on IV narcotics, oral narcotic 1, oral pain med 2, local anesthesia patch and a narcotic patch. This should be enough meds to choke a horse, but she is still lying there squirming in pain. They added an anti-anxiety med which helped somewhat, they say.</p>

<p>She feels she is in constant pain, the staff says she is sleeping all the time. I sat and watched her for over an hour, she dozes for a few minutes, then startles and cringes or wiggles her feet in pain, then dozes. So, yes, a person could walk in and see her sleeping, but it is not deep or restful sleep, it is fitful interrupted snoozing.</p>

<p>They are saying today that they want to discharge her tomorrow to after care, but they had also said they wanted to get her pain managed on oral meds. I just don’t see how they can be ready to send her to aftercare, she is miserable and it is real pain.</p>

<p>Any experience with anything like this or ideas how to best handle it?</p>

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<p>Somemom, have they done more x-rays or something to see if the problem is corrected?</p>

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<p>Yes^ it sounds like the problem is still there. “After care” meaning after what? Did she have surgery?</p>

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<p>She has a perforated colon and an abscess, they have wanted to avoid surgery so are letting it heal, the issue is uncontrollable pain whilst it heals.</p>

<p>She has had three CTscans lately and the abscess is steadily shrinking.</p>

<p>Aftercare as in rehab not home because she cannot take care of herself yet.</p>

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<p>Somemom- Your neighbor is lucky to have you and I see agree that there may be reason for caution here. As others have said, locating the source of the pain is important. Just saw your update. Is your neighbor ever able to speak and locate the pain? Sometimes, when people have a serious diagnosis, assumptions get made about what is wrong without looking further.</p>

<p>In situations like this, assessing what is different now from admission that indicates readiness to leave can be helpful. If the pain is not currently well-managed, how will the discharge be successful? Is the current medication regime one that would be carried out in aftercare? If they want her pain manageable on oral pain meds only, what is the rationale for navigating the transition outside of the hospital as that was what brought her back in the first place? Many hospitals have pain management teams with expertise in these matters. Have they been part of this plan? Sometimes, asking questions is the most helpful thing an advocate can do. </p>

<p>I doubt this is the case here, but some IV pain meds are self-administered with “built-in” limits to dosing. I have watched a patient never be able to get ahead of the pain as they would fall asleep and then wake up in pain. </p>

<p>I think it could be helpful to encourage direct communication between the aftercare facility (particularly if it is to be the same one) and the hospital prior to discharge. Based on the history, they might encourage caution.</p>

<p>Best with this.</p>

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<p>The rehab center my mom was sent to from the hospital had access to a Palliative care consult. They were reticent to call in the consult because it meant their in house doc (and we presumed the $$) would be usurped by an out of facility care team. However do be aware that a Palliative care consult will probably be available for her both in the hospital and in the after care center. There may be some resistance to calling this type of specialist in, but it might help. Good luck!</p>

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<p>I will check on these ideas tomorrow, both great. It really helps to have the eyes & brains of people who are not mired in the minutia!</p>

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<p>Amen to that. I’ve had many a conversation with a doctor which began “This doesn’t make sense to me…”</p>

<p>somemom, something to keep in mind. When a patient is discharged and returns within 30 days for the same problem, that’s a re-admit. Hospitals HATE re-admits; it looks just terrible on their statistics which affect some kind of funding (not sure of details here). So when you talk to the doctor, point out that she’s currently there on a re-admit, and gosh, you sure wouldn’t want her to have to be RE-re-admitted. You’d think they’d be aware of the re-admit, but those people are so overwhelmed and rushed, they can easily miss it. And hospitals generally want to push people out as quickly as possible, and tend to err on the side of discharging too soon. </p>

<p>My father has a history of re-admits, and whenever I mention this to hospital personnel, it always gets their attention. Several times, they’ve kept him beyond the original proposed discharge date because of it.</p>

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<p>I am being the man on the street for her kids who are far away, the kids are dealing with the official doctor calls. They brought in the palliative care doc, a bit of confusion between palliative doc & the patient’s kids about Mom not being terminal, confirming goals was momentarily stressful as they discussed end of life issues and the kid came back, No no no, she will be living through this, but needs the pain managed by someone who is a specialist at that" :eek: but the kids are pleased to have the pain management person helping.</p>

<p>The other ideas are also in the mix, thank you so much for the ideas. Her kids thank you too, for the palliative care idea as no one (even me, who should have thought) brought it up</p>

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<p>Glad that she has some pain management expertise in the mix. I understand the confusion re: palliative care- it is often used inter-changeably with hospice care, implying that the focus is on comfort measures as opposed to active treatment of a terminal illness. </p>

<p>As an aside, hospice teams often have excellent pain management skills and access to specialists in geriatric medication-including drug interactions as well. I found them very helpful and willing to pull in some very sophisticated physicians for consultation if indicated.</p>

<p>Somemom- I am sure your support means a lot under these circumstances.</p>

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<p>The palliative care recommendations are definitely different than the other docs, the nurses were quite surprised at the new med she is on. It is great to have the new doc on board, it seems to me that any Doc who is focused on saving your life, is just not up on comfort care and pain reduction. You cannot be an expert at all of it!</p>

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<p>Hi all. I have been away from this thread for a couple weeks because I just needed to be away from the sadness… not to say that this is a depressing thread at all - it is wonderful and I am actually sad I did not find it last summer when everything was beginning with my parents. Sometimes I feel bad reading and not posting or not helping others out, and I wasn’t in the frame of mind to help out… Handling a death like that is such an emotional whirlwind. I’d always imagined it would be sadness across the board, but sometimes I cry when I’m happy, others when I’m sad, sometimes when I feel regret, sometimes when I just plain miss dad, sometimes when I miss that he won’t see my kids go off to college, etc… And sometimes I’m OK, and then I feel guilty… like I said, emotional whirlwind. </p>

<p>WorkInProg - I’m so sorry about your dad and have not gone back to read through your entire story (or the rant! :slight_smile: ) but I will. I’m hoping that assisted living will work well for your mom and if in fact her dementia is on the downturn, she is in the right place. I would like to punch my sister at times so I can punch your brother for you! :slight_smile: When she was up last (lives in VA, I’m in NJ), she said “I finally see what you’ve been saying about mom and her not understanding things” I was like, “REALLY?? NOW you see?? Did you think I was just imagining it?” </p>

<p>AnxiousMommy - looks like you’ve gotten so much excellent info about rehabs, how they work, their goals, etc. At first, my dad thought rehab meant he was very bad off, but throughout his weeks there, he realized that it was helping him get stronger and the new dementia meds seemed to be clearing his head a bit of a fog that had been getting to him in the past years (although he was too proud and independent to ask for help. He’d just make more lists and try harder to “pull himself together”).</p>

<p>Counting down - thanks so much for the first hand info! And thinking about your son saving your life makes my eyes damp! :)</p>

<p>OutInLeft and Cormom - I feel similarities in your posts to my situation(s). It’s 2:30 am, and I forgot to jot down exact thoughts, so I will go back and do that… I can probably just edit this in a few minutes!</p>

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<p>Here’s my new edits: (the ended up too long and admin wouldn’t let me put them in that post, so here is a whole post of edits:</p>

<p>WorkInProg - I had you confused with the punching desire, although perhaps you had a desire to punch the young priest? Might go to hell for that, sooo… I would be willing to “take the hit” for you! ;)</p>

<p>OutInLeft: I will punch YOUR brother for you! And yes, your post resonated SO much with me, with the rehab that worked, then the stoppage (is that a word??) and then a clear weakness, and then excuses not to stretch or do exercises… and the worries about what certain meds might be doing. My mom is the first one to blame a med for anything, as well as the first one to put stuff in a pile to “get to later”. Hey, I am a procrastinator by nature (why else would I be up at 2:40 am when I should be going to bed?) but I know that putting stuff off only PUTS STUFF OFF and doesn’t make it any easier. In fact, it makes it harder… </p>

<p>We had a neuropsych evaluation done on mom and it was enlightening to us, but mostly to her. She was surprised how bad her memory was in certain areas and had always kind of “jokingly” accused those around her for saying she’s forgetting. Now she really believes it is true. she keeps using the phrase “I’m losing my mind” or “I’m going crazy”. I want to keep her thinking positively about it and to teach her to do what current medicine thinks the best way to at least hold onto current levels of cognizance can be. Shortly after the test (and a couple little fender benders) she chose, or her own accord, to stop driving. It feels better for her to decide than for me or a doctor to decide for her. When I told sis about no more driving, first words were, “should we sell the car?” Yes, it’s practical, but the VERY first words? How 'bout, “That must be hard for mom to handle” I’d give that one a slap, maybe not quite a punch. i"m saving that for later…</p>

<p>Cormom15 - Every time I see a pic of Cornell (and my dad had plenty in his album) I get all teary and wish my son had chosen to go there. I have hope with my next son, a junior now. I would just love if one of my boys went to my dad’s school…So your dad’s dementia sound very similar to my dad’s even before this summer. Living independently, but not really. And the getting overwhelmed. I see that in mom, and saw it in dad after we were allowed to start helping him look around his office at all the stacks and piles and late bills. That was getting new for him and worrying him. Until his first rehab, they had each other, but two people with early dementia don’t necessarily make good decisions… It seemed to be a bad decision that started it all…</p>

<p>If you are worried about dad and his abiltiy to live at home independently, I would re-recommend the neuropsych test for him. You can couch it in a need for a baseline, you know, for your journal! It’s important with our parents to phrase things just right that we are not lying to them, but may be explaining what needs to be done in a way that they will accept and they they believe is better for them…</p>

<p>OH, just thought of this quote: “I’m now the friendly nagger/encourager – eating, drinking water, exercising – and she varies between receptive and evasive.” SOOOOO familiar with mom. Unfortunately I found that my pleasantness devolves and I become more of a just all around nag. Friendly nagging went out the door. Remember, I have that darned 17 year old going of to Duke next year who thinks he’s all that… I will post our new plans in a new post so this one does not need chapters… ;)</p>

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<p>Came on here with updated living situation news for mom, but more enjoyed learning and talking to others who are in similar boats. This is one great group of people to go sailing with, that’s for sure!! But it’s late. </p>

<p>More tomorrow.</p>