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Parents caring for the parent support thread


Replies to: Parents caring for the parent support thread

  • compmomcompmom Registered User Posts: 10,608 Senior Member
    Just wanted to mention that my mother, now almost recovered from a pubic bone fracture with bursitis, just switched back to rollator (walker with wheels and seat) from the wheelchair. Of course, she thinks it is the wheelchair because it has a seat.

    I got reports from several staff that she has been sitting on the rollator facing the wrong way, propelling herself forward crab-like with feet first, and sort of paddling down the hall with her cane. Like a riverboat.

    The physical therapist says she has never seen such a thing in her entire career.
  • eastcoascrazyeastcoascrazy Registered User Posts: 2,533 Senior Member
    edited May 23
    Thank you all for the virtual support.

    I am somewhat removed from this, as a daughter inlaw and step-daughter in law, which I think is a source of my own frustration of watching and offering ideas and support without stepping on toes. I will not be the person who is constantly poking my husband's relatives to do something. That isn't the kind of relationship I want to have with these people, who I love.

    The fact that there are nine adult step siblings plus spouses also makes this unfolding situation cumbersome.

    The lack of a recent will is one of those things that has been addressed for several years now. The original lawyer who helped them has left that firm, and I believe neither she nor the firm retained a copy. They never totally blended their finances, and have been very private about those issues. It will be a huge mess if step FIL dies suddenly and nobody knows whether his estate goes to MiL or to his kids.

    Here's how it goes every year: The sibling who lives closest offers to make an appointment with his lawyer who drew up his own will, then the inlaws insist they need to find the old will (of course they don't, but they insist they do), and then before that can resolve so that an appointment with the new lawyer can happen, another medical issue crops up and the issue of the will is dropped for a few more months.

    There is a lot of passive waiting at this point among the nine kids, and also a lack of good communications between us. The sib who lives the closest is a physician who has a long commute and four very active kids in the prime of teenage sports and activities. He's bearing the brunt of this simply because he is the closest person, but also he is not good at communicating to the whole group. Many of them know bits and pieces, but not everything.

    Again, I'm well aware of what needs to be done, and that this family dynamic is dysfunctional at the moment, but it is not my business to fix it. Or even to lead the charge, so to speak.

    So thank you for letting me blow off steam here.

    It is probably going to get a lot worse before anything resolves.
  • HouseChatteHouseChatte Registered User Posts: 480 Member
    @MaineLonghorn is there an accrediting agency or something equivalent to search for one? How did you find yours?
  • esobayesobay Registered User Posts: 1,333 Senior Member
    edited May 23
    @compmom, well, any exercise is better than none and you can see she can still make plans! i told my Mom's MC to let her creep in her wheel chair if she wanted. She also tried to climb the walls. She had an alarm on her wheel chair because she was a very bad fall risk out of it, but she would creep (toe walk the wheel chair) down the halls out of sight, then jump out and try to put her foot up on the handrail. Maybe she wanted to practice ballet, but at that point she didn't speak much at all.

    @MaineLonghorn I had a friend who had an elder advocate for her FIL. She lives in CA and he lived in NYC and she also said best money ever spent. I don't know how she found the help though.

    @eastcoascrazy we are the BEST place to vent, might get some good support and won't cause any family damage. Very freeing to be honest, and honestly, sometimes all I needed was a good honest no holds barred vent out.
    Sounds to me like you are doing the best thing for the LOOOONGGG haul, which is preserving family connections and supporting your spouse. I would have done more for my mom, except for my DH resistance. My brother didn't think she needed as much until later on. I would have resented either my DH or my SIL getting involved in a "global" fashion. (ie ok for DH to complain to me, not OK for DH to complain directly to bro).
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,251 Super Moderator
    @HouseChatte This is where I found names: https://aphadvocates.org/memberships/directory-requirements/

    Then I asked for references and had fairly long conversations with two women, who gave the advocate glowing recommendations.
  • compmomcompmom Registered User Posts: 10,608 Senior Member
    Wow $110 an hour. I do all that myself. I had no idea I was saving our family so much money!
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,251 Super Moderator
    Yeah, but Dad wasted a lot of money on home services after his first hospital stay, for nothing. I think he will save money in the long run by getting better care and staying out of the hospital.
  • HouseChatteHouseChatte Registered User Posts: 480 Member
    We're nowhere near needing anything like a patient care advocate, but I have a Pinterest board of elder care resources for my mother, and so many suggestions from here are on it already -- thank you all -- what a great group!
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,251 Super Moderator
    I should add that my sister and I WERE advocating for Dad, every day. I'm pretty good at it since I've had to help out my mentally ill son for the past nine years. But we have just been flabbergasted at the mistakes and lack of coordination on the part of medical professionals. When Dad started going downhill last week and we were having difficulty getting anyone taking us seriously, we realized we needed professional help.

    I am going to extend my stay to Austin. I was going to be there only a few days, for my nephew's high school graduation, but my sister has to go out of town on business for a full two weeks and it's obvious Dad will need help while she's gone. So my visit will be May 29 through June 13. It's going to be really tough since I have a lot of work to do with DH in our business. I'll be able to do some of it remotely, but it will be challenging. But that's life!
  • compmomcompmom Registered User Posts: 10,608 Senior Member
    If you have an invoked proxy, the medical professionals HAVE to take you seriously. That applies to dementia and other reasons for the patient not being able to speak for him or herself, but a regular medical proxy can be useful too.

    Over the years, I have caught a major insulin error about to kill my daughter (TBI, in coma), refused to leave an ER with a kid having asthma so bad that they couldn't hear a wheeze and wanted to send her home, stopped MD's from withholding Coumadin and causing a stroke, diagnosed severe heart failure and urinary tract infections in my mother not noticed by MD's., and caught a PT doing therapy for a hip replacement two days after a fracture. Recently, for 5 days, my mother had a diagnosis of "constipation" when she had severe bowel obstruction that almost killed her. Also they gave my mother albuterol for breathlessness that was caused by a heart condition. Etc. etc. The medication errors during transfer from AL to hospital and back are consistently tough to correct. I could go on and on. Twenty five years of this stuff.

    All while maintain a pleasant, "professional" manner because relationships with doctors, nurses and other staff are key to good care.

    The vigilance and energy required is staggering. I think it requires a constant presence by the bedside, or at the very least, a proxy that requires them to talk to you. I make sure the doctors call me if I missed their 7am visit. If we hired a consultant at $110 an hour it would be $1000 a day for what I perceive as needed.

    Electronic medical records are worse than useless and need monitoring as well.

    The nurses are SOOO overburdened- and dedicated. I am not knocking their great work, not at all. In fact, I am not knocking anyone. The problems are systemic.

    I have been asked over and over, "What about people who don't have an advocate like you?" Indeed. And what about those without an advocate OR the money to hire a consultant?

  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,251 Super Moderator
    My sister has medical power of attorney and Dad has signed release forms for the advocate. My sister, uncle, mom, and nephew are taking turns to be with Dad, and the advocate fills in the gaps and asks lots of questions. But yeah, it still might not be enough.

    I don't know what the answer is. Just from my Dad's case, it seems obvious that if someone at the hospital had been assigned to actually coordinate his care, a lot of time and money would have been saved.

    We went through similar problems with my son in the ER in December. At least the floor they put him on did a decent job.
  • somemomsomemom Registered User Posts: 11,102 Senior Member
    @compmom brings up a great point about meds between nursing home and hospital. FIL checked into the hospital, at the behest of the AL, we determined afterward that the hospital took his med list and gave him every single med, including the PRN meds, every time at the scheduled amount. That means that every med on the list that he might take, this one OR that one, for constipation, they gave him ALL of them, repeatedly. I cannot even express the mess and experience DH had when checking him out and discovered, the hard way, when they all hit at once. It was a tinkin' mess ;)
    That is one thing to verify, that some one did not just input the list and use them all.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 39,251 Super Moderator
    Ugh, meds are a nightmare. The ER had the dosage of one of my son's off by a factor of THREE. Thank goodness I knew what it was supposed to be. They shouldn't have to ask the mother of a grown man what his meds are. :(
  • lookingforwardlookingforward Registered User Posts: 32,367 Senior Member
    Wow, this raises an issue for all of us. I know my own record includes everything ever prescribed for me in the past 2+ years, even things I no longer take. I've noted this to them (the asst asks every time,) but no change is recorded.
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