Ask the grumpies: What are your parents’ long term care/end of life plans?

First Gen American asks:

Do your parents have plans? Will you be helping with their care, why or why not?

#1:  My parents… they have a lot of money saved.  We probably won’t have to help them monetarily because likely their money will get them into a nice nursing home and Medicaid can take over when it runs out.  They’re both still living at home and seem active, though my father obviously has some kind of dementia and my mother is in denial about it.  When my grandma got Alzheimer’s my mom swore she would get herself into one of those communities where you live in an apartment on your own and are guaranteed to gradually transition to nursing care (my grandma was too far gone to get into the one in our town, so she ended up living with one of my mom’s younger brothers since after my sister went to college my parents had nobody able to lift my grandma anymore).  But unless my father dies first, I don’t think that’s going to happen.

My in-laws do not have plans.  My MIL definitely wants to be allowed to die if she ends up with dementia.  She’s got all sorts of “DNR” stuff signed.  She did not enjoy taking care of her mother and does not want to go through that herself or put her children through that.  We’re not sure about my FIL.  If they need help we will work together with DH’s siblings (probably us dealing with the money stuff and some set of them being boots on the ground since they live in the same state and we make more money) to figure out what needs to be done.  It’s likely they would move the debilitated family member to a care facility closer to them like my MIL moved her mother.

#2:  No, and possibly.  Parents are still in pretty good shape.  MIL may need help sooner and FIL passed away early and unexpectedly.



28 Responses to “Ask the grumpies: What are your parents’ long term care/end of life plans?”

  1. Bev Says:

    A cautionary tale: My mom was an RN working on a cancer treatment floor until she retired. She knew the horrors of chemo and radiation and therefore made sure to sign a document very clearly stating what kinds of treatment she would and would not want to receive in her last days. Then she put the document…someplace…and after she developed dementia, she forgot about it. She ended up going through some treatments she had explicitly wanted to avoid, but then we found the document detailing her wishes and we were able to fulfill her end-of-life plans. I guess the lesson here is that whatever your parents’ plans, they need to communicate them clearly to their offspring, or at least let them know know where the important documents are kept.

    • nicoleandmaggie Says:

      MIL has communicated VERY clearly! As the oldest, DH even got a special phone call after she signed things. (Plus I think they’re with her primary care physician… ours are with our lawyer, though mine just say “whatever you think best” because I’m unfair to DH.)

  2. delagar Says:

    “…though my father obviously has some kind of dementia and my mother is in denial about it.” This was the situation with my parents. My mother covered for my father very successfully; we didn’t know how far advanced his Alzheimer’s was until she died.

    He knew it was coming, I think — he and my mother both signed DNRs, and he put all their money into a family trust, which has so far been able to cover all the expenses.

  3. Alice Says:

    My mom is past plans and into actuality. Financially, she’s in good shape, but she’s using her resources and they can’t last forever. Physically and quality of life, though: not great.

    Before her stroke, her plan was to not say “yes” to extraordinary measures. She initiated really clear conversations with all of her kids and had written paperwork to back up her plans. She wanted it to be easier for us to make her desires known if she couldn’t communicate them herself. She didn’t want to survive into extreme infirmity, and she didn’t want modern medicine to put her into a place where that was her only choice.

    But when she had her stroke and at each decision point afterwards, when doctors and other healthcare providers have asked her what she wanted to do, she has consistently said “yes” to what they told her was the care she needed. I think that this is partially because of the stroke itself– her if-then thinking was damaged, and I don’t think she has the ability to mentally go down the line very far. She was competent enough to agree to treatments and surgeries, but I think not really able to truly assess and understand the longer implications of what she was agreeing to. I also think it’s partially because when a doctor is saying, “you will die sooner unless you say yes (to a surgery, to a medication, to a machine, to a hospitalization)” it’s not a light thing to reject what they want you to do.

    And the healthcare providers were right about her yeses resulting in lifesaving care: she is still alive. She even has a pacemaker to keep her going. The heartbreak is that she has yessed her way into exactly the life she said she didn’t want. She is in constant pain. She spends her days in a wheelchair and needs assistance with everything, including toileting and feeding. She cannot follow a television show’s storyline because shows require a duration of concentration her brain cannot do–for years, her brain has tapped out at about 8-10 minutes. She has recently been diagnosed with dementia, which is bringing additional problems. I do genuinely think that there are good things in her life– she’s survived to see marriages and births among her children. She’s received a lot of love, support, and care. She still tries to engage. It’s just not at all the life she wanted or planned.

    Do parents’ plans matter? I guess it’s good when they aren’t approaching the future with their eyes shut. I think my mom’s financial preparedness has helped her life be more comfortable. I think having kids who step in has made an enormous difference, too. But I think that when reality kicks in, plans sometimes go out the window.

  4. CG Says:

    DH and I have both lost our dads young and unexpectedly to cancer in the last five years. Both our moms are in good shape physically and financially. I don’t actually know what their end-of-life wishes are and this post is reminding me that we should find out. I know my mom has a living will somewhere and I have medical power of attorney should we need it.

  5. KGC Says:

    My parents are the best planners I have ever met. They are financially secure and will not need monetary help as they age.

    They have a ‘red book’ (literally a red binder) that they keep stocked with everything that I (only child) will need when one or both of them die. It contains info about their accounts, inheritance, power of attorney, end of life wishes, where to find all their legal documents, pre-written notes for obituaries (I’m not kidding), and anything else that I would need to sort out their affairs. They are not expecting (nor interested?) in me taking care of them and have solid plans to be placed in some sort of assisted living. They have also both written ‘lay explanations’ and emailed them to the entire family of their end-of-life wishes, in addition to the more official advanced directives documents. Their goal is to make their end of life as easy on me as possible, which I very much appreciate though hope not to have to actually experience for many years. They are both 74 and in excellent health now. Honestly, every older person should take a page out of their (literal) book and prepare like they have!

    My in-laws are the exact opposite of everything I’ve written above, so…that will be interesting. I would say that my spouse and his sister will deal with it all but realistically it will be my spouse (the legal stuff) and me (the medical stuff).

  6. Steph Says:

    My parents do not have a plan, AFAIK, though they do have a will. Somewhere I have a note from my Dad telling me where to find an envelope when he passes. They’re still in good enough health that we won’t need to worry about it for at least 5-10 years, if not longer.

    I do know, from my grandparents’ experience, that there are different kinds of DNRs that apply in the hospital vs. if EMTs come to your house. They had the wrong kind for my grandfather, and he was transported to the ER (and passed there) despite not wanting to be. My grandmother was traumatized by this, and now keeps her correct DNR on the fridge.

  7. Bonnie Anne Says:

    My two cents from a Mom who didn’t have much: if you ever reach a point where you or a spouse says “We’ll get help when it gets bad” then it’s already bad and will likely get much, much worse. With so many people affected by long COVID, the shortage of assisted living, memory care, and long term nursing home type care will be exacerbated. Suggest looking at facilities NOW… touring them, looking at their contracts for long term care /assisted living as well as memory care. If a person runs out of private funds to pay for care — basically, they outlive their money — facilities have been known to evict those elders when the facility doesn’t take Medicaid assignment. It’s a horrible practice and forces the family (or social worker) to do a mad scramble for services. If they can’t the option is for the family to pay out of pocket at a rate that’s typically much higher than the contract. There isn’t much protection for an elderly person in this situation.

    • nicoleandmaggie Says:

      That was my mom’s conclusion from my grandma even pre long Covid, but when it comes to my father, she’s in denial.

      • CG Says:

        Perhaps you could do an ask the grumpies about strategies to make good decisions as one gets older. It seems like many of my friends and acquaintances are looking at their parents’ decision-making and saying wtf, at least for some things (gray divorces that truly leave no party better off, questionable relationships, ill-advised real estate purchases, wacky politics). How do you put guardrails in place? I feel like someone needs to tie me to the mast when I’m old and make me listen to my children’s advice.

      • nicoleandmaggie Says:

        We don’t have answers but we can certainly pose the question to grumpy nation.

  8. Omdg Says:

    My mother has dementia and is impaired enough she can’t live by herself, but does not yet need a nursing home. My father refuses to plan. If my mother dies first my father’s plan is to expire at home and to have his rotting body discovered by someone (the police?) a week or so later. If he expires first hopefully there is enough money to pay for some kind of care because there is no way we could accommodate her living with us. Also she is really difficult to be around. I live 1000 miles away, and have no intention of moving closer or visiting more often. I’m sorry this probably sounds horribly morbid and cynical, but their (primarily my father’s) refusal to do any sort of estate planning aside from to fiddle-f*ck around with his “business” that makes $200 per year drives me absolutely bonkers. Fortunately I believe the both have advance directives so if they get very sick hopefully those will help.

  9. First Gen American Says:

    My mom passed away a week ago. She lived with us for the last 10 years of her life. I cared for her in some way most of my adult life. The last year of her life was very very hard. I did not get a full night’s sleep for months and it started to impact my health and my work. That being said, now that it’s over, I can say it was worth it and am proud to have honored her wishes to pass peacefully at home on her terms.

    Most adults don’t plan on losing their independence ever and that’s a very poor plan as the odds of the end of life really unfolding that way is very unlikely. I need to do what KGCs parents did as I don’t want one of my kids to put their lives on hold for years. I’m really thankful my mom agreed to move closer to us and eventually live with us as that made caring for her easier, so thank god she was flexible.

  10. First Gen American Says:

    Oh and a scary statistic I read recently as I was neck deep in this. 70% of caregivers predecease their loved ones if the caregiver is over 70. The study cited mainly that the caregiver ignored their their own health issues in favor of the caring needs of the loved one.

  11. undine Says:

    My parents refused to plan, and, after my father died & it became clear that my mother was slipping into dementia, she also refused to go into assisted living (aka “the home”) or sign a POA and kept financial control until nearly the end. We took turns caretaking, got home health aides when available (mostly not available), went to the hospital numerous times, etc. We finally found the DNR health directive, and after finally getting someone at the hospital to look at it one of the times, they took it seriously and she went on home hospice care and passed away peacefully at home–one minute saying “no” to a second cup of coffee, and the next she was gone.

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