"exciting" Mom update

[niq]

I'm not sure who's new here and has missed the extremly long niq's mom saga ... but basically towards the end up the pandemic she just stopped functioning. I'm not going to get into specific details b/c that's mean, but at this point we have to cobble together something like an Independent Living -- basically have other people do the lion's share of cooking and cleaning, but she can do a little herself -- in her subsidized apartment on $1500-2000 month. Between slowly spending down her assets, her SS check, and various charities we can probably stretch everything for another decade. If she's on her own until 85 we might be in some trouble, we'd have to lower her quality of life or come up with about $500-1000/month out of pocket. Less than daycare!

The real killer here is what happens when you get to the point you need assisted living care, but don't qualify for nursing home care yet. Generally this is the point where you have difficulty completing certain daily tasks -- getting dressed, taking a bath/shower, managing your medications, getting in and out of bed, walking (the standard for "walking" is very low). "Difficulty managing finances" are a bit of a gray area. Note that "cooking" and "cleaning" are not on the list. In a normal situation, if you have average savings -- the median 65 year old has $300K net worth -- the advice is to move into an Adult Family Care. These are basically "in-home" assisted living facilities with a handful of clients. You agree to pay private pay rates (about $7000-8000/month) for a couple of years, after which Medicaid takes over and pays the bills (they pay $5000-6000 here).

We are not in a normal situation and Mom is "too healthy" for an AFC to take her anyway. The good news going forward is that WA has a demonstration program called COPES that allows people who are at the point where they need assisted living but can't afford it to stay in ther home or apartment and get some level of service. These programs vary by state, if you have family who might get into this situation I encourage you to talk to an eldercare attorney. There are all these overlapping programs with different eligibility threshholds, sometimes the different websites contradict each other. You need an attorney on the ground who knows how to actually navigate the system.

It's still unclear how much mom falling apart is physical disabilities vs unmanaged depression/mood disorders vs cognitive decline. She had an MRI and the part of her brain that forms memories has shrunk more than is normal for a 70 year old, but she still knows who her family is and she can have a conversation with you about the news (side note: cable news and politics podcasts -- conservative or liberal! -- are rotting the brains of so many old people, it's like YouTube for retirees, just kill it with fire). We went to a neurologist and other than higher than average brain matter loss for a 70 year old, everything is normal. We are basically bribing her with more time with her grandkids to get her to go to physical therapy, walk around the neighborhood, and maybe one day get to waterobics once a week. We are hoping this all gets her to actually be a bit more independent. I don't really know what realistic expectations are.

There is a social worker connected with her PCP. It's somewhat helpful. They set her up with Meals on Wheels which has been great. They tried to set her up with charities that provide transportation but it's been hit or miss. They tried to find a private pay home aide -- somebody you pay $30/hour to come over for half a day and clean, run laundry, etc. -- but there's a huge worker shortage in that industry right now. I'm sure we'll lean on them a bit more going forward.

Anyway, check on your parents, give them a hug, talk to your financial planner and theirs. Get power of attorney so they cannot bullshit you about their finances. Things feel better now than they did two months ago but it's all a lot to process. AMA?

Pom RockNVoll farmvillelover

[Pom]

niq, thank you for sharing. I am sorry about your mom's decline but it sounds like you guys have a plan to keep her safe and take good care of her. I can't tell you how terrifying all of that was for us starting out, but we made it. After FIL Pom passed away, my mom had very serious health issues ramp up and we went from caring for one to the other. We were very fortunate that our parents were all financially in good shape, but when that is not the case, having that worry on top of medical situations must feel so overwhelming. I wish you all well and hope things continue to be positive for your mom and your family.

[niq]

Pom thanks <3. I have nightmares about this slowly becoming all consuming for my entire 40s. It really sucks to be in this gray area where she can't function on her own but the whole system is like "well she can walk and take a bath so ... good luck!" So I have to hope that we can get this under control and I'm not spending like 10-15 hours every week keeping on top of her shit.

[pumpkin]

niq, I remember you posting about your mom’s financial issues a few years ago and am sorry about your mom's decline but am glad to hear that a plan is coming together.

Caring for parents can be so hard. I’ve helped some friends try to figure some things out and I keep pushing for my parents to get long term care insurance, but they are stubborn.

Your mom is very lucky to have you.

[rooster222]

I'm dealing with somewhat similar things with my grandmother. She's upper 80's and had had some health things. We put her in assisted living knowing it would quickly drain her cash and she'd have to move to skilled nursing on Medicaid. Well, after a few months she'd actually doing better so we are moving her to independent living now. Assisted living was running 5K+/month and independent will be $2200 (and she will have a gorgeous apartment). We will supplement extra help/care as needed. I live 10 min away and work part-time so a lot will fall on me. I've literally not slept/ate well in months from the worry. I'm still worried but hopeful the new arrangements will work and we won't have a medical setback.
Anyhow, this whole thing has opened my eyes to the not-so-great options for our elderly. It just breaks my heart to see some of the situations. It sounds like you've done everything you can to make your mom comfortable and safe.

[RockNVoll]

Goodness, niq, that's...so much. What a labyrinthine system to navigate. I continue to be in awe of how you take care of your mom.

Thankfully I talked my parents into setting up POA and medical directive stuff with their estate plan several years ago. I'm kind of in denial that I'll ever have to figure out all these details you're currently navigating, but I know who to come to for sympathy when the time comes if nothing else!

[chpmnk1015]

Lots of hugs.. that is so much... And so much to navigate and deal with... So sorry...

[liveintheville]

My friend is going through this right now with her mother. She’s on an assisted plan waitlist and currently has a nurse coming once a day. I couldn’t believe what it cost.
I’m so sorry you’re going through this. But you’re handling it great. I hope your mother remains as healthy as can be.

[Wallflower]

niq, I'm so sorry that you're going through this. I have an aging mother (89) and stepmother (77), my friends all have aging parents. We all seem to be going through it together but we all have such different experiences. All of them are incredibly difficult, though.

You're doing a GREAT job taking care of your Mom. Don't let yourself forget that, as you struggle with all of this.

Hugs!

[midwestmama]

niq, thanks for sharing all of that information and I'm sorry you're going through this. You're doing a great job with everything you're doing for your mom. I hope with how you're helping your mom now that she's able to stay healthy for longer.

I'm expecting that DH and his sister will have to navigate a similar situation with MIL (their mom) within the next few years. MIL had a 3rd back surgery around Christmas 2020 (she slipped on stairs to the laundry room in her apartment building and fell right on her tailbone), then had an appendectomy last month and then ended up having complications from that surgery, and has mental illness plus cognitive decline. (Although I'm not sure if the cognitive decline is a side effect of all the medications she's on.)

Recently, she completely mixed up the game times for DD and DS, but blamed DH for giving her the wrong times. (He showed me the text that he had sent her with the correct times.) I offered to drive her to DD's next game, to which she said she'd like that and would have gotten lost trying to get to the town the game was in, and then mentioned she used to go to that town all the time to make sales calls.

The challenge with MIL is that she thinks she's perfectly fine and doesn't need to make any changes, and anything that goes wrong is usually someone else's fault. (DH and SIL have suggested to MIL that at a minimum, she look at moving into an apartment complex for seniors, but she thinks she too young to do that (she'll be 64 in a few weeks).) I'm just worried that it will get to a "hit the fan" situation, but hopefully we'll be able to find some help to bridge the gap until she can get into whatever living situation is needed at that point. (And SIL lives a thousand miles away, so much of the work to figure it out will fall to DH and me.)

I'm just thankful that my parents (both 74) are still healthy and fully capable of living independently, and hopefully they stay that way for a while. (Their parents, my grandparents, were all capable of safely living independently into their 80s.)

[Deleted]

My parents are 79 and I’m dreading the inevitable you shouldn’t drive anymore conversation. They are still very active for their ages and like to be out and about. It will kill them. They don’t know how to use smartphones (and not sure they can learn at this point, they were never on computers in their lines of work) so I don’t think Uber is an option. It’s not yet, but I imagine it’s relatively soon.

I am very lucky though they are still in good health and are very financially savvy.

[Deleted]

[mention]niq [/mention] thanks for sharing. We’ve run into a few similar situations with extended family (an uncle who had a stroke, my BIL’s brother who is blind and has severe depression) that makes it very clear to me that the system in our country is horribly broken. There are few good options for adults who need care, it’s all obscenely expensive, and navigating the “system” (if it’s even cohesive enough to refer to as a system) is draining and complicated. And at every turn there is an opportunity for scam and elder abuse.

It sounds like you have a decent plan in place.

[minzy]

Props to you and msniq for your continued work and patience with this - I remember your years-long effort trying to get your mom’s initial round of housing figured out. Your mom is lucky to have you guys looking out for her. And as a former MOW driver, I’m glad to hear that is working out for her, too.

My friend and I were talking just today about that squish of caring for parents and kids simultaneously. She’s got it worse than I do on both ends by far right now, yet I also worry about the what-ifs/when ifs with my dad. He and my stepmother recently mostly moved from my childhood home, so my sister and I asked him what the plan was for the original property… and all the stuff on it, of which there is a lot. (He has told us repeatedly that he wants us to have it and his will states as much, his wife wants nothing to do with it.) He refuses to think about ever truly 100% leaving there and somewhat angrily told us “there is no plan.” My sis and I both feel a little anticipatory resentment that he is going to shoulder us, both long distance with our own incredibly busy lives, with this huge headache someday because he’s too lazy/old/out of shape to clean it up now. So not only someday will we grieve him, we will also grieve the burden he’s leaving us. Oh well? I am trying to focus on being grateful that I was able to see him recently and that my sister had some legit quality time with him this past week while it’s still an option.

Sometimes it kind of sucks looking around and realizing you’re the most capable adult in the room. 😕

[minzy]

I read this in the Washington Post today… about the struggle for getting home care help. It’s a problem for thousands and thousands of families in Maryland alone. 😕
www.washingtonpost.com/local/maryland-covid-medicaid-waitlist/2021/10/07/37dfc41e-2214-11ec-b3d6-8cdebe60d3e2_story.html

[simpsongal]

I’m glad you’re in a better place after so much work. You’re a great son. I really need to get ahead of these issues with my mom while she’s healthy.

[idahome]

You’re managing a lot right now niq; thanks for sharing.

My parents live with us and have for the last 4-4 years. Since they’ve moved in it’s been watching a fairly steady decline and I honestly don’t know what to do to help them and save my sanity. It’s hard when you’re parents have no savings and are living off of Social Security/Disability payments - no retirement, no pension.

I hope you’re able to leverage outside services to help you continue managing her care moving forward.