My mom (72) currently lives independently with her husband (78). Her husband was diagnosed with Lewy body dementia several years ago, and it is progressing. Both are retired and mom is his primary caregiver.
Husband’s children are concerned about their father and are pushing for him to move to assisted living. My mom does not want to do this.
When I ask my mom if they have thought about what they would like to do in the future, she says things like “we’ll just play it by ear.” I think she is downplaying it and hiding the fact that it is overwhelming. We went through a stretch of about nine months where my mom had a string of her own medical issues (broken ankle that required two surgeries, kidney infection, gallbladder removal). My brothers and I were able to step in and handle a lot of things over that period, but care for her husband was the biggest challenge.
He cannot be left alone for extended periods, and I believe he is declining. He has an appointment with a neurologist to do another extended evaluation next week, so I am hopeful we will get some advice. Also hopeful that with a doctor’s evaluation he will be able to qualify for assistance benefits from Medicare and the VA that I have been told he does not yet qualify for,
I am concerned that my mom is not thinking about plans for their future due to overwhelm and a desire to retain her own independence. I understand both of those things, but I am very worried that something will happen and we (the kids) will be left guessing at what they want. We experienced a fair amount of this during my mom’s recent hospitalizations. For example, we knew that she likely would need to spend some time in rehab recovering from a procedure. My brother and I asked her to look at the list of approved centers and let us know what she prefers. Her response was “oh you guys can just figure that out.”
She also is quite private with financial information (again—guarding independence, I totally get that). I have suggested that she and her husband talk to their financial planner about the current situation and have them present some options for the future based on their situation.
I am having a hard time knowing how to support her since she is still capable of making decisions. I can only imagine how she is feeling watching her husband slowly fade, and feeling the weight of making these decisions largely without him. I also understand the concern his children have.
Still, they are married. It is their life, I feel weirdly responsible for fixing the situation even though I know it is not my place (working on this—it’s my issue!). How can I get her to understand the importance of planning for their own future and not just thinking “oh the kids will figure it out for us”?
"...she also is quite private with financial information" or maybe she doesn't have a grasp on it at all and it just appears she is being "private".
“oh you guys can just figure that out.” because she may be having cognitive or memory issues herself and this is her way of dealing with hit. Or, maybe she is struggling with undiagnosed depression.
If your mom is experiencing cognitive decline or depression herself (even a little) then caring for someone like her husband can indeed be very overwhelming. If you have the chance to be in her home, I'd look around to see if there are any signs of disorganization (unopened mail, pill bottles scattered, housekeeping not up to her normal standards, etc). If you see this, you may want to consider offering to take her to her next medical appointment and go with a pre-written note that you will discretely hand to the staff explaining who you are and outlining your concerns for her health and ask for a cognitive exam and check for a UTI just for good measure.
If all checks out well, then encouraging her and her husband to invest in a 2-hr consult with an elder law attorney/estate planner should be the goal. If you meet resistance then maybe you can lead the way by finding one and going yourself to do what you are suggesting they do. If she still balks, then have and "info chat" with her: "Mom, did you know that if you don't assign a Power of Attorney then no one will be able to help you manage your important everyday affairs?" "Did you know that if many people are responsible and save for their future but because of the cost of care many need to rely on Medicaid for what they need?" "Did you know that (her state's) Medicaid application has a "lookback" period that can be as long as 5 years and that it's very easy to no qualify?" Etc. You can also sit her down with your laptop and show her this very forum and the posts by desperate spouses in dire straits and exhausted adult children trying to deal with parents who didn't plan. Explain to her in a kind but firm way that you and your siblings don't really want to be the ones to "guess" what they would have wanted because this causes a lot of distress and discord at stressful times. It's not your responsibility. Did her parents do this to her? If so, did she think it was a good way to handle things? Also, it is doubly important to do very precise planning when there is a blended family. Not sure how long they've been married but it I get the impression it hasn't been long. Perhaps a meeting of all the siblings and step-sibling to get everyone on the same page and troubleshoot together, share ideas and also work on transparency, which will be very important as this journey unfolds. I wish you all the best as you try to help your mom to help herself.
It's unfortunate Mom's so close with her finances, because a crisis is not when you want to have to figure out what they can and can't afford. I think it's a bit of a generational thing, too, as my dad was the same way. I never knew how much money he made when he was working -- and still don't. When we finally convinced him and my mom to do wills and trusts when they were 85(!), the attorney finally got through to my dad that he needed to trust at least one of us kids to be informed as to their finances before we reached a crisis point. Thank goodness my dad did, because although he assumed that he'd outlive my mother and her myriad health issues, he did not. He was gone a mere three years later while Mom is still with us in spite of having heart failure, severe dementia, and major post-Covid issues.
You might try to convey to your mom that we never know what the future will bring, and both she and her husband need to have their affairs in order so both sides of the family know how best to help them when they need it.
Has Mom always been the easy going type of person? Some people are like that and deal with something when it happens. The problem I see here is the children. Her husband is not your father and he has kids. Your Mom needs to protect what is hers. She also needs to be her husbands POA not one if his kids. Mom needs to pick one for herself. It has happened on this forum where the children remove their parent (a child has POA) from the home and not consider that there are marital assets that the parents spouse is entitled to.
Medicaid allows for splitting of assets. The one needing LTC spends down their split then Medicaid is applied for. The surviving spouse stays in the home and gets a car. They will receive enough of their monthly income to be able to live. Mom needs to make plans for her future.
Explain that you are not being nosy about her finances but really need to know what the heck is going on so that you can give her good advice and point her in the right direction.
Assure her that you want her to be as independent as possible. But when things happen, and they will, it is hard to make decisions for her when you are ignorant of their situation and desires.
Tell her these things, maybe more than once.
Maybe even tell her that you are worried about her expecting you to "figure things out for us"? Wouldn't she rather make her own decisions and have her own wishes known?
My mom is very bad at making decisions. And procrastinates like crazy! BUT when she and dad were moving in with us, I said you HAVE to get your affairs in order. Wills, POA, living wills, etc. I was NOT going to tolerate not having those basic but super important documents in place.
Maybe you have a line in the sand too. I can't help you with X unless I know Y or you do Z?
If she won't cooperate, back off. Can come back and try again in 6 months. And if she wants help without giving info, could let her know that you can't really make an informed decision without more info.
the next day take them to a lawyers with all of you present to have things legalized.
She may or may not appreciate it. But it may get her started with the process if she doesn’t like it
(I know, I’ve oversimplified but it’s just to get the ball rolling now)
have they got the POA and wills etc done? That would be the very first steps.
Next would be to sit down with mom. Don't let her brush it off as "playing it by ear." Remind her of the various issues she had and how it took 9 months to resolve it all. Tell her that yes, it all got done, but it was difficult. She was on the receiving end and isn't really aware of how much effort was involved. Caring for step-dad while she was in the hospital was bad enough, but it will get worse with time. Make her understand that moving to AL will reduce what she has to do AND will allow you and the other "kids" to visit and help out in other ways. Remind her that if she's hospitalized, this is going to impact everything and needs to be addressed NOW. What medical treatments are wanted and not wanted are important and assigning POAs for that and financial doesn't mean you take over now, but rather allows someone to manage for her if she is incapacitated. If no one has POA, all they've worked for could go to hell. Having to jump in during a crisis might not even work, if no one is available to jump in! Then take her to a meeting with the atty and let the atty talk some sense into her. Most likely they have plenty of "stories" about people who didn't plan and how badly it impacted them.
In another posting, Live247 wrote this:
"A crisis is not time to plan for a crisis, it's time to put a crisis plan into action. Right?"
Tell her that's what you're looking to do - have a plan. Sure, it still means playing some "by ear", but the basis of the plan needs to be there first! With no plans, disaster will happen and with no plan they could both end up in places they'd rather not be. You don't go on vacation without a plan, and some crisis will NOT be like a "wing-it" vacation!
Also, the EC atty would know how to arrange finances, etc, should step father need facility/Medicaid care, so that she gets to keep half of the assets (at least), a car, the house and enough of his income to supplement hers if needed. Without a plan, she could lose most or all of that. She needs to stay focused and understand that too.
One can "play by ear" if one has an instrument and music sheets - without the instrument and sheets, you'll likely be able to make some sounds, but it will be more like a banshee screaming!!! The instruments would be legal documents (POAs, wills, medical preferences, etc) and instructions (the documents themselves include these!)
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