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”?

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"...she is still capable of making decisions" or is she?

"...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.
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Reply to Geaton777
Beatty Jun 10, 2021
Geaton, oh please can I book you to come explain all that to my folks too 😣
Older people -- even the most cognizant ones -- have a really, really hard time making decisions, and while you can respect their independence, you should make decisions with them side-by-side if at all possible rather than presenting multiple things for your mom to choose from.

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.
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Reply to MJ1929

She's practicing classic avoidance of the situation which is pretty typical. We all avoid things we don't want to deal with. Since her long-term strategy is "Oh, the kids will figure that out", I'd try to take advantage of that by saying "Of course we will mom but I'll need to have the tools available to do that. If we get all the paperwork in place now we'll be able to take care of it later when we need to." Then make an appointment for them to visit with the attorney along with the person(s) they are designating as the POA to update all the POA's, HCPOA's, advanced directives, etc. followed by an appointment with the financial planner. By using professionals, not family members to provide the guidance they may feel more in control. During these appointments have the POA be quiet and just listen and let your parents feel in charge. We managed to get my parents to do this after telling them that WE were getting all of our affairs in order and already had an appointment with the lawyer and they could just piggy-back on our appointment. It was a God-send when my father started needing more help and care but we didn't need it for about 15 years after all the paperwork was signed. Also, my dad introduced me to his financial planner even while he was totally in control of his finances. It has really helped now that I'm responsible for his accounts because the financial planner and I can make decisions on what "my father would want." He still likes to feel like he's in charge even though he's not making the decisions.
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Reply to jkm999

I am 72 and so far neither my DH, 74, and I have any big health problems. I also don't consider us in age decline.

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.
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Reply to JoAnn29

Sounds like assisted living could be a good fit for him. Obviously the decline will just continue. Or at least get some in home help so that she can have a break.

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.
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Reply to againx100

She wants you to figure it out; have a big family conference with his children and figure it out.
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.
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Reply to Karen51

Are you POA? Make sure all of their paperwork is in order, while your mother can still sign legal papers, hopefully it is done for her husband. If they have assets, you'll probably need an attorney, it will be complicated with children on both sides. Usually couples make each other POA with a second level of POA if needed. She and her husband need to set up power of attorney for medical and financial matters, a living will with their medical directives, many financial institutions (banks, etc.) have their own POA forms, and you need to be on record with social security and Medicare to be able to speak on her/their behalf. It's more complicated because you may be the POA for your mother, and somebody else for her husband, if your mother can no longer make decisions for him. Your mother's and her husband's options will depend on what they can afford. Can you have caregivers come in to help with caring for your mother's husband to give your mother a break? If you do this, have her lock up valuables and financial papers. There are senior facilities that provide care until end of life with independent living, assisted living, memory care and skilled nursing all in the same facility. Where my mother lives, one couple started in independent living and then the husband moved to memory care and then to skilled nursing while the wife remained in independent living. She was able to visit him daily. Something like this might be more tolerable for your mother. Express your concerns to your mother about how you'd like to know what her preferences are if his condition declines and she is no longer able to care for her husband. I'm guessing that she may not know what she wants, and you may just have to be there to pick up the pieces, when needed.
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Reply to NancyIS

The answer below is very informative and correct. Obviously mom refuses to plan so make it easier on you by trying to get the ball rolling. Maybe she is overwhelmed and in denial.

My mom thought daddy would get better up intil the moment he passed.

My parents refused to plan anything and were fiscally irresponsible. Three years ago they moved here and their health declined. Dad passed a year ago and now
there is very little money left. I am grateful sister and I think the same and have split the duties, POA's and everything.
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Reply to InFamilyService

When I read things like this, I am infuriated. I firmly believe every single adult, young or old, no matter what their situation is, should have the common sense and just plain kindness to discuss with their families what their wishes are if something happens. And it should be forced on everyone that THEY MUST HAVE THEIR AFFAIRS IN ORDER AND UP TO DATE AT ALL TIMES. And review and update at the minimum of once a year. I have done this since my 20's and I will be 88. I am l00% current and up to date always. If you cannot make your mother see the light of day, she should be informed that as a result of her "non-input", effectively immediately THE FAMILY WILL MAKE WHATEVER DECISION AND ACTION NEEDS TO BE TAKEN - NOW. If you feel he should be in a facility to lessen her burdens, so be it. And plan for her too - she is not going to tell you - now or ever. Consider yourselves the new bosses now. She is being very selfish.
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Reply to Riley2166

Imho, your mother's ideology of "we'll just play it by ear" and "oh, you guys can just figure that out" is insensitive, at best. This is oftentimes all too common for elders to not plan for their aged selves.
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Reply to Llamalover47

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