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.
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.
I am a 'planner' person in a family of 'spontaneous' let's wait & see, no need to decide now, cross that bridge later people.
In fact, it only occurred to me very recently that while I feel less anxious when I have a plan, it appears weighing up information, making choices, gives some people (inc my family) so much stress, they avoid it all & just do nothing.
“oh the kids will figure it out for us”?
On one hand it's nice she has faith & trust in the kids... but on the other hand, it's heaping a burden on the kids.
It's possible that the LBD needs will accelerate Mom's Husband from IL, bypass AL & need MC quite quickly. Especially if falls, fractures, delirium. I wonder... She may feel guilty moving him & be *awaiting a crises* to force things to change??
Maybe have 2 continuum of care places pre-chosen on YOUR plan, ready to roll when required.
Tell her that if she becomes injured while caring for her husband that you and his children would have no option but to place him in AL while she gets better. If she has to go to rehab she may or may not be placed in the same place as her husband.
Another thought to consider...If husbands children do not think that your mom can adequately and safely care for their dad there is the slight possibility that they could try to obtain Guardianship so that they can place their dad where he will be safer. If that happens she will lose all control over what happens to him.
I finally was able to get them to redo their papers, Dad wanted me as POA so I had everything done with an Eldercare Lawyer. That was October. February of this year it hit the fan, Dad was in the hospital for a stent, UTI, kidney stones, sepsis, nosebleeds (he's on blood thinners) and finally low bp that almost caused him to faint and fall down the stairs. While he was in the hospital, my Mom, who has dementia and anxiety, fell down twice, the second time being in the bathroom flat on her back. Both were in the hospital at the same time, in rehab the same time and we, Dad and I, decided it was time to just go to AL. They are 85 and 83. Within 3 weeks the house was on the market, sold, and me and my husband are now in the process of cleaning out 50 years worth of life, what to keep, what to donate, what to scrap, what to bring to AL, what memories do they want to have there, what do they need now, taking over the paying of bills, etc. My second full time job.
I tried for years to get my parents to first think of cleaning stuff out (I have found out recently that they kept everything. Closet hoarders). That was a nope. Then a discussion about downsizing. My Dad was open to that, Mom was a huge nope. I tried for years, little by little, to work this into conversations. Mom wouldn't hear of it. But, the choice ended up being made for all of us in the form of almost disaster.
I fix things now because I can, because they are my parents and I love them. But I'm resentful and angry, too because they couldn't think or didn't want to think about making choices that may have been a little hard for them, but would have made it easier for me down the road. And those feelings are ok too. They are more than happy allowing me to do that now. So I do. But they know, since they are leaving it up to me, don't complain about how I handle it! You had your chance and you chose to do nothing. I don't have that luxury now.
If and when the time comes, just do your best, pray a lot, surround yourself with good people, and most of all, don't be afraid to ask for help! That makes all the difference in the world.
It was not nearly enough for us to really determine how to execute his will and it made DH's life miserable for quite a long time as we tried to do what he wanted.
He was divorced from MIL 14 years before he passed and SHE thought she'd inherit everything and was angry and shocked to find out she got nothing. (That's a whole other story). But at least he was clear about his decision to split everything in thirds for his kids. Beyond that, it was just a guessing game.
This was a small nightmare for about a year and then after everything was settled out--we could take a breath.
I will NOT do that to my kids. We have a will and all salient info is pretty well spelled out. We're moving soon and will then change some things in the will. But I have seen what it's like to have a 'loosey-goosey' will, or worse, none at all and what a pain it can be for the family.
Now she has dementia and is bed ridden and running out of money for her 24/7 at home care,
my father and her made MANY poor financial decisions (poor room addition to house $17k, don’t know how it passed permits ), $60k+ Kitchen remodel (the kitchen IS VERY small, maybe 4’ x 8’), mom decided to paint the outside of house $20k (heater broken but she decides to paint instead). Now she is out of money for her care and we are left scrambling for solutions. My brother told parents why didn’t you ask me about these construction jobs (that’s what he does for a living). They never fixed anything. The plumbing all bad, the electrical needs to be rewired (Been in house for 55 years). Every drawer and closet stuffed with junk.
We begged, we pleaded, but she would not listen. I wish I knew how to get a parent to listen. This has been very difficult. COVID did not help. Slowly we are getting issues resolved but it required a lawyer. Applied for Medicare twice (waiting for approval from 2nd applications). Finally got on bank accounts to pay the bills she can no longer pay herself (this took months because of some weird clause in the trust even the lawyer had never seen and she did not go to bank as requested when Trust laws in California changed to make required updates to accounts ). And I’ve paid $40k out of my pocket for her care which I hope to recoup from the estate (luckily my husband and I always had good jobs and saved our money). This has been horrible and she could be sitting pretty for her care, BUT SHE WOULD NOT LISTEN TO ADVICE.
Another thing I asked for her to move near me, but no. So I drive 4-5 hours round trip(Los Angels traffic) or my brother has to take off work to take her to doctor.
Sorry to go on for so long (there’s lots more to the story if you can believe it) but I’m not sure our parents understand the impacts to others if they are unwilling to change, and even though it is not easy or fun and it’s her fault she is in tough situation I feel it’s my duty to take care of this stuff.
And recent changes now allow for a spouse to be paid to care for the Veteran.
If it was me, and it was, as far as my ex-husband was concerned, just tell her you don't want to hear any grumbling if she doesn't like what is chosen. I used to beg him to make some plans, and he just said essentially what your mom is saying. Too, does she want her step children telling her where to live? My husband has niece who wants to put him in an inexpensive (cheap) Memory
Care place, buy me off, and take our home. All she wants is the house and she doesn't care about either him or me (I am a late in life wife). He is not there yet, he still does 4 hours of yard work every day, cooks and does the grocery shopping.
You and the rest of the family are in a different place, planning for her husband's care and her possible need for future care. Here are my suggestions:
1 - Somebody should go with to husband's/dad's appointment with the neurologist. Make sure that get diagnosis and staging of his dementia progress. Ask suggestions about what to expect in the future with a time frame in mind. Also ask about any treatments that might be helpful.
2 - Somebody needs to follow the insurance issues with Medicare and VA. The goal is to secure the most assistance for him possible without family or mom/wife having to dish out additional funds. The reality is that placement in a nursing home may be the only viable option from a financial standpoint when his care becomes too much for family to manage.
3 - Once dad/husband's diagnosis and prognosis have been updated, it might be a good idea to have a family meeting with all family members from all sides to pass along information, ask for assistance with helping dad, and talk about future plans. Obviously, mom/wife needs to have the major vote in care of her husband, but being together helps keep everybody on the same page.
The thing of it is that as long as your mom is considered competent there isn't a whole lot you can do. And with how many POA papers are written you can't step in until a diagnosis of being unable to make sound decisions is determined. Your parents have the right to live their lives as they feel fit and spend their money any way they want. Very hard, as a child watching, but, until something major hits you pretty much just need to accept and try to gracefully nudge mom into planning for future. Eventually, the what happens next will be determined if not by you but by some action or catastrophe that sets a ball in motion. You may want to suggest what mom wants to happen if that ball does go in motion. Sad, but true how this happens to so many people.
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!)
My mother is like that at 85 years old, refuses to even visit any assisted living places so if she is ever hospitalized and can't go back home, it will be a mess for us. In her case it is denial of aging .
Mine wont see a counselor but maybe yours will or a pastor and talk about the fears. Then you can step and help her feel less afraid of the unknown if she knows there are good steps that will be followed.
That is the logical way. But she may be so illogical and stubborn that she is setting you all up for a mess. Just educate yourselves about steps you can follow once the crisis day arrives.