How can we avoid getting 'left behind' as the surviving spouse if dementia sets in?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Where did all your money go if you don't have children?

We have savings and investments. We also own a small house we rent out, and we have another property we use for vacations.

I know we could sell, but still ...
I know how much MIL pays monthly for her private and live-in aides and it's eye wateringly expensive.
DH and his siblings want her to age in place and die at home.

Sounds like you are very comfortable so screaming poverty is strange. The biggest issue is who will manage your care.

OP here. I know we are comfortable but even so, I get worried about running out of money when we're old and in need of care.

Everything has gotten so expensive because of inflation.

MIL pays between 12k and 13k per month for private aides including live-in.

And then there's the cost of renovation work to adapt her bathrooms, a stairlift, etc.

Yes, who will manage our care is the biggest issue for the remaining spouse, whether it's him or me - without being taken advantage of.

Childfree elderly living on their own, especially if they have dementia, are very vulnerable.

It is no better with kids sometimes. I have a sibling who barely visited until dad started declining. Now she visits often and has for years. She has tapped into the money well convincing mom to pay for a variety of expenses and convinced her I am the crazy one for being concerned about cognitive health. Let me tell you when you are raising your own kids and have your own serious health issue, you don't have the time and energy to take legal action against relatives who are showering mom with attention to profit. My mother is paranoid and is convinced that I am the bad one. I am not taking handouts from her,but I am the evil one. After years of bat shit crazy behavior, I have not an ounce of reserve for anyone else but the family I created.

So believe me family could easily take advantage. Those stories are a dime a dozen. Be grateful you have money. You can hire a team-accountant/social worker/lawyer and have a checks and balances system.

I have kids and know the reality is my husband and I have to plan the best we can and just pray we die peacefully long before dementia sets in.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Where did all your money go if you don't have children?

We have savings and investments. We also own a small house we rent out, and we have another property we use for vacations.

I know we could sell, but still ...
I know how much MIL pays monthly for her private and live-in aides and it's eye wateringly expensive.
DH and his siblings want her to age in place and die at home.

Won’t DH inherit from her then pass it to you?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Where did all your money go if you don't have children?

We have savings and investments. We also own a small house we rent out, and we have another property we use for vacations.

I know we could sell, but still ...
I know how much MIL pays monthly for her private and live-in aides and it's eye wateringly expensive.
DH and his siblings want her to age in place and die at home.

Sounds like you are very comfortable so screaming poverty is strange. The biggest issue is who will manage your care.

OP here. I know we are comfortable but even so, I get worried about running out of money when we're old and in need of care.

Everything has gotten so expensive because of inflation.

MIL pays between 12k and 13k per month for private aides including live-in.

And then there's the cost of renovation work to adapt her bathrooms, a stairlift, etc.

Yes, who will manage our care is the biggest issue for the remaining spouse, whether it's him or me - without being taken advantage of.

Childfree elderly living on their own, especially if they have dementia, are very vulnerable.

$12-$13k a month is astonishingly cheap!! Is she in the us? That’s like $18 an hour. I can’t even find a nice level I care in a continuing care place for that little.

[Anonymous]

You should buy long term care insurance. It is exactly to cover the situation you fear. Hurry up though. The price goes up as you age.

[Anonymous]

The continuing care community is the best way I can think of to guarantee the remaining spouse will not get "left behind" and have care close at hand. Otherwise the remaining spouse will be at the mercy of relatives that will do the best they can(or are willing to do) but have their own lives to take care of. If you don't die first of illness or injury you will end up in a nursing home not of your choosing and on long term care medicaid. The long term care patients I had in the nursing home were the ones with little to no family.

[Anonymous]

Yes, OP, I understand exactly how you feel. Some posters on here are little too cavalier about the realities of old age.

You can make (younger!) friends who might help you with little things, and befriend your neighbors so they call a county social worker if they see you in difficulty, but the reality is that very few loved ones can take in an elderly person, especially one with aggressive dementia.

There are services accessible to those who can't pay for private nursing homes. Medicare homes. Some are fine, some are bad. But you'll need someone to help navigate the system for you. If you are alone in the world, then the state will make decisions for you, but it will take longer, the care won't be as good, and that's not the best option. However, it's the only option for many, many, people.

Perhaps moving in with your husband into a continuing care community with give you those first contacts who will keep an eye on your decline and guide your next steps.

[Anonymous]

I live in Canada, where I can access medical aid in dying in the earlier stages of Alzheimer's, so with competency. I download the SAGE test from the University of Ohio and take that every year. If I slip I will apply and then leave this world as a full human being and not experience mid stage or late stage dementia. We qualify for pretty much anything now, strokes, etc.

If I lived in the US I would book the "business class to Zurich," and access it there. I would not pay for memory "care" or continuing care etc. I will leave my savings and house to a friend's daughter who is in a low paying field and will be poor in her old age. There's better things to do with money than waste it on care because you're afraid to face the future head on.

[Anonymous]

I found this article shocking. This is what I’d be worried about, and taking steps to prevent, if I was the OP.

https://wapo.st/3MsheUE

[Anonymous]

Anonymous wrote:I live in Canada, where I can access medical aid in dying in the earlier stages of Alzheimer's, so with competency. I download the SAGE test from the University of Ohio and take that every year. If I slip I will apply and then leave this world as a full human being and not experience mid stage or late stage dementia. We qualify for pretty much anything now, strokes, etc.

If I lived in the US I would book the "business class to Zurich," and access it there. I would not pay for memory "care" or continuing care etc. I will leave my savings and house to a friend's daughter who is in a low paying field and will be poor in her old age. There's better things to do with money than waste it on care because you're afraid to face the future head on.

Not OP, but I envy you. Makes me want to retire to Canada. I refuse to inflict the amount of emotional damage and trauma we have endured from rage filled aging parents with endless emergencies. I can't image in is any fun being trapped in a body where al you want to do is destroy your own children and lash out at people.

[Anonymous]

My DH is genetically prone to relatively early dementia. We are working on a plan for financial divorce while he is still competent with me retaining medical POA. He has been very explicit in saying that he wants to go to a low-cost place once he does not know what is going on- in his family people lose their memory and language very quickly but their bodies are healthy for decades.

For a while he was pretty hellbent on a scheme to make sure he could do assisted suicide before it was really bad, but I think the timing of onset vs. decline makes that really tough to pull off legally.

[Anonymous]

Start setting up deeper friendships now.

[Anonymous]

Join a church or some other religious group now.

[Anonymous]

I don't really see the problem, OP. So you can't afford round-the-clock care in your own home -- as others have said, look into moving into a continuing care community, which you will need to do while you're both healthy enough to be in the independent living part. It's less expensive overall than hiring round-the-clock care, plus it's a community so you get the benefits of that, too.

Otherwise, I'd say both of you should still be working (I don't remember from your OP whether either of you is retired), not only to continue to save money (and delay starting to take Social Security payouts) but also to keep your minds healthy and engaged. Eat well and prioritize exercise.

Absolutely make sure you each have all your affairs in order now -- wills (preferably, trusts actually so surviving spouse doesn't have to go through probate), healthcare power of attorney, regular power of attorney, and a well-thought-out list of medical interventions you're willing to accept or not accept (and a realistic view of what, say, CPR or ventilation really means for a senior citizen). Be sure both of you are fully in the know about all financials, both names are on all retirement accounts, deeds, etc. Keep in mind that it doesn't take dementia -- either of you could get hit by a car tomorrow and be faced with the same dilemmas dementia poses.

[Anonymous]

Anonymous wrote:Start setting up deeper friendships now.

Sure make friendships for your mental health and brain health and for quality of life, but you should not "make friends" because you need favors. My parents had plenty of long term close friends for decades and if you become combative they fade. Now they may give you a wake up call first by either expressing concern that you have changed or telling you where to shove your attitude and rudeness, but the problem is with dementia you can often lack self-awareness so with my mother for example it is always, always the other person must be totally crazy.Now before my mom's decline she had an older friend who just became sweeter and more childlike and mom and others didn't visit because it was "too upsetting."

So my point is you develop the abusive type of dementia you should not even want someone to endure abuse to get you properly placed-be it a child or friend because it is extremely damaging and the abuse usually goes on for years before you comply. The most you can hope for is a neighbor to call APS and for APS to actually act. We all need to either consider continued care or other options if abusive dementia is a real possibility.

[Anonymous]

Anonymous wrote:
Yes, OP, I understand exactly how you feel. Some posters on here are little too cavalier about the realities of old age.

You can make (younger!) friends who might help you with little things, and befriend your neighbors so they call a county social worker if they see you in difficulty, but the reality is that very few loved ones can take in an elderly person, especially one with aggressive dementia.

There are services accessible to those who can't pay for private nursing homes. Medicare homes. Some are fine, some are bad. But you'll need someone to help navigate the system for you. If you are alone in the world, then the state will make decisions for you, but it will take longer, the care won't be as good, and that's not the best option. However, it's the only option for many, many, people.

Perhaps moving in with your husband into a continuing care community with give you those first contacts who will keep an eye on your decline and guide your next steps.

What are Medicare homes?