HELP: How do I get my adult kids to talk about if I get dementia?

[Sheri99]

I've raised four - two men, two women. They are 31, 37, 39, 48 now. They have lives of their own; I divorced their father after 29 years and I remarried three years later.

My new DH of ten years and I are both about to turn 70. We have been married 10 years. We have a trust set up for property, but we need input from all the kids as to what they envision if either of us needs help managing the other should either of us get dementia.

We do not presently live near either child, they all live in different states here in the US and are managing their own lives and families well.

I don't want to impose, but I feel a need to get some idea of if they want to be involved as I age. I don't think my DH has the ability to manage my medical needs should I be stricken with dementia or a stroke. And I strongly do not want institutional care: ever, but I do not want to burden anyone.

My DH is retired and has long term care available should he become unable for me to manage, so if he does need dementia care in a facility or at home, and I am unable to handle him, I have a plan for him.

I on the other hand have no such benefit for long term care should I become debilitated in later life and want to figure out a plan, so I can relax about it and all the kids know what the game plan is for dear Mom. I don't want to wait until a disaster strikes, or I begin to go downhill.

Both my DHs parents had different types of dementia. His father had Alzheimer type, died at 86, his mother had lack of brain blood flow type dementia and died at 92 in a nursing home, long term care facility.

I don't want to be put into a nursing facility. I have brought the subject up to eldest DD but she rolled her eyes and rather blew me off.

If I were your parent how should I approach you to discuss and create and aging care plan (if needed)?

I am, as I said, 70 next year, very healthy, exercise daily, don't drink or smoke, weigh what I weighed at 16, was into sports (track and field) in high school. My Dad lived to 82 (drank and smoked), and his parents lived to 98 and 99. My mother began smoking at 16, died of COPD/emphysema at age 72 due to her smoking; otherwise she was healthy and at a good weight when she died.

How do I approach my grown kids, they all live in different states and we, all of us, never get together all at once. I do not want to be kept alive if I have dementia; no heroic measures.

Help/suggestions? Am I being unreasonable to want their input to help me plan this issue?

Hi I’m kind of going through a little bit of this as my Dad has just been diagnosed with early onset Alzheimer’s.

One thing that stood out from your post was “I don’t want to be put into a nursing facility”. What do you want? What about if you need care at some point? In your situation I think I’d recommend writing a living will.

I don't quite understand what you want.

(Disclaimer I am in the U.K. and I imagine the systems are somewhat different).

You say you don't want institutional care/a nursing home at any point.

In which case either your DH cares for you, one or more of your kids cares for you or you pay hideous amounts of money for 24/7 carers.

You say you don't want/your DH can't care for you, so either you pay lots of money or you want one of your kids to say they will move near you with their families and give up their job to look after you.

If you are trying to get one (or more) of your kids to say they will care for you for free if you get ill then yes they probably will blow you off.

In the U.K. it would normally be expected that the husband does it. Why can't/won't your DH?

If you get dementia you will probably need to be cared for eventually in a care home. It's not fair to tell kids that you don't want that as it puts severe pressure on them to care for you. This is putting them in an impossible situation as they have their own lives. My Mil was very healthy physically but got dementia. Due to a good heart she lived for years but in a care home as no family member could care full time for her. They visited regularly and felt bad but it was necessary as they were all working, with families.
I have told my dc that they are not to feel guilty if l need to go in a care home as l don't want to be a burden. My own dm was very stoic about this too. As it happened we took care of her but she made it clear that she would go without a fight. Having that freedom made it easier for us.
We are in the process of setting up power of attorney where dc as a bunch of three will make the decision.

Surely if you don’t want to go into a care home you would employ carers that come to your home instead?

I think you should be able to sort this out yourself without expecting your children to do it for you. You say your dh has a plan in place but you do not - why is that?

It's totally unrealistic to hope not to require specialist 24 hour care if dementia becomes advanced, sadly.

If you get advanced dementia, then you need a care home, really. Very few people would take on that level of care.

Care homes have professional people who are trained in dementia.
You cannot expect your children to be able to do that.

For me, I have explicitly told my children that they can arrange residential care for me. I will not guilt trip them.

Sorry that it's not what you want but I don't really know what you expect?

Don’t sweat the stuff you can’t control. You can write a living will; get the US equivalent of a power of attorney; plan financially etc. But you can’t guarantee you won’t end up in a care home. Just chat to your children and trust that they will do their best for you, which may include choosing a nice care home. There are some really good care homes. And, for advanced dementia, they are often the best place and if it’s really bad, you’ll be safest there. I understand the fear, I really do, but none of us know what the future holds. I am determined to enjoy my life, now, just in case!

Agree with PPs.

Many adult DC would be unwilling to provide regular help/care, live with or provide personal care to a parent. I don’t think I would be and wouldn’t want my DC to for me or DH either.

It is better to have difficult conversations about it, but if that’s not possible would plan on the basis of going into care.

‘I strongly do not want institutional care: ever, but I do not want to burden anyone’

these wants are in conflict.

it sounds like you would prefer to have care from your DC, which probably isn’t realistic.

You need to be realistic. Either you make a plan for euthanasia or you find a care plan/home you are happy with.

It is unreasonable to expect your DC to care for you and the fact that they have blown you off/not offered means they don't want to do it.

You will absolutely be a burden if you guilt your DC into providing care. There are trained professionals for a reason. You could become aggressive, incontinent etc. You could constantly wander off.

It would massively hinder their lives to provide that level of care.

You can say I don't want x y z all you like but realistically, if you get dementia or another illness that requires you to need full time carers, then there really is no other option.
24 hour care at home would go through your savings in no time.
My own mum says this a lot. I just nod. My sisters always respond with we would never put you in one of those places But, none of us can predict the future!

So you refuse to go into a care home so one of your children will be forced to care for you?

That is not fair on them at all, if they chose without being guilt trpped fine

Speak with the docs and try to make a realistic plan to go it alone, with medication, when I can no longer take care of myself.

but with dementia that wouldn’t work, because at the point when you can no longer do it alone then you no longer have the capacity or ability to kill yourself.

so, you either commit suicide upon diagnosis or you accept that, at the point you will need institutional care, you won’t know about it anyway.

OP one of the awful things about alzheimer's is the patient doesn't recognise there is anything wrong because they don't remember the issues so each problem is seen as a one off. It's really common to be like my mum who, 4 years after diagnosis is still at home living "independently" while her children run themselves ragged enabling it. My mum thinks she runs her finances but in reality hasn't paid a bill herself for nearly 2 years. She thinks she manages fine at home but we've had to arrange a cleaner and someone to make sure she has remembered to get up in the morning. Maintenance only happens when I soot something and organise for it to be sorted. But if you suggest she isn't well/coping she is horrified at the suggestion because in her head she does sll this stuff. Do you really think that someone with that condition is always going to recognise it and be able to make a decision to end their life even if that was always their plan?
I suggest you go on the elderly parents board (in other stuff) and see the awful reality that your refusal to face reality would impose on your children.

OP you are forgetting that yes, whilst abuse does happens in older people services (as it does other services too), the vast majority of people work in these careers because they want individuals to live an independent life for as long as possible and will do all they can to care for individuals until their end of life.

You either accept that an assisted living facility may have to be part of your plan, have your husband care for you or convince one of your children to let you move in with them or they with you. I don't see any other feasible option.

I have told my 3 children to put me in a home. I do not expect any of them to give up their careers / lives to look after someone with dementia. That’s a big ask, and could go on for years. One of your DC might be willing to look after you, but discussing a hypothetical situation gets hypothetical answers. Even if they agreed now, they may change their minds when they see how hard it is. The reality of us is that most of us don’t know what our future would be in that respect. I don’t think children owe it to their children to care for them in old age. If they want to it, great. If not, there’s no other choice but to go into residential care.

You’re being incredibly unfair OP. You’re basically wanting to guilt one of your children into sacrificing maybe 15/20 years of their lives to be a nurse. Let me guess, it would also be one of the female children.

As others have said you hate three choices. You guilt a child into sacrificing years of their life, you pay for round the clock carers or you live in a nursing home.

my mum has vascular dementia. This time last year she was forgetful but fine. Now she can’t name her children and doesn’t know what happened three hours ago. Console yourself with the fact that you won’t know.

Good on you for thinking about this - having a plan is much better than not having one.

You seem to be framing it as 'I don't want this and this won't work - what might your plan for me be?' Which does appear to have an element of expectation on your children.

I think you need to frame it as 'this is what I want'. And that want needs to be a plan that doesn't expect anything of anyone they haven't offered.

And sadly, that is where your problem is because realistically that will mean care by people you don't know.

But if you discuss with your children who , how and when they or you may choose that care, you can probably open the conversation.

Of course it may be that one or more may offer something - for you to move so someone can visit more often, or something. And then you can work round that.

But you need to spell out in your own mind 'this is what I want that my own resources can get me'.

Op , my mil was told by adult services, that she had to put her mum in a care home . She was turning on the cooker and not lighting the gas . If she has lived with mil , she couldn’t have stayed awake 24/7 to keep her safe .

I think you have to decide what type of care you would like, work out how you will pay for it, and then communicate your decision to your children.

It is not going to be possible for your husband or your children to care for you if you end up with dementia. Having been through this agony with three grandparents I know all too well that it’s not safe or possible. People with dementia need 24/7 care for their own safety, and people who are elderly or with young families and jobs cannot provide that care regardless of how willing they are.

That means that if you don’t want to go to a care home, you need to have the means to pay for live-in carers. You’ll have to work out how they will be funded (likely with input from your husband), and then communicate the plan to your children so they can assist with arranging this care if needed. This kind of care is incredibly expensive; you’ll need to research the costs and work out a rough budget based on how many years of care are likely to be required etc.

Your op is confusing

It comes across that you are disappointed your DC arent rushing to offer that you perhaps live with them in your old age, as a respected and cared for "elder".

The reality is historically women have typically been the primary care providers for both children & the elderly, and womens work outside the home tended to followed human life cycles more. Women would have worked outside the home as teenagers/young women before marriage. They then would have worked more part time around young children, supported by their own mothers helping with childcare.

This would have been followed by a period working more but curtailed by starting to help with their own grandchildren & elderly parents.

The reality is the government want to institutionalise all this care to reduce the number of people doing it and free women up for other work, but it means the care provided is correspondingly poorer and underestimates the cost of having so many buildings set aside for nurseries, care homes etc. Its not an efficient use of that resource.

The real issue hasnt even hit yet. At the moment there's a generation of women who worked less still helping with their grandkids etc. In about 10-15 years we are going to have a vast generation of 80/90 year old boomers with kids who work full time & are not free to care either for the parents or their grandchildren.

Do you have assisted dying where you live? Can US citizens go to Canada to access this? That's something that I would think of doing, although you may have religious or other objections to this.

You cannot make your children care for you.

I choose to care for my father, who has dementia, but I'm under no illusion that one day he is likely to need to move to a care facility. It's just the nature of the illness.

Of course, there are many other ways we can leave this planet, so you may be concerning yourself about something that will never happen.

If you are wealthy you could spend time looking at options like finding care homes you do like - I can't believe they are all.dreadful.

But the essence of your original.question - you can't make them, and you shouldn't.