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?

I recommend the book by Kathryn Mannix: With the End in Mind. A good way to get talking about death.

Btw my mum has always told me to put her in a home when the time comes and not feel guilty. She says this because of the very difficult time she had with her own mother in the last few years of her life. She doesn't want me to go through that.

I looked after my mum with vascular dementia for the weekend a couple weeks ago. It's not a job for one person. She needs 24/7supervision. She was up and wandering seven times in the night which basically means I didn't sleep at all for two nights. She is surprisingly strong for a 74 year old and also a dead weight if she needs lifting/support. I am a fit and healthy 50 year old woman but it wiped me out for a week.

If it happens I'd be taking the property out of trust, remortgaging and using that money for professional care.

Why can't you just assume that none of them will be able to care for you? Realistically, with dementia, they won't be able to.

You don't need to talk to them to make a realistic plan, because the plan where they care for you is just not realistic at all.

YABU to expect your adult DC to agree to hypothetical care arrangements at some unknown time in the future

If they don't live close to you then realistically they are not going to be able to provide care anyway unless you expect them to relocate which is contradictory to your claim that you don't want to be a burden

Writing an advance directive which expressly says you are not prepared to go into a care facility is pretty selfish and manipulative IMHO

As a pp said, you keep talking about what you don’t want. Decide on a solution you find acceptable, and let your children know.

It also concerns me that you don’t expect your husband, the man you’ve spent every day for a decade with, to be your carer, but you both appear to accept that one of your children, who all live at a distance, should?

I work in elderly social and work and every day I have to deal with the reality of families who have been torn apart and are at breaking point due to caring for family members at home who have made clear to their relatives they don't want to go in a care home. They have 24/7 care needs and family members have given up their careers, sacrificed time with their own children, suffered sleep deprivation due to being up several times at night providing overnight care and ended up with severe mental and physical health problems all because their parent or family member has said they don't want to go in a care home. Inevitably some sort of crisis happens and the family member has to go in a care home and then families have to live with the guilt of going against their parents decision. These family members end up shells of themselves, its not something I'd ever wish for my child.

The reality is we don't live in native American times with nomadic tribes. We don't just give pills to people when they become a burden and if people don't want to go in a care home and they reach a point where they have 24/7 care needs then 9 times out of 10, this care falls to family members. Live in care in my experience is almost impossible to source.

I work in the industry but the reason we have care homes is because we have a duty as society to ensure our elderly and infirm are looked after and we can't expect this fall to families solely, it's an enormous burden for them mentally and emotionally and many families can't simply provide the level of safe care that is needed. Yes there are some care homes that aren't great but they are many that provide a high level of care and actually enrich the lives of both parent and family. The parent lives somewhere where they have companionship, activities and their health and care needs are met by a wide range of people rather than falling to a few exhausted family members. Family members are also relieved of the 24/7 care duties as well.

I'd think long and hard OP of what you are asking of your children.

That is a massive burden to put on your DC and incredibly selfish to expect them to commit to caring for you, especially when there is nothing actually wrong with you. You could live to 90 in perfect health.

If you live in different states it’s not practical for them to care for you, unless you expect them to uproot their lives for you, which again is incredibly selfish.

"Some men are good at caring for their wife, but my DH hasn't the patience, not the personality for such"

Sorry, why did you marry this man?

Absolutely this, why does your husband get a 'oh well, bless' for his learned helplessness/planned incompetence My DH doesn't see spilled coffee on the floor, let alone if I were incontinent and I would need a new nappy or need to see a doctor, or to just get me outside so I could feel wind and outdoor sunshine on my face. Some men are good at caring for their wife, but my DH hasn't the patience, not the personality for such; we've been married only 10 years. He tends to defer to my kids...due to to "They've known you much longer than I" and my kids are likely thinking "Well, she is his wife...".
But you're placing a HUGE guilt trip on your dc? The 'oh my care needs and who's responsible are being ping-ponged between them'?!

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

Why are you not creating your own and making preparations yourself?

You're basically planning on saying to your adult children, with their own lives, I’m not prepared to go into residential care so how are you proposing to look after me?
Im not surprised they don’t want to discuss it.

So you've had to make the plan for your husband and now you've got to make your own plan too. Seems fair.

Sorry I don't have much advice other than make plans for euthanasia if you get diagnosed with dementia? That's what I'd prefer to do.

My American friend who doesn’t have DC has built what she calls a caretaker’s room in her house. Her plan is to have live in carers if she needs to have them as she gets older. Is something like this an option for you?

Don't worry, Donald will look after you. He loves old and vulnerable people. Oh, wait...

With respect OP, it doesnt matter what you "want"- when someone has advanced dementia, there comes a point where even having carers 4 x a day isnt realistic. My dad had it and he needed constant supervision - and I mean constant - 24/7. He would get up in the night and try to do dangerous things- eg put scissors into electrical sockets, put the gas on, leave the house and wander about confused etc and this was at 3am as well as during the day.

Noone wants to go into a home, literally noone sees that as a great thing but sometimes it's the only way to keep someone safe. How do you expect your kids to watch you 24/7 and never sleep? even if they did not work this wouldnt be workable for anyone- are YOU able to stay up all day and all night to watch someone constantly?

As for the native tribe thing - you dont live in a native tribe so how is that relevant?

I think in your case I would move to a state with some form of euthanasia- is it Oregon that has the most open access? I think you are going to have to die a lot earlier than you otherwise would, because I don't think anywhere allows people who've lost mental capacity to access this kind of law. So you are going to have to monitor your own cognitive function and take action when things are starting to deteriorate.

You have got two big advantages - one is that you are in the US where I do believe it is possible in some areas to access assisted suicide, plus you can probably find a doctor or therapist who will help you, eg with an early MRI to check how your brain is ageing and regular testing. I wish I had access to the same. Good luck.

It's upto you to create your own care plan and it shouldn't be one that's remotely dependent on your adult children - especially when your husband isn't even going to be helping you!

I can see that from your point of view maybe there are plenty of options. 'A could care for me, or B, or C, or D, in their own home. Or any one of them could move closer to me and care for me in mine.' But actually, if you break those down and start with 'I want' I think you could probably start to see that it sounds both infeasible and unreasonable.

I want one of my children to care for me.

I want A to notice every time I have soiled myself.

I want A get up multiple times a night if I wander around the house.

I want A to lift me back to bed if I fall.

Do you?

It might be better if you framed it as 'If DH dies I am worried I might get lonely. I was wondering about moving closer to one of you in that instance. Do you think X town has good facilities for older people?'

As others have said, you may be worrying about something that may not happen. It would be counterproductive to damage your relationship with your kids by placing unrealistic asks on them.

And to put another spin on it, my grandmother lived to her late 90s in her own home with carers coming in multiple times a day. But her children and grandchildren all lived 1-3 hours drive away. Although we visited as often as we could, she could easily go a week without seeing a family member. Towards the end we did wonder if she would have been happier in a home with more people to talk to. Her sister went into a home close to family had visitors every couple of days.

Do you have a living will?

I cared for my dad through his journey with dementia from the early stages until he passed away.

It really only became hard work in the last 18 months, and in the final 6 months was a full time job, or needed me present all the time.

I'm proud to have done it, and would happily do so again, certainly not impossible to do, but its a commitment.

Yes, this is what I'm thinking as I read the thread.

OP, you need to make a plan, and either give copies of it to your children now, or let them know the plan exists and who has it. And treat your DH like the grown adult he is - he is the person you need to discuss all of this with - presumably he's your legal next of kin and the person who would be expected to take on power of attorney.

My parents had dementia / vascular dementia, and stayed at home with a live in carer. It was cheaper than a home, and better for them, but still not without issues.

Dementia strikes in different ways. My Mum lost the power of coherent speech but always knew who we all were. Dad lost all short term memory. Both remained either continent or semi continent.

My brother’s MIL had Alzheimer’s and stayed at home with visiting carers and they had web cams in every room and went over when anything happened. She would forget to eat or drink.

It’s a bit like a birth plan, you can lay out preferences of approach for various scenarios but you can’t prescribe how it will unfold.

I think it is unrealistic and unfair to expect any spouse or family member to take on f/t care of someone with dementia without external help.

Not sure how it works in the U.S but I would make sure your DC have Lasting Power of Attorney for Health , Welfare and Finance (gives them power to make decisions on your behalf if you lack capacity).

Look at some ways of financing at home care: if you don’t have savings do the gvt help at all? Can you plan to set up equity release against the value of the house, and how long would that last?

Sign a DNR (do not resuscitate) form if such a thing exists in the U.S.

Moving to a house that is elder-friendly is something most of us seem to leave too late. A house where you can live on one floor without stairs or steps, manageable garden, good non-remote location that family and carers can get to easily. Retiring to a far flung beauty spot is great til your Dc are making long journeys every time there is an emergency, and there are no local care agencies or nearby health facilities.

Planning for older age isn’t just about dementia. More likely, statistically, are other debilitating health conditions, losing the ability to drive, losing mobility.

The fact that you live apart and aren't close to your children is the issue.

My parents and I, and my DD have had many talks about our wishes, and my parents are only just 60. All direct to cremation, all organ donors if they are wanted. I've made it clear I won't be doing any sort of intimate care and that the have to have preparations for that although practical care, runs to the shop / hospital is no problem. In an ideal world we would all prefer euthanasia when the time was right. Resuscitation if the prognosis is likely to be good but not if the current quality of life or predicted quality if life would be poor.

But those conversations have all been natural, as we've driven by a hearse or chatting about current affairs when someone has died. That's an awful lot harder to do when you are far away from each other. I suggest you write your wishes down in advance and hope that they are listened to.

Are you talking about voluntary euthanasia OP? Is that available in America?

@Sheri99

I understand your worries and the fact that you might wish to discuss the situation before it possibly arises, however you are looking for reassurances which, aside from lying, your children cannot realistically give you.

A person with dementia could become a danger not only to themselves but also others. Placing the responsibility on ensuring this does not happen on your children, especially more in circumstances where they all live in different locations, would be unreasonable.

I think you should do some reading about dealing with lack of control, and if you feel able get some help dealing with the abuse you suffered in your past.

You are right that other cultures deal with issues such as these in different ways, but the reality is that your life, the one you have built and the ones your children have built do not coincide with these options. It is simplistic to assume that you can take one small element from a different culture without the rest.

In family oriented cultures, of which the US is not one, there are a myriad of differences in attitudes to prioritising family and putting it above the individual.
In some cultures 3 or more generations live within the same house, or build on top, will take in a cousin from a remote village or from another country for a few years to study. They have relatives staying for months on end. Homes are the focal place and there will always be someone there, they aren't empty for most of the day.
Even in such situations it's not a given that families can manage without outside help, it will depend on many factors.

I acknowledge that I may help look after my parents or in laws at some point in the future. I haven't particularly thought about it even though they are all quite a bit older than you and wouldn't really appreciate discussing it now. I will do the best I can for everyone involved if the time comes where it is needed.

Your need to know is, while understandable, not something that I could manage, because life is unpredictable and the inability to accept this what you should work on in my opinion.