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?

Friends grandmother was definitely a danger to others. She managed to set fire to.the kitchen while her daughter was stripping the beds. Also while she was hanging out the washing turned the taps on on the bath and forgot, friends mum only found out when water came through the living room ceiling. They'dalready turned the house into Fort Knox because of nighttime wandering. Sometimes being at home isn't enough you need 24 hour supervision in the same room.

DH and I have agreed we will never ask out DC to look after either of us. We decided that if we became ill enough that it affected the other one's life too much we were to be put into a home.
We saw how much his DF's life was adversely affected when his DM developed dementia and he felt it was his duty to care for her, when he really didn't have the skill or mindset to do so.

Unfortunately OP there's often (although not always) a big chunk of time between when a person with dementia becomes unsafe to care for themselves at home and when they die - so it's all well and good assuming you can manage alone and simply ask for no medical intervention should you be near to death, but that leaves potentially years where you'd be effectively neglected and in danger. I think some questions to ask yourself/things to think about are:

• Do you want your children to offer care? It seems to me as though you do, but then you also seem not to expect it. I think it's useful to have a clear idea of what you actually hope for and what's realistic to ask (if they all live in different states, it seems unlikely they'll converge back to share care, so that means it may fall to one child in particular, which can cause a whole host of issues). Once a person has advanced enough dementia, family care is not enough, unless someone gives up their job to be there 24/7. I can't imagine many people doing that, so I think you need to accept that's unlikely to happen.
• If you plan to try and manage alone, are you okay with potentially starving or dying in some kind of accident if you develop dementia (as would have happened to my grandma, had she not had carers at home 5 times a day before she went into a care home)? Are you okay with the potential emotional impact of that on your children?
• Does your state have good/any social care procedures? e.g. here if you were to become unable to look after yourself and there was nobody around to do so, you would potentially be deemed unfit to stay at home and given a care package (either in-home or at a care home) regardless of your previous wishes if you no longer had the capacity to choose
• Are there types of care - for example, carefully vetted and chosen in-home care companies - you would feel comfortable with? Can you talk to your children about what your requirements for this would be, how you would like safeguarding, things (a local trusted person to check on you, regular check ins by your children, whatver) that can mitigate any percieved risk that you could ask for

Basically, I don't think what you're hoping for (to be at home until you die if you were to develop dementia) is likely to happen for a number of reasons, or if it did you would be at risk of having a very unpleasant death. Nor do I think it's reasonable or workable to ask your children to commit to the care (or to be upset if they don't). So you need to think about what your actual options are and if necessary, how they'll be funded.

I think it is easy to look at other times and cultures and see that they do it 'better'.

In reality, pre antibiotics, an elderly or infirm person would get an infection which they would then succumb to. The phase of being unable to look after oneself would be naturally short.

Now, we treat things. Is it always right? I'm not sure. Unfortunately we don't have the ability to accurately predict the future.

8 weeks ago my DM fell and broke her leg. At that point she was hale, hearty and living independently. Now, she is a frightened woman, stuck in a hospital bed. She is unable to walk. She doesn't know who people are, she doesn't know where she is.

None of us knew 8 weeks ago that this is where we would get to.

May i suggest the books by Wendy Mitchell. Particularly One Last Thing

Write your wishes down. Sign and date the document and store safely. Contact your AC and tell them where it is. In the event of you needing care they will know your wishes.

Also a few things to pick up on:

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. Very tricky to have this conversation with a child without it sounding like you're expecting them to say yes. As you asked for how you'd like your parent to approach this, my honest answer is: not like that. My mum, who cared for my grandma as long as was possible and probably past the point it was really safe when she had dementia, has been VERY clear with me that she does not want or expect the same (it broke her mentally and emotionally) and that I'm to organise a care home for her as soon as needed. I appreciate that she's got the experience to have insight directly on this, but she told, rather than asked, me what her plan was, and didn't put any emotional guilt on me to say "No no, I'll do it".

And I strongly do not want institutional care: ever, but I do not want to burden anyone. The emotional burden of a parent who has refused to organise a realistic care plan for themselves and worry about trying to check up on them from states away would be very high for your children: certainly higher than a facility providing the care they're there to provide.

I do not want to be kept alive if I have dementia; no heroic measures. As I said in previous post - there's often a long old time between 'dementia advanced enough not to be able to care for yourself' and 'at the point where not taking medical measures would allow you to die without intervention'. The time in between is what you need to plan for.

Wendy Mitchel had dementia but she managed to talk to her daughters and medics very effectively. She died eventually by refusing food and fluid, as in the UK assisted dying is still illegal.
Her books really are excellent.

Sounds like you want one of your kids to take on your full time care if you should become incapable of looking after yourself and that is incredibly selfish of you.

My dad had always said he didn’t want to go into a care home but he now has Alzheimer’s and is incapable of looking after himself and is such a risk to those around him, due to his aggression, that he needs 24 hour 1 to 1 care. We struggled and looked after him at home for years, until it became absolutely impossible for this to continue and he has now been in residential care for around 6 months.
I’m only 54 and have already told my children and husband not to attempt to look after me at home should I become incapable of looking after myself without minimal outside help. I know, first hand, the burden home care puts on those providing the care, the sheer mental and physical tiredness, plus the time and the guilt that goes with it and I wouldn’t want to put my children through that for a second.

OP, you will almost certainly need institutional care if you develop dementia. It is unfair to expect your children to care for you (& probably not safe or practical for them to so so anyway). Please don't put demands on your kids.

And I strongly do not want institutional care: ever, but I do not want to burden anyone.

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.

These two statements completely contradict each other. If you strongly do not want institutional care, you are passing the burden to whatever degree (and usually it is a crushingly large one) to your children.

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

Yes. Completely unreasonable. You are either hoping or expecting one or more will say, don't worry, mum, you can move in with us. Or that one or more will say, no worries, we will put a pillow over your head/find you drugs, if it comes to that.

My MiL has severe and rapidly advancing vascular dementia with Alzheimer's- she is doubly incontinent, in a wheel chair, lives on a 90 second memory loop and can be aggressive without medication. There is no way we or anyone else in the family would be able to look after her- her needs are just too great. She is in a wonderful ( but eye wateringly expensive) dementia specialist care home- lots of activities and has daily visitors from her friends and family.

I have told my DDs that I absolutely do not expect them to give up their lives/ jobs/ retirement to care for me if I need this in my dotage. DH feels exactly the same way. I know families that have battled away looking after an elderly relative who needed 24/7 care and it absolutely broke them. I just would not want this for my DH or DDs.

Luckily we are able to afford any care we might need. Others I know are not so lucky- not sure what social service type care homes are like- not so great I imagine.

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.

It was impossible for me, I cared for my DM for 4 years, she’s now been in a nursing home for two years and has one to one care at night. She often needs extra medication to calm her down and can become violent.

This. My Dad suffered dementia for the last 7 years of his life, dying from sepsis (very peacefully) at 89. For the first 4 years, we saw a progression but he was still able to take care of himself at home with family checking in on him every single day. The final 3 years were increasingly bad - he was incontinent, an increasing danger to himself and despite carers every day, plus family several times a day, his situation was awful.

He was in and out of hospital because of regular falls. He went into a care home when he could no longer be supported at home. By then he did not recognise me as his daughter and was aggressive and violent (the exact opposite of how he had been all his life previously).

OP, you need to listen to what people here are saying to you.

Please don't say to your DC that you don't want to go into a home. My mother has always said this to us, now she has dementia and it is getting to the stage where we cannot cope with her care. What are we supposed to do if not a care home? Even though we know this is against her wishes. It has left me feeling absolutely terrible.
You cannot burden your family with this. What will help them is if you get all your affairs in order. Maybe visit some homes and choose which one you would like, so that this decision is taken out of their hands

Your children don't live anywhere near you, so they won't be able to provide hands on care should you need it for dementia or any other reason. You seem to expect them to uproot their lives to care for you? That's an unfair expectation.

I’m not sure Mumsnet is the right audience for this. Mumsnet is predominantly a U.K. based audience and you’re asking for advice on how to suicide/ die with assistance rather than go into a professional care facility. Assisted dying is not legal here. I think culturally/ socially it is accepted that going into care is a part of old age for many, even the majority of people, and can be a happy time for so many.
Could you spend some time whilst you are well looking around care facilities and nursing homes? And also addressing your issues with being cared for, by having therapy. It would be very cruel and manipulative to say to your children that if they won’t look after you then you want to die, which it seems is essentially what you’re saying.

if your husband can't cope the choice is either burdening your DC or a care home. I don't know a magical third way.

Care homes aren't necessarily awful.

My mum and my MIL both lived in care homes for the last 2/3 years of their life. Neither of them wanted to be there but they had both reached the point where it was the only viable alternative (MIL had dementia and my mum was physically too frail to live on her own).

In both cases the homes had to be picked very quickly when the parent reached a crisis point. We got lucky. Each home was great and the care was consistent, personal and very kind and our mums settled in very quickly. But the responsibility of researching and choosing the homes and then imposing those choices on our reluctant parents was huge.

Having been through this process twice has made me absolutely determined I will not place similar burdens or responsibilities on my own DC. When the time comes I will be very active in finding my own care home/sheltered accommodation in advance of any potential crisis. You should be doing this too not trying to pass the responsibility to your DC.

You may hope to die peacefully and suddenly at home.

You may prefer not to have to rely on institutional care.

You might like your DC to be involved in planning your future care.

You may dream that at a point when you are fully of sound mind, you will know that you will develop dementia imminently, and make a positive decision to then hasten your death to avoid care.

However, what you have to do is pragmatically plan for the worst case scenario - that you slowly slip
into dementia, your children remain remote from the process, and that you physically live for a decade despite your cognitive decline. Document your preferences based on this worst case scenario - home care / residential care? Closer to one or more of your children, or where you currently are? With your current DH (if he is still alive) or with decisions made individually for each of you? Consider gaps in the financial provision for this, and take whatever steps you can to fill them.

I am living this - for my DM - at the moment. We are supportive, my DF is still alive and alert, but critically my DM has talked for decades about her positive preferences (NOT ‘I won’t’ or ‘I don’t want’) so we feel we have her permission for our actions and decisions.

I'm really not understanding what your alternative plan is if you are saying you don't want a residential home/care unit?

Who do you envisage is going to provide your care in that instance?

If your DH passes before you do, and you refuse a care home but are unable to care for yourself... what does that look like to you? Are you expecting your children to do it?

Or alternatively- given OP’s second post - that she wants her children to condone / advocate for / assist in assisted dying? I’m not sure about the legalities in the US but that would be an even more terrible burden.

It sounds like you favour euthanasia if diagnosed with dementia or any debilitating condition. There are several options. Personally I have decided with a friend that she’ll let me have some insulin for me to administer in the privacy of my own home. If you don’t want to do that, I think there’s a couple of states where euthanasia is legal. And Canada has legalised this.
Research is your friend here. Think about what you can tolerate, join forums that explore this and make a plan. Also a living will so that if a catastrophic event happens, stroke, fall under a bus, you’re not kept alive when there’s no hope of life quality. If money is an issue, start saving so you have peace of mind that your affairs are in order. Don’t talk to your kids, they don’t want to think about you not being around.
I’m also not for a care home.

I think we sometimes fetishy this idea of multiple generations living together and looking after one another but the reality isn't this caring utopia people think it is and there have been many studies and articles showing care givers in these situations (more often than not female members of a family) as describing themselves as living in "hell" and abuse and neglect often happens in these scenarios. I've been involved from families from cultures where they live like this and it seems an absolute nightmare, situations where toddlers and young children and people with advanced dementia are all living in close contact and care givers on the brink of a nervous breakdown.

I think the OP needs to stop thinking back to a time where nomadic times and deal with the reality as it is today and how this could impact her family should worse come to worse.

@Sheri99 whilst you are in good health, this is the time to be thinking more along the lines of nominating one of your children as a POA.

https://www.investopedia.com/terms/p/powerofattorney.asp#

As a PP has already said, a living will / statement of what you want to happen should be on your to do list.

Have you considered how ongoing care will be funded? If one of your kids (and their family) had to step up and take care of you, how will they access funds to do so? If your money is intermingled with your DP’s, how will they know what is ‘theirs’ for your care?

What happens if you start having violent episodes which they can’t cope with? What if your personal care needs (eg becoming doubly incontinent) go beyond what they can comfortably manage?

If you require care, will you be happy being separated from your DP to go to one of your kids’ homes (in another State) or do you expect them to move to support you in your own home?