I hope I can write this clearly. I apologize if it is confusing, but I feel really overwhelmed.

My spouse and I have two older parents we are very concerned for. I will call the first one "PID" for parent-in-denial. PID could have been up front with us about the other parent's (PID's spouse) declining mental condition for years, but this is clearly terrifying and confusing for them, too. The other parent (who I will call "DP" for Dementia Parent) has been increasingly acting strange. It has been gradual and we only seen them several times a year so it was easy for us to miss at first. It's really clear now.

Without going into too many specifics here, we are positive they at least need some kind of in-home caregiver. From the little we know, DP has recently (but *finally*) been diagnosed with dementia.

DP suffers from paranoia, has injured PID by accident (at least once, but I suspect it's happened several times), had car accidents (which PID tried to shush DP from talking about), and tries to randomly leave the house alone without giving notice.

PID has a lot of their own health problems which have escalated over the year. PID is a smaller person than DP. We fear for PID's life as we know that the stress of caregiving kills, but PID strongly protests that "everything is okay" and is afraid to let go of control. I'm sure it does not help DP's paranoia makes it difficult for new people to visit their house.

We are afraid for them, but PID only talks to one of us a little about PD's health (this puts a lot of pressure on one person to get information) and was angry that we recently opened up to other concerned family members. We want to respect their privacy, but we don't want to hide this anymore.

My spouse and I decided that we want to come up with an emergency plan. We are almost positive PID will end up in the hospital first and could possibly die. PID has no friends and has cut off local family in fear of them noticing DP's condition. We are their only children and live a day's drive away.

We tried bringing this up to PID over a year ago, but PID has not been able to talk with us about a plan. We were told if an emergency happens we are expected to drop everything to live with DP until we find 24-hour live-in home care. When we tried to explain how unreasonable it was, there were tears and accusations we just wanted to put them in a home and forget them.

I have seen how hard it is for friends and other family members to find live-in care for *local* relatives with dementia (all ended up in a facility after going through 1-3 hired caregivers). I fear we won't be able to do this well at all remotely when an emergency happens.

This is really frustrating and scary. It feels like watching someone slowly and painfully commit suicide with the expectation that we, too, should ruin our lives the same way while silently caregiving.

It's really clear at this point, we may to have to come up with a plan ourselves without their consent. We're planning to switch gears to do that very soon if PID doesn't come around.

What are things we need to cover to be prepared for the worst? What can we do on our own to help things along if they don't/won't/can't help us put together a plan?

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If they will not go into Assisted Living and Dementia parent transitioning to Memory Care there is not much you can do as you can not force them.
The exception would be to obtain Guardianship of Dementia Parent and most likely this will alienate you from PID.
Unfortunately in many cases nothing can be done until some catastrophic event occurs and a decision is forced.
I can urge you to not allow Dementia parent to drive. The keys must be taken away, if PID does not follow through with that then the other option would be to remove the car from the property so it can not be used by either.

If there is a fear that one is injuring the other you could contact Adult Protective Services and that might force a decision from an outside party so you would not be "blamed" for what is to come.
Helpful Answer (10)
anonymous991507 Dec 2019
We understand that we can't force them (quite honestly, we don't want to do that either). What we want to do is prepare for the catastrophic event, because we are almost certain one will happen, and there is little to nothing we can do to prevent it. At the same time, we are the only contacts they have that will come and care for them when that occurs. Our worst-case prediction is PID will die or at the least be incapacitated, and we will be stuck trying to find DP a safe place to live in ASAP. It's upsetting as we will be the people who have to force DP to transition to 24-hour care, and we do not have any information from them that will help us do that.
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Events will happen that will make the decisions for you. That’s unfortunately what I’m stuck waiting on with my dad. Meanwhile make yourself familiar with the options available given their finances. Get all the cooperation you can in seeing that documents such as POA’s, wills, etc are in place. Since he’s paranoid and can subsequently be a danger don’t count on in home caregivers to deal with that, and some facilities won’t do it without medication to make it calmer. Do they need medication and meal delivery now, anything to make the car use stop?
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The one thing that you CAN be doing now is to get documents in order. POA if possible. If PID won't cooperate, then talk with an attorney and get the paperwork going for guardianship as that takes awhile too. Go ahead and research ALFs and NHs near you, because THAT is where they will need to be when the time comes. It will be less stressful to move them once, close to you than for you to have to travel that far every time there is an incident, and there WILL be many incidents.

Best of luck.
Helpful Answer (6)
busymom Dec 2019
I agree that moving them closer is essential. None of this will be easy and the loved ones may be very unhappy, but their safety is key. It's now time for the kid to become the parent (never, ever easy and there are thousands of others who can attest to this!) Getting Guardianship can take over a year. We’ve been trying to do this since January of 2019 and there still is no real ending in site. In the meantime, my aunt (whom we were petitioning the courts to become her guardian) passed away, and my uncle at 92 is not doing well either. Hopefully our case is not typical, because if it is, something in the court system is very broken.
Would they consider moving, together, to an assisted living apartment in your area?

This would get them started in the 'system' with the excuse of being closer to you guys.

Good luck
Helpful Answer (5)

First u need to get POAs. Tell PID that having these will help u help them. DP if too far into his Dementia may not be able to assign anyone, then its guardianship. Thats expensive.

You may just have to wait until something happens. One of them lands in the hospital. Goes to rehab and then you have them evaluated for LTC and Medicaid if no money. 24/7 care in the home is hard when you don't live close enough to monitor. And I, don't trust strangers.

Please do everything u can so u don't need to move in with them or they with you.
Helpful Answer (5)

This is VERY challenging!

Yes if you can get them to get their paperwork in order this would be very helpful for when the inevitable big event happens, as it must, at some unknown future date.

24 hour in home care can be quite expensive. Especially since you don't live near them, you would have to use an agency to handle this as opposed to finding 3+ individuals to handle the care. Nightmare.

Start looking into their local nursing homes. If PID ends up in the hospital, DP will need to go to one ASAP, at least for respite care while PID is in hospital and until they are well enough to go home AND safely care for PD.

Except the days of them both being able to stay safe alone appear to have already passed. Can you hire a person to do things for them, without calling them a caregiver? Like a weekly cleaning person? Maybe an aide that can help with errands, etc.? I know my daughter used to do those kind of things through a home health agency. She would do a little cleaning, take them to the store, etc.
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First, is their paperwork in order?  How about POA/DPOA.  PID of course should not have DP named as POA, but if they haven't paid attention to time passing, then PID needs to update POA/DPOA designation. Start looking at memory care facilities for DP. I would not even consider trying to find a live-in caregiver.  Not only is it incredibly hard to get 3+ reliable people on a regular basis, your or someone else would have to be available to handle "emergencies", etc.  Unless you are very wealthy and can hire a full-time care manager to cover all bases, it just doesn't work. And I would certainly not make any promises about moving in to care for DP. Be realistic. Life can really throw curveballs, but you just have to accept that bad is going to happen.
Helpful Answer (4)

Ok so not sinking today, but the boat is taking on water.

You've already identified denial is the problem blocking things. That's hard.

+1 Countrymouse:
What you can do without anyone's permission is research.

I'd prioritize a safety net, research & then a care plan for when the barrier of denial comes down.

Have a list of phone numbers PID can call if things go wrong. Ensure PID has it. Doctor, you, neighbours, emergency services.

Breaking trust is one thing but safety is another. Call their Doctor yourself. If Doctor won't listen (privacy etc) email/fax instead.

If can, call trusted neighbours to line up support. Don't have to disclose all. Just "I'm a little bit worried... if you are a bit concerned, here's my number."

Is there an emergency respite service? Or is that via calling emergency services? I've called our emergency services (office not emergency number) to ask for futrure crises advice before. They were fantastic. Also Lifeline.

You can gently warn PID of the dangers & offer supportive suggestions (can PID talk to Doctor for starters?) & hopefully PID will reach out.
Helpful Answer (4)

Not to split hairs, but wouldn't it be quite a lot less confusing if you simply refer to the respective elders as "mother" and "father" rather than using initials which - not to split hairs again - you then switch round?

But it doesn't matter: this situation is confusing and hair-raising (never mind hair-splitting :) ), because you're almost having to wait for them to crash.

PID (mother, yes?) is very afraid. Unfortunately, discussing the two of them against what you know to be her wishes with other people will not have made her any readier to trust you, although I understand your urgent need to share the burden around and get input from the rest of the family.

So: who does she trust? Anyone?

What you can do without anyone's permission is research. Set aside for a moment what the parents' plan is (there isn't one, for a start) and find out what the possibilities are. You need to collate information about their funds, their assets and income, any insurances; their probable care needs now, looking ahead, and on into the future; and what resources are available, whether locally or in the wider family's catchment area. Resources could include health and care services, agencies, and facilities, as well as informal support from family. Don't just despair based on other people's difficulties: gather brochures, call people, find out what the procedure is.

The idea is to know what your options are. Then when one or both give way, or a crisis forces the issue, at least you'll have some idea of where to turn.

Be sympathetic to PID. She's losing everything she cares about, or she's afraid she is anyway, and all she knows is that she doesn't want it to happen - she's not getting any further with her planning than that, and who can blame her for not wanting to look?
Helpful Answer (3)
worriedinCali Dec 2019
There might not be a mother and father.....could be two fathers or two mothers ;)
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So sorry you are going through this situation, but as everyone has already stated, get your paperwork done now, while the situation is calm. Once something happens, that is when panic sets in, emotions are running high and rash decisions are made in haste. DO NOT until something happens is my best advice. Call social workers, elder care and whoever is in your area now.
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