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?
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.
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?
This would get them started in the 'system' with the excuse of being closer to you guys.
Good luck
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.
Best of luck.
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.
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.
As for "paid" help and expenses: caregivers in the home is the least expensive option, ALF is usually more expensive than home care, and total care in a residential facility is the most expensive. Check into PID and PD's insurance plans to see if any of this can be covered.
My MIL had round the clock caregivers when her dementia got so bad she couldn't be alone. None of the family live in Hawaii with her and she refuses to move. Unfortunately, it took the death of FIL to provide the finances for this kind of care.
It’s a very frustrating situation to be in for sure. Waiting for the eventual crisis. Make sure POA etc are in order & that your contact info is available to emergency services. I put a clear pocket on the wall by the apartment door with all necessary info as well as health info on both Mom & Dad and a recent photo of Dad. We keep this up to date. I have asked Mom what would you do questions and gone over some suggestions etc. Ie: what would you do if Dad wasn’t here & you didn’t know where he went? What would you do if...? Some things I printed out from dementia or Alzheimer’s society websites for her. I just leave them on the table. She can read them or not. Sometimes it’s weeks later that she might look at something.
I tried a lifeline set up but Dad refused to wear it and got a kick out of flinging it across the room and watching Mom rush around to ensure he was fine & answer the call before emergency services came. Totally not his personality before dementia. I tried to convince Mom to wear it so she’d have immediate access to emergency call but she’s as adamantly against it as Dad.
My parents absolutely won’t allow any caregivers in. Mom insists everything is fine (she can’t say it with her eyebrows in neutral!) so all I can do is check in via text or call daily, spend a couple days a week there (when not on the road for work) and trust that when the inevitable happens I’ll deal with it. Easier said than done to try to stay chill and let their lives play out under their direction knowing I’m going the one expected to fix everything when the isht hits the fan.
All I can say is do your research and try to get your ducks in a row as much as possible. Try not to judge or preach to PID. it is what it is. (I’m trying my best to follow my own advice - it’s so hard!) This isn’t the life they thought they’d be living and I guess the denial is the only way she can see of coping. Knowing nursing homes near you that will take dementia patients is a good idea for down the road.
Good luck - try to focus & find some peace when you do spend time with them and save the freak out/ OMG / frustration for in the car after you leave your visits.
Obtain POA immediately. Disable their auto. It's lucky that DP hasn't killed someone.
We have been married over 6o years - no one knows either of us the way the other does!
He has been used to me preparing his foods & beverages the way he likes. As long as we are not putting anyone else's health/life in danger, please let us continue to care for each other the best way we know how to. The chores that we either did together or he did alone can all be done by someone else. I feel that the money used for that is better spent than caretaker/assisted living/etc. If and when I can no longer be the caretaker, I hope we can live together in a facility...……...it would hurt too much to part just because of "work." If you are fortunate enough to have a trusted friend or relative who can come in and 'visit' with the loved one so the other one can take a day or so away from home - take advantage of that. We all need a little time to ourselves. Praying for you!
Last year I was taking a class on estate planning, and the presenter (a trust and estate attorney) told the class that in 80% of his clients, the healthy one dies first. I went up to visit my folks the next day and told my completely healthy 88-year-old dad what he said. He was horrified at the thought, and as he was the sole caregiver for my mother who has dementia and heart failure, he was freaked out at what might happen to her.
A week later he was diagnosed with inoperable liver cancer, and he was gone in six weeks. Fortunately, they'd already set up a trust five years before with me as the next Trustee in line, POAs, advanced directives -- everything. When he was diagnosed, we immediately went to the attorney, and both my parents resigned as trustees and I took over well before my dad died in November.
It wasn't a good time, but I don't think we could have done this any better. The transition was smooth, I was able to ask my dad questions about finances, where the medical info was, and everything else before he was gone, and I w-s able to get my mother into a nursing home quickly without wondering how to pay for it before I had access to the money.
The most important part of this is that the healthy one never thinks they need to prepare as though THEY'RE the one that'll die first. My dad never in his wildest dreams thought he'd go first, considering how bad my mother's health was, but fortunately, we had a window of about a month to change everything around.
This is how you and PID need to prepare -- as though she'd go first. Plan as though the healthy one will go first because honestly, there are guarantees for any of us.
You'll all have to be creative and learn how to tell half truths that sound reasonable because they're still smart! so you can help and keep them safe. They have to be/feel a part of the processes, and trust you all are not leaving them anywhere, but want them closer.
Line up delivery for groceries, medicines, meals delivery, a caregiver, a house cleaner, etc. to help. Look for signs for what help they need with whatever: cleaning, out of date foods, cooking, stacked mail/bills, etc.. *This is a good time to look at their bills. Maybe PID will allow you to make a list of bills, due dates to help her? Say it's in case she needed you children to pay any of their bills, just a safety net.
After you get some help lined up quickly, take the car keys and car. Their lives are at risk, and those around them. Say the car's broken and at the shop or your car broke down and you need it (take it and keys). Figure out later about selling it for money they'll need; drive it some every week.
Find an assisted living with memory care they can afford near all you children so you all can help them. DP may need different care level so find out from assisted living how to keep them together, but get caregiving off of PID or PID will continue to break down trying to do that. Tell parents you all want them closer so you can see them more often and help them if they need help. Present your choices to them and take them to those homes; they need to be involved. This is going to lead to paperwork you'll all need to take over, including bills. Say you all want them both to relax. Decide on the main point person who'll conduct business like paying the bills, and others help where they're needed.
If they don't have a will, POA, this is the time to get those. If they do, find it. Tell PID it's important you know their wishes so they're honored. Find an attorney that works closest to where they'll be living; one that does wills and real estate/financial matters they'll need for assisted living. If they've got a home to sell, you all need to be able to assist with documents, and be authorized to conduct business on their behalf. If they're selling a home, one of you children needs to live there until it's sold if your parents already moved, for home security and insurance purposes.