How do we handle Dad's confusion long distance?

Hi,
It sounds like they need a higher level of care. Given their dementia, the time for letting your parents determine the best plan for their needs has likely passed, and it may be unproductive to include them in the decision making process. They will not remember your conversations, and you will have the same conversation many times.
Whoever has POA should be activating it and doing their due diligence now-assessing the finances, healthcare maintenance (when was the last Dr.'s app't?), making sure taxes are paid, etc. Doesn't sound likely that your father and mother are able to manage those things. I would also check in with the aide to see if prescriptions and medications are being kept up. (One of the issues with dementia is the inability to track time or remember prior actions, and double dosing meds, or skipping them is common.) If you or your sister are not interested in acting as POA, then an attorney and a geriatric care manager could assist in setting up plans for their future care.

I guarantee that you're only seeing the tip of the iceberg in your conversations with him. You (or your sister) should do a week long visit and assess the situation. It doesn't sound like your dad would be able to rescue himself or your mother if an emergency occurred. Good luck.

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
https://www.alzconnected.org/discussion.aspx?g=topics&f=151
https://www.youtube.com/watch?v=6cZTgG6kDjs
https://www.youtube.com/watch?v=0BlZF_4EKp4
https://tamcummings.com/stages-of-dementia/

There are solutions, just not ones that make everyone involved happy.

- move your parents into an AL with a continuum of care locally to either you or your sister.

- hire more aids for more daytime hours and keep upping the number of hours (into the night) as becomes necessary.

Both of these options are expensive and both will still require management.

Or, you can hire a geriatric care manager in their area.

I'm not sure there's a 4th option. What your parents want and what is realistic don't match up. Someone is going to be disappointed. Your parents "want to continue to live on their own and are independent in many ways" -- except they're already not since you and hired help are starting to orbit around them. With cognitive decline this romanticized notion just devolves into unsafe. And they are less and less able to make sound decisions that they even will remember.

If you or sister lived near them and were willing/able to provide more hands-on daily help I'd be advocating for that. But that's not the case and I don't recommend either of you uproot yourselves to do this. You don't say how old your parents are, but if they're in their 80's or older they could have a catastrophic medical event that would make your moving there a wasted venture.

In an AL they will have far more social exposure to people, activities and events -- something they won't be getting much, if any, cloistered in their own home. You'll have peace of mind and much less to manage and they'll be safe, fed, and protected. It won't be perfect but neither will attempting to keep them in their home.

Hopefully one or both of you are their PoA. (If not, please provide this information as that changes a lot of how you move forward).

If so, take out the paperwork and read up on when the authority is legally activated. If it requires a diagnosis of incapacity, then this is your next assignment. In the near future you sisters will need to take extended trips to help them and move toward whatever solution you arrive at. I can guarantee you won't be able to do all of it from afar. I wish you much success in agreeing on a solution with compromises that work for all, and peace in your heart as you move through this journey with them.

When parents develop dementia, it's time for them to either move into Assisted Living or to get help inside the home every day. They're no longer able to deal with the myriad of things that need to be dealt with in a home, and you're seeing clear evidence of that in your phone calls with them! So the answer to your question is: you can't really handle your parent's confusion long distance. Some things have to be handled in person and evaluated that way.

All elders 'want to age in place', and in an ideal world, they'd be able to. Since it's not an ideal world, most aren't able to, and need much more help than they realize. With meals, with bathing, with cleaning, with dressing, and the list goes on and on.

If you are hearing in their phone voices that they can't cope with their lives, the reality is 100x worse in real life.

If you feel they have 'mild dementia', it's probably more like 'moderate' dementia. If I had a dime for every time I read a post here about a loved one with a 'mild cognitive impairment' diagnosis which turned out to be a serious issue, in reality, I'd buy myself a nice steak dinner! By the time you're hearing 'confusion' in an elder's voice, it's past time they need to have help for most all of their daily chores and activities of daily life. Especially when owning a home. I'm 64 and feel overwhelmed at what I need to take care of in my home on a daily basis! And I don't have dementia, or mobility problems, or health issues to set me back. That's the hard truth of the matter, too.

It would be a good idea to go pay them a visit in person to see for yourself what's really going on. Then you can make an assessment and go from there. Trying to evaluate a tricky situation over the phone isn't realistic.

Elizabeth has given you some good advice and resources to start checking out. Your folks are 91 and 92 which is quite up there in years. By that time, I had moved my parents across the country to a senior apartment 4 miles away from me. Dad had to stop driving and mom was on the dementia road by then; dad wasn't, but within a year (when he turned 90), he could no longer keep the finances straight in his head. It happened VERY quickly; overnight, in fact. I had to go over there and take the accordion file of 'important papers' away from him so he could sleep at night, that's how flustered he was about those papers. Soon after that he fell and broke his hip and I had to place both of them in Assisted Living; there was no other choice. The rehab would not release him back to independent living. It was a crisis situation at that point. I thank God every day I had moved them close to me, otherwise, he would have fallen in Florida with me in Colorado and then what? That is what YOU are potentially facing here soon (God forbid). Get the wheels in motion now to set your parents up with the right care or placement so that they're safe in case of an emergency, and you don't have to 'fire sale' their home to place them when the medical doctors insist on it!

Wishing you the best of luck moving forward

Set up Cameras in some main areas of the home like the Den, Kitchen, ect. I used Nest Cameras and they aren't hard to set up then you can view the areas and here what's going on 24 7 from your phone and laptop.

If not already done, all their bills should be set on Auto Pay with their Bank Account.
They can have on line Banking Set Up so you can go over their Bank Account.
They can add you on to all their accounts, so you would be able to talk to the Bank, Credit Cards, Ect about the Account whenever necessary.

You can have groceries delivered to their house.

If there is a problem, deal with one at a time so as not to confuse your Dad.

Ask your mom about the problem since you said she only has mild dementia.

Have a yard guy and a House Cleaner come every other week.

Key factors I found to help this year: 1. get POA - you can speak to lawyers, financial advisors, banks, credit card companies as necessary, 2. Set up online accounts with banks, Comcast, Medicare, email, etc. with your phone # & email as contact. I was able to see a fraudulent charge on a credit card by accessing the bank statement, saw that Dad paid the Geek Squad 3 times for annual subscription, and where he paid the newspaper $800 in advance. I also see every time they try to change their password & call them to help when I receive a security code to do so. I access their email & delete phishing attempts & requests for money or personal info. Despite this, they still had challenges with maintaining a condo. Had the heat on mid-summer in Florida, mold grew on the vents, they called a duct cleaning service who oversold them, then couldn't understand the difference between cleaning the ducts & cleaning the vents. I took down & cleaned every vent on my last visit. My Dad almost bought $4000 in gift cards from Best Buy due to a scam phone call. Their Home Instead aide got in the car with them & got help from staff when they arrived. They've been in AL for a week & are visibly relieved. I'm assuming all financial responsibilities from out-of-state, and they have much less to worry about.

Unfortunately, they are unable to make sound decisions about their care. I would be frank and tell them that they need live in aides or assisted living; their choice. You can do their finances long distance online. Are they driving and how do they get groceries? The situation is only going to get worse as they continue to decline. If a change isn't done now it will be done during a crisis. I wish you the best, I know it's not easy.

This is a small addition to the excellent advice. Our local 911 emergency number now has a register with phone numbers, number of people in the house, age, any disabilities,( hearing problems, mobility, confusion). If your parents area, or in fact your own, has such a system, you could register them using yourselves as the contact. They confirm once a year. That way in some emergencies, they could respond more efficiently. This doesn't replace the care they need, but everyone should access it if possible.

This was my situation with my elderly aunt who lived far from me. I was her POA. You don't say if you are their POA. First be sure that all paperwork is in order so that you can take over the functions of POA, if needed. Your parents need to set up POA for medical and financial matters, a living will, a will if they have assets, most financial institutions have their own POA forms, and the POA needs to be on file with Medicare and Social Security to speak on your mother and father's behalf. It's also good to have a credit card on their cc account with the POA's name on it. Fortunately, my aunt was willing to have me take care of all of her financial and medical matters. I was lucky that I had a consulting job for more than a year that took me on a regular basis to the city where my aunt lived, and I could spend time with her. The situation may be different with your parents. You may have to designate some of your vacation time to spend time with them to get things in order. It sounds like a personal discussion with them will be needed. Your father will probably be the one who will make most of the decisions for both of them, from what you say. Do you think your father will agree to having the POA take over their financial matters at this point? Is there a problem with bills being paid late, or out-of-budget purchases being made? Is there a problem with them doing things that seem dangerous (getting lost, etc.)? If they are doing these things, you may need to consult an attorney about invoking the POA. The POA should have all financial statements sent only to the POAs address. If there are aides and other "strangers" going into your parents' home, it's best to lock up financial papers and valuables. My parents lived in a rural neighborhood far from me and it wasn't until my father passed away that my mother (with mild dementia at that point) was happy to move to a senior residence near me.

Gosh, I don’t agree with slapping a dementia label on your dad if he can manage ADL but not projects or issues.

It sounds like you have a solution but need dad to trust the person and not confuse “perfectionist” with control (and control with fear). A 93 yo I knew was full of excuses about not wanting a family visit and finally, in a moment of defeat, said, “I’m just a little old lady.” I think it takes guts to wake up each morning knowing your body and mind are deteriorating and trying to live a full
life.

Maybe you treat dad like a hard to manage boss or remote boss where everything’s managed by phone/email.

DH signed up and now the post office sends us a snapshot of every envelope going in our mailbox. Set this up for dad using your email. Or get his login and password to see what’s going on.

My name/email was added to mom’s accounts as a person allowed to discuss account matters. Tell dad it’s for documenting issues (should appeal to him).

I ghost proxy for my mom when it comes to projects and have them address the email to her and cc me.

Tell dad or dads helper to document and cc you with “status reports” so he can be assured everything’s legit, he can reread issues and know next steps (including need dads input or decision).

Tell dad you’ll oversee the helper to make sure person is trustworthy. Then person can keep you informed.

Use dads perfectionism (if he’ll let you) to manage finances - Dad, if you allow me to see your bills, I can pull them into Quicken so you know how much money goes to rent, food, medical, etc.

By the way, get dads hearing checked. At a senior center talk. They had this example: 3 people on a bench
person 1: It’s windy.
person 2: No, it’s Thursday
person 3: I’m thirty too.

They also mentioned hearing problems are exhausting. I would imagine it makes perfectionism harder to manage.

Good luck.

Bevthegreat has very good suggestions. As for finances and medical issues, it's imperative that you have durable power of attorney and health care proxy. I would like to add that although it is hard to visit them, an in home visit is essential to assessing their real needs. You cannot just go on their word. My elderly Mom was a master at phone conversations - and every caller told me how amazing and "with it" she was for her age. In many aspects she was. Yet little did they know how her memory was affecting how she took her meds, how she was forgetting what and when she ate, and how often she was eating sweets and ice cream instead. She left some bills unpaid. If she tripped and fell, she would not tell me until days later. When at the doctors, she would downplay any symptoms she was feeling and try to impress the doctor with how capable she was. She left the water running often. She was hard of hearing and would often not get clear information from important sources. She would take scam callers at their word. I urge you or your sister to take the time to visit for a few days so you can get a CLEAR assessment of exactly what your parents needs are. Until you do - you only have a snapshot of what your parents choose to let you know.

All these replies are absolutely correct. I agree that what you are hearing on the phone is the tip of the iceberg of fears, issues and quality of life.

While it is a decision you and your sister need to sit down and discuss a plan. POA is at the top of the list, then pave the way for change.

My mother moved to an assisted facility once I explained to her that I was worried about her if I couldn't help. I offered options, home: you need this and you HAVE to have this type of help. Sell the house and move to local ALF of her choosing. Once she agreed, I moved quickly. Then eventually I saw she needed to be closer. I feared that conversation, but when I said I missed seeing her and would she mind moving closer so we could visit more. THAT was the ticket to move.
I am not going to say that the moving process was smooth, her dementia increased to the point of she is now in MC which she is loving on good days and misses me on bad days. Even if I just saw her the day before or that morning.
The best moment when I knew she was OK was the call to SS to get her direct deposit changed. SS required her to answer questions that involved allowing me to talk to her about her money. I laughed when she told her "She's my daughter, she takes good care of me, why wouldn't l want her to? " with the expression of disbelief that this person would even THINK of asking that question.
BUT..each situation is unique, YOU know your parents, BUT you may be surprised if you give choices and reasons of love and caring for the choices, and MAYBE it will be a relief on all fronts.
My dad always told me to "stop pussy footing around, spit it out" Direct discussion or delicate sidestepping only delays decisions to the emotional emergency "my mind is mush" event. When dad was dying of cancer, he knew he had no options, so he shopped around for the best deal in a funeral after discussing it with mom, knowing she would not make good decisions under stress. I was left to implement his wishes and each time I contacted those who needed to be told of his death, the first words out of each business or service or insurance person was, "Oh, he already contacted us and this is what you need to do." He taught me how to live a life and he taught me how to conclude a life.

Your parents may be hoping for someone to take the reins during the end of life.
Good luck!

Care has personal assistants

My MIL lives in Hawaii, my BIL's family lives in California, and we live in Florida. So, I truly understand your question. The way it has worked out is that BIL manages her care - finances and medical. She has 2 caregivers that take turns staying with her in her little condo in Hawaii. Any questions are directed to my BIL. Her care is being paid for by her late husband's life insurance and liquidating all of their assets. When she dies, the bank with own her condo.

In your case, it seems your parents do not need somebody to stay with them 24/7. It appears that they may need around 3 consistent caregivers that are there during the day. These folks will need to help with all meals, morning and evening tasks, run parents to appointments and on errands during the day, and keep up with housekeeping and laundry. If money is tight, your parents might get by with an adult day program Monday - Friday during the day. Caregivers can fill in for the morning care, evening care and weekends. Caregivers can be found through home health care agencies and local sources. Make sure they are bonded, insured and do your own thorough background checks.

It would be helpful to streamline your parents finances and legal issues, Make sure there is a will, powers of attorney for finances for each parent, powers of attorney for medical for each parent. Some families divvy up the responsibilities among siblings and others have 1 sibling accept responsibility as the decision-maker and contact person. Try to get as many bills as possible on automatic payments. My mom uses 1 credit card for all her finances and pays it off once a month.

I live 1500 miles away from my brother. I have all his Social Security, Medicare, Medicaid paperwork etc sent to me. As soon I as I saw there were problems I got Power of Attorney. He was agreeable when I explained that, “you know all the stuff I’m doing for you? I want paperwork that says you’re good with that in case people question what I’m doing.” That POA has been open sesame for so much—the light bill, social services, hospitals, hospice, etc. with POA I could talk with all these people. You may need to visit to see in person their paperwork, bills, so you have a better idea of what’s been going on. An assessment by a local geriatric social worker could be of great help. Sitting in on the assessment could help you get a great/sobering idea of how well they’re doing and what you need to do next.

Depending on where your parent live - there are care plan managers. I met with one early on in moms stroke when she was at rehab - she did offer a lot of the type of stuff you are describing - I just didn’t need that level as I was here with my mom. I’m in Florida so with the amount of elderly there are many Care Plan type individuals and companies.

SibInTheMiddle: I understand your dilemma. I had to move out of state to care for my late elderly mother and in with her, since she demanded to live alone. She also at some point said "No more questions" as it was too difficult for her to answer them at the age of 94. However, before she got to this stage, she used her town's COA for many things, e.g. rides to physician, dental and shopping for a nominal fee, bookkeeper, cleaning girl, rebates of house, Meals on Wheels, friends who brought weekly meals, fall leaf raking service, EMS well being check and many other things. This allowed my widowed mother to live ALONE well into her 90's.

I understand your concern and appreciate your interest in keeping your parents independent. I felt the same way when my parents were living alone far away.

At the same time, as they age into their 90s, your mom and dad are increasingly vulnerable to financial predators, severe injury and illness. Make some changes to reduce their stress and workload now, while simultaneously formulating a troubleshooting plan for all contingencies. If all of us live long enough, we likely will eventually transition to need 24-hour care.

Plan with your parents, in-person, so everyone can best see and hear each other snd so you can read their non-verbal cues. If your mom and dad are actively part of the process, they will be more content with the outcome. Even if they do not remember all the details, you will know you are proceeding in accordance with their wishes.

It’s easy for one of you to take over most of the financial responsibilities and bill paying remotely now. Doing so will help you protect your parents from financial predators. You will also be able to “look out” for cognitive function problems by keeping your hand on the pulse of their spending.

Groceries and medications can be delivered by the store - or even brought in by the woman coming weekly - pay her extra to put things away. If your parents look forward to these outings, arrange to have at least the bulky/heavy items delivered and put away. This will reduce their chances for injury.

Care at home was the choice my family made for my grandparents and parents.

When one of my grandmothers was still strong in her nineties, my parents arranged free lodging for a student of a nearby nursing school. The low cost solution (on both sides) provided my widowed grandmother with some “light” companionship and the nursing student likewise was able to save money while building her resume. Over the years, grandmother had three different students who lived there. One remained close and even visited frequently afterward with her young children.

When Grandma ultimately needed 24/7 care, my parents hired 3 caregivers, each responsible for 8 hours a day, 7 days a week. The one who was designated supervisor earned more, and created the schedule. They were responsible for everything including buying groceries and attending doctor visits. I ran into the supervisor recently. She loved this job and arrangement and has remained close to her colleagues, who also felt the same way. This set-up cost less than a nursing home and grandma was happy to stay in her home the rest of her life.

Of course, this wasn’t always perfect: there were some challenges and personnel changes. There were times the family stepped in to cover vacations, etc., but generally this was very effective.

When my late parents needed more help than yours do now, they came to live in my house, then a nearby apartment that they chose. My lifestyle allowed me to provide most of their care myself, with relief from CNAs. This worked very well for us.

Your dad’s concern for you is not inappropriate. In fact, you both feel the same, worrying about each other. He is caring about you, after all. As a member of the“sandwich generation” I sometimes was running between my parents and my kids at the same time (with ER visits on both sides). There were times I visited my grandmother and adult niece, simultaneously in the same hospital, both having had different types of accidents.

Once a parent, you never stop caring (aka worrying) about your kids. This gives your dad something to thing about besides his own problems.