My 80 year old mom has dementia progressing. Every year she goes to Florida... Any advice?

You know, there comes a time when we must accept that our parents are not independent any longer. Just freely admit that your mom is at a point in her life that she is relying on others more than she did before

It is unrealistic for your mom to ask you to have faith in her. She is not capable of doing what she once could for herself. She too has to accept that she needs additional assistance.

You have the right to refuse requests from her or your family members when something becomes too much of a burden to you.

You have your own issues to contend with. Why should you put your own needs on hold because your mom won’t completely accept that other family members or you can’t devote their entire lives to her?

At some point in time she will have to agree to either hire outside help or go into assisted living. How do you feel about this deep down in your heart.

No judgment from me, just trying to understand where you are at the moment from a practical and emotional point of view.

Best wishes to you and your family.

Florida invented senior living. There will be condos where your mom will get transportation, social activities, meals and cleaning services. She can pay for services like medication management. Maybe your sister in law could look around for one?

If she finds an affordable one, maybe you could approach Shirley's family and see if they could both go to a more supported snowbird situation.

Are resources available to hire someone to come into the home more often, perhaps 3-6 days a week? The care giver could not only take care of your mother's pill box but could also provide transportation for shopping and other errands, maybe cooking or housework help if that's needed. Perhaps take your mother to the airport if she decides to come home early? Can the car be disabled or stored when your SIL leaves? Is there a cab company you could arrange transportation for dinners out? An elderly couple near me doesn't drive at night and uses a local cab company to take them to dinner and return in 90 minutes to pick them up. It sounds like your mother has been open to letting go of driving so if you arrange/provide transportation so she doesn't need to drive, she most likely won't. I would still recommend removing the car in some fashion when SIL leaves.

I suggest you look into a fall detector with GPS and a friends list. They can be setup to call the friends' list and allow a two way conversation and/or call 911 if no one on the friends list makes contact. Many models allow you to track the GPS location in real time from a smart phone app. Knowing she can get help from basically anywhere if she needs it will probably be very comforting for both of you.

My mom is in a similar situation. She is heading to Florida for a few weeks to stay with a friend. I understand she will mess up her pills. If she dies in Florida my mom will die happy. I would rather her be happy than home alone in the cold north...

I tend to agree with Bowgirl. If she wants to attempt the travel, let her try. Support her attempts—but I would insist on the meds monitor if you have that available to you.

I have the exact opposite situation! My Mom (80) has basically shut down on living...she doesn’t seek out her old friends or make any efforts to find new friends since my Dad’s passing 2 years ago. Has no interest in life (except the world news and politics—nothing personal) and it’s agony. I would give anything if she’d go live with a friend for a month and have some fun.

Walker, I'm weighing on the "still driving" issue. If you or anyone else has reported (or witnessed) her driving to be questionable (even once) you must remove the car (not just disable it) and anonymously file a report on the DMV website for her state of residence. The state will send a letter requiring her to come in for either an eye or road test. No one should drive her to this appointment. If you have a doctor's letter stating she shouldn't be driving or has dementia, include that in your report. I've done it for 4 seniors.

My uncle should have had his license and car removed but no one had the courage or wisdom to do so. He went through a red light and was broadsided. It killed his wife and dog and injured the other victims. Yes, victims. If you have knowledge that your mom should not be driving you are complicit in anything that happens since you are the one with the knowledge and power to stop her. Please please stop her from driving immediately if she's a danger to others and herself. And make sure her other relatives and friends know not to enable her in driving. Yes, she will be upset until she adjusts. People who are injured or killed won't adjust.

The many times I've been in south FL visiting my elderly aunts the nightly news often reports of spouses backing over their LOs in the Publix parking lots and injuring or killing them! It sounds funny but isn't because it's often totally preventable. Thank you in advance or taking action to transition your mom out of driving.

Maybe think about selling condo & get her into Assisted Living while she will still be accepted..? Since she will decline as each year passes...& nobody lives with her. She can fall & nobody will know until once a week “caregiver” comes in. Just because she fills pill box doesn’t mean your mother will take them...or at correct time...or forget what day it is & overdose...
Good luck & hugs 🤗

anonymous997909, Sometimes the posters on our forum reply from their experiences much farther down the road in age related declines and dementia. They don't really mean to provide distressing advice, but regrets from their own experiences make them want to warn others off the difficult parts. Everyone's journey with failing physical and mental health is unique. Some seniors with cognitive declines fight hand and foot to keep driving; others give up the keys easily. I'm sorry the "extra" advice for what the days ahead may hold has increased you own anxieties.

From the information in your post, I see your mother as fairly early in her cognitive decline, maybe even just MCI with no dementia. Not everyone with MCI will develop dementia. My own mother was able to function fairly well at a similar point with MCI and short term memory deficits, just needed my support for a few things. I think your mother could do well in FL for a few weeks even if her friend doesn't make it too. I encourage you to have someone eyes on check on her a little more often than once a week and/or use a GPS fall detector so you both have a little more comfort. Also the GPS fall detector is very worthwhile in aging declines for any elderly adult who spends time alone. The sooner a LO get accustomed to using a fall detector, the more likely he/she will actually be wearing it if it is ever needed.

I understand your statement about having faith in your mother. I felt the same way for a long time - and that confidence was fully justified. The time did come when my mother's short term memory issues meant I could no longer have that same faith in Mom's promises. Not because my mother's truthfulness or loyalty had changed, but because she simply could not remember what she had promised long enough to keep those promises. You need to watch out for that day because someday it might come around. In the mean time, enjoy the present day and the level of functioning your mother has today. As the expression goes, don't borrow trouble it may be coming around soon enough.

Anonymous,

Thank you for your response to me. I appreciate that you shared this information.

Like I said, no judgment from me. You are certainly welcome to disagree with me. We are all entitled to our viewpoint and I respect your feelings and any decisions that you make. All situations are different.

I appreciate your gratitude to your mom. May I tell you, the gratitude goes both ways. I know first hand. We adopted our first child and while she too has thanked us for her ‘forever’ home, we have told her that we are the ones who have been blessed with a beautiful daughter. We had a biological daughter several years after adopting our first child. They are both our miracles!

Having said that, I do not ever expect my children to care for me as a primary caregiver.

I was the primary caregiver for my mom for decades, 15 of those years were in my home. It’s a heavy load!

My mom did not ask to move in. I offered. She lost her home in Hurricane Katrina and needed a home.

Of course, I took mom in. Plus, it was no longer safe for her to be alone. She has Parkinson’s disease. So, I totally understand your concern for your mom. I had no idea how hard it would become. It was an emotional time for all of us and I did not know enough about Parkinson’s disease at that time to realize the care that she would require as the disease progressed. There is no cure for Parkinson’s disease.

You have your hands full with your mom’s medical situation. I have enormous empathy for you and your mother. Of course the choice is yours as to how you wish to handle your specific situation.

I am not sitting in judgement, nor am I suggesting what you should do. I am sharing what I have learned in my own journey and if it helps I am glad. If it doesn’t apply to your needs I respect that.

I am not sure how to word my feelings about your faith in your mom but I will try to explain what I feel. I had faith in knowing who my mom was before her disease. That all changes when a neurological disease takes over. They no longer have the control over their behavior that they once had. Does that make sense to you?

You state in your profile that your mom has ALZ. She is no longer the person she once was. She never will be and will continue to decline. That totally stinks and I am so sorry that she has to live with this awful situation.

It breaks my heart to see others suffer. I can tell that you have tremendous compassion which is a lovely quality but you also have to be realistic and practical.

I am glad your sister in law will help explain medical information to you because having knowledge will help you know how to best prepare for her care.

Personally, I don’t think you are abandoning your mom at all if you seek care for her in a facility. I have already told my husband and daughters that is what I desire if I lose the capacity to care for myself because in no way do I want them to devote their entire lives to me.

Be honest with your mom if you end up not having any other alternative but to place her in a facility. Tell her it is because she is requiring care that can only be met by a professional staff. You can still be her strongest advocate.

My godmother had ALZ. Her sons could not care for her. I went to visit her in a facility. Is it ideal? No. Is caregiving at home ideal? No. Not all of us are blessed like my grandma who died with no suffering. Her heart just stopped from old age. She prayed for that and I am glad that she did not suffer.

Whatever you decide, I wish you the very best. It’s so hard watching a parent decline.

Please lean on this forum for support. We care. Let us know how you are doing. Sending a bazillion hugs your way 💗!

Anonymous, I agree with you, I am sorry that you feel this forum is causing anxiety. I have been on here over 5 yrs. first caring for my bedridden mom,93, with multiple health problems before she passed on 4 yrs. ago, and now with a very stubborn MIL, 89, who doesn't want outside help. People tend to give advice that works for them, not realizing our full anxiety and that our situations may be very different from theirs. I had a bad relationship with MIL that has now been mended, which some did not understand, Because I did not want my husband's heart condition to get worse, I tried to mend the relationship with my MIL. I have been "chilled out" and ignored when I post, enough to know it is time for me to try to seek support elsewhere. I hope you can find the support you need. I wish much strength for you in your care giving journey.

Your sister-i-law is POA, You need to converse with her and really get HER involved as the Leagle Eagle. Time for you Both to do something now for the upper hand, It gets worse down the Florida State Line...

i know you’re looking for advice but after reading all your responses, I think you need to trust your instincts. You sound like a fantastic caregiver to your Mom! It’s a rough road with many challenges but you seem like you have a natural ability to handle these situations the best way possible!

Caregiving is very hard, and it is very stressful. Cognitive decline will get worse. Sometimes this mental decline happens suddenly and that becomes their new "normal" -- one single hospitalization can cause delirium (from the change in routine), and the damage is permanent as they never recover from it. Driving is very serious, and people with cognitive decline should not be doing it. Moving automobiles are like moving missiles so another probable situation if she is still driving with cognitive decline, she will either get into an accident, hit some pedestrian or bicycle rider due to slower reflexes (get manslaughter charges), or drive somewhere and forget how to get home becoming a "missing person" for the cops--happens all the time! The POA needs to get involved with her care seeing an eldercare attorney including estate planning, pre-planned funeral arrangments, sharing bank accounts. Since you are not POA you have no legal say about those matters if your mum can no longer make sound financial decisions, and talk about advanced directives. What does she want to do if she is no longer able to eat? Do everything? Feeding tube? Just keep her comfortable and hospice? Those things NEED to be talked about while she has lucidity, and that that advanced directive IN WRITING. Who is her medical power of attorney--that is not the same as a durable power of attorney, and this too needs to be in writing, which an eldercare attorney can organize.

One of the main tenets of Alzheimer/dementia rules is re-direction--- that involves less talking about issues that are basically unsolvable by people who are afflicted with this disease--- so the logical thing is to change up and find a different approach-- so you send her to a place where she gets care-- even in Florida--- there are assisted living facilities or even Independent living facilities-- like Holidaycare where they do have visiting nurses who come in daily. So be courageous ( encouraged) and let the Good Lord move you in the right direction. Do not let circumstances get the best of the both of you. And if you do anything-- don't let the POA thing get in your way-- I have always believed it is a cheap trick of the government to tie our hands and keep the medical community unaccountable like in socialist countries.

I agree with others who have posted that you must trust your instincts. I think they are "right on target." Also rest assured that you are a wonderful caring daughter - so try to get your head past any concerns/guilt in that arena. It is simply not practical for you to "move down" to Florida to be with your mom at this stage. Give yourself a break in the guilt category so you can formulate a plan.

So with that - what might you do? If you trust your instincts, I trust them. I would follow up with your own recommendations and put them together as a plan. Those being
- Your family - or you - get a Florida caregiver in place. Don't debate it. Perhaps you do that by calling the condo management, local churches and get some names. In Florida - there are a lot of people needed in that capacity and you should be able to get someone strong. Get someone that others in the condo might also know. Someone who has worked with a previous or current tenant.
- Ask the caregiver to update you weekly by email or phone - with a sense of how mom is doing. Create a set of areas you want her to comment on / to observe. Such as
- condition of the condo - is in neat or in disarray?
- determine whether meds are getting taken
- does it appear that there is food in fridge and that your mom is eating ok
- also try to find out (through the caregiver) who might be a couple of trusted people in the condo who might help provide support or intercede if necessary. Let's call them your "distant observer team." If your mom has been going down there for 25 years then people know her - at the condo complex, at the local store, etc. Find just a few of those folks and share with them that you have a couple of concerns regarding your mom and invite them to please contact you immediately if they observe something. The caregiver who is down there can help you identify who these "trusted observers" might be. After a fall my mom took in her neighborhood I shared with a few of them my concerns for my mom's safety. I wished I had done that long ago. They are an amazing set of supportive eyes for me when I am not at my mom's house.
- Depending on the feedback you get weekly from the caregiver, you can decide whether you a) need more hours of care for her b) need to intercede and get her into assisted living c) bring her home to create a plan of next steps. So adjust as needed week to week.
- I also suggest that you take the car away - as hard as that is - or if you need an intermediate step - have the "car housed/ parked" in some location where your mom might not be able to access. Yes, I'm suggesting that the car be hidden from your mom but that you get a plan for her to taken wherever she needs to go. Have caregiver take the keys or one of the "trusted friends" you find down there and tell your mom - that that x individual will either be her driver when needed or will take care of the errands she needs completed. All your mom has to do is contact that person. I wish I had done that with my mom BEFORE she had 5 consecutive fender benders and one serious accident. retrospect, I should have just interceded. She would have been upset but better than . .. . Get all family members on board with this suggestion - because whoever takes the car - becomes for the moment the "bad guy." Maybe the sister who is POA can do this. If this suggestion does not work - you might have to just have the car taken away. If you can't bring yourself to do that - maybe you take it away and tell her it has to be repaired - never get it back.

- Final, comment - I hear and feel your pain of possibly telling mom she can no longer go to Florida - as you say that would break your heart. I've been dealing with my mom's dementia for over 12 years now. I am her primary caregiver. I too get down, like you, when I picture how my mom is changing and how some of the things she loves to do. Then I recognize, I'm actually getting more upset than she about that component.

NancySK has some great ideas about stepping up the caregiving help your mother gets while in Florida. If you could arrange enough support for your mother while she is there, maybe she could still go to Florida a few more years.

Can you contact a Division of Aging in Florida, either state and/or county-run? They might have some good suggestions in terms of activities for seniors (that sometimes include transportation), part-time caregiving recommendations, etc. My mom lived in Florida, but she came up here (to Georgia) where my husband and I live, shortly before Alzheimer's came a-calling. She moved in with us shortly thereafter. She, too, liked to drive. Luckily, her car stopped working. I drove her around even before that, but when the car stopped working, it secured my position as "chauffeur." Long distance caregiving is hard, so is caregiving under 1 roof. We all just have to make the best calls we can, regarding their care. I think a "call" to a Florida agency might help.

Hello Caring daughter; Thank you for sharing such a common situation in many of our seniors,their families,friends and community.
I am a NYC Home Health Aide since 1982 and my first client was my aunt.I DO CAN REALY to your situation.
I'm consider my self a SENIOR COACH for SMART EXECUTION OF IDEAL outcome.I Currently work with an Home Health care agency since 2005.
My Advice is since you are the main person to look after her is to go to Florida and acsses the situation with your own eyes.
Then look for available centers that she can joint for activities and trips.so she won't feet the need to use the car plus she is having fun also if her friend wants to accompany her that it's a plus.We all need a friend.Bit only after you can see the daily routine of your mom.You can visit a center with your mom and come to certain agreement.Check for volunteers in every state there volunteers.You can call the Alzheimer's or dementia organizations in FL.Many people now are very involved in programs like in hospitals and privated sectors but they can incorporate some kind of assisting programs.I am currently working with a client that suffered from depression and dementia.Never like to do anything.When my company took charge of her...THE day I started she took a shower,nails,music therapy...It took me the hole 12 hours of my shift but all tasks in the lab of care were done.I use a LOT of negotiation.Lile if I need my client to shower I put shampoo on her hair and then walk her to her bed.I tell her ok we need to take a one hour nap then we NEED to remove the shampoo...that's ALL...ok...she says...OK.
Then I return in one hour sit her inside the bath tub and buala.SHOWER IS DONE.So there's many ways to handle our seniors.Just concentrate in what can benefit both...Your mom and you.
Thru negotiation and fairness.Hope all is well.Keep us posted.Good luck

You did ask for advice, and so far everything I read was that or relating how their journey was. You can take it or leave it, your choice.
"What do I do? Any good, wise words I can throw her way?"

Every journey with dementia is different, as different as the type of dementia and the person's personality. We can only share what we experienced or offer ways to ensure her safety and health.

Our mother's issues started with short term memory, forgetting what she said/did. Repeating statements/questions/activity. She was living alone at the time. My parents had a condo in FL and went every winter. They sold it before dad's decline. After he was gone, she made shorter trips to FL. I believe the last one she cut short due to vision issues, which was macular degeneration. If she had interest in going I would have supported it in the early days, but as it progressed, no. She wouldn't have the capacity to understand she needed help or how to seek it.

She had a few accidents prior to me realizing the cognitive issues (no injury), but after more issues, we had to take the car. YB did the talking/taking, but I got the flak. She tried to argue to get it back, but taking it was best for everyone. We brought aides in, to check on her and see she took her meds from a timed/locked dispenser (she wouldn't hear/see it, often needed prompting.) After a month or so, she refused to let them in.

While she seemed capable of caring for herself, minimally, I had concerns. She was not cooking, relied on boxed crap and frozen dinners. We installed cameras, to monitor in case she wandered off and to monitor the "help". She started odd OCD behavior at night, checking the door, sidelights, dishwasher and LR, repeatedly before bed. This was a few times/weeknight and became a nightly 1-1.5 hour marathon. We kids discussed and decided that for her safety and well-being, she needed to move. You could ask her to do something, she would agree and promptly forget it. It is good that we made arrangements, despite her strong disagreement to moving anywhere. Days before the move was planned, she injured her lower leg and developed cellulitis. She didn't have enough sense to understand how bad it was, tell us or seek medical attention. If the move wasn't planned, she could have died from it! BTW, bros offered their homes and she flatly refused that too.

Now is year 3 living in MC. Initially (9 m) she would hound YB when he visited to take her back to her condo. Then she forgot the condo and asked about the previous residence, from 25 years prior AND asking about her own mother, gone 40+ years now! It took a while, but requests to leave eventually stopped. For over a year she was fairly "independent", self-caring and mobile. Then she wanted a walker, so I brought dad's old one for her. That was fine until recently - now she won't stand/walk without help. Part of it is fear of falling, part of it is not walking enough to maintain her ability (she spent most of her time reading papers, magazines, sale catalogs, same as at home, so she lost strength.) PT ordered but she refused to work with them. Memory has regressed further, but she is better off than most.

You can only do what you can do and what you feel is right. The car issue is tough, but you could request a driving eval. IF she fails this, the car must go and alternate transport must be set up. Cameras in her condo can help keep eyes on her and bringing in aides can also help. She sounds like she is in the early stages, so this should be enough. If she doesn't want to go to FL again, so be it. You could suggest a short trip, and accompany her, like a mini-vacation, to get away from the cold. Whoever sees her most needs to be aware of what to watch out for and how to address her needs as they become more involved. As noted above, every person progresses at a different rate and in different ways. We can only address what we observe and try to work it in ways that preserves some dignity for the person.

For your peace of mind and others safety, have your Mom take a driving test to see how her reaction time is, might have to get doctor's note for it. Get info on Uber, Lift or other public transporting services for area where she will be. There is also many places that will deliver food from grocery stores or take-out that she might not need to have a vehicle at all. Also, think in her best interest to have someone check in on her more than just the 1x week for her meds - a lot can happen in a week. If she has been going there for so many years, maybe have someone from a church in area or senior center help out and be a companion.

You are all over the map with your mother's emotions and condition. You are all over the map about your feelings, responsibility, family and feeling of guilt! ALL OF THIS HAPPENS TO MANY PEOPLE IN YOUR POSITION. My name is Dr Jack Grenan I am not an MD but I hold a PhD in Hypnotherapy, MS Psychology and MA Education. My family took care of my awesome Gramma at home until she died from Alzheimers and across the hall my father was dying from cancer both for 2 years and they died 1 week apart. So to a degree I understand and also counsel others.
First do not let your mother drive UNTIL she has a complete physical and mental assessment! Next get a lawyer and go over who will be legally responsible for your mother and her monthly and other financial responsibilities. Get you siblings involved!!!! Also talk to others who you trust, pastor, family, friends, Drs nurses.....Pray IF you are a God person, for help and guidance. In my opinion your mother should NOT be home alone no matter whee she lives, based on your comments.
You need to gather info on her assets, bills, income, insurance policies.....and after she has all her medical visits you should have a better idea what she can do/should do and what you and others should do.
You only have 1 mother and everyone of her children has a responsibility to assist her, but everyone will not live up to those responsibilities.
LOVE means that you put your moms priorities before your own within reason.Here is my email for help I am a Christian who survived death, sepsis a coma for 4 months...... I just help people who ask for it and/or God sends my way.
With Prayers and Best Wishes to you for caring and helping your mother!
Dr Jack Grenan jackgrenan@netscape.net

I am in agreement with DrJackGrenan as far as you being all over the map. IMHO, your mother should not drive a motor vehicle.

Do not let your mother drive.
Would you allow her to drive YOU while you are sleeping in the car? Trust her driving??
Do not create victims.
It is enough hardship to deal with a LO with any type of Dementia. It eats your life. Just think it will pass. Hopefully you will have no regrets.
If she is in the decline path, you need to take care of her and make her decisions (without her knowing that it is not her making the decisions). Sorry, if you have no time for respite, that is it. Move on. Take mini-breaks, move on, keep going, do your best.....for this will pass, and...….hopefully you will have done all your best!!

May God Bless you and give you His strength and wisdom.

Her trips to Florida may take a different form in the future. My parents had been wintering in Florida for years. They did not go to FL last winter because my mom had a hip replacement and could not help my dad with the prep and van loading... I missed visiting them in FL but saw them more in their NJ home. It was a blessing they did not go. My dad had a massive heart attack on April 1 at 11:15 am. yep he would have been on 95 headed north.

A younger friend of my moms invited her to Florida for 3 weeks this year. I bought her a plane ticket and signed her up for a wheel chair to get to and from the gate. My mom's friend has been widowed a number of years and has introduced my mom to the senior center, lunches with the ladies etc.....

Yes, my mom needs some help, Kathi is apparently thrilled to have a friend in need. Maybe your mom will be so blessed. Keep open to options. We are also taking mom on a cruise.....

if your mom has any sign of dementia don't let her drive. It can cost her or someone else's life. It can happen suddenly without warning. If this happens and you knew about her decline and just keep on letting her drive...well.

Time for Mom to give up her car. I’m sure it will be a struggle, we had a horrible time with my mother and she was rarely alone. But the minute she was she’d have some urgent errand that she had to take care of before my Aunt or I were there to drive her. She was literally alone from noon on Friday to noon on Saturday and from 5PM on Sunday to noon on Monday. Had to finally get her Doctor to send a letter to DMV that she was not safe to drive.

We have friend who has split his year between MA and FL for years. Lives in Assisted Living in FL and has a place next to his son here. For a few years he kept 2 cars, one in FL and one here and flew back & forth. Then he used the Car Train and his son or grandson would drive him from DC to MA, when that became too long of a trip his grandson met the car in DC and drove it up while grandpa flew from FL to MA. A couple of years his SIL drove the whole way and is daughter flew with him. Last year when he got back to FL he gave up his car. The Assisted Living has a van he can ride to get to the store and attend planned outings. His daughters and one son live nearby in FL and his other son had now retired and still next door when he is here.

Take away the car. She shouldn't be driving for the safety of everyone, including her.
Our 85 yr old Uncle (Alzheimer's) living in Bullhead City, AZ. Drove to visit his wife in the hospital in Las Vegas..ended up in Los Angeles, realized he was lost, made a U- turn in the middle of traffic causing an accident, totaled his car! Thank God no one else was injured. SIL b/f had to fly from WA. To pick him up from hospital, rent a car to drive Uncle back home AND STAY WITH HIM till Aunty released.