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anonymous997909 Asked January 2020

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

She owns a condo there. She has a friend, Shirley, who's 84, can't drive, but she comes. They live down the hall from each other. They have both been going about 25 - 30 years now. They stay until before Easter. This year though, my mom has been letting me drive more here at home and I've been running more for her. I also lost my dog last 2 years ago so that has freed me up. Anyway, my mom is in FL with my sister-in-law. She has a new pill machine. We did ask for a caregiver to come in and take care of it weekly. My mom goes back on forth from it's okay to it's not okay. When she met the woman all was well until the lady mentioned she would do this, that and the other thing. My mom shut down, then got mad at my sister-in-law. We have a return ticket for her this year as her friend Shirley has not called nor made a commitment to when she is going to Florida. Last night my mom called and said she was coming back, I said okay. This morning she called me early and we went a couple of rounds regarding this. I basically ended up saying if she was staying the caregiver comes in once a week, at least, to check the pills. This is mandatory. There is NO wiggle room. No flaking out! If you call me in a week to flake out, I will tell you that you are coming home then. She told me she wouldn't drive. I told her, in three days when you are bored you get in the car. I know you. And, I am thousands of miles away. There is nothing I can do. She asked me to have faith in her. I told her I did, yet she has to have faith in me as well. We came to a standstill really. I told her to table it and wait another day.


I see she needs more help this year, yet she's holding her own. I don't think she will be going next year at all and that will break her heart. I am praying and asking the Lord for help on this. I have started to get my support group in place as things progress to help me. I think I've done okay with two pastors and few friends and a counselor. It's been a struggle. I have other siblings. My sister-in-law helps the most. She is POA. I am the main caregiver. My mom relies on me. I can hear ya all saying why don't I fly there. There are several reasons; one, I don't really care to, two, the minute I fly there I will never get a moment's peace as my family will say we are busy, you go do it!, three, I have vertigo and back/neck issues from car accident. So several. I need a break too!!! I tried to voice this to a family member. I was basically shut down saying I was playing the "poor me" card. Umm... okay. Moving on. So, I can't force her to come back. Is she safe to drive? Here at home she could make the little trips; bank, hairdresser, Walmart, Walgreens, bank. It's been almost a year since she's been there and my sister-in-law has been driving, not encouraging her to drive. I get that, but then what is she going to do if she leaves my mom there? I just don't know. What do I do? Any good, wise words I can throw her way?

bowgirl Jan 2020
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...

Geaton777 Jan 2020
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.
Kickinrsd Jan 2020
I have so much empathy for all you and your family has been through. I salute you for taking your deeply painful experience and using it to help prevent tragic and unnecessary losses in other families.
You have spoken aloud words that most are far too fearful to broach. Taking the keys from an elder is a topic most avoid as long as possible for fear of “upsetting” or “angering” the person who should be removed from the road. Too many never consider the issue from the side of actual safety as you have here, rather they only look at the emotional aspect.
Than-q for taking the time to share your story. It has the power to impact the decisions of many. As difficult as it likely is to share, I hope you continue to do so.
I hope you have found peace and are able to share this from a place of healing.
With gratitude and grace! XO

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NeedHelpWithMom Jan 2020
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.
anonymous997909 Jan 2020
To understand where I am at the moment you would need to be in my shoes. We all walk a different path so I'm not sure my shoes would fit you...

I do have my own issues. I agree my family should step up. And, I agree, I have to ask for help. Easier said than done. Still a WIP on that one!

The little I've learned though is that people with dementia cling and only want the people in their lives that make them feel good or they could feel safe around so even though the would try to help my mom's main safety place is me and my SIL. I've realized that. And I'm doing my best. I try to look at, as I'm a shepherd and she's the lost sheep. Just trying to keep her safe and outta trouble for 5 minutes!

Faith. I agree to disagree with you there. I have faith in my mom more so than the rest of my family which has kept her and I going through the toughest of toughest times. Even now. My FAITH STANDS. I've expressed to her that she is going to have to start bending. She asks me what that means. So 6 months prior to going to Florida you will need someone in there to help with the pills. She told me then I'm not going. I replied okay, let me put it to you this way mom. You can either go to Florida this year with a little bit of help or stay home where it's cold. If it were me, I'd be in Florida, but, hey, that's me. I cannot tell you how many times I had that conversation with her just to get the door open a little bit and enough for it to be this year. It's a lot of repetitive. I get on auto pilot at times. Hence me telling her the caregiver for the pill machine is mandatory. No discussion.

I'm cool with hiring an outside person to help my mom with her pills in Florida. I am ALL for it. It's a good thing. It's getting complicated. It's moving beyond on what I can do. I know what I can do, what my gifts and talents her and hers and where we need to let someone step in. My SIL is a nurse so she helps in areas that I can't. She may need more care when she gets home so we will have to see how things are then. At home she has me and my SIL. I'm not sure what will happen when she gets home. I've realized I will have to let of some of the control and I don't even know if the word is control. I know my mom better than anyone, even as she is progressing. As I'm thrown off by the things she's doing and the new actions, I still sense her being. I know that as the dementia progresses they may not know things or even who you are, but they know your energy and whether you made them feel good or bad. I'm sticking to that!

Another thing is, I was adopted. So if I can help her the way she helped me get out of the craziness and abuse I went through as a child, I will do what I can for her to the best of my ability. And, I keep asking for guidance from God as to when to step back so that I can be okay. This is really, really, really hard to step back. It means letting go of her, how she used to be, how we used to be as we start to separate to each go our own way. Lord have mercy.

Lastly, I accept things have changed. She needs more help. I'm trying to let some of it happen naturally, yet some of it can't. Every parent is different. Every situation is different. I can only speak from my shoes. I see it every day. It gets pointed out to me whether I want to see it or not. Some days I can handle it, some days I cry like there is no tomorrow. I know that when she gets back she will be different as well. I will have to cope with that to see what the next step is. This year has been weird for me letting her go to Florida... I still can't put my finger on it. Deep down, if she needs help I can't provide, I know God is already working my heart with that. He's got this!
Alicew234 Jan 2020
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.
anonymous997909 Jan 2020
I think this will be "the girls" last year there.

You are right Florida is great for Seniors. :)

Shirley it's tight with her money. She has the income. She's just that way. We would like to talk to Shirley's family, but my mom forbids it.
CaregiverL Jan 2020
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 Jan 2020
I think this forum is supposed to be meant for good, but at this point I feel more worried, stressed, and full of anxiety from all of this. This isn't for me.
DrJackGrenan Jan 2020
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

NeedHelpWithMom Jan 2020
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 💗!

TNtechie Jan 2020
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.
anonymous997909 Jan 2020
My SIL did have a caregiver come in this week to meet my mom. It went okay re: the pill machine. Then the caregiver mentioned all the things she could do and my mom shut down and became very angry.

We did think of disabling car. If you knew my mom though, she'd find a way to fix it. And, yes, she's still able. ;) God bless her.

The fall with GPS sounds interesting.

She has a car that I can check its location.

Lots of good advice here.

Thank you... all of you. :)
TNtechie Jan 2020
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.

anonymous178609 Jan 2020
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.

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