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My mom is widowed and 65. She wants to go out and do things, but she has a history of making poor decisions while out alone. She has an electric wheelchair that she drives from her apartment to the mall and surrounding restaurants. Recently she fell out of said wheelchair by misjudging a curb and broke bones in her legs and was stuck in the hospital for two months waiting for a rehab bed that never opened up! A few months ago she was MIA for three hours, not answering her phone. I eventually found her after panic-driving all around the mall.



My mom has had a neuropsych eval and they found nothing, but you also have to be with her for several days to realize the dots don't line up sometimes. For example, she called me today raging that she couldn't log into her account. I had to walk her though the whole escapade we made to bank to lock down her account due to some fraud on her account (that she caused! See a past post of mine).



My mom had a stroke in 2007 and has had mild judgement impairment since but in the last year it feels worse than normal. Dementia and Alzheimer's don't exist in our family, so I don't think it's that. I think it's just more decline from being a stroke victim. She also has abused alcohol on and off her whole adult life.



How can I balance my mom's Independence while keeping her safe and managing my (very justified) anxiety? I feel like I'm keeping her prisoner to protect her from herself. Keep in mind there's NO discussing this with her. I have tried and it's ended up with her screaming at me and shutting down the conversation every which way but Sunday. She also gets unrelentingly defensive about me mentioning her past alcohol use.

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Can she afford a care giver? Or occasional respite care, like one of those day centers?
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Reply to marybost
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aj6044: Perhaps she should no longer drive her wheelchair from her apartment to the mall. That sounds very dangerous. She also may need an M.R.I. of her brain, which is typically the gold standard to detect for dementia.
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Reply to Llamalover47
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You have received a great deal of really good advice.

The one thing I would add it making sure the Mall's security team have your contact information.

Second things. Start a log, date and time of day where Mum is not connecting the dots. You may find patterns, Sun downing in the afternoon or early evenings, before or after meals or medication etc. Give a copy of the log her her doctor so they have a record of it and can see if over time the concerning behaviours are increasing in frequency, duration or severity.

I did the above with my former mother in law. Turned out with her that her odd behaviours appeared shortly before an UTI was detected, or when her blood sugar was out of whack.
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Reply to Tothill
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Dementia can be caused by strokes as well as Alzheimer's disease and Parkinson's disease. You have described that she has judgment impairment that is suggestive of dementia., Please get her a referral to a neurologist for further evaluation and treatment. She may have had another stroke or developed Alzheimer's disease on top of her prior stroke.

No matter the cause, you need to put plans into action to protect her from her own poor decision-making:
1 - She will need to have a chaperone for all her adventures out of the home.
2 - You will need to make sure her bills are paid (get as many as possible on auto-pay).
3 - You (and she) will be better served if mom uses a reloadable debit card for her purchases rather than a debit card, credit card or checkbook.
4 - Create a streamlined home. She will be less likely to "lose" things or have things "stolen.
5 - Create a consistent schedule of daily activities for mom... consistent time for meals, consistent times for bathing, consistent times for sleep and wake, consistent times for "outings".
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Reply to Taarna
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Get some social services in there to monitor her safety and maybe disengage from the daily problem solving. My sister and I had to come to terms with the fact that my 96 year old mother could not be protected unless someone was there 24/7, which she would not permit. In fact she would not permit any help, unless it was one of her daughters. . Yes, there were falls and hospitalizations, and subsequent deterioration. And she drove everyone nuts with her complaining. She did finally decide not to drive (although she passed the DMV test, not sure how). We just did the best we could. Ultimately she fell, probably had a stroke, ended up at my sisters in hospice care for a few months prior to her death. But she lived her life the way she chose.

im 73 and fully intend to live life on my own terms, risks and all. I have no children and have some long term care insurance. And have determined not to bitch to my relatives. Frankly, I’d rather die than go to a nursing home.

if she fails a competency test, that’s another matter. But what distresses relatives and what a court determines are very different things (been there)
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Reply to Connie2020
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Call Adult Protective Services and ask them to evaluate her mental and physical situation. Go visit a few assisted living homes with or without her. Hanging out at the mall is not a good idea..........too many purses snatched and elder attacks (a senior center event is a much safer idea).

Place a few cameras in her home and start up the video when she is in a tantrum/tirade. This proof may assist a Geriatric Psychiatrist in treatment and placement. Perhaps there are vascular neurologists who specialize in stroke patients? Here's some info to read:

https://www.mayoclinic.org/diseases-conditions/stroke/doctors-departments/ddc-20350121
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Reply to ConnieCaretaker
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I understand that balance you want ...

Often (99.9%) logic 'discussions' do not compute.
Fears and frustration take over and a disabled person will push 'harder' to keep what they perceive they have or can do.
A couple of thoughts:
* Give her 'ranting' space and affirm her concerns / words so she'll know you hear - and understand - her.
- This is different from agreeing with her.
* Consider a third person, a professional such as a social worker or some health care professional to speak to her with you. She may listen to an outsider "professional," in ways she won't listen to you... you're too close to her.
* The hard reality is that safety limits her ability to do what she is used to doing on her own. Be with her with your sadness, as you can... "I feel sad that you . . ." I know its hard to change." I don't know if these are the best phrases or ways to proceed.

You want to convey:
(1) safety comes first;
(2) #1 means making changes;
(3) it is hard;
(4) #3 and I'll be here for you."

You may need to feel more secure 'wrap your head (and heart)" around the needed changes before you discuss with her. You need to come from a place of confidence in the decisions you know are needed. You can show / be vulnerable and share your sadness, while setting limits.

- Know she will revolt or come up with "No... I can...'s"
- You will need to say "right now, due to the stroke and its effects (go into this as much as you feel it will help vs hinder), you need to do... (for safety).
- She may not want to be safe vs taking risks... and I understand that personally. However, we must do what is in the best interest of the ones we love and are responsible for-to whatever degrees (legally, ie POA or as a daughter).

Feel your own sadness. It is a process. Don't run from it.
Renew yourself as you can and need. It is a sad time. Do behaviors (and thoughts) for yourself - buy flowers, take a walk, meditate, go to a movie.

Touch Matters
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Beatty Oct 14, 2022
Your words are wonderful. Like a gentle guiding stream.

Especially these points:

"You want to convey:
(1) safety comes first;
(2) #1 means making changes;
(3) it is hard;
(4) #3 and I'll be here for you."

I have copied them down for reference (hope you don't mind). I have needed & will continue to need this approach in spadefulls.
🤗
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Maybe it's time to have the discussion with her about your taking over her finances, to make sure bills are paid, etc. It sounds like she's at a transitional point where she needs to have in-home caregivers or be in a facility. You can also discuss her wishes with her when the time comes that she is not able to care for herself. Much will depend on her finances. All the best to you and your mother.
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Reply to NancyIS
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Maybe get a tracker device like the ones you put in luggage to put on her scooter. You may be able to hide it where she won’t see it like under the frame somewhere. If she goes missing you can track her with that.

I have found that you have to pick your battles. When my father was first diagnosed with ALZ I was in high alert about every little thing. Now, I realize that I can only control so much and the only way to keep him completely safe would be to be glued to him 24/7. He lives alone but his girlfriend is there on the weekends. I live far away from him and I don’t plan on upending my entire life to move across the county to live him him. His dignity and independence must be weighed against his safety. I know my father, and the former is what is winning out. For now. He will never, ever, agree to placement so I wait. I will have to wait for an event that triggers placement and I will have to deal with the fallout then. You sometimes have to let go of what you can’t control.
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Reply to Caregiverstress
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You can't keep your Mom in a bubble. If she has a scooter, Mom will go. Would it be possible to ask her to call you before she goes out and when she returns? Could you leave a note with your number on her scooter? This would be a reminder for her, also a number to call if she is injured or lost.
Could you accompany her to the mall, maybe once a week for a meal?
I suggest that you not bring up her drinking past, it can't be changed and only causes her to become defensive.
Best wishes and let us know how things work out.
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Reply to Chickie1
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No point in reminding your mother of her alcohol abuse or of her limitations. Assess what her needs are now and how to best keep her safe.
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Reply to RedVanAnnie
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I talk to my Mom health care providers when I am in this situation. I am overly cautious about her mobility and in general they are more open to her taking responsibility for her movement. Basically I get a second opinion because I too want her safety and less stress for me worrying about her when she is out but I can be unfair.

We negotiate on things like taking her cell phone and answering it, but there are other things you can do, like find my phone service, put a cell based GPS tracker on the scooter, and she can carry a remote fall button. My Mom was very ill and fell, and she had her fall button but did not press it. It was an important discussion we had that this button is there for her to use, so please use it. Same with her cell phone and she was lost, there is a big call me button to get help, and second time this happened she used it but when she called us, someone in the area heard her and helped her get back to where she should be.

Some days my Mom is not making any sense, something is not working and this is very frustrating for her and me, this is pretty normal for anyone and my Mom has aphasia, so just trying to have a conversation about what does not work is a challenge. Keeping routines in place is very important for us, the more routines, the less stress she has, getting good sleep and eating well seem to keep these incidents reduced. Stress and changes are very disruptive. I also try to reward good behaviour instead of focusing on negative past behaviour.

Hope this is helpful, to reduce your anxiety over someone else activities, you can talk to people, this is something that you must address for yourself. You do not control anyone else behaviours, you can provide a safe environment for your parents but if they are able and still have choices, they will make a call for help or not.
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Reply to jlastwood
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Oh my goodness, sweetheart, my heart goes out to you. You are such a good daughter.

I'm having similar issues with my sister and husband. Coping with their aging has been the biggest challenge of my life.

I have learned that certain things I say to my husband, although absolutely true, always trigger a fight. In his case, it's reminding him how much I do for him.

I'm thinking that reminding your mother of her past alcohol abuse might be such a trigger.

Take care of yourself. I try to make time for myself, meditation and various kinds of exercise (as opposed to drinking alcohol and eating potato chips, which I tried for many months...)
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Reply to EstherBernard
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A stroke can cause Dementia as can years of drinking. Not being able to reason with her is a sign of Dementia. Dementia is not hereditary. IMO its caused by life style and somekind of brain damage caused by an accident. ALZ is hereditary.

I think my Moms Dementia was from years of Hormone therapy from having a hysterectomy and the use of Statins for cholesterol. A head injury at 83 progressed it.
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caroli1 Oct 21, 2022
JoAnn, the probability of getting Alzheimer's is somewhat higher if you have a close relative with Alzheimer's. But while we still do not know the cause of Alzheimer's, it's almost certainly not caused by a single gene or specific group of genes. It is thus not hereditary in the medical use of the word. There are modifications in lifestyle that can reduce your risk of Alzheimer's. There are also people who get Alzheimer's and have no family members with it. I'm bringing this up NOT to "correct" you, but to make things realistically less frightening for someone who does have a close relative with Alzheimer's and also more concerning for someone who has not had Alzheimer's in her family, as is the case with the O.P. I think you and I had the same goal: we wanted the O.P. not to rule out some diagnoses because they hadn't occurred in her family. Thank you!
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Dementia from a stroke can coexist with Alzheimer’s or another type of dementia. If she’s been a heavy drinker, that’s another source of brain damage. With all that going on, no wonder the dots don’t line up. If you could have a discussion with her doctor or at least send doctor a note, that might help the doctor to set limitations so they don’t come from you. She’d be better off in assisted living or memory care, and you’d have life easier if she’d go. Sorry, it’s sad, but I don’t see this going anywhere good.
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Reply to Fawnby
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Regarding Mom's independence & your own anxiety trying to keep her safe. While I haven't found a simple answer or solution, I have moved to a position of;
- doing what I can
- letting the rest go

Under the 'Doing what I Can' heading was arranging an OT for a Safety Ax to suggest equipment & home improvements. This also included a Functional Ax. This concluded things like supervision was required out of home (by family or a paid aide), personal care assistance & a meal service would be beneficial.

Of course there were many refusals - I imagine will be for you too.

Under the 'Letting the Rest Go' heading I have now filed things like cancelling services, refusing hygiene, buying unhealthy food, choosing to go out without assistance, falls when out alone, falls when home without using equipment.

My LO has not sustained (yet) any serious injury.

I feel for you regarding your Mom's serious accident & the worry this causes.

Choosing between safety & independence IS hard.

I have tried to put each activity into a sort of risk matrix. How likely is a bad event & at what severity.

So without taking away or stopping activities (I couldn't anyway) I have tried to;
1. identify the most dangerous
2. reduce any known risks
3. increase safety measures

That could translate to taking a trip to the mall with Mom. Examining the pathway, choosing the best crossings with her. Trialling a support worker x 1-2 morning /afternoons per week to go with her.

Just my initial thought. Others may have more..

As time goes on, you may find you need a little sneakiness to add safety in 🤗
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Reply to Beatty
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When you say she had a neuropsych, you mean 3 hours of paper and pencil testing?

If no, that's what she needs. If she had one several years ago, it's time for a follow-up.
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Reply to BarbBrooklyn
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So sorry you have this hard situation. You have identified the problem very well - safety vs independance.

Re: Dementia and Alzheimer's. Only a small proportion is hereditary (mostly a certain type of Alz).

However, stroke is a known a common risk for dementia.

Dementia is an umbrella term, covering all the sub-types - Alzheimer's being the most known & common. Vascular Dementia is 2nd most common but less known. Dementia is just a term for damage & it it really depends where the damage is to what functions a person has trouble with.

Eg my stroke survivors LO has trouble with spacial awareness, processing & some memory. How does this plate fit in the fridge? (Not Alz - I can't find the fridge).

Very very hard for a Doctor to pick up in a short cog screening test. Can name the President, the day/date etc. But close family WILL see it.

So despite not knowing you or your Mom, I totally get that you will see 'holes' in her thinking.

Vasular Dementia can be caused by any of the reasons for stroke (a vascular event). Blocked arteries, high chol, micro brain bleeds.

Important to know, a person will not know or feel this. Cannot feel this micro stuff in their brain. Therefore from their perspective, THEY are normal - YOU are the crazy one!

This *lack of insight* is called Anosognosia. Have a look at the care topics for this & see if this helps you.

https://www.agingcare.com/topics/295/anosognosia/articles
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