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.
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.
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".
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)
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
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
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.
🤗
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.
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.
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.
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...)
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.
- 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 🤗
If no, that's what she needs. If she had one several years ago, it's time for a follow-up.
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