Assistance v. Autonomy: How can I edge Mom toward self-advocacy and initiative?

When my dad died, I reluctantly took over mom's appointments and getting food to her etc. Slowly I discovered she didn't need all the appointments requested by various Dr's. Also, mom took the little Senior bus to an appointment. Yes, we call WAY in advance to schedule without issue. She took a cab home. I lived in another state. Moving forward 3 years past dad's death, mom couldn't, wouldn't, didn't make a plan for where to live when she couldn't live by herself at 90. I had to make the plan. She complains, is nasty and mean. I remind her she had 20 years to make a plan and didn't. She doesn't like the plan I made. Not my problem. By the way, when we have to manage their life, they are not living independently, rather by themselves with help.

mcshea02: Your mother is a very recent widow. Perhaps now isn't the time for prompting.

it's not an easy thing, when a parent is forgetful or never had to really take care of themself! I'm sure though, you would want to be with your mother, to hear what the doctor has to say. If you are looking for help, you might ask a trusted friend or family member to help you out, esp, since she is having some forgetfulness!

is she depressed, sad,angry, dr/ drs evaluations could be necessary.
Was your Mom always like that or it just happened recently due to Dad’s taking over and if so she was relying on him too much, did she agree with his decision? Maybe and I am saying that kindly she acts like that with you? You are not the first one to have as you say prickly relationship with Mother, many of us find it impossible to deal with them.
If she lives on her own she must be able to make certain decision, i.e. bills, clothing, what she eats, basic things.
Ask her about her needs/ wants or write them down.
Appointments, you can reverse role, child/ parent make it to be fun, like we buy nice frames for glasses, and then go for lunch/ coffee or something else she wants to do.

So if mom doesn't drive, that might be where the first issue begins. She really can't set a certain date without knowing if driver can do it that day. The other problem is that this sort of thing was never her problem.

Whoever is going to take her to the appt needs to make the appt. When reception says 'is this date good for you', driver could say no - or driver could say if it's on a Wednesday, I need afternoon appt, etc.

Just take note when she says she needs to go to dr and make the call for her to set it up. One less thing to prickle the relationship!

How about hiring a "Visiting Angel" to drive mom to appointments and schedule them, too? That takes you out of the equation and frees you up from engaging in frustration. We always book appointments at the end of a visit, so there's no issues with scheduling later. Nowadays, they have Geriatric Specialists and Geriatric Psychiatrists who can prescribe meds that improve one's quality of life.

As for bills, "autopay" is the only way!!!!!!!!

Looks like most of us ate on board with your taking over her appointments and just announcing when they are and what time you will pick her up.

Her patience and attention span might still be disrupted by the recent death of her husband. That is a very disorienting experience and it often takes several months to begin to organize one's day-to-day life. Step in for now and manage her appointments and other essentials. If her anxiety and lack of action are part of her grieving, she will begin to come back to herself after a while. Give it time, though--several months, at least. Do not rush the process and do not place any time limit on when she should be "done" grieving.

If this is temporary, she will improve. If it's Dementia, symptoms will get worse and you will need to take more control.

I have managed several cases where the Doctor or Nurse from the relevant clinic would call and tell the patient that they were scheduled for an exam or some other procedure at a time certain and remind the patient to be on time and bring the latest Medicare or insurance card. {of course this was the result of my earlier contact with the clinic!}
It's almost as if God has called and commanded it!

What would happen if you said "Mom, you have an eye appointment on Monday at 3:30"
No talking about it. No discussion about it.
If she had been used to your dad making all the arrangements it is possible that he was covering up her cognitive problems for many years.
(I have read that some are able to hide signs of cognitive decline for up to 10 years before it is no longer possible to hide them and others notice)
If this is what is going on you are going to have to accept that there is no self advocacy or initiative. You are going to assume the role of Geriatric Care Manager.
If mom is living alone this may no longer be possible and plans to be made for Memory Care or if it is very early Assisted Living (but there is the possibility that she could wander away) Or residing with a family member. (not an easy task)

Executive function is one of the first things that go with cognitive decline.

It isn't necessarily that she doesn't want to do things, it's that she can't do do them. Knowing your glasses aren't working properly and scheduling an appointment to get that corrected are not in the same category of function.

Your dad was probably compensating for her loss of abilities and you didn't see them.

I would get her into her doctor, you will have to set it up and make sure it happens. Go with her and get her to sign a HIPAA release so you can truly advocate for her. Probably a referral to a neurologist would be in order.

Unfortunately there are steps required to intervene. Getting a diagnosis is the 1st one.

From what you have said, don't frustrate yourself by trying to get her to do things she is no longer capable of.

It doesn’t sound like life saving appointments. So…

A. Let her be. Ignore her ruminating. When she’s serious, she’ll act. (You can’t force her to be responsible and ruining a relationship while spinning wheels is counterproductive.)

B. Contact her county health dept or 2-1-1 for help with transportation if you can’t take her. Make an appointment and see how she reacts. If well, there’s a solution. If poorly, see A.

Get a diagnosis of her health. Sounds like dementia may be the issue.

Probably kinda two-fold issues overlapping. The fact she is getting dementia (you cannot reason or use logic once dementia starts) and the fact that your dad was the one facilitating everything. Now she doesn’t have him, she has you and herself, and she’s not happy with that.

Have her checked to see if it is indeed dementia first off. And to answer your question, I don’t think you can “edge her towards self advocacy”. It’s going to be all on you, her Drs and possibly case managers and either memory care staff or nursing home staff. Or home care staff if that’s what you’d do.

There is no cure for dementia. No medications that do much. However if she is diagnosed, possibly ask the Dr for anti anxiety med or anti depressant. They may help with her overall mood.

I know what I just wrote doesn’t make your day. Believe me, I get it. Get your mom diagnosed so you know for sure what your dealing with, and start making plans for her care…whether a placement somewhere, home care whatever. Get power of attorney also. Speak with an elder care attorney and they will guide you through. Lots of paperwork and red tape depending on what her funds are, whether she’ll qualify for Medicaid etc.

And by all means, take care of yourself. Caregiver burnout is real, happens fast to most of us. If you and your mom weren’t having the best relationship to begin with, sorry to say, it could get worse. I said “could”- not it will, but dementia is a very hard thing to work with. Take time for yourself whenever you can. Good luck.

Hello. I am about your moms age. Im saying that so you dont think im a younger person who doesnt understand.

but i do.

i have had multiple jobs and have found that in some cases the wife has done the managing and contacts. In some cases it’s been the husband. sometimes each has handled their own “business”.

it seems your mom needs your experience to handle appointments etc whether your dad did it or for whatever reason she is loathe to do it now.

so make appointments and whatever she needs and if she then says she wants to do it the leave it up to her.

My Dad (who died in 2002 at the age of 84) had many elderly clients. In almost all of the cases, it was the wife who managed the checkbook and paid the bills, made appointments, etc. If the wife died first, the husband had no clue how to manage this. Mom lived another 15 years after Dad. I got a lot of her bills on autopay, made her appointments and took her there (I lived 400 miles away). She was declining (more because of osteoporosis than mental), but she just didn't have the inertia to do things unless someone else did the planning. Especially with women, the elderly need an advocate with them during all medical appointments. Mom's last GP was younger (late 30s) and was really attuned to the needs of elderly patients, but her previous doctor did nothing for her osteoporosis until she broke a hip (10 years after Fosamax was available), despite frequent falls and broken bones. He just poohed every complaint as "what to expect" when you're getting older.

At her age, you will not be able to get her to take on a role she has never had to do. My mom has dementia; but before dementia, she was very driven and capable of handling everything. When my mom needed new glasses, I made the appointment, then told her we were going to go get new glasses and afterwards I was going to take her out to a nice dinner. Worked like a charm.

On the flip side: I can't even imagine leaving much of anything up to my husband to coordinate. I guess there are men out there that can do that. I just have to be thankful when he can get us from point A to point B without wrong turns. Not a new development, been like that since I married him 48 years ago.

A major traumatic event like your father's death, probably affected her a lot. She most likely won't be able to handle things very well. You've entered the difficult dance of eldercare.

Every person is different so your mother will not think, act, or react the same as someone else. However, we used to think my mother was a worrier. Now it is recognized that she has Generalized Anxiety Disorder. We used to think she was a hypochondriac, now it is a Health Anxiety Disorder. She obsesses about her health, her need for appointments, etc. But when you try to pin her down to exact times, she will always have an excuse as to why she cannot do it right now. Very few times is the excuse truly valid. However, when she sees that she REALLY does need to go, then she will make the appointment or let someone else arrange it. She admits she likes to complain. (But don't let anyone else accuse her of it!) So she complains about not having a way (though multiple people have offered to drive her), etc. But when it really comes down to a necessity, she will do it. I would rather be pre-emptive and take care of things before they become urgent, but it like trying to herd cats. I can try, but sometimes I have to just let it go until it is absolutely necessary.

Since you are POA, you will just have to make decisions for her if she is unwilling to make them for herself. It was a hard thing for me to do because I wanted my mom to be part of them. However, it got to the point where she just couldn’t understand what was going on anymore, so I had to start making them for her and telling her what is going on. When I can, I still go ether options and let her choose, but on the big stuff, I had to take full control. It did involve speak with her doctors without her knowing and then me telling her later. She eventually got over being upset and accepted it. I always explained I did it because I wanted the best for her and the disease doesn’t allow her to do it anymore.

If she does not drive and you are the one who is going to take her to appointments, can you make those appts for her so you can make them at times more convenient for you? You may be worried about setting a precedent of taking over that task, but,if she is having some cognitive decline, she is likely to procrastinate or forget or just not understand how to go about it. Anxiety contributes to the inability to follow through.

Appointments and scheduling take at least some "executive decision making," and that is the cognitive skill that drops most quickly. Nagging will be counter-productive. You or a designated person could more easily take over this part of your mother's schedule.

I think unfortunately if she has not taken initiative before, whereby your dad was the coordinator, she likely won't now. Being an only child, it will fall on you to have that role now.
If she has some cognitive decline going on and it turns out to be dementia, apathy is pretty common. I know that's what happened to my mom, who is now 83. She used to be the coordinator of everything and still knows what she wants and needs, but will not do anything unless I am right there guiding her or just do it for her (she has been living with us for over 2 years now). She gets upset with me when I tell her "you can do it" and get her to do it herself, but then turns around and tells me I treat her like an invalid and baby her and won't let her do anything for herself. Lol
She's also been diagnosed with generalized anxiety disorder which may come into play a bit, but she has had that along with some other issues since before I was born. Apathy has shown up for her within about the last 2 years or so.
I am right there with you in that coordinator role, as I am also an only child. As my mom doesn't like to leave the house too much now, I just make the appointments that we must go to and tell her when we are going. The times that we have to go to her doctor's office in person she gives me pushback, but when I tell her it's to meet a Medicare requirement, she then accepts it. She still doesn't like it, but she accepts it. :)
That might be something to try- just make the appointment, and tell her when you're going. You might need to encourage her a lot more on other things she can do for herself as well.
Hope this helps and best wishes to you as you navigate this new course.

You can't edge her anywhere but you can make the appointments and take her, as your dad did.

In the past, I have read postings about writing a letter to Mom's primary care doctor to outline your concerns. That way, you don't have to bring it up in front of her.

So when she says "I need new glasses," you say "okay, that sounds like an idea. What would you like to do?"

[Tip: it's amazing how much better people's glasses work when you clean them :) I always keep spare lens wipes in my tunic pocket now.]

This is only an example of the principle of using open questions, thus:
- I need new glasses.
- Shall I make an appointment with Acme Eyes?
- No, don't bother me! You're always nagging me!

- I need new glasses.
- Okay, what would you like to do?
- I don't know, I'll think about it...

... is actually the reply you're likely to get; but a) at least you won't have set up an Aunt Sally for her to knock down, and b) this probably isn't about her glasses anyway, it's more likely to be about the decline in her sensory abilities all round which glasses will not solve.

What are the other areas you have concerns about her managing?

You may need to use a "therapeutic fib" to get her into an appointment. Here's what I did with my MIL, who was having short-term memory and cognitive issues. Figure out what will incentivize her to go: maybe tell her Medicare requires her to have an annual checkup. Then help her make the appointment, and offer to drive her (and make it "fun" - maybe take her out for lunch before or after).

Before the appointment, write a note addressed to the doctor, outlining who you are and why you are concerned for her cognitive state. Then request a cognitive/memory exam and test for UTI. Hand it to the staff discretely at the check in. Make sure you take your PoA paperwork with you to this appointment and give it to the receptionist. You might want to try to be in the room during the appointment, sitting directly behind her so that if she gives inaccurate responses you can shake your head yes or no to so the doc gets facts straight.

Your PoA should allow you to know the results of this testing. Now you will be better able to understand her actual capabilities. She may need anxiety meds to help her through daily life going forward, and an accurate diagnosis is the gateway to treatment options.

Bring up your concerns with the doctor (or his nurse) BEFORE the appointment. You may be entering into new territory here. Dad may have been covering for her and now you are starting to see that she is perhaps worse off than you had realized. That's very common so don't feel bad about it. At 86 it is pretty common to have dementia.

The ship has likely sailed on self-advocacy and initiative. First get her to the doctor and make sure that her cognitive abilities are on the agenda. They can do a little memory test which I think is a start but only a little bit useful. I did not think that it picked up on the severity of my mom's issues which was frustrating.

I don't think you can just let her be and certainly not follow her lead. This will be a hard adjustment for both of you.

Good luck.

I’m afraid she won’t go. My MIL did and was diagnosed with Alzheimer’s and given donezepil which has helped. My
mother was VERY angry that my MIL was “treated like a lab rat”.

Maybe my expectations are unreasonable. She gets dizzy and her balance is off. I just want her to say “I need new glasses - can we make an appointment?” instead of saying it three times a day and getting angry at me when I offer to help her set up the appointment.

I agree with what's been suggested: she's in decline and is far less able to keep up with any learning curves or moves toward "independence".

I think it would be very important to take her for a cognitive/memory test to see just where she's at. This enables you to know what reasonable expectations you can have of her. It would be awful for her to never meet people's expectations when she literally can't.

Total agreement with MJ--and 86 yo? They have probably peaked as far as learning new skills--just try to keep status quo.

I'm only 65 and I hate it when my kids try to teach me something that I truly do NOT care about. Like how to work the remote for TV. (Why should I start watching TV when my life has been fine w/o it for 40+ years?)

We're just trying to keep mom oriented to time and location. That's really all we can hope for in a 92 yo person. Some elders retain so much and are lively and very interesting people (my 2 grandmothers) some are stuck in the 50's or 60's and bemoan all the technology that's out there and make no effort to use it--which is FINE, but they can't complain when someone posts a FB picture of a GGkid and they can't remember how to log in to FB--despite written instructions.

If she has cognitive decline, what makes you think you can nudge her in the opposite direction toward independence and autonomy? That makes absolutely no sense.

My husband is 61, retired two years ago, and has perfect cognition. He realized he hadn't been to a post office in at least 35 years. He didn't know how to use the automatic mailing machine, he didn't know anything about classes of mail, or even how much a stamp cost. I had always been the one to handle that stuff. I taught him all he needed to know, and now he goes to the post office himself.

THAT'S who you can nudge toward self-sufficiency, not someone who's 86 and cognitively declining. You're going to have to understand that at that age, tasks can be overwhelming, and just getting one thing accomplished per day is a victory.

Help her get her appointments made, and help her get to them. Griping that she's not on the upswing when she's at the downturn of her life isn't helpful. Remember, she's not you nor is she your age, so don't apply expectations of what you can do to someone 20+ years older.

I would follow her lead until you can no longer. You might try to get POA from her if she is willing to give you that, meanwhile. Tell her that you recognize that your Dad did a lot of the decision making and appointment planning and that you are glad to help her with that if she wishes. If you already have a prickly relationship your pushing her now when clearly it is upsetting her, will make that worse.
At some point you may need to intervene, but at 86 you interventions may do little. Try just to offer quiet help when she wants it and otherwise just be there to offer small outings and let her know you are willing.
Are you the sole person involved or are there other siblings. It would help if you could meet together and discuss as you go along.
My biggest fear here is not health concerns, as at 86 they fall, in my book to "what will be will be", but of financial concerns. If she is not able to handle finances it could be disasterous.