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MBFoster Asked May 2020

Is self-neglect a valid choice?

My mother is defensive about her ability to care for herself.
If I ask whether she has drunk water, eaten, or taken medications, she bristles and shuts down the conversation. I am not eager to get 'up in her business'. It makes both her and me unhappy.


If I leave her alone to continue to take care of herself, she may continue for quite some time, despite the fact that she lets herself get dehydrated, may miss doses of meds, etc. That allows her self-determination.


If I start monitoring her medications and hydration, asking her about bathroom matters, and so on, we are on a slippery slope toward me being her hands-on caretaker -- and that is not a role I want to hurry into.


How do I gauge my responsibility here? How do I balance her right to self-determination against the knowledge that she is very inclined toward self-neglect?

Llamalover47 May 2020
Imho, the elder may need reminding of these ADLs. Sure, it does get frustrating for the LO's family member to keep telling them, but their mind may not be the same.

amicaring4mom May 2020
@MBFoster - I'm so tired too! This is all very new with my 74 yo (very stubborn) mother staying with me. She tells me at times that I need to remember she is the mother and I am the daughter. Of course, I just wanted to scream - then act like my mom! I don't - outloud.

Sometimes she is quite content to let me do things for her and other times I think she just needs to know that she can. Other times - she's just stubborn.

I have food and snacks for her. I keep drinks close to her. There are no medical reasons why she cannot take care of her basic needs so I continue to let her make the decisions, as long as she is not hurting herself by doing so.

It's a tough road, for sure.
Isthisrealyreal May 2020
Remind her that she may be the mom but she is living in YOUR home.

That changes the dynamics, sorry mom, my house my rules.

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Nemophilist May 2020
Yes, self neglect is a valid choice providing the individual has not been deemed incompetent. As individuals, we all have the right to make our own decisions, even the bad ones. It’s a common concern in caregiving and you’ll find many posts regarding refusals to give up driver’s licenses, take medications, practice basic hygiene and so forth. Many of us struggle with the balance of assisting our loved ones and trying not to enable their poor choices. In my situation, I try to make sure my father makes well-informed decisions and is aware of the possible consequences. Ultimately I can’t save him from his bad decisions and risky behaviors. He has been difficult and suffered mental illness his entire life. I can’t fix that. Personally, I pray that he dies quietly in his sleep, for his sake as well as mine. Many caregivers in this situation are left in limbo until there is a major trauma that changes the course at which point their LO’s decision making abilities are taken from them. If that does happen, my comfort will come from knowing I did the best I could. Some caregivers want to control. I believe it’s my job to only be supportive as my father continues to lead his life as he always had...with a fierce sense of independence and determination. You’ve got your work cut out for you. I hope you find a balance that you’re comfortable with and that keeps your mom safe.
MBFoster May 2020
Thank you for your insight.
Control -- responsibility -- capability: all those things are in the balance. And judging who has how much of each is a level of calculus I don't feel prepared for.
lindabf May 2020
When I was caring for my mother, I discovered that my best strategy was simply to always have some kind of liquid and some kind of snack on the table beside her favorite chair. There were things she couldn’t resist (like bananas and coffee). And there were things that just hummed to her until she ate or drank them (like nutritious shakes, crackers and cheese, nuts (particularly cashews), ice cream, corn on the cob). Over time, she still began eating and drinking less, but it was a pretty natural progression. When she lost the ability to swallow, of course, it changed everything and she was soon in hospice. But my “put it by her chair and don’t mention it” strategy worked for years. When I began discreetly putting her pills there, too, she usually took them. Basically it meant I was never nagging her, and she always had the choice to take what was there or not. I think she enjoyed being served, since she had always been the one serving others (as a nurse, Mom, Care companion, chaplain, etc.)
MBFoster May 2020
When I was classroom teaching, I spent time each morning constructing breakfast and lunch for myself, for my mom, and sometimes for my husband. I would put my mom's breakfast and lunch on a tray outside her room.
Then COVID hit. I was slammed with change and couldn't even organize my own regular meals. I was flying by the seat of my pants. My son and husband pitched in, but at that time mom was capable of coming out of her room to get herself something to eat.
Just as I was turning in grades, mom took to her bed with a headache and nausea. She stayed there for 2 days. It isn't clear if she is capable of getting herself food and drinks anymore. It is clear that she would LOVE it if I would do it for her.
I am so tired. So very tired. There seems to be no end to what life can and will demand of me.
medicaidmaze20 May 2020
I agree with other posts-do what you can to help with hydration. My father-95 living at home with mom-became very dehydrated, fainting, crazy BP, missing meds due to falling asleep. Hospitalized 3 times for the same thing happening over several months. Thankfully things are relatively calm due to 24 hour care. Even with that things still happen. Caregiver leaves the room when dad in the bathroom doing his business. He tries to get up and falls. Heart problem, heart infection discovered during stay at the hospital-partially linked to dehydration. He consumed coffee and wine were the fluid intake which were not helping with the dehydration problem. I removed wine and other alcohol months ago. Mom asked me to bring more. I did not do that. I do not baby sit them or the care givers so I am not 100% sure things are all good in the hydration dept. did what I can/willing to do to a point.

Grandma1954 May 2020
Believe it or not...there are water bottles that will track how much you drink.
But that is not the only way to get fluid into you that "counts"
Does mom have coffee or tea with breakfast? Count some of that to her fluid intake.
Does she have cereal? Count some of the liquid there as part of intake.
A salad at lunch, or soup? That counts
Fruit, fruit juice counts as well.
As far as the medication goes..if mom is capable of retaining conversation you can tell her that it is important that she take her medication properly and if she does not do so you will have to step in to guide her. There are medication dispensers that will remind someone to take a dose, will remain locked until the next dose is due and will alert to a missed dose.
As far as bathroom habits...that is a ..keep an eye, ear and nose on things and step in when you think you need to.
Keep meals balanced with high fiber and hopefully with the hydration constipation does not become an issue. And if she is on any medication that can possibly cause constipation or diarrhea keep that in mind when planning meals, and since it is a possible side effect discussing this should be routine along with the ..have you had enough to drink and have you taken your pills.

By the way I do not think it is "self-neglect" as much as it is we just don't think about things like this. But maybe that's me I think of self-neglect as a deliberate act. There are many times when I have been busy I will sit down at 4 PM and realize I have not had anything to drink since the morning. There are other days when I drink a gallon of water or more during the day.

By the way since you had your mom move in..that was the day you stood on that slippery slope, every day the slope gets more slippery. It is when it starts to rain and you loose your footing and you start to slide is the time when things get more difficult. Ya just have ta watch for the days when it pours!

Geaton777 May 2020
MBFoster, your profile says your mom lives with you, so I think not becoming her hands-on caregiver will be a little trickier now that she's used to having you provide all/any of it up to now. The first order of things should be for her to assign a durable PoA. It should be you, if you're willing, as you know her best and seem to care very much for her. Then take her for a discrete cognitive exam. At this exam, if she shows signs of dementia, her PoA (or any legal paperwork) cannot be altered by her any more. That's why the order of this is important. You can tell a "therapeutic fib" to get her to the exam, pass a pre-written not to the staff requesting both a cognitive exam and test for UTI. If she has no dementia, then you must have the caregiving expectation conversation with her and see where that goes. If she does have dementia, you know what you're dealing with and will have to make her caregiving decisions in her (and your) best interest since she lives with you, you're an only, and you are her PoA (hopefully). I wish you all the best!
MammaDrama May 2020
Actually dementia does not mean a person cannot change legal documents. A person can have dementia and still have Testamentary capacity in which they can sign documents and make changes to legal documents.
MammaDrama May 2020
Competency. I agree with Sunnygirl.

texascares May 2020
Another vote for "encourage her to stay hydrated" here -- a couple of years ago, our AC went out in the hottest week of the year. A week later, Mom became very disoriented, babbling nonsense and then becoming unresponsive. EMS was called and she spent a week in the hospital -- she'd become dehydrated due to being in the hot house and developed a bad UTI. None of us realized that at her low weight (she lost muscle mass after a stroke), she had lost that much water via perspiration.
MBFoster May 2020
Thank you, Texascares. We, too, live in Texas. My mother lives with us and almost never sets foot outside, so the chances of her experiencing excessive heat are low.
I am trying hard to get a sense of how my mother does care for herself. She seems sharp as a tack with regard to her medication. When she gets a call from the pharmacy that a refill is in, she wants it NOW. Maybe she isn't becoming dehydrated according to a medical definition -- I just know that she doesn't come out of her bedroom for any beverages when she takes to her bed with a headache or nausea (which happens about every 2 months and lasts for 36-48 hours). After she recovers she's right as rain.
Daughterof1930 May 2020
Dehydration is a beast. We’ve been through that several times and it’s awful, so hard to recover from, especially in the elderly. If she doesn’t want to eat, chances are she’s going to nibble along enough to stay okay. Meds are a variable, some won’t have any consequence to missing, I wish my dad would ditch a good number of his, I’d swear nothing would change. But missing some meds may cause issues you don’t want to deal with. Go through them all and get familiar with them and what not having them would look like. My dad knows a number of seniors who’ve stopped all meds and say they’ve never felt better, but again, highly variable, and dependent on so many factors. Her doctor should definitely be informed on it. But mainly, push the fluids, you don’t want dehydration, it makes them awful in so many ways

JoAnn29 May 2020
Are her pills in a planner? Maybe have a timer handy. When it goes off she knows its time for her pills. You don't need to remind her.

Forgetting to eat, drink and take pills is a decline. Her brain is not telling her to drink or eat. And as we age seems we need to hydrate more. I am going to have this problem because I rarely get thirsty. I don't drink 8 glasses of anything during the day. I have to literary force myself to drink water.

Sunnygirl1 May 2020
It’s a tough call. As I care for my parents, it gets frustrating at times. My guide is whether or not they are competent. If they are competent, then their poor choices are their business. They make their own choices and suffer. If I really think they are incompetent, meaning a doctor and court would say they are incompetent, then, I’ll intervene and do whatever I must to act on their behalf, even taking legal action if necessary.

However, if she is living in your house, you get to make some calls. You might use that as leverage. If she’s really doing so poorly, why not ask her doctor for a cognitive evaluation.
MBFoster May 2020
Thank you, Sunnygirl1.
It is hard to assess her competence. It seems to shift according to variables that I don't have a grip on.
And that's the heart of the matter:
She has always been mentally ill, and she desires control. She chooses not to do things that would make her healthier (exercises prescribed by physical therapists; choosing healthy food; tracking her health so that she can isolate causes of illness).
She wants things done for her. She avoids 'agency.' (This is ironic because she wrote -- well, almost finished -- a dissertation on 'agency' in writing. She has started many academic projects that have ended with not-quites because of all sorts of things. Never her fault. Always because of things that 'happened to her.')
So, you see, I am in the cross-hairs to be her final victimizer. I will be the one who is responsible for her decline and her death.
Wow. I didn't know I knew that.

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