How to resolve the tension between "happy" and responsibility for ones health when caregiving is involved?


hi everyone, I could probably write a 20 page paper on this so making it in 5000 characters might be a challenge! I came home to take care of my mother a couple of summers ago. she has parkinsons, depression, osteoporosis, crohn's disease and pretty bad arthritis to name a few. she's on 12 prescription medications and a handful of OTCs. when I first came home she was spending 22-23 hours a day in bed. I started her doing exercises 3x a day, sitting at the table for meals, and reading/doing word puzzles. occasionally she'll get angry enough at me, resistant enough to whats going on, she'll refuse to do anything that's in front of her, and she'll go back to spend 22 hours a day in bed. the last time that occurred, the deterioration was visible shortly, and it wasn't long before her decreasing mobility and cognitive deficits led her ending up on the floor in her bedroom in the of the middle, having defecated on herself, and note being able to get up. my response was "okay, did you like that?" so we went back to the exercise and out of bed regime---until just a couple of days ago where again, some resistance has cropped up again and "im not going to do what you want me to do anymore" is the order of the day. she has a 98yr old aunt who may be heading soon to the long care nursing home and is more or less being forced down that path by a relative who has POA. after a visit to the short term rehab/nursing home, I asked my mother if she wanted to end up like aunt **** and she said no. I asked, okay, how do you help prevent that from occurring---"doing my exercises and eating well." when I brought that up by way of a counter to my mothers recent position of "I don't want to", her response was "I lied." im at wits end---she's back to 22-23 hours a day in bed and I trust its just a matter of time before the deterioration sets in, and she's back on the floor with her drawers full of feces. given im the one who has to pick her up afterwards im feeling pretty strongly about having some say in the actions and behaviors that are done prior to that point in terms of preventing it from occurring. the challenge is how to go about that. some years ago at the beginning of this all, I was around when she returned from a multiple month hospital/rehab stay. I put a porta-john in her room, but then after a few days, took it out so as to force her to walk to the bathroom. as a part of that fight, she called the department of aging on me and as a result, I got a visit from a couple of the officers from the sheriff's department. my mother's default position is "I don't want to" and mine always is "that doesn't matter, you have to"---so we're pretty philosophically at odds with each other. at the moment, id estimate she has the mental faculties of a young pre-adolescent and so reasoning through these conflicts doesn't really work. im not sure I have an actual question here---so much as maybe one or two will appear if some people respond and the conversation might generate them.

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peeking back in to say, a couple of days ago my mother went back to doing some (most) of the stuff I had been asking her to do. there wasn't any real conversation about it, it's inexplicable, like she just woke up one day and the rebellion/resistance from the previous few days hadn't happened at all.

I have to say that gender made no difference to my suggestion. Guys like chocolate, too. :)

Isn't it interesting that so many of us, including me, assume that a poster is a female? Now that you've revealed you're not, I begin to see things differently.

I think I understand what you mean about the medical issues, your mother wishing she had taken preventative actions, and "letting go" knowing that if you don't become more aggressive, or hands-on for lack of more specific terms, that an issue might become more complicated.

Been there as well. It's a hard place to be. Sometimes it's downright scary. We went through one situation like that.

These caregiving journeys have a lot of unexpected stops and starts, detours, and obstructions. Sometimes I think of snow trains, ferociously plowing through several feet of snow, pushing, backing up, then pushing again. I've felt as if I'm stuck in a snow bank on more than one occasion - can't go forward or backward.

But, you can't predict what might or might not happen, even in generally predictable situations. I've also been in the position of expecting something to happen based on past events, but it hasn't. Yet there are other times when simple actions produce completely unexpected results, something I never could have predicted.

The only suggestion I can make is to be very vigilant in monitoring everything, even to the point of charting if you observe something out of the ordinary. Then you have a record of progression.

I make notes on congestion, increased or decreased, activities and fatigue levels thereafter, visitors who have positive impacts and others who don't. It sounds obsessive, but was helpful recently when I checked back in my phone log and realized that something I had thought began only a week or so ago actually had been ongoing for several weeks. So we changed plans to adapt and stop it before it became worse.

And lest I convey the mistaken impression that I'm always on top of things, I can't even remember when something happened to me - I spend more time recording my father's medical issues. I know this isn't wise and need to address it so I don't have to respond to an inquiry of when medical issue began with "sometime in the last 2 - 3 years??"

My ex and his family babied his mother because she would act up and purposely go to the bathroom on the floor if she didnt get her own way or she was told to exercise. She was on waiver who would have given alot of hours for aides, she refused. Also, I was completely burned out from caring for her and was offered a 5 day respite, she refused. Due to her actions, her primary care physician repetedly said she needed more care, a nursing home and called APS several times. Because she refused to exercise, she was in pain all the time so she was taking narco, fentanyl patches and another pain killer.

So to answer your question, our dr suggested compentency evaluations regularly. If incompetency is established, you can make care decisions such as hours for aides, in home pt or ot or respite when you need it...and you will. From your description, I am similiar to you so I understand the frustration of someone not helping themselves. My advice would be to set up an evaluation for her mental health and contact the commission on aging to get yourself a break.

I appreciate you all writing and your empathy thank you...

Jessie & garden, im partial to potato chips...smiles...

garden---im not saying I wouldn't do anything if she developed something bad, im saying she will wish when she has pneumonia, or something else, that she will lament not having done things prior to prevent it. knowing this, how can I "let go" now when I know she is going to regret the results of that later.

tacy---can you tell me how a declaration of incompetent makes things easier?

I should tell you all, I am thinking you are thinking male. that's a part of the problem too I think. im far from gentle and among other things, I suffer from high expectations. if I had known when i was 12 id be going through this, I would have made my mother adopt a sister for me!

Chocolate works better & faster than flowers. :-D

bounty, I am in your situation. I tiptoe around the question about how much I am willing to do. We want to be helpful, but it can ruin our lives. I've learned with my own mother that most things are not worth the battle. I let her do what she wants most of the time, because to battle with her to do differently would make both of our lives miserable. We have to choose which battles are worth it and which aren't.

Your mother wants to lie in bed all day, which is going to end up at a nursing facility. I would suggest to be looking at different facilities and studying how to apply for Medicaid when she needs it. We really can't spend their and our lives trying to control what they do. You can encourage her and present opportunities, but it is all you can do. The rest is up to her.

I don't know why some old people choose to sit or lay down the last years of their lives. It's like they stop living early. We can't live for them, but we can be proactive in researching their future needs and seeing that things are in place. I am right there with you. We are sisters in misery. Of course, we can't say that to anyone except on here. Thank goodness for AC.

Bounty, I'm not sure anyone innately has the skills for these kinds of journeys. We learn as we go. It's not something for which we could have taken a course in school! So don't be too hard on yourself.

I wouldn't "let her go" if she gets pneumonia, or other treatable medical condition unless she's at the terminal stage, which it doesn't seem she is. I think the "letting go" is the balance that we all would like in dealing with contrary elders.

If you neglect any medical treatment, you could be faulted by medical professionals, who are mandated reporters.

You also shouldn't neglect any medical treatment you need.

Now go out and buy yourself some flowers - a nice cheery bouquet with a soft fragrance does wonders for the soul.

My exes mother has parkinsons and acts like your mother and I was her primary caregiver. She was also diagnosed with dementia so I understand what you are going through. Has she been deemed incompetent yet? If not, get that process rolling, it will make the situation easier.

gardenartist (I love flowers by the way, and I love to garden though I am never really totally succeed at it), I appreciate your thoughtful reply, thank you.

a nursing home is not really an option for me---im just built that way I guess but its also not really an option from a financial perspective.

I just gave her a couple of diagnostic tests and she came back "dementia" in each one. we talked about that---I said what this in part means is you might not have the memory or cognition to do what is right or good by yourself. what that means for me then is I either force you to do things, or you go back to doing them yourself of your own accord because ive asked you, or you deteriorate and end up back on the floor. when she said "I wont end up on the floor", I said, that flies completely in the face of the "use it or lose it principle" and of your history, and is probably another aspect of the dementia.

you hit the nail on the head with the question/statement of me not having the skills. I recently told someone I feel like im equipped for a canoeing trip but am being asked to go mountain climbing instead.

so I think that might be the question im facing---how much do I let her go her own way when I know when she's in the midst of pneumonia, or whatever, she will be wishing she hadn't.

You're at that delicate but difficult place at which many caregivers find themselves. I don't know if there are any good answers - it's a real dilemma, and a very emotional one often fraught by guilt and self-perceived obligations.

You might want to start by deciding at what point you can't handle this situation any more. What's your outside, bottom line quitting point?

Sometimes just making a list helps - what she still can do, what she won't do, what you're willing to do and how much compromise you'll make.

If reasoning doesn't work, sometimes you have to play (softly) on the emotions.

I would back off the routine and regimen while you're thinking this over, then when she's in a more approachable mood, explain that you can't continue trying to help - you just don't have the skills (don't address her lack of cooperation). Shift some of the perceived responsibility on yourself to see how she responds.

Judging by her reaction, cut the discussion short if you have to, but do explain if her response indicates she's listening (REALLY listening) that you don't feel that you're helping her. Depending on her response, you might suggest that you can start looking for a place for her, but don't push her so much that she ends up retaliating against you. Maybe just leave her with the concept that you don't feel you can help her any more.

The goal is to try to get her to realize, if it's possible, that it's no longer a workable situation and something has to change. If she doesn't or cant, you have to look at other solutions. But don't mention a facility at this point - take it one step at a time.

And try to find something she enjoys doing afterward so the "sour taste" of defeat and resentment aren't left with her.

These intractable situations don't turn around easily, and it probably will be some time before you can know for certain whether or not it's justifiable for you to even remain there with her.

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