Mom, 77, lives with me and hubby. Just had her second knee replacement 3 weeks ago. That went well and she is able to get around quite well. Probably a lot due to having her other knee replaced a year and a half ago.
BUT she is being very difficult and driving me NUTS. To me she is negative and complaining most of the time. Pain here there and everywhere. New pains in hand perhaps due to RA flareup perhaps from having to go off her RA meds to have her operation? Knee pain which I keep telling her, yes of course your knee hurts, you just had an operation. Back pain which is chronic and she does nothing about.
Taking max tylenol a day and 5mg oxy 3 or 4 times a day. Usually 3 because she forgets or doesn't think she needs it overnight. Okey dokey.
Lots of complaining about her stomach/digestion and I know a lot of that is due to the oxy. Encouraging more water/fiber with not much cooperation. Except the meals I give her have plenty of fiber.
Knee/leg very swollen so trying to get her to drink more water. Should be at least 8 a day but maybe does 4? On furosemide which isn't really helping much but last operation this took time also.
Home PT is coming 3 times a week. She cooperates pretty well with him but does next to nothing when he's gone. Whenever I try to get her to do it, I am 90% of the time met with negativity and excuses. Then I know she will lie to the therapist and pretend she did a decent amount of exercises when if she did 10% of what she was assigned, that'd be a miracle.
So basically she does as little as possible and expects her pain to get better and her situation to improve. Magical thinking.
So I called her doctor to try to get an appointment and she is having a phone visit today. Which she doesn't think she needs. Well, you're taking the pain meds they think will help and they're not doing the job sooooo???
For the last 4 days she has been just focused on the pain and crying and complaining. Had two conversations (arguments?) with her yesterday and she seemed to rally a little bit after that but will not engage in conversation about this. I have not wanted to talk about any of this because I know she will be impossible but I have given it 3 tries. Now I'm hiding in my room before I totally lose my mind. She just sat there, not looking at me, and I said (perhaps stupidly) what are you thinking to try to get her talking and her lovely answer was "you don't want to know what I'm thinking". Nice.
I feel like I'm dealing with a 2 year old temper tantrum and/or a freakin teenage girl. Everything I say she goes against. Very contrary to me, even before this operation. Typically she really is a nice person and pleasant. Even to me. But, lordy, I am at my wits end.
I can not do more for her and her recovery than she is willing to do. I am disgusted and angry and sad, etc. I resent the fact that I am, AGAIN, putting more energy into her recovery that she is. If she put half her negative energy into positive forward motion, she could be so much better.
Also tells me things like "I don't want to take more pills or go to more appointments" when I suggest fixing some of her other problems. It's just such a short sighted negative attitude. WHY?? I ask her why wouldn't you want to take one more pill or go to a few appointments to be rid of problem X? Maddening.
the next stages/ Or perhaps it is just during this recent event. You and your husband will need to decide how much of this you can take. Things WON'T get better if she is on the downhill run. Make sure you have plans in place to move her to a facility so when it gets unbearable your not in a panic
I know.
Someone down thread suggested saying, "Well if you don't do your exercises, you'll havevto deal with the pain." A reminder that she does have a choice in the matter.
It sounds like the cycle of you pushing and her not doing what you say, which causes you to push more, and her to resist...isn't working and is driving you both nuts. If you stop being so invested in something she isn't willing to follow through on, you both might be happier, and her medical outcome will likely be the same. You might even enjoy each other again.
Remember, you are the only person who can change - she either can't or won't. Being 'mad' and the other feelings you've expressed you feel will be the hammer on your nail (head, psyche, life). You need to shift somehow - be it meditation, exercise, leaving, her leaving, seeing a lawyer and/or therapist. You need to figure out how to take care of you. We're rooting for you. Gena.
Your frustration is completely warranted!!
If a rehab facility is not an option, I would suggest start by setting one boundary. When you've mastered that one, add another etc... You need to be able to take back control of your life!
I'm not suggesting that your Mom is a narcissist, however, some of the coping techniques that are used for dealing with NPD might come in handy! YouTube is a wonderful resource.
There's are also good articles on this site!
Best wishes!!!
If she has cognitive issues already then moving sooner than later to avoid resistence?
Caregiving is not for the faint of heart. Some decisions have to be made with our heads and not our heart.
Our mother was still physically okay, but dementia came along and it reached a point that it wasn't safe for her to remain in her own place. We TRIED bringing in aides, initially just 1 hr/day, to get her used to it, check on her and check to see she took her meds from the dispenser I set up for her. The plan was to increase the time and days of help, but less than 2 months later she refused to let them in. She also refused to consider moving ANYWHERE, esp not AL, when that was in her plans before dementia.
We went ahead with plan B, finding a safe place for her. Neither brother would have been an appropriate choice for caring for her (OB has major ISSUES! YB isn't always up to snuff) and I could not do it physically. Days before the planned move, she injured her leg and did NOT have enough sense to tell one of us or seek medical attention. She did tell the neighbor she bruised her leg, and that was reported to me. Turns out it was cellulitis, a serious infection that could have killed her! If we weren't moving her at that time, the next visit I could make might have been too late.
I live far enough away that I couldn't check on her personally, only by phone, but hearing issues and dementia would get in the way of that too. She would forget to change the battery in the hearing aid, or misplace it altogether, rendering her deaf, turned off the ringer on the phone, misplaced the portable phone, etc.
So, work around her as best you can. Suggest tasks and activities, but if she refuses, so be it. If she starts some tirade rant, walk away. If necessary, go outside and walk it off! She can rant all she wants, but you do not have to listen. If she complains about something, you can offer suggestions, but that will only work if SHE will take it on. If you can't walk away, ear plugs? Head phones?
As others suggested, try not doing everything for her - leave her to do things that she should be able to do. She wants a drink, she should be walking to get it. Not walking will only make the ability to walk worse. That's one reason my mother is now in a wheelchair - use it or lose it.
Some of her issues may be early dementia OR could be a result of the surgery/anesthesia. This can bring on dementia-like behavior, but most of the time this diminishes. Sometimes it doesn't go back to pre-surgery normal, but do keep an eye on her behavior. Learn some of the potential early symptoms.
At least you aren't alone! Doesn't make it any less palatable, but sometimes just knowing your aren't alone can lessen the idea that YOU are the crazy one!
So learn some skills very quickly. Skills provide you with objectivity. More skills, more objectivity. Through objectivity you can become a more efficient caretaker.
Or hire a professional staff....on your mom's dime of course.
Also tells me things like "I don't want to take more pills or go to more appointments" when I suggest fixing some of her other problems. It's just such a short-sighted negative attitude. WHY?? I ask her why wouldn't you want to take one more pill or go to a few appointments to be rid of problem X? Maddening.
I so identify! My mum is 86 and very similar. I got a physio in to help her with chronic shoulder pain before coronavirus and Mum said she bored her and she had no intention of doing any of the (very simple) exercises the lady suggested. She also refused to pay for the visit.
She does no exercise at all (says she has vertigo and is too dizzy) and also now refuses to see doctors and says she will never go to hospital again, despite having her life saved twice when she had blood clots (from inactivity?). I don't know what we would do if she had to go again - get the medics to compel her, I suppose!
My nearly two-year-old granddaughter is easier to deal with than my mother...
As for the language, tell her you won't stand for the hatefulness anymore. Find better words or say nothing.
I'm all for keeping him home as long as it is safe, but there also comes a point where the safety and mental health of the caregiver and the LO are profoundly impacted. And for many it is an agonizing decision when they get to that point.
If she can not get into rehab, you are going to have to create rehab at home. It will require steeling your will against her complaints and creating routines that move your mother into better health.
Medications/Pain: You will have to be the nurse. Keep a record of all her medications and when she receives them. Check them off on a chart or write in a journal when she receives them and their effectiveness. Start by giving her Tylenol or other NSAIDs, that the doctor prescribes, on a schedule. Consider her Oxy is for breakthrough pain. Talk with her doctor about when you can resume her usual RA medications. Consider heating pad and/or cool packs to also help with pain.
Diet: Fluids and fiber and nutrition will be a "thing" to manage as well. 3 meals with protein and lots of fiber, watery produce, soups, jello, etc. can help meet the need for fluids and fiber. A daily vitamin can help make sure she gets those micronutrients for healing.
Exercise: This will also need to be scheduled for at least twice a day - without any excuses. Movement will help move the fluids from her knee area back into circulation. Start with heating pad placed on knee for 20 minutes to "warm up" the muscles. Follow with a gentle massage to move fluids from the knee towards the heart. Then, it is time to do all the exercises that home PT has her do. Offer a cool pack (I like a damp washcloth in a plastic bag that is kept in the freezer). Offer an Oxy 30 minutes before doing PT.
I know it is a lot of work. I had to do similar regimens when I had surgery on both my hands for arthritis (one at a time). I also had to do similar routines when I helped friends and family members recovering from surgeries at home - as an RN. It will work but you need to be firm.
My FIL is on the yo-yo plan in and out of rehab or surgery to correct this problem or that. Somewhat compliant with home health PT and OT to put on a good act. Absolutely refuses to do anything when they aren't around. Blatantly lies to them that he does his exercises religiously. Apparently it escapes him that they can actually TELL if he is doing the exercises on his own time simply by his lack of progress.
In years past, he would at least be discharged from rehab as having met the requirements and improved. This last time he was discharged as needing skilled nursing assistance. SIL and BIL live with him and she (his daughter) is his full time caregiver. We maintain that his motto is "no pain...no pain!". He will absolutely not do anything that causes him any discomfort whatsoever. As a result he is losing his mobility much more quickly now.
However he is still cognitively sound - so I can literally feel the tantrum toddler/teenager angst. We are there too. We are holding him hostage because of COVID he says, he just wants to go out and see his friends he whines. His friends aren't going out either, so we have been able to deter from that. But he literally can not go out on his own even without COVID. He is not physically mobile enough now to go out without at least 2 of us going along. In his mind he is still exactly as mobile as he was when he was getting in the car and going out on his own a few years ago, and it escapes him that he has literally lay in bed or sat at home for those years and done nothing and that it takes an act of God just to get him into the car with 2 people helping.
I think part of the toddler/teenager aspect comes from dealing with your own mortality and not wanting to admit that you need help and that healing takes more work than it used to. I can tell he is very frustrated because the situation has flipped on him and now we get to 'give permission' (by default since he needs someone to take him out now) vs. him telling everyone what to do. He is unfortunately a bonified narcissist and having almost no control is bringing out the very worst in him. We try our best (DH and myself) to be involved as much as we can since we don't live with them. I end up in argument after argument with him over the phone or in person trying to get him to comply with even the most base request. I think he's rebelling, much like a teenager, because boundaries and rules have been put in place that he doesn't like.
Unfortunately sometimes the only thing you can do - especially if they are considered cognitively sound - is let them make their own choices and let them deal with the consequences. We use what power we do have to deal with things the only way we can. But at the end of the day we can't make him do the right thing. We continue to remind him that if he gets to a certain point, no amount of medical tools, beds, bars, lifts etc will be able to keep him in that house. Apparently to him going to an assisted living facility/skilled nursing facility is the worst thing that could ever happen to him. So he doesn't like that we remind him that lack of compliance on his part will lead to that consequence and there won't be anything we can do.
As others have suggested, for your own mental health you may have to walk away when it starts. The reality is that they are complaining because they don't want to do the work that will help them. They only have themselves to blame. But that would be too hard. So they take it out on the nearest person who they know loves them and will take everything they say and still love them. It's hard, I know. I know it is so much worse for my SIL than it is for me. But when it gets to the point where she can't handle it, she leaves, takes a walk, gets in the shower, somewhere he can't follow her. Because as a caregiver you have to take care of yourself too!
The world shrinks a bit - from setting future goals to what do I want or like right now.
Tonight I had the great displeasure of speaking with her on the phone. She let me know that she was out of breath b/c she got changed into her nightgown alone, in spite of being told 1000x not to do that; to wait for the CG to come in to help her.
She then went on to say that she wants to stop taking ALL of her pain medication and other pills b/c they're not helping. Then why does she see the doctor & rack up that bill every week? The doctor keeps writing new Rx's for her in an effort to HELP her, but hey, she's 'full of sh*t' and isn't doing ANYTHING to help her.
You can't save a person from herself. You also can't change a negative attitude of 'poor me' into one of positivity and gratitude.
You can, however, start collecting brochures of local Assisted Living Facilities and let your mother choose the one she'd like to move into.
There is No Way On God's Green Earth I would or could live with my soon-to-be 94 y/o mother. No Way. I'd rather shoot myself. Putting up with her hideous behavior & negative Nelly attitude for 63 years has been PLENTY.
Wishing you the best of luck trying to figure out how to find YOUR peace in the midst of HER chaos.
They must be long lost sisters, your mom and mine!
Previously (before dementia) she was good about doing what was needed. She had shoulder surgery following a fall on ice when in her 80's and did well. Home PT. Foot (bunion) surgery too. Since moving to MC she refuses to "exercise" - they did try to get her to join in some light movement, but she said no, I did that for years, I don't need to do it! Even before the move, she became more and more sedentary. Her "walks" diminished and she would sit around reading the paper and sale flyers. Early on I was able to get agreement from her when I repeated what she used to tell my dad - use it or lose it, but it didn't change anything. She moved in mobile, no cane or walker. Eventually went to a walker, and now wheelchair.
After she started refusing to stand/walk, they tried OT/PT. She flat out refused to work with them. On the final attempt, she told them they should do what they were asking her to do. So, wheelchair it was.
She did actually work with OT/PT a bit following her stroke early October, to try to regain ability to eat and help with pivoting, but it didn't help much. At least my mother isn't the "complaining" type there... Plenty of that before the move, and maybe a little to us after the move, but for the most part she's quiet. Like you, no way would I take this on! Her weight alone, combined with my lower back issue (vertabrae can slip out of place - not the disc, so I have to be very careful what I do!) is the primary reason, although there are other reasons not to have her here.
"Putting up with her hideous behavior & negative Nelly attitude for 63 years has been PLENTY." My mother wasn't quite prone to "hideous" behavior, but definitely a negative nelly in private (always smiley and pleasant to most others!) Sometimes it was hard to restrain myself for her behavior, opinions (uneducated often or influenced by quacks on TV) and her prejudices, both to people of "other" backgrounds and to in-law members...
Wise to stay away or keep any interfaces to a bare minimum!
Also, mom's painmeds (tramadol) made her kooky and also prone to falling. I don't know why. Now she is only allowed Tylenol and that is really pretty pointless. It does nothing for my OA pain.
It's been beyond frustrating to sit and see her deteriorate so badly. 10 years ago she was walking and doing for herself--her slide into complete dependence on someone else was pretty rapid and sad.
I know so many people who have had total knee replacements and do very well, even into their late 80's--it's about motivation and desire. Mom just wanted attention and once that was done (I couldn't deal with her lack of motivation) she just slumped over and gave up.
Tramadol made my MIL completely CRAZY. Tylenol basically seems to do nothing for my mom.
Watching someone go down hill without even trying to help themselves is very sad, I just don't get why. Why would you just let yourself go down the tubes without a fight??
Run that thing about liking 8 glasses of water a day for someone on Lasix. That means some congestive heart failure; docs don't always recommend that much fluid in someone having trouble processing it through the system.
Your Mom may be more chatty; opioids do it. And because pain is what she is dealing with, pain is what she is talking about.
Try not to take her constant talking about pain right now (it is of course right now what her life is all about--just saying) personally. Don't pick up the luggage. Just say "I am so sorry". Speak with her with the PT people about what her perceptions are of what she is doing, and let her tell them hers; let THEM be the one to read her the riot act about how much worse she will be if she doesn't do the required exercises for this knee. It can be the difference between successful surgery and not successful.
Basically stop trying to fix everything. You can't. Some of this is on her. Chronic pain is difficult enough, and add on now acute pain, and it's a lot. She also likely is depressed that she is a burden. The Oxy will make her much more vocal about all of it.
I think, being 78, I can somewhat identify. I don't take anything for the aches as I had a bout of diverticulitis; my drug of choice, motrin, and other NSAIDS not good for that condition, and I wouldn't want another bout. But yeah, it becomes that the neck hurts and if it doesn't then the wrist and if not that then the feet, and there's the back again. For me, I have become somewhat accepting about pain, and don't choose to talk about it. Keep walking and gardening and moving about; why tell my partner? At 80 he has his OWN. So on you go. But it becomes a fact of life. So if she talks a lot about it just tell her "Yup. Older, wiser, and hurting everywhere, huh?" You two are developing a habitual way of interacting that sounds like no fun for either of you. Watch a few Wylie and the Roadrunner cartoons to give it all a break.
And you are correct. It sounds MADDENING. I wish you the very best. Both of you. Hugs out.
"Don't pick up the luggage." LOVE IT!
I was thinking about contacting her therapist to make sure they know what she's really up to - or not up to as the case may be.
Yes, our way of interacting is basically no fun. The fun went out of our relationship years ago. The shift to caretaking has made it quite complicated and stressful.