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She has dementia, emphysema, orthopedic/mobility problems and post polio syndrome. She is depressed and feels we nag her too much and it is making all involved in her care upset as well.
With my mother who has dementia, it's called bartering! I barter for everything, say she wants to sleep for a little longer in the morning, I will offer 10 to 15 minutes longer in bed, she will agree and when that time has passed she gets right up. If she awakes in a bad mood, I tease her right out of it, by tickling her or making her laugh at my stupid faces. I find my attitude affects her attitude! I don't ask her to take a bath, I run a bath for her and then tell her it's ready, same with dinner. I found that when I ask first, she always says no, this way it is always a nice surprise. Oh, thank you honey she will say. Giving them choices as a happy demeanor works for my mom. Every morning we read the paper together or I read to her and we do the trivial pursuit in the news paper, Dear Abby and of course the funnies, which always puts her in a good mood. When I clean her room, after making her bed I leave a little note, saying something like, "I love my mama!" with a piece of chocolate or mint on her pillow. She loves it! This is what works for me and my beautiful mother.
I have a mom with dementia ... I also have a son with autism. My rule for both is "pick your battles." The things that matter most are health and safety - those you need to stand your ground on. They need to take meds, keep clean and not run out into the road. Things like which shirt they want to wear, what veggie they don't want to eat, and whether they comb their hair are small things that aren't worth the battle. We've all had the hour long scream fests with a parent or a child where everyone ends up tired and frustrated. Not worth it if it can be safely avoided. If it comes to making a choice, give two options and let them pick one. It feels to them like they have some say and you won't have to wait all day for a decision or be met with a resounding NO.
If your LO won't and doesn't take care of herself, let her physician know. Tell the truth even though she may not want you to. She is not the deciding factor.
Love2Garden says "...make sure she is fed, clean, safe, and comfortable."
This is really about all you can hope for, especially with dementia. Perhaps what you think is encouraging her is viewed by her as nagging. Maybe try giving her choices, especially for issues like eating and drinking. Find ways to make it her "idea." Then you aren't forcing anything, she gets to choose! I was told by the staff at mom's MC facility that they cannot 'force' anyone to do anything, even those with dementia. What they do is coax, over time, and get the person to comply eventually. It doesn't always work though. Recently they tried OT/PT after mom had some non-injury tumbles and then refused to use her walker, complaining she was going to fall. She ABSOLUTELY refused to work with them and they had to give in.
Something not as healthy as we would like but she would enjoy eating/drinking would be preferable to refusing everything. Offer food/drink at random times - inactivity and age can dampen appetite, so she may not be hungry at "normal" mealtimes. I generally eat when I am hungry, not because a clock tells me it is X mealtime. Rather than presenting foods, ask her what she would like, even if it is more snack-like foods. Given her various issues, it isn't like eating strictly healthy foods is going to help improve the issues (yes, they would be better, but again something is better than nothing!)
Ask her what she would like to eat or drink rather than focusing on EAT, DRINK. Our mom still eats/drinks, but will refuse some things, or just push them away. Ice Cream bars? OOOO yes please! If/when the time comes that she will only eat these, so be it.
Is she on any kind of anti-anxiety meds? Getting her to wear the pap at night might be easier if she takes something before bedtime. We only use a minimal dose Lorazepam as needed (needed it for UTI behavior!) and it amazed me that 1) it works so quickly and 2) it doesn't take days or weeks to build up in the system. Obviously your mom's other medical issues would have to be taken into account, but if you work with doctor/pharmacist, perhaps something could help make her a little more compliant/less depressed (along with making suggestions/giving choices.) Not so sure about anti-depressant medications - the only experience I have with them is reading/seeing ads, and on seeing/hearing the side-effects, including suicidal thoughts, I often wonder how they can consider these anti-depressants! I've also seen how some medications don't work well for some people and/or conditions, but when other meds are tried, they do the trick.
It isn't an easy path, and one can easily fall into the trap of nagging without realizing one is nagging!
I'm in the "tough love" camp. If my dad doesn't want to do it, I'm fine with it. Not worth losing my sanity over it if he lives until the age of 93 or 94, since his quality of life is not that good, due to poor choices he made his whole life. Honestly, what would I be preserving? I'm just following his directives that he wrote in his will and trust. 2 sisters are of no help and won't lift a finger, so it's all on me. I'm retired and I have a life too, father should not have been so lazy, thought it through more, and planned better and accordingly, as he can comfortably afford it. He has a champagne budget, but he chose to buy cheap beer instead, so he's getting what he's paying for.
Before illness and mental problems set in, everything humanly possible must be done to make sure the affairs of the patient are current and correct. Often this is impossible because not all people want to do this and simply don't. That should tell you what lies ahead. Do your own planning and research to the highest level so you are prepared for the future. Talk to them, reason with them, etc. But also let them know in no uncertain terms that UNLESS they cooperate and start taking some action for the future, YOU will not be present to help them when the pieces fall. It will be hard for you to do this but you must do this. Make them understand, or at least get them to listen. Then when the time comes, and nothing can be done without dramatic problems and harm to you and your family, be strong, walk away - it is often the only way. I don't like seeing it but you cannot force them to cooperate but you can take steps to protect your own sanity and peace and future and that of your own family by walking into the sunset. There is no other way. I have dear friend with two parents in their 80's who have severe problems but no matter how she tries they refuse to cooperate. She is near a nervous breakdown, has become very ill from the stress and the related responsibilities and I fear for her very much. She does not deserve this and I am begging her to move on and protect her own mental and physical state. Too soon yet to know what she will do but she is going downhill fast this way.
I've been there and done that with my mother. There is no easy fix. My mother too had several major heath issue including depression. The more I "nagged" my mother to do her excersizes, eat healthy, think positive or doing anything else to give her a better quality of life the more she bucked me. You can lead a horse to water but you can't make the horse drink it.
After 10yrs of this, I realized I'm not going to change her. I had to change my thinking because I was driving my self crazy trying to fix her. I had to start fixing myself and readjust my thinking. I wish I would have recognized this sooner. So I let her be and stopped "nagging" her. Her quality of life was not going to improve no matter how much excersize she does, how healthy she eats or how happy she may be. My job now was to make sure she is fed, clean, safe, and comfortable. This is the best thing I could have done for her.
Mom passed away in May at 94yrs. old. Now when I look back, I see her multiple diseases were wearing her out. She just couldn't do it any more.
It ain't easy being green. Get involved in support groups for yourselves. Get outside sources involved in her care. Try PT services for mobility. Get a bench walker ( if approved by PT) to assist with mobility issues. Get the American Cancer Society involved through programs they offer regarding emphysema issues. How about involvement with the Alzheimer's Association? How about volunteer activities for HER to participate in? There are things that she can do that don't involve tugging and lifting that she can do with her problems and they can help her feel useful. That will cut down on some of it. If she truly has a depression problem that has a medical diagnosis associated with it, get her into counseling. Have you consulted with her doctor on any of these things?
Have you thought about sending her to Adult Day Care ? Even if you only did it once a week, it might give her something to look forward to. She would be around others and they have activities based on each persons abilities. Even if she just went and sat there, she would be around others and in a different environment. The one here in Indianapolis provides breakfast and lunch for them too and it's $75 day. Giving her something to look forward to might help take her mind off of her situation and give you a break. Secondly, I would get her on antidepressants if she isn't already.
For me it was when I found my father watching the TV in the dark, and the TV was off. I asked him what he ate for dinner, and the answer was, "nothing. I didn't know what I wanted." That's the day I told him the time had come and I moved him into a mobile home in my front yard. I told him I needed 3 months to get him stable and then he could return to his home, 3 miles away.
He lived another 5 years and was happy with the move after 24 hours. He never wanted to return to his home after the first 24 hours.
That’s a great idea. So he was sort of integrated into your life again, yet had his own space? Did he become more independent and alert or did you have to make sure he fed himself and follow up on his other tasks and needs?
Does your mother like or tolerate animals? Would there be a trained therapy dog program in your area that would make home visits? (You did not mention whether there were any pets in the home. Pets are not always safe when there are mobility problems.).Even a friend with a gentle, intuitive animal might work, although trained therapy dogs often do a better job of interacting with "patients. ". Some may do this on a Volunteer basis. I have never investigated the idea, but my reaction to your question was that maybe your mother would respond to contact with a friendly animal.
I'd say that depression is probably causing her to feel ?nagged?. Is she on antidepressants? It can take awhile for antidepressants to work - and they usually need adjusting dosages and combinations of medications.
She has significant physical challenges that sap her energy every day as well - poor oxygenation from the emphysema, post polio syndrome and other orthopedic issues.
Seems she has "hired help" which are taking care of her. The goal is for her to be clean, fed, comfortable and engaged in relationships. I know you would like her to "do more" for herself, but the reality is that this will become less and less with time. Try to get her to engage in relationship with you and let the staff handle the physical challenges.
one can be Too much of a Nag but as long as Mom is Cleaned and Well Taken Care of, No Need to Nag all of the Time. The Trivia things Only, Let her Go though, It only make her More Depressed, Try and Cheer her up Instead. With her Demetria, She doesn't Realize much of the time what she may Say or Do, But kindly Try and Remind her that No Bug Bugs will Do.
Remember what you're doing all this work *for*. If it isn't to make your mother feel comfortable, as well as possible, safe, and loved, what then?
Say your mother (not yours specifically, anyone's) has just had a hip replacement but is otherwise fine. The wound hurts, the surgery is traumatic, she's probably feeling pretty miserable, her confidence may be at a low ebb, she may not want to do her PT. But you know, and it's a reasonable expectation, that if she puts in the work now, even though she doesn't feel like it, it will very soon pay off for her - she'll get a better result from her surgery, and with any luck she'll soon be back on her feet and doing better than she was before. Definitely worth the nagging/bribery/cheerleading. Short-term pain, longer-term gain, and a gain worth having.
But when a person has a whole shopping list of health issues, and those issues include certain conditions which can only deteriorate, and that person's quality of life can't reasonably be expected to improve significantly - what return on the effort you want her to put in can she look forward to?
Take the oxygen as an example. If your mother uses it as directed, it will improve the oxygen supply to the whole of her body (including her brain) and that is obviously a good thing. But it won't make her well. She will still be ill and still feel ill; and the oxygen is uncomfortable to use and has side-effects of its own. So you're asking her to put up with the discomfort for... what? If she sleeps better and more comfortably without it, isn't that a greater benefit?
There is always a fine line to tread - and the line keeps moving, which isn't fair! But "am I doing her any real good?" is worth asking yourself when you're in doubt.
lefty, after all the dialog above I’ll just add that I too am in the nagger position and it is so hard! Favorite advice here is to ask why not, and discuss outcomes. My mother uses her rollator poorly, arms fully extended - and ‘it’ is dumb, it runs away with her. When we comment and try to get her lined up well with it, she gets really angry. I asked her quietly recently, what we are supposed to do. She said let me do it my way. You’ll fall. Okay, then I’ll fall. And I think she really means it. What I need though is to record her saying it, and I think I will. Bless them all.
Like you and MacinCT, my MiL had trouble using her rollator, holding it too far in front and not able to use the brakes on it so that it would run away with her. “I ran into the door/cabinet/wall, otherwise I couldn’t stop!” PT had her change to a straight walker, which she still doesn’t like, she misses the seat on the rollator, but there’s no going back now. MiL also doesn’t want to do all the PT that’s ordered for her. Most of the family pushes her to do it, with the “use it or lose it” attitude , but some think PT for a weak 94 yo is just torture. She always agrees to it when the dr suggests it, but then never wants to complete the full program.
I absolutely am disgusted by people, anyone, who is supposed to do things and they just simply won't cooperate and they end up causing irreparable harm to themselves and to everyone around them. I simply will not tolerate this from anyone, regardless of the reasons. First, I will go above and beyond to do everything I can to help them in any way possible and get them to see the "light" but you know that does simply not always work. When there is harm being caused and damage is being done all around, I find one has to get very tough and take appropriate action. That would include getting all kinds of information and help from all possible sources. Then I would sit this person down and explain the ramifications their behavior is causing and that it simply will no longer be tolerated. Lay out some specific rules. If nothing improves, then tell them they are going to be l00% on their own and they will be moved into a facility and you will move on. This is not cruel - it is tough love and in many cases it will work. If not, do you deserve this? If not, be smart, move on and look out for YOU. Sometimes you have no choice and time will prove you did the only right thing you could do given the circumstances.
Yes!! It is maddening when people refuse to do what they need to do! It’s even more maddening when others around them just shrug and say “oh well, they’re just stubborn/old/like that” and accommodate them. Nope! Unless there’s dementia or any mental impairment, they need to cooperate and not be given a pass.
I posted elsewhere on here about the roommate my husband’s grandma had in a NH. Her family told us she’d had hip surgery and then refused to do physical therapy. She actually CHOSE to be bedridden instead. Why would someone want to be bedridden when they didn’t have to be?
In this woman’s case, it became evident to me why she chose bedridden— her family visited almost daily and would fuss over her: “Do you want us to bring anything? Need me to change the channel? Need me to fluff your pillow? We brought you dinner!”. And the woman loved every second of it. She was willing to sacrifice mobility and independence so she could be waited on and made the center of attention.
She has no dementia so is capable of making her own choices - if it were me I would be furious at you thinking you should push me at all, my life is mine and its nothing to do with what you want. I go along with mydaughterinlaw about documenting things she refuses but she is entitled to make her own choices even if she deteriorates and ends up passing. The only think I would get involved in is management of her depression by her Dr as whilst the choice is hers, she has to be mentally fit enough to make the choice which uncontrolled depression could clearly have an effect on.
Boy your mom (and therefore you) has a lot of stuff going on.
Is anything being done to treat her depression? If not, maybe that would help. My mom was crying or feeling like crying a lot and just couldn't keep it together and is on something now that has taken the edge off.
It's tough to decide how much to push them! We want them to do all they can for themselves and keep moving and be independent, etc. But they often don't seem to give a crap about these, and other things, that are good for them and what I see as the "right thing to do".
If her depression gets managed, she may become more cooperative.
Boy did you ring a bell for me about some bad times with my 93yo mom a couple of years ago:
All through the fall I had a hard time with her just to wake up to eat some days much less to change her wet clothes!
I tried to get family involved but they were not understanding the severity of the problem so I was totally isolated with her.
Over a few months, she would lapse into this phase and I would tell myself not to lose my temper as I went to her throughout the day: “It’s noon now and you need to eat.” “It’s 2 in the afternoon you’re not going to be able to sleep tonight.” “Mother! It’s 5 it’s getting dark now!” And on and on and on.
I couldn't just lift her up by myself, no one would come, and THERE WAS NOTHING WRONG WITH HER!!
In January, after she went to bed the day after Christmas and refused to get up we had routine dr appt and he ordered in home health for strength building. She completed that but didn’t follow through on the treatment plan.
Then in April she had a minor fall. Said she was fine that night and was interacting with me like normal. The next day she decided not to get up and blamed the fall.
FINALLY! The family got involved and my big old son-in-law literally picked her up from bed and they took her to ER. She had not had a bowel movement for 11 days! She was admitted and came home with therapy and we got her to keep a “poop” diary from then on.
I remember crying to her to please please just not give up like this. Please make an effort to help yourself. Other times I would stamp my foot at her, “I could get arrested for you laying in that wet bed!” ”This is my job to get you up!”, “You’re not going to just up and die on my watch for no reason.”
I know my problems were not as complicated as yours are and I’m sorry for whining as if they are. I’m just trying to say I know how you feel about not knowing what to do.
Fortunately for us, my mom turned herself around and now gets up and dressed every day. It’s our routine now and I just realized how much I’ve taken it for granted now.
Im going to her right now and show her how much I’m glad she’s improved.
As as far as what I insist that she do, I draw the line at making her do her exercises. She doesn’t respond to me about them and turns into a whining child about how she’s done them on her own and stubborns up about it. I insist that she have a good meal when she doesn’t want to but I don’t nag too much about staying up or sleeping too late. She now toilets regularly herself and rarely has accidents. God bless her for turning herself around but I’m sorry to say she’s very weak and soon will be completely chairbound from not moving around enough. I’m not going to torture her about it anymore.
I am wondering if the ‘pushing’ that your mother resents is about mobility exercises. Most of the answers so far have been about continence and bathing, while most of your mother’s problems are about mobility (even emphysema can mean breathing exercises). I have a friend with post-polio syndrome, and he talks about the pain coming from a life time of over-straining muscles for walking that are not the normal ones used. I can imagine that your mother finds PT a real strain, and possibly quite painful. Perhaps you could get some medical advice about whether it really is necessary, in view of her age. It’s clearly a different issue from hygiene.
Do you think that perhaps depression is not a realistic, proper, response to the amount of loss your parent is in the midst of? I cannot quite imagine someone having a "Pollyanna" attitude to the number of physical and mental issues you have mentioned. I think that you will do her a great favor by simply listening to her. When she expresses her depression ask her to tell you about some of the issues that worry and concern her the most. As with most things, we don't really expect an answer; we honestly need just to be LISTENED to. To push, to deny what is happening in her life, is to negate her completely....to rob her of all humanity, to deny her reality. Please do her the honor of listening to her. As to "pushing" her, I agree that age is a kind of "use it or lose it" thing, and our bones and muscles need movement. But with dementia she won't remember that, with emphysema won't be able to breathe to do it, with mobility problems----well, I imagine you see my point. Nagging adds but one more issue to the pain your parent is enduring. Try with all your heart and soul to spare her. Offer your support, a nice ride in the country, make a cake with her, do a simple puzzle. Hey, if it were me you could listen to my favorite true crime podcast with me. Wishing you good luck going forward; I know you are trying to do as you think best for her, but please try to remember the limitations, and try to empathize with what she may be feeling.
According to your profile your mother is living in your home. Protect yourselves by documenting her refusals. Wearing a BIPAP is not something that you can say "If you wear it today you won't have to wear it tomorrow" so document that you put it on her and she took it off.
Be objective in your documentations. It's time to keep a daily diary about your mother's refusals e.g. "Refused dinner" "Refused bath" "Refused change of clothing" "Removed clothes".
Also, have your mother evaluated for antiagitation medication. If she's at the stage of dementia where she's actively fighting the world around her and impossible to control even for her own good, then it's time for medication. Medication need not be permanent but it will help keep her from injuring herself and others due to agitation.
She's probably overwhelmed by the combination of conditions, and perhaps just doesn't feel up to making decisions. Curiously enough, last evening I began reading a book I'd read several years ago. One of the characters is only about 50, but was in the midst of a serious legal and financial crisis, and, guess what? She couldn't make decisions. She didn't want to get out of bed, get dressed, think about the problems; she just wanted to retreat into herself.
The author is well respected, and it's pretty clear to me that she draws a lot on her own experiences. I thought it was interesting that some of us not only face similar situations, but respond in the same way. Decision making can be complicated by so many factors.
I would start with the easiest issues/tasks, perhaps write them down, and write down options as well. Then leave the list with her to peruse at her leisure, and decide, in privacy, if any of the solutions appeal to her.
That takes the pressure off her to decide, and gives her more of a sense of control, something that people really need as they age.
It may be that she never does decide, but at least she'll have a vacation from decision making for awhile.
Obviously this doesn't apply to time or health critical issues such as an ER visit, or taking prescribed meds.
I've thought for some time that some issues, like mandatory bathing at specific intervals, only provoke the feeling of loss of control, but can contribute negatively to the fact that the person is becoming or is very dependent on someone else.
I think you should only insist on things that are going to directly impact you and allow her to be self determinate about all the rest, even if that means allowing her to do things that are self harmful. In a care home residents are generally allowed refusal after 3 attempts, so that may be a good guideline to follow. So for example, don't nag about what she eats but buy foods and set meal times that are convenient for the rest of the family. Insist on cleanliness, but don't be rigid about how or when she bathes. I was straight up with telling my mom that she needed to help me to help her because I wouldn't be able to care for her at home if she became too frail/ill, but that was a big stick I seldom resorted to.
Lead by example. Go talk to her & start talking to her like a friend you are close to. Anything. Give her company. If she needs to do something & doesn't want to do it find out why. Then you can handle the why. Like we do with our children, we help them & make it fun.
Lefty3; Hello thos is a good question, I can tell you what I do ,this is especially with my mom my mother is very sweet she's so nice everyone who meets her LOVES Her they say your mom is just sooooooo cute and shes just the sweetest and they are right my mom dont have a mean bone in her body but she hates PHYSICAL THERAPY!! LOL. Oooo man does she hate it lol she says Well "I get up to go to the bathroom that's enough "I used to argue with my mom about PT ,and cleaning her room or just not knocking down all the clothes that I just hung up!!but I just try to not get her upset so I have her GRANDSON MY NEPHEW CLEAN HER ROOM AND SHE GETS RIGHT IN THERE AND WORKS with him , its perfect because then he goes home and she cant blame me for misplacing her stuff, im not trying to complain Im just letting you know there are other people out there .....the same way! Lol my sweet mom gets so mad at me when I try to get her to do her assigned PT. SO IF I THINK SHE NEEDS IT I GET HOME HEALTH CARE OUT TO THE HOUSE.
You might find the book “Being Mortal, Medicine and what matters in the End” by Atul Gawande, helpful. It IS hard to know how hard to push sometimes. I understand that. If you google this book you can find interviews of Mr Gawande. Look for his Five Questions. There are worse things than death and there are things that make life worth living.
There are some common misconceptions about making a patient do something they don't want to do. One phrase that used to tic me off was, "Don't ask her tell her....She's taking a bath whether she likes it or not." This used to make me feel more like a failing salesman than a caregiver and used to spark off my anger. Another phrase you might hear is, "She has a right to refuse," and they think they should have the last word. This is wrong and so many people doing personal care have not been trained properly. In some cases, it is illegal to force a patient to do something they don't want to do but It is completely legal to use persuasion when faced with a refusal.
It is also illegal to leave a demented or helpless patient without care just because they refuse help. I have seen caregivers be sent home in the middle of the shift because they thought their demented patient had a "right to refuse" and didn't request help from the staff when their patient spent hours in a urine soaked bed.
Some patients respond well to a magic phrase that works to change their mind, ie, "If you do it today, you won't have to do it tomorrow."
You can list all the consequences of their refusal since they have a right to be informed.
They might tell you, "No means no." and each time a patient says this, the refusal has to be evaluated according to the individual patient and what their problems are and how many hours they might continue to refuse.
You made mention of dementia and this means you have to use your own judgement on how much care is given. If a baby or old person keeps saying "no" and insists on staying in a wet diaper, they can't be given their way. It's a good idea to see if they will let one person help them in preference over another.
You mentioned emphysema so you would not want to push the patient so hard they get exhausted.
It might be a good idea to bring in a nurse and create a care plan. They have experience in discussing these things at great length and can help guide you.
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This is really about all you can hope for, especially with dementia. Perhaps what you think is encouraging her is viewed by her as nagging. Maybe try giving her choices, especially for issues like eating and drinking. Find ways to make it her "idea." Then you aren't forcing anything, she gets to choose! I was told by the staff at mom's MC facility that they cannot 'force' anyone to do anything, even those with dementia. What they do is coax, over time, and get the person to comply eventually. It doesn't always work though. Recently they tried OT/PT after mom had some non-injury tumbles and then refused to use her walker, complaining she was going to fall. She ABSOLUTELY refused to work with them and they had to give in.
Something not as healthy as we would like but she would enjoy eating/drinking would be preferable to refusing everything. Offer food/drink at random times - inactivity and age can dampen appetite, so she may not be hungry at "normal" mealtimes. I generally eat when I am hungry, not because a clock tells me it is X mealtime. Rather than presenting foods, ask her what she would like, even if it is more snack-like foods. Given her various issues, it isn't like eating strictly healthy foods is going to help improve the issues (yes, they would be better, but again something is better than nothing!)
Ask her what she would like to eat or drink rather than focusing on EAT, DRINK. Our mom still eats/drinks, but will refuse some things, or just push them away. Ice Cream bars? OOOO yes please! If/when the time comes that she will only eat these, so be it.
Is she on any kind of anti-anxiety meds? Getting her to wear the pap at night might be easier if she takes something before bedtime. We only use a minimal dose Lorazepam as needed (needed it for UTI behavior!) and it amazed me that 1) it works so quickly and 2) it doesn't take days or weeks to build up in the system. Obviously your mom's other medical issues would have to be taken into account, but if you work with doctor/pharmacist, perhaps something could help make her a little more compliant/less depressed (along with making suggestions/giving choices.) Not so sure about anti-depressant medications - the only experience I have with them is reading/seeing ads, and on seeing/hearing the side-effects, including suicidal thoughts, I often wonder how they can consider these anti-depressants! I've also seen how some medications don't work well for some people and/or conditions, but when other meds are tried, they do the trick.
It isn't an easy path, and one can easily fall into the trap of nagging without realizing one is nagging!
After 10yrs of this, I realized I'm not going to change her. I had to change my thinking because I was driving my self crazy trying to fix her. I had to start fixing myself and readjust my thinking. I wish I would have recognized this sooner. So I let her be and stopped "nagging" her. Her quality of life was not going to improve no matter how much excersize she does, how healthy she eats or how happy she may be. My job now was to make sure she is fed, clean, safe, and comfortable. This is the best thing I could have done for her.
Mom passed away in May at 94yrs. old. Now when I look back, I see her multiple diseases were wearing her out. She just couldn't do it any more.
Good for you, though. I need to try to let go a bit more myself! Any advice on HOW?
He lived another 5 years and was happy with the move after 24 hours. He never wanted to return to his home after the first 24 hours.
She has significant physical challenges that sap her energy every day as well - poor oxygenation from the emphysema, post polio syndrome and other orthopedic issues.
Seems she has "hired help" which are taking care of her. The goal is for her to be clean, fed, comfortable and engaged in relationships. I know you would like her to "do more" for herself, but the reality is that this will become less and less with time. Try to get her to engage in relationship with you and let the staff handle the physical challenges.
With her Demetria, She doesn't Realize much of the time what she may Say or Do, But kindly Try and Remind her that No Bug Bugs will Do.
Say your mother (not yours specifically, anyone's) has just had a hip replacement but is otherwise fine. The wound hurts, the surgery is traumatic, she's probably feeling pretty miserable, her confidence may be at a low ebb, she may not want to do her PT. But you know, and it's a reasonable expectation, that if she puts in the work now, even though she doesn't feel like it, it will very soon pay off for her - she'll get a better result from her surgery, and with any luck she'll soon be back on her feet and doing better than she was before. Definitely worth the nagging/bribery/cheerleading. Short-term pain, longer-term gain, and a gain worth having.
But when a person has a whole shopping list of health issues, and those issues include certain conditions which can only deteriorate, and that person's quality of life can't reasonably be expected to improve significantly - what return on the effort you want her to put in can she look forward to?
Take the oxygen as an example. If your mother uses it as directed, it will improve the oxygen supply to the whole of her body (including her brain) and that is obviously a good thing. But it won't make her well. She will still be ill and still feel ill; and the oxygen is uncomfortable to use and has side-effects of its own. So you're asking her to put up with the discomfort for... what? If she sleeps better and more comfortably without it, isn't that a greater benefit?
There is always a fine line to tread - and the line keeps moving, which isn't fair! But "am I doing her any real good?" is worth asking yourself when you're in doubt.
I posted elsewhere on here about the roommate my husband’s grandma had in a NH. Her family told us she’d had hip surgery and then refused to do physical therapy. She actually CHOSE to be bedridden instead. Why would someone want to be bedridden when they didn’t have to be?
In this woman’s case, it became evident to me why she chose bedridden— her family visited almost daily and would fuss over her: “Do you want us to bring anything? Need me to change the channel? Need me to fluff your
pillow? We brought you dinner!”. And the woman loved every second of it. She was willing to sacrifice mobility and independence so she could be waited on and made the center of attention.
I go along with mydaughterinlaw about documenting things she refuses but she is entitled to make her own choices even if she deteriorates and ends up passing. The only think I would get involved in is management of her depression by her Dr as whilst the choice is hers, she has to be mentally fit enough to make the choice which uncontrolled depression could clearly have an effect on.
Is anything being done to treat her depression? If not, maybe that would help. My mom was crying or feeling like crying a lot and just couldn't keep it together and is on something now that has taken the edge off.
It's tough to decide how much to push them! We want them to do all they can for themselves and keep moving and be independent, etc. But they often don't seem to give a crap about these, and other things, that are good for them and what I see as the "right thing to do".
If her depression gets managed, she may become more cooperative.
Boy did you ring a bell for me about some bad times with my 93yo mom a couple of years ago:
All through the fall I had a hard time with her just to wake up to eat some days much less to change her wet clothes!
I tried to get family involved but they were not understanding the severity of the problem so I was totally isolated with her.
Over a few months, she would lapse into this phase and I would tell myself not to lose my temper as I went to her throughout the day: “It’s noon now and you need to eat.” “It’s 2 in the afternoon you’re not going to be able to sleep tonight.” “Mother! It’s 5 it’s getting dark now!” And on and on and on.
I couldn't just lift her up by myself, no one would come, and THERE WAS NOTHING WRONG WITH HER!!
In January, after she went to bed the day after Christmas and refused to get up we had routine dr appt and he ordered in home health for strength building. She completed that but didn’t follow through on the treatment plan.
Then in April she had a minor fall. Said she was fine that night and was interacting with me like normal. The next day she decided not to get up and blamed the fall.
FINALLY! The family got involved and my big old son-in-law literally picked her up from bed and they took her to ER. She had not had a bowel movement for 11 days! She was admitted and came home with therapy and we got her to keep a “poop” diary from then on.
I remember crying to her to please please just not give up like this. Please make an effort to help yourself. Other times I would stamp my foot at her, “I could get arrested for you laying in that wet bed!”
”This is my job to get you up!”, “You’re not going to just up and die on my watch for no reason.”
I know my problems were not as complicated as yours are and I’m sorry for whining as if they are. I’m just trying to say I know how you feel about not knowing what to do.
Fortunately for us, my mom turned herself around and now gets up and dressed every day. It’s our routine now and I just realized how much I’ve taken it for granted now.
Im going to her right now and show her how much I’m glad she’s improved.
As as far as what I insist that she do, I draw the line at making her do her exercises. She doesn’t respond to me about them and turns into a whining child about how she’s done them on her own and stubborns up about it. I insist that she have a good meal when she doesn’t want to but I don’t nag too much about staying up or sleeping too late. She now toilets regularly herself and rarely has accidents. God bless her for turning herself around but I’m sorry to say she’s very weak and soon will be completely chairbound from not moving around enough. I’m not going to torture her about it anymore.
I think that you will do her a great favor by simply listening to her. When she expresses her depression ask her to tell you about some of the issues that worry and concern her the most. As with most things, we don't really expect an answer; we honestly need just to be LISTENED to. To push, to deny what is happening in her life, is to negate her completely....to rob her of all humanity, to deny her reality. Please do her the honor of listening to her.
As to "pushing" her, I agree that age is a kind of "use it or lose it" thing, and our bones and muscles need movement. But with dementia she won't remember that, with emphysema won't be able to breathe to do it, with mobility problems----well, I imagine you see my point.
Nagging adds but one more issue to the pain your parent is enduring. Try with all your heart and soul to spare her. Offer your support, a nice ride in the country, make a cake with her, do a simple puzzle. Hey, if it were me you could listen to my favorite true crime podcast with me.
Wishing you good luck going forward; I know you are trying to do as you think best for her, but please try to remember the limitations, and try to empathize with what she may be feeling.
Be objective in your documentations. It's time to keep a daily diary about your mother's refusals e.g. "Refused dinner" "Refused bath" "Refused change of clothing" "Removed clothes".
Also, have your mother evaluated for antiagitation medication. If she's at the stage of dementia where she's actively fighting the world around her and impossible to control even for her own good, then it's time for medication. Medication need not be permanent but it will help keep her from injuring herself and others due to agitation.
The author is well respected, and it's pretty clear to me that she draws a lot on her own experiences. I thought it was interesting that some of us not only face similar situations, but respond in the same way. Decision making can be complicated by so many factors.
I would start with the easiest issues/tasks, perhaps write them down, and write down options as well. Then leave the list with her to peruse at her leisure, and decide, in privacy, if any of the solutions appeal to her.
That takes the pressure off her to decide, and gives her more of a sense of control, something that people really need as they age.
It may be that she never does decide, but at least she'll have a vacation from decision making for awhile.
Obviously this doesn't apply to time or health critical issues such as an ER visit, or taking prescribed meds.
I've thought for some time that some issues, like mandatory bathing at specific intervals, only provoke the feeling of loss of control, but can contribute negatively to the fact that the person is becoming or is very dependent on someone else.
It IS hard to know how hard to push sometimes. I understand that. If you google this book you can find interviews of Mr Gawande. Look for his Five Questions. There are worse things than death and there are things that make life worth living.
Another phrase you might hear is, "She has a right to refuse," and they think they should have the last word. This is wrong and so many people doing personal care have not been trained properly.
In some cases, it is illegal to force a patient to do something they don't want to do but
It is completely legal to use persuasion when faced with a refusal.
It is also illegal to leave a demented or helpless patient without care just because they refuse help. I have seen caregivers be sent home in the middle of the shift because they thought their demented patient had a "right to refuse" and didn't request help from the staff when their patient spent hours in a urine soaked bed.
Some patients respond well to a magic phrase that works to change their mind, ie,
"If you do it today, you won't have to do it tomorrow."
You can list all the consequences of their refusal since they have a right to be informed.
They might tell you, "No means no." and each time a patient says this, the refusal has to be evaluated according to the individual patient and what their problems are and how many hours they might continue to refuse.
You made mention of dementia and this means you have to use your own judgement on how much care is given. If a baby or old person keeps saying "no" and insists on staying in a wet diaper, they can't be given their way. It's a good idea to see if they will let one person help them in preference over another.
You mentioned emphysema so you would not want to push the patient so hard they get exhausted.
It might be a good idea to bring in a nurse and create a care plan. They have experience in discussing these things at great length and can help guide you.