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.
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.
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.
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.
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.
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.
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.
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'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.
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.
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.
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.
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.
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.
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?