It is not easy by any means, but what is the option? At least we can try to understand and remind ourselves to respond differently. We might forget, that's okay, we start again. If we continue our ways of doing things, it is not going to help any way and everyone, you included, would be more frustrated/angry/stressed out any way. At least we can make the choice and try to make things easier for everyone concerned.
Terrygma, u could be talking about my Dad. One difference is the drinking. He is gone but if he wasstill here, he wouldn't be living with me. He never made life easier for my Mom. I checked on him all the time Mom was taking care of my sister in another state. Everyday I had to clean up the bathroom.
Doingbestican you could be speaking for me. That is exactly how my dad treats me. It is my duty to care for him and if he has any feelings about how I feel I would not know. Thanks for sharing your story. I feel better and not so alone
I know I am late to this discussion but I agree with doingbestican! I sometimes think that but the reality of it is my dad can do a lot of things for himself but he doesn't he just manipulates everyone into doing everything for him. Right now that everyone is me and only me. He also will say something to provoke an argument between people in the family and then sit back and smile about it while everyone is flipping out screaming at each other. And he wasn't the perfect model parent and always cared about what I wanted or what my sister wanted, I think our parents still live by the rule of children are to be seen and not heard because that's how we were treated growing up. I spend nearly every minute that I am home doing something for him or cleaning up after him or making sure his comfort in his needs are met. do you think he does one damn thing for me? No he does not. but he can damn sure toddle himself outside to smoke his cigarettes or toddle himself into the kitchen to fix his Jim Beam at 4 o'clock every day.that seems to be no problem for him at all. I have his medicines all in those little Monday through Sunday containers and he can't even remember to take his pills I have to do that too. He has been at my house for 7 days now and I think he just brushed his teeth this morning for the first time even though I got brand new toothbrushes for him and mouth wash and set everything right by the sink which by the way is covered in all of his things with no room for my things at all anymore. having one bathroom is a huge problem when you are care giving. I told my dad today that he doesn't care what is going on as long as his comfort and his needs are met and he did not like that but he did not disagree with me either. it's like you can't say what is frustrating you because it makes you the bad guy.
After reading bee1998's post, I just want to add a note: In my case, it wasn't so much that my folks ever had any intention to cause me hurt . It was just some deep seated beliefs that were (unconsciously on their part) quite hurtful to me. I'm talking about the old fashioned idea that women are less. Less than men. That women exist on this earth only for the purpose of being servants. That we should not have any life beyond wife, mother, daughter. We shouldn't have political opinions because we are female. We shouldn't do any job not typically female.
Even as a child it was my job to do housework, whereas my many brothers were excused because they were male. I was told, men don't do dishes, or cook or, clean house. The boys could go places and do fun things, but I was told "no" on the basis that I was a girl. And above all, it was a woman's job to do what she's told.. ... I think I spent most of my childhood screaming: "It's not fair!"
But "fair" was not a concept that they understood in this context. How could it be unfair to expect you to be what you are? Because, after all a female is a creature who only exists for the sole purpose of doing work for other people, and not to have fun. It would have seemed to them like, the floor objecting to being walked on. It's was you are. Needless to say it was a constant argument that I had to live with until I married and got the heck out of there.
Now fast forward to years later and their minds and abilities are fading. The same attitude kicks in again only far stronger and far more unreasonable. I had a psych teacher who once said that whatever quirks or negativities and opinions you had when people are young, just become a dozen times stronger as you grow old. (example: The person who was money conscious becomes down right cheap. ) And I think that applied to my folks, especially my Dad.
For every problem that they needed help with, they expected me to fix it. After all, that's what women are for, to do the work. They would never even consider asking brothers to help, no matter how much I had to do. The excuse was that: "You know they're men. They are busy." The fact that I too had a difficult job, never seemed to register with them.
One of Dad's frequent comments was: "You are my daughter, You have to do this !!" And he could never ever fathom the idea that I might object to giving up everything in my life to take care of him. Once, when I told him he had to stop demanding so much of me, he answered: "Why not? That's why you're here. You're my daughter, you have to do what I say!"
I find it impossible to consider that "an effort to do his best." All his effort was toward getting me to do everything, his way, with no consideration of me whatsoever. It's very hard to keep busting your butt for someone who barely considers you a human being.
And while most of this post is not directly on point, it does reveal a bit more of why my brothers have never helped, and fits with the theory that parents definitely do not raise all their children the same way. It's obvious to me that it was ingrained in my brothers from childhood, to expect me to "do it all", and for them to feel excused. Why would things ever be different when the folks were old, and the work load so much heavier.
In spite of the upbeat air of my previous comment, I do agree with Gayle and others who are up against a concrete wall with their parent or other. Sometimes I ask myself, "Am I obligated to bend over backwards to make a woman who has always been a narcissistic control freak feel good about herself just because she is old and suffering dementia?" She was a good, dedicated mother and I love her, but she always had to have the last say, is always right, dismissive of other people's opinions (unless they jibe with hers), and dementia has just made her more stubbornly self-righteous. My father and three brothers each let her have her way, while I, the only daughter, butted heads with her from my teen years onward. Now I find myself in the position of having to play her games just because she's in lala land. Too often I revert to the old combative role, even though I know it's fruitless... but then, it always has been. [sigh]
Gayle, I fully agree with your comment. "Trying the best they can with what they have left" can still mean "trying to manipulate and hurt you" even in dementia.
Teepa thank you for those words of wisdom. Although it may not be an exact fit for everyone's situation, I believe it is good advice. I am just at the beginning of this sad and ugly thing called dementia. My Mom is showing signs here and there. It is frustrating to the caregiver for sure. You hear your parent repeat something one day and the next day they have no idea. It's sad to see a loved one go through this. I think out of all of it, keeping them safe is the most important thing. I can sympathize with other people who have the issues with the hearing aids. my mom has two of them and refuses to wear both. She will put one hearing aid in but you have to get her on a good day to cooperate sometimes. It makes it much easier if you do establish a routine, and the hearing aid is the first thing that I hand her in the morning to put in. This will help to eliminate the yelling that takes place otherwise. I look forward to reading more information on this. I'm finding that a lot of these tips are very helpful.
The rules are slightly different when you are dealing with someone who had a pre-existing mental illness, personality disorder, addiction, or other problem of that nature. (Like my mom).
Teepa's instructions are first for people who are NOT dealing with that kind of scenario. Even so, I have found her instructions to still work for me if I have figured out how to apply them in any given scenario.
This was also true when I had to learn a different way of responding to my son on the Autism spectrum. Traditional parenting techniques didn't work, so I had to learn how to change MY approach to have a decent day.
Most of the time *I* have to figure out how to respond to mom in a way that will calm her, which usually means telling her what she needs to hear at that moment. "The police have found your baby and have taken it to the doctor." "Your mom & dad are still together and happy." "Your pet dog is very happy and loves to play out on the farm" "The house is just like you left it." "Daddy will be by after work." WHATEVER IT TAKES to keep her calm, even if it's not exactly factually accurate. Factually accurate does not matter one little bit.
My mom is on anti-psychotics, anti-depressant, and other meds for blood pressure, diabetes, & cholesterol. She is bi-polar and has Cluster B personality disorders and several paranoid psychotic breaks over the years. She is a hand-full on a good day. And let's sprinkle moderately sever dementia on that ice cream sunday for fun.
If you are so frustrated and getting to the point where you think you are going to break or lash out, you have to get some help. Nobody can do dementia care as if they are Mary Poppins around the clock, and everything is sunshine & roses. Dementia care can be pure living h*ll if we're going to be honest. If you are approaching your breaking point, it's time to find some support from social services, area agency on aging, family, church/temple/mosque family, neighbors, and counseling. Look into respite care options to get yourself a break.
Nothing good comes out of having a burned out, strung out caregiver in charge of a vulnerable person.
Teepa, your youtube videos saved me when I had to move my mother from NC to MN in 2013. I had no experience with dementia whatsoever. You get the award for doing the best impersonation of my mother physically possible! Bless you, bless you, bless you, bless you.
Excellent information. And I have seen Teepa Snow's presentation of "Gems" as related to the several stages of Alzheimer's and recommend that highly also! We're using that information in training our Congregational Care home visitation team.
My Mom has Dementia and I have no patience. My husband thinks I should bring her up to my Den during the day. I help her in the morning to dress and get her breakfast. I get her lunch. Both she eats in her room in the lower level of my split level. She has her bed, lounge chair and TV and her bathroom. Most days she is OK there. Sometimes she complains about being alone. My husbsnd has to be here to bring her up to the living area. She is not good enough on her feet for me to get her up and down. I'm 5ft tall. Nights we eat out or st home and she watches TV with us. My Den is my way of getting away. Its hard seeing my Mom this way and its just me dealing with it. So far she is easy. But I can't hold a conversation with her. She does use the wrong words. Its later when I realize what she was trying to say. What gets me is she gets confused where her bathroom is (right in front of her chair) but remembers the new nurses name even after a couple of weeks later. She has been with us five months. I don't think they understand what we r doing for them. They just know they are confused and aren't able to do what they used to.
The person whose father has Alzhemiers, u should take his car keys away. One day he is going to get confused and lost and cause an accident. Take him to ur DMV and have him tested. A friend of mine's husband lost his wallet and keys. She told him he couldn't drive without his license or keys. She eventually found both but never told him. She sold the car he drove. Out of site, out of mind.
Gayle, I am so glad my Dad went before my Mom. Because of his health problems, he got more verbally abusive and demanding. I would never been able to deal with it and being the only child living in the same town, he would have been in a NH. He was never an easy man to live with. I think u made a good decision.
I start my moms' day with music she likes and I dance around--she smiles. I say: This is going to be a great day. I love you. it makes both of us feel better. I am relaxed and she is in a better mood. When I get tired or stressed--I walk around(up and down stairs) or start laundry--to take some "busy me" time and calm myself. I hug her a lot. I tell her that I love her a lot. I ASK her if she wants my help or if she wants to do it--if she resists my help.She usually allows me to do it--then. I DO take deep breaths A LOT. I also take power naps while she watches TV or eats--just 5-10 minutes with my head down. I say out loud--often: I am grateful that God gave me to you and you to me. I am grateful for sunshine. I am grateful for... I always say 3-5 things for which I am grateful. They change as new things occur or come to mind. I tell myself daily--she is doing her best;and so must I.
I am so glad my mom does not have dementia, but she can have good days/bad days, and be very stubborn, so the advice here is going to work really well with her, especially the first one "Step Back". I always want to be so "active" and probably better to do the momentary step back, re-think.
It's especially hard when a person takes their meds and hides them. When they hate you, hit, punch and verbally abuse you. Blame you for everything, lie about something even when you're watching them. Yes walking away sometimes helps but not always and hiding from them does not help all the time. Yes dementia is very hard, ups and downs, walking on egg shells and never knowing if the next second will be another bomb going off.
It's ok but not really practical for a husband that has been a 24/7 caregiver for a long time as he does play out trying to do all the right things(as you suggest)
Teepa, do you make house calls? LOL! Thanks for sharing your knowledge and insights.
The approach I use to get my mother to cooperate with necessary actions, like eating or going to the doctor's, is not to ASK her and not to TELL her, but to simply follow through with the action as if she were already on board with it. (If I can make her think it was her idea, all the better.) "Here you go, Mom. Would you like some butter on your carrots?" (NOT "Would you like some carrots?" or "Eat your carrots. They're good for you.") The strategy here is that the carrots are a given and it's the butter that's an option for her to accept or reject. I used to use this tactic with my toddlers. "Do you want to wear the red shirt or the blue shirt or the yellow shirt to church?" to avoid them picking out something entirely inappropriate and throwing a tantrum when I nixed it!
The other day my brother and I got Mom to see a dentist for the first time in years. She kept protesting that she didn't need to go because she has dentures. (Very important to have mouth and dentures checked every year!) Took her out to lunch, then drove to the dentist's office. I went ahead into the office to explain the situation while my brother was coaxing her out of the car. The staff was fabulous. My mother was really pissed at me and my brother, but one of the ladies took her by the hand, complemented her hairdo and gently led her in. Mom was all smiles and sweetness with her and the whole checkup was smooth sailing.
Funny how they can be so cooperative with strangers while battling family members every inch of the way! Recruit co-conspirators whenever you can....
All of this is very good advice and I can see from the comments that I am not alone in my frustration. I have been the sole caretaker for my dad, who was diagnosed with "dementia/Alzheimers" while we were battling Mom's cancer. After Mom's death, Dad seemed to plateau for a while, but has become increasingly worse. He has always had trouble putting a name to a face even though he may know the person very well, so this has become an even bigger frustration for him. Sometimes, I think that he believes I am my mom - we look an awful lot alike! And that causes him even more confusion. He still insists on driving around our small town, but the battle is coming to take even this small piece of independence away from him and I don't look forward to it. Right now, I have to continually remind myself that this is not really my dad and that I have to be the bigger person, but some days are really hard. My husband does help me sometimes and my brother comes to visit when he can, but the majority of Dad's care falls on me and I am getting tired of always being the bad guy! Dad doesn't understand that he can't go to the bank and get money whenever he wants and I have had to cover several bounced checks. After talking with the bank, I have gotten them to call me whenever he gets money that isn't there and this is working out - for now. Hopefully, when he doesn't drive this will resolve itself, but for right now, it is getting to be difficult for me and my husband. I am trying hard to just be positive when I with him and to give him the best possible memories that I can, but he surprised me the other day when he said that he didn't remember how Mom died! Sometimes, I just get so frustrated because I KNOW that he lived through things like this with me and I lose sight of the fact that he is only capable of remembering the good things that happened - and for that I am grateful, but it sure can catch you off guard! And, I, too, don't always know how to respond - so have decided that a quick hug and a chuckle is far better than any of the ways I REALLY want to respond. Good luck - to us all!
Dementia is hard work! Truer words were never spoken. I know it all at an intellectual level, but it is so hard not to over react or fall back into habitual negative reactions when their behavior is pushing all your buttons!
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Dementia Caregiving Tips from Teepa Snow
If we continue our ways of doing things, it is not going to help any way and everyone, you included, would be more frustrated/angry/stressed out any way. At least we can make the choice and try to make things easier for everyone concerned.
LaurieLovesMa, elaborate on your need for help. I am sure you will get support and help.
Even as a child it was my job to do housework, whereas my many brothers were excused because they were male. I was told, men don't do dishes, or cook or, clean house. The boys could go places and do fun things, but I was told "no" on the basis that I was a girl. And above all, it was a woman's job to do what she's told.. ... I think I spent most of my childhood screaming: "It's not fair!"
But "fair" was not a concept that they understood in this context. How could it be unfair to expect you to be what you are? Because, after all a female is a creature who only exists for the sole purpose of doing work for other people, and not to have fun. It would have seemed to them like, the floor objecting to being walked on. It's was you are. Needless to say it was a constant argument that I had to live with until I married and got the heck out of there.
Now fast forward to years later and their minds and abilities are fading. The same attitude kicks in again only far stronger and far more unreasonable. I had a psych teacher who once said that whatever quirks or negativities and opinions you had when people are young, just become a dozen times stronger as you grow old. (example: The person who was money conscious becomes down right cheap. ) And I think that applied to my folks, especially my Dad.
For every problem that they needed help with, they expected me to fix it. After all, that's what women are for, to do the work. They would never even consider asking brothers to help, no matter how much I had to do. The excuse was that: "You know they're men. They are busy." The fact that I too had a difficult job, never seemed to register with them.
One of Dad's frequent comments was: "You are my daughter, You have to do this !!" And he could never ever fathom the idea that I might object to giving up everything in my life to take care of him. Once, when I told him he had to stop demanding so much of me, he answered: "Why not? That's why you're here. You're my daughter, you have to do what I say!"
I find it impossible to consider that "an effort to do his best." All his effort was toward getting me to do everything, his way, with no consideration of me whatsoever. It's very hard to keep busting your butt for someone who barely considers you a human being.
And while most of this post is not directly on point, it does reveal a bit more of why my brothers have never helped, and fits with the theory that parents definitely do not raise all their children the same way. It's obvious to me that it was ingrained in my brothers from childhood, to expect me to "do it all", and for them to feel excused. Why would things ever be different when the folks were old, and the work load so much heavier.
Teepa's instructions are first for people who are NOT dealing with that kind of scenario. Even so, I have found her instructions to still work for me if I have figured out how to apply them in any given scenario.
This was also true when I had to learn a different way of responding to my son on the Autism spectrum. Traditional parenting techniques didn't work, so I had to learn how to change MY approach to have a decent day.
Most of the time *I* have to figure out how to respond to mom in a way that will calm her, which usually means telling her what she needs to hear at that moment. "The police have found your baby and have taken it to the doctor." "Your mom & dad are still together and happy." "Your pet dog is very happy and loves to play out on the farm" "The house is just like you left it." "Daddy will be by after work." WHATEVER IT TAKES to keep her calm, even if it's not exactly factually accurate. Factually accurate does not matter one little bit.
My mom is on anti-psychotics, anti-depressant, and other meds for blood pressure, diabetes, & cholesterol. She is bi-polar and has Cluster B personality disorders and several paranoid psychotic breaks over the years. She is a hand-full on a good day. And let's sprinkle moderately sever dementia on that ice cream sunday for fun.
If you are so frustrated and getting to the point where you think you are going to break or lash out, you have to get some help. Nobody can do dementia care as if they are Mary Poppins around the clock, and everything is sunshine & roses. Dementia care can be pure living h*ll if we're going to be honest. If you are approaching your breaking point, it's time to find some support from social services, area agency on aging, family, church/temple/mosque family, neighbors, and counseling. Look into respite care options to get yourself a break.
Nothing good comes out of having a burned out, strung out caregiver in charge of a vulnerable person.
The person whose father has Alzhemiers, u should take his car keys away. One day he is going to get confused and lost and cause an accident. Take him to ur DMV and have him tested. A friend of mine's husband lost his wallet and keys. She told him he couldn't drive without his license or keys. She eventually found both but never told him. She sold the car he drove. Out of site, out of mind.
Just what I needed to hear
The approach I use to get my mother to cooperate with necessary actions, like eating or going to the doctor's, is not to ASK her and not to TELL her, but to simply follow through with the action as if she were already on board with it. (If I can make her think it was her idea, all the better.) "Here you go, Mom. Would you like some butter on your carrots?" (NOT "Would you like some carrots?" or "Eat your carrots. They're good for you.") The strategy here is that the carrots are a given and it's the butter that's an option for her to accept or reject. I used to use this tactic with my toddlers. "Do you want to wear the red shirt or the blue shirt or the yellow shirt to church?" to avoid them picking out something entirely inappropriate and throwing a tantrum when I nixed it!
The other day my brother and I got Mom to see a dentist for the first time in years. She kept protesting that she didn't need to go because she has dentures. (Very important to have mouth and dentures checked every year!) Took her out to lunch, then drove to the dentist's office. I went ahead into the office to explain the situation while my brother was coaxing her out of the car. The staff was fabulous. My mother was really pissed at me and my brother, but one of the ladies took her by the hand, complemented her hairdo and gently led her in. Mom was all smiles and sweetness with her and the whole checkup was smooth sailing.
Funny how they can be so cooperative with strangers while battling family members every inch of the way! Recruit co-conspirators whenever you can....