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I have to say I was blessed with a loving grandma to care for for years. She was so sweet and polite. I kept counting my blessings that through dementia she was staying so sweet. Then something happened. I don't know if it's the caregiver being too harsh with her while I'm not there (I'm actually leaning towards that but it's soo hard to find a helper that comes that I hate to rock the boat) or if its truly the disease, but lately she's been really hard to live with. She's been so mean and nasty. She has terrible terrible mood swings but then doesn't remember she had them or was mean and tried to hit people. I try to walk away but as people can attest to dementia patients, they are mostly not safe if you walk away to give yourself a much needed time out. I do have my dad but mostly he just steps in yelling at her which does absolutely nothing to help the situation although sometimes she lashes out her words on him giving me time to finish the dressing process (that sets her off a lot).
I find frustration in those around me as well as from her. I live with my dad (to help pay the bills while I'm caring full time for my grandma) and my sister and her two kids live down the street. Sometimes both are a great help but other times they don't understand what I'm dealing with. Dad gets frustrated with her not understanding she doesn't remember she was mad two minutes prior. Getting mad at someone like that for hours after the incident happened is silly. My sister doesn't get it at all and keeps comparing it to her kids. There is a huge difference. I cannot just take a time out from grandma and leave her alone when I'm upset and she's upset. She could get up by herself and fall and hurt herself. When she's set off, she tries to get up and hit people and she can barely walk by herself much less when her arms and legs are flaring to hit people. I don't get the luxury of having a good cry with a good time out.
This page has been amazing with helping and I'm so thankful it exists. When a new stage or symptom or just a place to vent is needed, I come here for advice. It's amazing that out there in the world, others are handling the same situations with their loved ones whether it be a spouse, child, mother or grandma, we are all dealing with the same things. That's a comfort for me. Now I just wish I could give myself much needed time outs when she gets angry then my life would be sooo much easier.
JessieBell I'd guess you need a facilitar who has gone thru being a caregiver or is at present. Also a dementia only support group. If you can see if Alzheimer's could sponsor a group as a start. I am a Christian but I share everything I go thru because that's what the group is for. At the end of mtg a good time for prayer for caregivers & the person caring for. We meet weekly & 10 caregivers sharing easily takes 1 1/2 hr. Some caregivers need more time. At end of each sharing ask how they the caregiver is doing. Very important to have some time for themselves. Many times stress causes sicknesses or death. One of our caregivers just had heart attack & died 2 wks later. His wife is now in memory care. Find a support grp that you feel good about or start one yourself. Ask Alzheimer's to help you & tell them your feelings. They have a 24/7 help line. Ck out Teepa Snow on internet, Alz Reading rm, 36 Hr Day book, on internet Understanding dementia experience & many books on Amazon. God bless all caregivers & give us directions.
mlface, I live in Alabama. We have some church-sponsored support groups. From what I've seen they are to give thanks that parents are still alive and to learn how to better serve them. Can you imagine if any of us came in and said we had care receiver from hades who is making us say bad things about god in our mind? Truth is that the members would probably know exactly what we were saying, but wouldn't say it themselves. :-D
We all need support. We all need to vent. Every day I feel like I shouldn't talk because everything I say to her she thinks I am looking for an argument. It is so hard to deal with her. Funny, if I vent to my siblings (I am sole caregiver) they think I am exaggerating. They have no idea, why, because when they are around she is a completely different person. They also don't do this 24/7.
JessieBell. Doctors don't have the time I guess to delve into the day by day living w alz. I would suggest you find an alz Support group & pour your sole out. That's why we meet. It's cheaper than counselors like free. We all live with dementia so understanding & may have good ideas. Very important.
Gigi, the constant negativity does wear on us. My mother has been "dying" every day all day long for 8 years now. I don't know how much has really been wrong with her in the past, because I know my mother can be quite the actress. For some reason she made a late-life career of being a sick person. Now she is reaching the end of her life and is trying so hard to hang on. I am divided between compassion and being totally worn out. She wants to die at home, so there is no putting her in a facility until something happens. I wish she would go to a facility, because the quality of my own life is zero. I can't really talk to people about it, because some feel I'm complaining and being disrespectful to a parent. Or there is the other side that tells me I'm dumb for staying around. Most people don't really get that you can't make someone go into a facility if they won't, and you can't just leave them by themselves when they don't have their faculties anymore. It is hard to know what to do when the end of life goes on for a decade or more and the parent is so unpleasant.
Some people tell me that I am so lucky and that I am going to miss her when she is gone. They've not walked in my shoes.
I deal with a constantly negative mother. There is rarely a positive comment or response to anything. I never get a positive response to my "how are you" question and I now try not to even ask the question because I am tired of the "oh, I'm okay I guess" or "oh, not so good today". I have run out of patience trying to point out the positive side of things. It seems she so badly wants to be pitied in every aspect of her life. Constant Dr. appts because of some malady, only to be told that they find nothing wrong or it's just part of aging. She had her hearing checked, got hearing aids but refuses to wear them then complains that I speak too softly. She used to live with my husband and me but I was suffering because of it so had to have her move out. She refused to move into a local retirement facility so is living on her own. Now I'm hearing she is lonely even though neighbors have reached out to her. She won't reciprocate but continues to complain. Now i get daily calls about her phone, her tv remote, her computer, etc. She doesn't recall even basic functions sometimes. She has dementia but her doc doesn't see the extent of her failing so I get no help there. I had to get over the guilt of having her move out but realized I can't control everything. I still have outbursts with her when I get frustrated with her negativity and stubbornness and then feel bad. It's very frustrating and taxing on us children to find a balance of caring for them and caring for ourselves. It's a tough row we hoe sometimes.
I don't get many neg remarks from alz hubby but the latest has been in bed he has maybe slept 30 min. He gets up to straighten my covers making sure I'm on my back. All creases out of my side gets in bed makes sure no creases. I have learned to do what he wants so no problems & wait for him to fall asleep. We have king bed thank goodness. I used to try telling him it's my side & I'll take care of it. Well forget that. I was thinking last nite he's like putting a baby to bed. I found when I argued I felt my adrenalin going up. A caregiver in my support group just had heart attack & died. His wife didn't seem to far gone but until you live w them....Support grps are so valuable to let it all out as those there care & understand. Weekly mtgs are best as you engage more w caregivers.
I don't get many neg remarks from alz hubby but the latest has been in bed he has maybe slept 30 min. He gets up to straighten my covers making sure I'm on my back. All creases out of my side gets in bed makes sure no creases. I have learned to do what he wants so no problems & wait for him to fall asleep. We have king bed thank goodness. I used to try telling him it's my side & I'll take care of it. Well forget that. I was thinking last nite he's like putting a baby to bed. I found when I argued I felt my adrenalin going up. A caregiver in my support group just had heart attack & died. His wife didn't seem to far gone but until you live w them....Support grps are so valuable to let it all out as those there care & understand. Weekly mtgs are best as you engage more w caregivers.
I say this to myself "let go". I've been dealing with horrible outbursts, embarrassment, accusations, lies, hurtful things for 10 yrs. At first I took it all personally and thought she meant it because like your mom she was mostly with it and managing.
It riled me up, I sucked it up and then would leave hurt and angry and every day with her took me a week to emotionally recover.
Of course she got worse and lost friends, family as so many gave up on her. As her daughter I was stuck. But about 3 yrs ago I knew in my heart she was lashing out because she was scared and even she realized she was losing her mind. I chose to "let go" and set boundaries.
I no longer took the bait and engaged in conversation unpleasantries. When it happened, I learned to divert and just say " let's go for a walk, let's go for a ride, walk in the kitchen and make us a snack, etc. this helped tremendously, she forgot what she'd said and we got out of that loop. When it didn't stop, I'd take her by the hands, tell her "I love you, but you're hurting my feelings" so I'm going to leave and come back tomorrow" or I'd just say I had to leave and be back later or the next week, whatever. This significantly lowered my blood pressure and turned my "I hate my mom" to "I hate this for us" -- because I really did. You can't turn back time. It will get worse trust me. Learn from my mistakes and hardheaded ness. Nip it before you hate mom.
I even changed her name on my cell phone from "mom" to "let go" to remind me to take a breath when I answered her call.
Now mom is in memory care and is doing great. I visited and when she gets wound up, I just sit quietly and let her have at it, then we go for a walk or have a treat. It's like a do over. The next day is always a new day. She can't remember the hour before or day before....I CHOOSE NOT TO remember that hour or day so that I can be where mom is in the moment.
How about hearing HEY,HEY,HEY over and over and effing over until u either turn family died back on or tell her she can take her own cup/bowl/plate to the sink seeing as how she can take her dogs out 30 times a day lol
Bless your heart! Most of all, know that it is normal to feel those negative feelings .Being a caregiver is unfair. It's difficult and frustrating. Find people to talk to and talk to them every day. The one thing you need to remember is to pat yourself on the back because if you're a caregiver, you're doing a really good (albeit thankless) thing. Generally, the person you're caring for doesn't thank you and other family members don't help so what you are doing is truly a selfless act of kindness. If you need to bring in a nurse caregiver or explore the possibility of a nursing home, don't feel guilty. My relationship with my mother got so much better after she went into a nursing home. That way, we ended our years together feeling good about each other. I wasn't so tired and frustrated and she didn't have to think of me as the nagging caregiver that made her take her medicine and do her therapy.
I'm having to learn the balance of being firm without losing it to help avoid behavior that my 94 yr old Mom is presenting. She has become an escape artist of sorts. At times she acts like she understands the danger, and other times doesn't have a clue why she wanted out. This dementia journey is a tough one. If I feel irritation looming I walk away for a few minutes to be able to redirect the situation. I learned that from this website. Best place to check in when in doubt. There is always someone who is or has walked the same situation. Good luck and take care of yourself!
I don't know how you deal with it, honestly. It's tough. My FIL is still sweet and kind even though he has dementia (and believe me, I count my blessings on that one!!), but even so, hearing the same things over and over and over does get on your nerves. He'll say good morning to me 20 times in 5 minutes, and if I don't respond each and every time with a cheery "Good morning to you too!" as if it's the first time I've said it, then he gets offended. (I'm not a morning person, by the way. I need awhile to wake up.) I know this is tiny compared to what others on this forum endure, but I'm a quiet introvert, and I can never even walk through my own house in peace - my FIL comments about EVERYTHING that I do. It's affecting my health (I now have ulcers), and I'm not sure how to deal with it.
That said, again, I know that it could be way worse! Sorry for those of you who are getting yelled at a lot - that's awful. :(
Why, oh why do caregivers feel they have to tred on thin ice when they are lashed out at and otherwise abused. I don't care what the reasons are, dementia, old age, etc It is unacceptable and must never be tolerated beyond the point where the caretaker can take it. Remember, without the caretaker, the patient is going to be a l o n e. The caretaker must be diplomatic, funny, change the subject, etc. but when it gets to the point where the caretaker is being affected very negatively, IT HAS TO STOP. If that means "letting them have it" - no they won't understand but YOU will feel better OR YOU HAVE TO REMOVE THEM. There is no other choice if the caretaker wants a life and I assume they are much younger and should have a life ahead. Sorry this is so harsh but I have been through it all.
I don't get many neg remarks from alz hubby but the latest has been in bed he has maybe slept 30 min. He gets up to straighten my covers making sure I'm on my back. All creases out of my side gets in bed makes sure no creases. I have learned to do what he wants so no problems & wait for him to fall asleep. We have king bed thank goodness. I used to try telling him it's my side & I'll take care of it. Well forget that. I was thinking last nite he's like putting a baby to bed. I found when I argued I felt my adrenalin going up. A caregiver in my support group just had heart attack & died. His wife didn't seem to far gone but until you live w them....Support grps are so valuable to let it all out as those there care & understand. Weekly mtgs are best as you engage more w caregivers.
Dementia is so hard! 5 1/2 years in and here it is Monday morning trash day. I snuck her trash can out last night. For the 3 rd. Week, she snuck it back in and it did not get dumped. So I brought the whole can to our store and dumped it. I'm just waiting for her to wake up and later call and ask where is my trashcan? I'm sitting here breathing deep and laughing! Outwitted by the 84 year old. Again lol! Sometimes you just have to roll with it.
midkid: "...the 'filter' lifting..." yes, along the same lines as my sister's husband's term for this. mom blames others for stealing and calls police for the little things she misplaces, even when i find them, at which point she says they snuck back and returned it! his term is 'DISTILLED'. i love the oddly poetic explanation. she always did blame others and never took responsibility for anything negative - for which it would have been so right and easy and honest to simply say "oops, sorry" and laugh about the messy fridge or some misplaced item. this behavior compromised our respect for her and luckily we haven't 'inherited' this behavioral flaw. so, yes, she always did have this 'blame thing' going, but it is certainly distilled with dementia.
I am also dealing with a very negative mother. She has always been that way, but now it's increasing dramatically....along with the paranoia. Nevertheless, your suggestion to not take the bait is the perfect way to describe how to handle it. I just remain silent during her rantings. It's one of the hardest things I ever had to do in terms of self control. I also set a boundary with small doses of her. I can't do more than two hours in her presence. I will call her every day...she has a FB account...so I will message her through there to check in. These are all coping mechanisms I've adapted for myself to deal with her.
It's hard, a caregiver is always on the edge of burn out some days more so, it makes thing's worse and dose no good to argue or explain why they shouldn't say thing's or defend yourself if they accuse you of doing thing's like stealing key's or anything they hide and forgot where they hide them. Or complain about the food. It's hard to hold it in. a support group is a must. You have to talk to someone to blow off steam. Facebook, talk to a spouse, friend, someone or you'll hasten burnout. My advice hold it in but not forever. it helps to know you have some one to tell what happened. It hurts and vary hard to not think bad thoughts and this hurts but you're just human and you have to fight harder some days to hold it in. Trying to change the subject a lot of times doesn't work as dose trying to distract them. Every case is different just got to do what you got to do to get through it
THANK YOU so much to everyone and anyone commenting here about this subject! My mother is 96 1/2. She was the healthiest person I have ever met in my life, until at 92, she fell while we were riding bikes. She broke her ankle( which healed in 6 months) and skinned her shin badly and a few other things. Luckily her head landed in the grass not the pavement. I believe it was the anesthesia, the blood thinners and all the different drugs they give you while you are under anesthesia, that started to affect her mentality. She just started to change mentally after this accident. Maybe it wasn't even that, maybe it's because she stopped exercising everyday. She walked 2-6 miles every single day of her adult life and then started riding her bike 2-3 times a day at about 80, instead of the walking. Things just started going down hill mentally. It started out slow, but suddenly six months ago, I noticed she was forgetting that we watched a movie on tv just days before, and she was mixing up events that happened. She insists something happened 20 years ago when it was just last year, etc. she blames me for everything that she can't find, and she gets very angry easily, has started loosing her hearing, and wants to sleep till at least 10 am every morning. I live with her. Sorry for the long explanation. I've been going to the therapist once a week for 4 years. FINALLY the therapist said something that has helped me greatly! it's extremely helpful no matter who you are dealing with, when they act up and say negative things or are always trying to challenge what you say. JUST DONT TAKE THE BAIT! that one quote is helping me incredibly well. Here is an example: Every time is say " oh it's a beautiful day outside, the sky is so blue, etc.", my mother will shoot me down and say: " well it's not really blue out." Or Well they said it's going to rain today( even when the weather people haven't said a word about rain). It's nothing but negativity and cutting comments. So now, when she makes negative remarks, I have taught myself to just not respond and and not give her the satisfaction of commenting. I just let it go over my head and continue what I was doing. It's been extremely difficult to deal with 24 hours a day, and it took about 3-6 months to learn to be quiet and calm and NOT TAKE THE BAIT! but it has helped so much! My mother has been so negative all her life and I have been there for her to abuse since I was 15, but now, she can't get a rise out of me ANY MORE! It's a breath of fresh air! Just remind yourself at breakfast , lunch and dinner: DONT TAKE HER BAIT! She will continue to try, but your life will be so much better once you practice this. Good luck and God bless! 😇
I'm not sure what you mean by negative responses, but, if you know that the LO has dementia and can't be blamed, held responsible or punished for things they may say, I'd try to keep that in mind and practice my own responses to them in advance. I'd try to have a pre-planned reaction that is appropriate, so I'd know what my response is going to be in advance. Just having a knee jerk (figuratively speaking) isn't helpful and can be hurtful. If it's something that you can't seem to get past, I'd explore other options for her care. It's very stressful to be with a person who has dementia around the clock. I'd explore alternate caregiver options. Everyone is not cut out for this kind of thing. Also, getting plenty of respite time may help. If you don't get a chance to recharge your own batteries, you might be overwhelmed. That can contribute to burnout, which lowers our ability to respond as thoughtfully.
My mother is slowly declining into dementia--and it's really hard. Conversations with her are one sided, most days and she circles around and around until you simply cannot understand her--and she is considered to have VERY mild dementia. I cannot even fathom trying to talk with her as she progresses--but since I am with her a couple days a week, I can manage.
Mother will say the most outrageous things--just bigoted, racist, homophobic things--I don't know if this is just the "filter" lifting and she's always felt this way and covered it up. She will talk about people in the most embarrassing ways--has a 'friend' who is fairly heavyset, and refers to her as 'that fat girl I know'. Well--the 'fat girl' is 75, and she knows well and good she's heavy--and I'm sure mother makes comments to her. Shoot, she comments about my appearance every time I see her. Yesterday she actually said "you have aged really, really well". WHAT? Did she mean that? I mean, I'll take it since she hasn't given me a compliment in a long time! Usually it's a comment about how men only like slim women and I have never been slim!!
Dementia basically means 'broken brain'. People with it will say anything and everything. They usually don't mean it. You just can't be angry with them...even when they are yelling at you. They aren't 'them' anymore.
In my case, I have been seeing a therapist for years. She has helped me to overcome my atrocious childhood and now I actually have an OK relationship with mother. In big part, b/c I don't take what she says personally. It's hard, don't get me wrong, but for me to be angry w/her at this stage is pointless.
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I find frustration in those around me as well as from her. I live with my dad (to help pay the bills while I'm caring full time for my grandma) and my sister and her two kids live down the street. Sometimes both are a great help but other times they don't understand what I'm dealing with. Dad gets frustrated with her not understanding she doesn't remember she was mad two minutes prior. Getting mad at someone like that for hours after the incident happened is silly. My sister doesn't get it at all and keeps comparing it to her kids. There is a huge difference. I cannot just take a time out from grandma and leave her alone when I'm upset and she's upset. She could get up by herself and fall and hurt herself. When she's set off, she tries to get up and hit people and she can barely walk by herself much less when her arms and legs are flaring to hit people. I don't get the luxury of having a good cry with a good time out.
This page has been amazing with helping and I'm so thankful it exists. When a new stage or symptom or just a place to vent is needed, I come here for advice. It's amazing that out there in the world, others are handling the same situations with their loved ones whether it be a spouse, child, mother or grandma, we are all dealing with the same things. That's a comfort for me. Now I just wish I could give myself much needed time outs when she gets angry then my life would be sooo much easier.
Some people tell me that I am so lucky and that I am going to miss her when she is gone. They've not walked in my shoes.
Now I'm hearing she is lonely even though neighbors have reached out to her. She won't reciprocate but continues to complain. Now i get daily calls about her phone, her tv remote, her computer, etc. She doesn't recall even basic functions sometimes. She has dementia but her doc doesn't see the extent of her failing so I get no help there. I had to get over the guilt of having her move out but realized I can't control everything. I still have outbursts with her when I get frustrated with her negativity and stubbornness and then feel bad. It's very frustrating and taxing on us children to find a balance of caring for them and caring for ourselves. It's a tough row we hoe sometimes.
It riled me up, I sucked it up and then would leave hurt and angry and every day with her took me a week to emotionally recover.
Of course she got worse and lost friends, family as so many gave up on her. As her daughter I was stuck. But about 3 yrs ago I knew in my heart she was lashing out because she was scared and even she realized she was losing her mind. I chose to "let go" and set boundaries.
I no longer took the bait and engaged in conversation unpleasantries. When it happened, I learned to divert and just say " let's go for a walk, let's go for a ride, walk in the kitchen and make us a snack, etc. this helped tremendously, she forgot what she'd said and we got out of that loop. When it didn't stop, I'd take her by the hands, tell her "I love you, but you're hurting my feelings" so I'm going to leave and come back tomorrow" or I'd just say I had to leave and be back later or the next week, whatever. This significantly lowered my blood pressure and turned my "I hate my mom" to "I hate this for us" -- because I really did. You can't turn back time. It will get worse trust me. Learn from my mistakes and hardheaded ness. Nip it before you hate mom.
I even changed her name on my cell phone from "mom" to "let go" to remind me to take a breath when I answered her call.
Now mom is in memory care and is doing great. I visited and when she gets wound up, I just sit quietly and let her have at it, then we go for a walk or have a treat. It's like a do over. The next day is always a new day. She can't remember the hour before or day before....I CHOOSE NOT TO remember that hour or day so that I can be where mom is in the moment.
Good luck.
That said, again, I know that it could be way worse! Sorry for those of you who are getting yelled at a lot - that's awful. :(
his term is 'DISTILLED'. i love the oddly poetic explanation. she always did blame others and never took responsibility for anything negative - for which it would have been so right and easy and honest to simply say "oops, sorry" and laugh about the messy fridge or some misplaced item. this behavior compromised our respect for her and luckily we haven't 'inherited' this behavioral flaw.
so, yes, she always did have this 'blame thing' going, but it is certainly distilled with dementia.
My mother is 96 1/2. She was the healthiest person I have ever met in my life, until at 92, she fell while we were riding bikes. She broke her ankle( which healed in 6 months) and skinned her shin badly and a few other things. Luckily her head landed in the grass not the pavement. I believe it was the anesthesia, the blood thinners and all the different drugs they give you while you are under anesthesia, that started to affect her mentality. She just started to change mentally after this accident.
Maybe it wasn't even that, maybe it's because she stopped exercising everyday. She walked 2-6 miles every single day of her adult life and then started riding her bike 2-3 times a day at about 80, instead of the walking. Things just started going down hill mentally. It started out slow, but suddenly six months ago, I noticed she was forgetting that we watched a movie on tv just days before, and she was mixing up events that happened. She insists something happened 20 years ago when it was just last year, etc. she blames me for everything that she can't find, and she gets very angry easily, has started loosing her hearing, and wants to sleep till at least 10 am every morning. I live with her.
Sorry for the long explanation. I've been going to the therapist once a week for 4 years. FINALLY the therapist said something that has helped me greatly! it's extremely helpful no matter who you are dealing with, when they act up and say negative things or are always trying to challenge what you say. JUST DONT TAKE THE BAIT! that one quote is helping me incredibly well. Here is an example:
Every time is say " oh it's a beautiful day outside, the sky is so blue, etc.", my mother will shoot me down and say: " well it's not really blue out." Or
Well they said it's going to rain today( even when the weather people haven't said a word about rain).
It's nothing but negativity and cutting comments.
So now, when she makes negative remarks, I have taught myself to just not respond and and not give her the satisfaction of commenting. I just let it go over my head and continue what I was doing. It's been extremely difficult to deal with 24 hours a day, and it took about 3-6 months to learn to be quiet and calm and NOT TAKE THE BAIT!
but it has helped so much! My mother has been so negative all her life and I have been there for her to abuse since I was 15, but now, she can't get a rise out of me ANY MORE!
It's a breath of fresh air!
Just remind yourself at breakfast , lunch and dinner: DONT TAKE HER BAIT! She will continue to try, but your life will be so much better once you practice this. Good luck and God bless! 😇
Also, getting plenty of respite time may help. If you don't get a chance to recharge your own batteries, you might be overwhelmed. That can contribute to burnout, which lowers our ability to respond as thoughtfully.
Mother will say the most outrageous things--just bigoted, racist, homophobic things--I don't know if this is just the "filter" lifting and she's always felt this way and covered it up. She will talk about people in the most embarrassing ways--has a 'friend' who is fairly heavyset, and refers to her as 'that fat girl I know'. Well--the 'fat girl' is 75, and she knows well and good she's heavy--and I'm sure mother makes comments to her. Shoot, she comments about my appearance every time I see her. Yesterday she actually said "you have aged really, really well". WHAT? Did she mean that? I mean, I'll take it since she hasn't given me a compliment in a long time! Usually it's a comment about how men only like slim women and I have never been slim!!
Dementia basically means 'broken brain'. People with it will say anything and everything. They usually don't mean it. You just can't be angry with them...even when they are yelling at you. They aren't 'them' anymore.
In my case, I have been seeing a therapist for years. She has helped me to overcome my atrocious childhood and now I actually have an OK relationship with mother. In big part, b/c I don't take what she says personally. It's hard, don't get me wrong, but for me to be angry w/her at this stage is pointless.
https://www.agingcare.com/articles/overcome-negative-emotions-while-caregiving-151108.htm