Hi San42756,
Im so very very sorry for what you and your husband are going through and it can be very painful when someone can seem so insensitive to your feelings with all you have on your plate. However because you mentioned the “Big D” Dementia, when we step back from the situation and take your mother, your husband and yourself out of the picture, the real MONSTER in the equation is the disease, “BIG D” dementia.

This disease can wreck havoc on the person and everyone in the household and make people say and do things they may not have said or done before “Big D” moved into the person suffering from the disease and the household. What this disease does to the mind and the effect it has on the person needing care, the caregiver as well as the rest of the family is almost like having “Covid” of the brain. It can get out of control and no one knows what to say or do. For that reason I am so sorry for you because you have to work 24/7 as a Caregiver with a difficult confusing disease without a support system.

Just like we would do if we or one of our family members had Covid or any other disease that can effect the whole family, we would have to start by learning as much as we could about the disease and get the proper help so it wont completely destroy the person and everyone in the home.

Personally, I remember some information I found that was wonderful on understanding a little about dementia when I worked as a DSP (professional caregiver) for a company. We had to go through different types of training and one individual we received training from was an expert on Dementia. Her name is Teepa Snow. If you get on her website, type in your browser: “ Teepa’s Dementia Videos” you will find a wealth of information that will educate you on the disease and give you coping skills. As you get to better understand the disease and learn what to and what not to do you can learn how to take care of yourself, help your mom and your family. I hope this helps.

I have a wonderful supporting husband that understands the responsibility I have for my dementia mom, NOT!!! Was just told that if I didn’t start giving him more attention I was going to lose him! The way I feel right now, I wish he would just leave so I don’t have to be stressed out by him also. His words to me were, “ she’s 86, she’s old, if she dies she dies”. Do I even want to be married to a man who would say something that cruel? No I don’t. So most likely getting divorced. I am beyond burnt out. I just don’t care.

Kimkatz.... So many of us are with you!!! Finding this site and AC friends is invaluable!... I am also working through trying to change things (daily) so that I can be a better caregiver for my mother and (to know) I NEED (desperately) to take care of myself, physically and mentally. As a caregiver... It's been a very long, difficult journey, especially when you start out being younger and you think you can handle and sometimes 'save' the world. On top of everything, we are all struggling with the pandemic. Be kind to yourself and keep coming back to AC. Sending much love to you and our AC family. ❤️

Hello everyone. I am so happy I found this forum. I thought I was th only one not to be able to cope anymore with all the difficulties of taking care of an old parent and her needs. My mother lives with me. She is 83 years old, she has memory and mobility problems and most of all she does not want anyone to take care of her. I used to have a normal adult life with friends, job and activities, that I have now reduced at maximum to be able to take care of her. The problem is that I am tired. Tired and I find my life miserable. I am tired and get very angry at everything she does wrong. And it is not fair. This is not her fault, but I cannot cope with it any longer. I also have less and less energy for anything, so thank you all for your advice and information for this will help me to change a few things and take care of myself before getting crazy myself. Kim

im burned out. im dealing with my 97 year old grandmother at the facility shes at. shes worried about the house all the time. she is getting angry about ppl digging into her money which she saved up every penny from her days as a teacher. I broke down yesterday maybe im doing too much. since she's been in the hospital/facility Im at the house cleaning, throwing out tons of garbage donating clothes since she bought a million things off QVC. As for me I have gone backwards I was eating clean since im so busy taking care of stuff I just eat bad some days I don't eat, I quit smoking and went back to that. some nights I sleep pretty horrible and have not been to the gym besides me working my full time job I did photography and put that on the back burner since it happened. I know the facility is doing all they can im doing all I can its just been tough

Just stumbled upon this site about an hour ago. I'm 38 and POA for my 81 yr old grandma with dementia. I can completely empathize with the burnout thing....EVERYDAY, it's another task on the "to-do" list. I can knock 10 things off "the list" a day and consider myself lucky to even get a thank you. Then, it's complaints about the way I did the things she wanted me to do or I'm being cheap on the house repairs, etc. She has no idea about the concept of money or that she just had me spend $28,000 on household repairs in 4 months.

It's tough, especially when she treats you like a slave no matter what you do, constantly trying to demean you only because she is old and in pain. Then you get the silent treatment tactics as she reverts back to a 5 yr old because you told her that you have your own life and that you have to prioritize her list, focusing on those tasks which have the most benefit for her house, not redecorating the rooms every other week.

All you I can do is give her some time to calm down but it is very tough, you know, getting treated like a doormat when you are the ONLY one she has to help her get these things taken care of. What is the saying, "we hurt those that we love" or something like that.....well, it's true.

I just ask the Lord for strength and keep marching forward.

Good day, this morning I found myself "frustrated" to answer the phone and to hear my mom's voice. All she was doing was asking me where I was (which is a 24/hr question). I explained that I was finishing up some work at home and that I'd be with her shortly. She's so demanding, pretentious when O.T. or P.T. come to her home. When they leave she refuses to take her meds, etc. I guess the realization today is that I'm starting to RESENT the situation. It's really not her fault I'm just feeling spent.

Christian woman 60s caring for my mother who is aged and has chronic heart disease. I'm lonely and sad 24/7

I have burnout...my husband is not supportive of me and that hurts me the most...my husband thinks I'm just making more of it than it is....I try to explain but he either rolls his eyes or he 'tunes me out' and focuses back on tv or his book...how can I make him understand that I have this ??? I would have thought he'd be more supportive since I just cannot seem to function as I used to...any ideas on how I can make him understand and see what I'm really going thru ???

For PattiK, I wonder if your mom is on medicine that could make her lethargic. I know with my mom and a friend's mom, less was more. When they reduced the amount of medicine they each got, they got more responsive and more engaging with people and interactive, rather than just staring. I'm not a doctor, and can't give medical advice, it's just a thought.

Okay, mom campaigned hard to go to a nursing home. She made my life hell til she got there. Her physical health, clinical tests all indicated she is very healthy for anyone much less than her 85 years. She is there 2 1/2 months now. My visit with her on Mother's Day she was posed flat on her bed as if in a casket eyes open staring at the ceiling. Rehearsing is my guess. My son's loaded her shelf with flowers and plants and cards. She really doesn't respond.
She refuses to do anything but lay on her bed, meals eaten as she sits on the bed, now, she has a commode by the bed. There is no chair, she doesn't want one. All of my visits find her laying in bed, she doesn't even lift her head to visit, just lays there.
Finally, after years of bring tied to my cell phone, I decided to leave it home when I visited a neighbor for a couple of hours. As soon as we walked back in the door I heard my phone ring. Nursing Supervisor advising me that Mom had fallen unattended. She somehow got up to use the commode and ended up on her back with her legs under the commode. Happy Mother's Day!!!!
I stress and fret about her next "adventure" and I am convinced that she is playing games. She has had 4 falls since January 4 (My deceased Dad's birthday) . Every fall looked staged to me. She claimed she just fell and her heiney landed in the waste basket and she was unable to move. Hmmmm she was no where close to the waste basket. She didn't hurt, couldn't move ... however, when the EMS crew arrived she was lifting her legs up to prove nothing hurt but at the same moment saying she couldn't move. It goes on and on like this.
My patience with normal life with my husband has gone missing. I feel like my head is being crushed in a vice and I just want out.
Where do I go from here?

Just had to move my 92 year old mother in law into long term care, my husband and I are both mentally drained. We continue to get calls from her whining and yelling at us. She cannot possibly live in her home any longer and this past year of having to drive back & forth across town has taken a toll on our marriage.

My Mom decided she didn't want to deal with it, so she filed for divorce and had him served at their home without him knowing she had been planning on divorcing him. Put the house up for sale immediately after and gave me 2days notice to get him and his stuff out. He's been with me for8 months now and the dementia had progressed rapidly. Sundowning, hallucinating, paranoid, aggressive, mean combative,etc. Had to lock up all knives and sharp things because he thought I was an intruder out to get him and was hiding 2 of my sharpest knives in case he had to slit my throat to get away. He's so scared someone is coming to hurt him. It's constant. Daytime, he's Dr Jekyll... at night he turns into mr. Hyde. It breaks my heart but I'm frustrated exhausted and I've lost total respect for my mother. I don't want to give up on my dad but I don't know how much longer I can keep him safe here because he falls and always lands on his face. I hate that this is happening to him

I guess I have finally lost my sh*t. The endless games got to be too much. Mom is in the hospital after playing games like not eating, drinking or bathing, you name it. Endless mind control games at my expense. I am finally done.
Let the facility have the pleasure. Love isn't enough. I have been pulled through the knot hole until there is nothing left. It is time for me to live my own life. My awakening is now. I am going for it. Family caregivers ... make sure you keep enough of YOU as you travel this road. You get one life, it is all you have.

What if you have the feelings of caregiver burnout after the loved one dies?

"Caregiver burnout " Excellent description !! In fact recently given that title Problem is there are no solutions or relief for the responsible, hard working, tax paying , average middle class caregivers . I can relate to YEMI's comments except instead of mother it is spouse and before that father in law....... Offers of help are either costly or end up with me having put extra effort into pretending to own family " I am fine" What I am reduced for what I call pleasure .. crying, hot baths cleaning something anything

Thank you, Yemi. You said a mouthful. I am up against the same thing. Caring for my husband, but not qualifying for anything at all. The system is stacked against us. I wish the situation would end, but that would be his death, and I feel guilty wishing for that, and I don't, not really! None of these forums seem to want to address anything other than caring for parents. Caring for a spouse and caring for a parent(s) are two entirely different things, with different perceptions and different emotions, and even the situations are not the same. I wish I could find a forum that dealt with caring for spouses, but there is a dearth of forums for that. I am so tired that I am not functioning well. Working full time, with overtime and going home to another full time job is not working well, but I have little to no choice.

These articles always talk about caring for parents. I am caring for my husband. Rarely do I see anything that addresses my situation. Parents are not the only ones who need caregiving, but most of the articles I read on this forum seem to only consider parents. There are siblings, spouses, etc. Parents and spouses are two entirely different kinds of caregiving, at least to me, as I have done both. I wish there were more articles devoted to spouses who are care givers, as there are SO many relating to parental caregiving! I have 2-3 full time jobs and qualify for zero assistance, with only one daughter living close; the other two children could care less. Why is caring for parents the thing that seems to engender the most concern? There are many caring for spouses, yet it seems to be forgotten or of little concern. A lot discouraged here that caring for spouses seems to be ignored.

Im so glad I'm not alone - yet I feel for us all - everything I do is never good enough 😑 I don't get why the elderly get so blooming demanding #tired#

I am so glad i found this site. reading the comments make me feel like i am not by myself. Before taking in mom, I used to love life. do the best i can with what i got. now i am the most miserable person, eating my way there too. i tried to understand as a care giver but it is truly hard. i do understanding there are some side effects to medications but when she tells me" if i was living by myself , i will do more" . i am trying to find a place but the waiting list is too long. in the meantime i do need to go back to my routine before mom moved in with me. i used to love reading, gardening, running even when it was cold. but how can you get up to run when someone is consistently yelling your name throughout the night.

14 kids and you are the only one doing all the works. i hope you don't become sick like hypertension, diabetes from all these stress. if u become sick then what. who would take care of you? i learned something in life.. as long you let people take, they will take unless you put your foot down. i am in similar situation but it has only been 5 years on and off. I used to pray a lot but not as much as i would like. i do hope you will find a support group to talk about this
, a counselor maybe.

My mom has been living with my husband and myself for a few months. She went to the hospital a few months ago confused and then came to our house but she does nothing she isn't bad of but refuses to help in anyway just eats a lot and messes up my house! I feel at my ropes end I don't know how to approach her without blowing up! Please help

I found this site late Saturday night after being at my road's end. I've had my parents in my home for over 12 years. The last three years have been hell. I've stood by them through surgeries, dr appointments. My dad has heart problems and now vascular sundowner dementia. My mom has one Kidney and Parkinson's disease. In May of 2016, my dad was diagnosed with a-fib and needed the main aorta replaced. Prep and evaluation started in November 2016 and his surgery was in January 2917. A light stroke followed. No siblings helped me with either parent during this time. I went on LOA for 7 months, lost income. I asked in March for one if them to come for a week while I took a break. No responses. All 14 of them loaded up to my house for Thanksgiving and I once again laid out a need for help. I did the legal efforts in November, funeral planning in January, , surgery, home health, cardiac rehab and no help. I've fixed all the VA requests; managed all bills, insurance, cleaning, cooking, laundry, errands, driving, etc. I've not taken A vacation in 4 years. My dad is demonstrating all night roaming, bathroom frequency and peeing all over the bathroom. My siblings solutions and comments to me are:

1) it's not about me it's about them
2) decisions are not mine
3) sedate my dad more at night - sleeping pills
4) don't expect money for them
5) don't spend their money
6) I need to lose weight and get married
7) keep doing what I'm doing
8) keep trying to acquire more money for their care

I feel like a failure. I feel abandoned and disrespected. I couldn't wait for all of them to leave my home.

After crying, prayer and reading this site - I realize I must find emotional help for myself and somehow still care for my parents. I feel like I'm in a situation where there's no way for me to win at anything. I am alone. Nothing I ever do will be enough to help my folks and my siblings are totally clueless and jerks. Somehow I know God will help me.

Yes I call it thinking "dark thoughts" and it was starting to happen to me. That's when I just back off - go do my own thing whether it's meeting someone after work for some drinks and venting, or going home and immediately going for a walk or retreating to my room to listen to music. She can stay by herself for now - but I plan on looking into at home care - I will not let my physical and mental health go completely down the drain. Caretakers - take care of yourself!

I just know that I have caregiver stress...burnout. I was feeling a little overwhelmed only after my dad died last year when mom progressed further into Alzheimer dementia...then, when i least needed anymore to deal with, my husband was in a near fatal accident ... he survived but has been home several months recuperating with endless dr appts, physical therapy and lawyer visits...some days I was ready to snap and run away, so to speak...I had a few meltdowns (just crying), took some naps and then was refreshed for a little while until I needed to do it again...it seems to be getting better now; I seem to feel less stressed and overwhelmed for some reason...I'm trying to find new outlets to relax; trying new recipes, taking a drive by myself and not tell anyone where I'm going, and some home remodeling. It seems to be working...I've learned to do a chore list and do only what is most important for that day and put off to the next what can wait a day...it was a struggle to do that but is getting easier. Don't push yourself over the edge to be Super Person because that is only going to make you snap quicker and feel worse...get support from someone close to you even if just to vent for 30 minutes...it works. I still have busy days but at least I'm not so 'crazy' with stress...focus when it seems to be getting stressful and do only what needs to be done. You'll find you won't have to do EVERYTHING on your list that day...really. That was hard for me to do but once you take a good look , it's true. There are some things you can put off for a day, or maybe even 2. Try it... :)

I am new here. I have been a caregiver for years. My story is not unique. I know burnout. My life experiences with aging parents have made me something of a social mutant. My family has stuck together through some pretty tough times. We survive but do not have much energy for other things. It is a matter of keeping life tolerable and manageable. I live by faith. I have "spiritual armor" but it has lots of dents in it. I long for revival and renewal. Burnout makes it difficult.

OMG I am so sick of game shows and Lawrence Welk. Insane.....

LivingSouth: I'm in the same boat. I have no life, I feel like I'm in prison, stuck inside a house with a crazy old woman who wants constant attention. My older sister will not help. My distant cousins who are all wealthy and live in a fairytale just say put her in a home it's only $6000 per month! We're poor, I'm now broke and have no choice but to live here for it looks like the rest of my life now. This is torture.

Susan - there can come a point where we must make changes for our own survival. It sounds like you are there. You have sacrificed a great deal for your mother and it is time that she go into a facility. Wishing you all the best.

I have been a caregiver to a 90 year old narcissistic parent for 10 years, 4 of which has has lived in my home. I cannot do it anymore. I am basically kicking her out. She has been in assisted living and independent and she refused to get dressed and go to eat. She won't help herself and she is delusional and will not sell her home to provide for herself in another assisted living. She says "God gave her that house and she will not sell it". It has been vacant for 10 years. She is also mentally ill and my brother refuses to help or even give my husband and myself a break. My husband works 60 hours a week and I now have 2 jobs and we are almost 60 years old and in not great shape ourselves. I have no one to turn to so she is going to finally have to make a decision to try and help herself before it ruins my marriage. Oh, she went 17 years without talking to my husband, but now she willingly lives in his house. She will not walk, she wears a nightgown 24 hours a day, 365 days a year and has used a potty chair and will not open a window or use the a/c in her room and my house smells like ****! She will lie to my face and she was also an alcoholic until she fell. I hate her and it is killing me. Absolutely killing me.