For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

I am a caregiver for my husband who is 12 years older than me with dementia and severe osteoarthritis. There is no hope for these diseases - only decline. What I have done is get help for myself by pulling together a team of professionals. I am in no way able to do this on my own and family is not there for me. Almost every cent of Medicare goes to health care and I use as much as I can so that I can give him the most compassion and love possible. These are long hard years - now and to come - and I want to look back someday and say I did the right thing. It is not easy - life is hard. But if we can just hang in there for others, I feel and believe that is what God wants.

I'm tired. I'm my oldest son's grandmother caregiver & I live with her and to booth, our great grandson is living in the same town as us and he has issues exactly like her side. My head hurts, I'm ready to leave here and I'm stressing cause my home was destroyed in Hurricane Harvey. I do have a FEMA hotel room. My get away. Today I'm deleting grandson from my phone and I'm on my way to hotel. She's still able to do things.

I am amazed and awestruck when I read your posts, and at the same time I feel that if you guys can do it , well then maybe I can too. I have my ups and downs. I go crazy, I get depressed. My mom has been living with me and my husband for almost five years, and she now has CNA's doing most of her care, My husband is generous, but he is sensitive. And my mother is sharp and sensitive. They are both high maintenance, but I love them. And I keep reading your posts, and I get by. I slip out for coffee with friends, I go out with my husband once a week and I trust in Gd always.

I've sunken back into a depressed state. I've cut off my friends and have given up on my stupid little goals I had for myself.

Both of my parents are 83yo. both have dementia and my life is a total mess! my emotions are a roller coaster!! I live with my parents and the only caregiver. I am 60yo and feel 95!!

Dear Friends,

Thinking of you all. Sending you extra hugs. You are all angels for trying every day for your loved ones.

I am totally immobilized. I retired from my job 6 months ago and while I knew that my narcissistic, angry, argumentative, verbally abusive 89-year old father would not be the easiest to deal with, I never thought that I would miss getting away from him just by going to my job, which had some of its own stressful aspects. He obviously was expecting me to essentially replace my late mother who tolerated his behavior for decades. I avoid him as much as possible and try to do only what I have to do. Except for the outrageous cost, I would feel no guilt about putting him in a facility where he would have no freedom and he obviously doesn't appreciate the fact that it is only because of me that he has been able to remain in his house. He would not be a good candidate for assisted living. I hate not being able to enjoy my retirement, or to get another job. I am also not getting very much exercise and it shows!

Avocado I truly feel your pain. I sometimes want to walk away. My mom doesn’t qualify for a nursing home because she’s too independent and assisted living is too expensive. So,I have to suck it up and take it.

My 81 y.o. Alz mom lives with me 24/7. She forgets all her friends and relatives, and has no hobbies. And she doesn't want to socialize with anyone. In other word, she has nothing to do. She doesn't want to read because she can't see well but she doesn't want glasses either. She watches TV sometimes and that's it. So she looks solely to me to entertain her. As soon as she wakes up, she asks me where we are going to go that day, then she asks again in 5 minutes, 10 minutes, 15 minutes, etc. It drives me CRAZY. She wants to tag along with me EVERYWHERE I go. She won't leave me alone. I have no me time. She even follows me to the bathroom, tries open the door to ask her questions for the 100th time. it feels like torture sometimes. She doesn't like crowds, noise, busy places, smelly places, cold places, sunny places, but she wants to go everywhere with me. I can't even do grocery shopping with her because after a few minutes in the store, she says she's too cold and wants me to take her to the car. In the hot summer, I can't leave her in the car, so I have to leave the store and not do my shopping. Or when I can leave her in the car in the shade, when I come back, she complains that she doesn't want to go with me and that I shouldn't make her go again. Grrr... This scenario plays out at least once a day, every day for the last 12 months. She drives my kids crazy with her repetitive questions and comments. They try to avoid her as much as they can. I feel bad that I can't take my kids out to amusement parks, museums or beach or go skiing this winter because of my mother. My husband takes the kids out without me some weekends, but it's difficult managing two kids by himself. I resent my mother for upending our lives, for putting so much burden on me, for giving me and my kids so much stress. I would be so glad and relieved when the burden is over so I can get my life back. And I feel guilty for feeling that way. 
Thanks for letting me vent. 

I've been taking care of my 90 yr old mother with dementia for 7 yrs. 24/7. I have pretty much given up on the notion that there is a god. However, I am in a living hell on Earth. I'm ready to be put out of my misery.

I am not coping too well. Just went for antidepressants. Went through it with my Father in Law, Father, now my mother in law who is very demanding. I am 57 and waiting for my life to begin. It sucks!

The thing to remember when things are difficult, is to schedule a little time for ourselves. It can be in the morning, going to a coffee shop or whatever. We need to take care of ourselves, so we can be best selves.

Wow! I can relate to so many of these posts, same situation here. Caring for my 81 year old Mom, who has dementia, doesn't want to do anything except watch TV, expects me to be the sole source of care, entertainment, won't engage with anyone else, had to quit working, this is a huge strain on my marriage, she can't afford assisted living and she doesn't really qualify since she is still independent in a lot of ways, I am going nuts, trapped here, caring for her, the cats, my husband, the house chores, cooking, etc.etc.
Yes, I wish I could walk away and have my life and freedom back. Almost 5 years in, dealing with my dysfunctional siblings that do nothing, husband wants nothing to do with my Mom either, feels like nobody sees me and understands how this is affecting my psyche as well as physical condition. God help us. I am worn out.

Thank you all so much for sharing. I don't feel quite so alone anymore. I have the same emotional ups and downs. Lots of sadness frustration anxiety. Mom who lives with me and is 90 and in end-stage Alzheimer's is actually doing pretty good. I'm the one that can't seem to relax and is anxious irritable and sad. I have moments of feeling good. But lately I have really been struggling with feeling very very down and tired. This may be going on for a while so I need to find a way to nurture myself and to feel better. If anyone has any suggestions I would love it. I feel like I may get physically sick if I keep going through this stress. Thanks for being here.

Update. My health problems are mounting.  My spirits are still up. Feel bad for those of you who are miserable. I'm an up person, not judging, just listening. There are so many things that are interesting that I can do while Mother sleeps and takes naps. With a little money and a laptop, I have been buying and selling penny stocks. It is interesting. Yahoo Finance has comments section that is supportive.  
         There are many ideas on the internet on how you can make money from home. Was just thinking that a good business would be cooking meals for others and maybe your own Loved One with Alzheimers  from a web site on a diet from an Village in India with no Alzheimer's.  I've heard of cooks preparing meals from seaweed etc to cure cancer and that it has been a part of having cancer go into remission.  It is something I would love to do if I was caretaking Mother from home but we are at a Senior Facility where I stay with her 24 x 7 and all we have in the room as far as cooking is a microwave, a sink and refrigerator.    

Hi daughterlu - buying and selling penny stocks sounds like fun. It certainly provides the excitement and a distraction from the daily stress of taking care of a sick person 24/7. Hope you're making some money.

Worn out. I'm isolated with my mother unless my sisters or niece show up. Today was one of the worst days with Mom just almost frantic and asking nonstop nonsensical questions about things she couldn't recall the names of. She struggles to walk and has to be helped, and she wanted to walk but can't walk far with horrific arthritis in her back. I am so ready to be horizontal. I hope she sleeps throughout the night.

What is the 40 percent death sentence for caregivers? Sounds really bad!

I've always been skeptical of that statistic, I imagine it is skewed because the majority of caregivers are spouses who are in the same age bracket and whose health is almost as precarious as those they are caring for.

Not coping well. Last night busted my ass to make a real nice roasted chicken, mashed potatoes and veggies. It was Sunday, went to the store, dropped $60. Making dinner, enjoying wife and daughter time, made a cocktail. Finishing dinner, announce dinner twice. Dad in his living room on the phone. I can clearly hear him say "my chef has called me for dinner"...... I am only 12 feet away in another room with open doors between. I loudly say "I am not your chef"... he replies, "oh, you wern't supposed to hear that". That was it, i put the gravy down, told my wife to enjoy dinner and I went to our bedroom. Had a bit of a loud argument with myself, Wife came up see I was not well. Then she proceeded to set him straight. I tried to call her off but she vented on him, "We are not your chef, your maid, the people who pick you up are not your chauffeur, this is not a hotel"...... (all things he has said before). I took a short drive to yell in my car, came back and went to bed only to get up at 3. My wife and I talked this AM. I was making breakfast for the 2 of us. He comes down early for once, I apologized for yelling so loud. He said "this will happen"............. my hands started shaking and I left to kitchen...... I extend the olive branch yet again only to be slapped in the face with it. So I guess he didn't hear a word last night. He said "chef is a compliment".... This was after we heard him telling someone on the phone how "he does this and that"... all things that we have done but he tells it as he has done it. That I let slide but I am not an employee. He thinks it funny. I grew up with my step grandmother making jokes like that all the time, it wasn't fun then not fun now. I am sure he will be on the phone to my "Disney parent" sister to complain how terrible life is here. Just frustrated. No matter how many times I tell him it doesn't get through. Am I being childish? It is not life or death I understand just I am in this 24/7, every day is like the "groundhog day" movie.... Anyone else's parent treat them like an employee or the house like a hotel?

I'm sorry TG, but you seem to have this fantasy in your head about the perfect family that bears little connection to reality - not just your reality but that of anyone else I know. If you keep clinging to this vision you will continually be slapped back down when you are confronted by the harsh truth, life will never hand you that perfect family you seem to think is waiting for you just around the corner.

Tgengine - you have posted here and on other posts about your dad - but you won't kick him out -says he doesn't have enough money. My mom only gets $700 in SSI but has an income pegged apartment for $300 a month in a senior complex. Find him a place to live - he is still driving and can fix his own meals. You have had him in your house for years now and obviously it is taking a huge toll on you. GET HIM OUT.

You also mention having to give him money each month as he spends. My mom did that too, until my sister and i both said "NO" and held firm. When my mom didn't have rent money and we refused to pay - she learned to budget.

You can change this - he won't. It sounds like your wife is at her limit also - what about her health issues? Get him out!

Yea I feel the same way many times a day dishes laundry supper cleaning her dogs pi** up her poo off the toilet so kids don't sit in it and after I have scrubbed the whole house an take a break I walk past her and immediately bombarded with her handing me her cup to fill or her pointing to the rug I've already swept(dark blue rug shadows or footprints in it) or a bit of water on the floor my goofy lab has slopped on it smh or her dog needs to go to groomer AGAIN or like yesterday when she tried guilting her grandson(my fiance and boy oh boy tht makes me angry cuz i can see it hurts him)I can't say I don't want to completely lose it it but she does receive a tongue lashing once in a while but it gets me nowhere except more p***ed then I feel like an a** because if she can barely wipe her butt how is anything coming from her mouth rational? It's a infuriating senseless cycle so I've begun to simply ignore her and by this I mean I think ok she has her meds she has been fed has a drink a bath all is well generally so when I hear "HEY,HEY,HEY,HEY I ignore her just block her out for her sake and mine. She comes to my room where I'm hiding I lock my door, i put my ear buds in and jack the tunes as loud as i can it's not hurting her and I'm not yelling out of frustration or crying or losing my mind. I'm trying to cope and I'm finding ways suited to me but it's hard and some days if I don't laugh at her for some of the goofy sh** I'll cry. SIGH life with the elderly is so complicated.

I’m p***ed off and angry because most of my mom’s problems are either of her own doing or all in her head. She has phobias, but until I got I involved with 100% of her care - she wouldn’t eat properly, be compliant with her meds, or ever, ever bathe or wash her hair. She had some foot problems and instead of saying something or going to the doctor (back when she was still driving), she overcorrected her walking to make up for the pain, and now her leg is crooked.

What I thought was a light at the end of the tunnel was only an oncoming train. Mom was having falling episodes and we took her to the hospital. I made them keep her overnight in the hopes they could keep her long enough to get her into a nursing home. They did get her into rehab for leg weakness with the hope she could transition into long term care. I was shocked when they discharged her, per Medicare, after only 17 days! She was no where near ready to come home. She could barely walk. Sooo, she came to live with me and my new husband - married less than a year.

We applied for Medicaid, but was denied because she had not been in the nursing home for at least 30 consecutive days.

Even though I was already doing a lot for my mom 3-4 days a week in her own home, having her here 24/7 has been a huge upheaval in our lives. Forget about privacy. My husband and I have not been anywhere together since before Christmas. To be honest I don’t know if we trust her enough that be by herself in the house yet. She uses a walker and does ok with it, but won’t walk the way her physical therapist has been working on. She gets PT twice a week plus a nurses visit once a week which also disrupts our schedules as they only call the day before they arrive! Can’t plan anything even if we could.

She has a bad cold right now with a cough and she refused to take her cough medicine last night - for whatever freaking reason. And before she went to bed, she unplugged her humidifier. I was upset and angry the rest of the night.

I dread bath time because she never wants to take one. She complains the whole time.

She thinks we are punishing her because we make her do things for her own good - like medication, exercises, reminding her about walking correctly (which she can do just fine when you tell her to), bathing.

I have a brother who lives in another town, but not that far away, who said he wanted to move to our city, live with mom for a while and then get their own place and mom could live with them. My brother has a partner who is a nurse. Sounds like the perfect scenario, but I am convinced it will never happen.  He’s been saying this since July.  They don’t have any money and I am not going to foot the bill. The two times last year that my mother went to visit him for a week, I had to buy the groceries. Frankly, it would probably be worst, not better, having him in the same town. He is 59 years old and has never grown up - further perpetuated by my mother. He used to call her no less than five times a day. Then he started calling me every day to see how mom was doing. I bluntly told him to cut that crap out!

My next step is to have my brother keep her for at least 2 weeks every two months. Before, it’s always been some excuse - sick, work, no money, my partner, blah, blah, blah. It isn’t fair all of this has been dumped on me.

Besides my mother’s personal care, I was also taking care of and maintaining her property. Since 2011, not once have my brothers offered to help.

To be honest, as I started writing this - tears started rolling down my cheek. I don’t even know why. Then I really cried. My husband was worried, as I am not a crier and he has never seen me do so.

This turned out rather long, but feel we all have a thread in common - we feel trapped by circumstances not of our own choosing, by a life more challenging than any job we’ve ever had. We feel sadness and despair. We feel abandoned.

Love and hugs to all of you.

Sell her house and get her into assisted living.

I to care for my mother-in-law 24/7. I go through all the emotions as well. I an young and had a life before this job feel onto me.i have 2 teenagers at home who help when they can and I have 8 grandchildren that I was able to spend time with whenever I wanted. Now it's just me. My husband works many hour and isn't home to help much. I feel like my life has came to a standstill and I can't stand it! I am doing this out of love but not knowing when it will end is the hard part. I'm glad I have you all as a wonderful support group. Thank you!

I'm a 24/7 caregiver for my 99 yo mom. She has dementia but other than that the only thing is she is slow getting around. I was no way prepared to to handle the dementia. It is very frustrating and emotionally taxing. I have respite care coming in but I always have to go back. I left my home, job and boyfriend to do this so this has also been a challenge. This site had helped me in many ways.

Sometimes, when my 81 y.o. Alz mom does something crazy or throws a tantrum, I just walk away and repeatedly tell myself 'I don't care, I don't care, I don't care.'
I try to block her out so that I can cope and keep my sanity.
I wish my late father would come and take her with him. He had come a few times when she was really sick and near death. I saw him in the mirror with my own eyes. My mother saw him standing at the end of her bed many times. But I digress. I should start a new thread to ask if any one else had seen their dead relatives.

Tried reading "being mortal" but it just brings up so much in the first few chapters that it is hard to read. "Guilt, anger, all the emotions come to the surface. Have to keep putting it down. It it not a life and death struggle I have here like many other caregivers have, it is coping with the cards I dealt, (Yes I dealt as this was my idea). It is easy to say "move him out" but there is no option. It is just trying to figure out the best way to make a challenging situation. I talk, I ask, I vent but alas nothing gets through. It does for a couple of days and then back to normal I guess.
The blowout the other day just resulted in waking on eggshells. Now he closes his doors and stays quiet. Makes sure we cant hear his phone conversations. Tells my daughter the news of the family and not us. I guess he is punishing me for losing my cool. Nice, my parent is punishing me like a child would. So half of my house belongs to other people. I get to deal with it 24/7 as I work at home and cannot afford an office. Such is life I guess, it will only get worse from here so I guess I should enjoy this part of the ride?
Friends are tired of hearing about it, cant talk to family about it so you all get to hear my vents. Thanks for listening, at least typing it out makes me feel a little better. Reading others threads help with some coping mechanisms, as I know everyone else here is walking the same path.

OMG! My 84 MIL did not want to take her bath today when I wanted her too! Why you ask? The water main in the street burst and they shut off the water for at least 8hrs! My MIL only knows two speeds slow & slower; plus she is in the 6th stage of dementia! Of course when I tell her she needs to bathe now before the water turns off, out comes the 21 q's!!!! Plus I work from home, the aide that deals with couldn't deal with her "crazy moment" ( because my MIL fight with her 24/7). Did I forget to mention that my MIL new thing....threatens us that she will run out on the street, because she has no money, she has no clothes, she has no panties (suffers from incontinence so she has to wear pull diapers)! OMG!@!!!!!!!!!#%#@*^#& I am trying to keep this clean and not cuss!!!! I need this like I need a bullet to my head!! My MIL has ten children, and only one can take her for two weeks at a time, then she comes back to me for two weeks! God forgive me, but I am starting to resent her and cannot stand it when she comes to my home. She is like a Tsunami! I don't have enough lines to VENT!!!!!!!!!!!!!!!!!!!!!