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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.
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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!
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Dear Friends,

Thinking of you all. Sending you extra hugs. You are all angels for trying every day for your loved ones.
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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!!
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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.
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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.
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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.
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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.
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Poorly..I neglect my own health for my mum. I constantly worry if something happens to me she can't take care of herself. She needs assistance with every single thing. My life savings is being depleted. I often wish WW 3 would happen.  No I'm not taking any freaking antidepressants. The side effects are worse than the depression. But that's life. Living is suffering. 
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I am a 24/7 caregiver to my 90 year-old mom. After trying several avenues of trying a facility care; she kept ESCAPING!! So then I took her back to her house; eventually had to quit a job and moved. I knew only one neighbor here.
I found an affordable dementia daycare through the Council on Aging (nationwide; check out what’s available near you). It’s decently affordable so weekdays she goes there about 5 hours. It’s a key to sanity. I can clean, run errands and clear my head.
Next, I was trying to think of something I could do that would be creative and keep my brain cells going. I hadn’t played the flute since high school (over 40 years)!! I could barely play a note. The local music store was nearby; I signed up for flute lessons. After a few lessons teacher said I should think about joining the community band. I brought mom with me and I love it!! I found joy!! Thursdays mom gets 2 hours of music therapy and I found community! The band loves her; she colors and sits next to me as I play.
A band member gave her bongos. At home I’ll play songs on the flute and she accompanies me on bongos.
She has progressed in the dementia disease and KEY to keeping her at home has been finding a psychiatrist who understands dementia so her anger is kept under control.
She has lots of energy so daycare helps with some socialisation and activities while I get her to walk, color and active with music. This way she sleeps at night until we need to tweak those meds again.
All is not lost. I will be praying you find a unique creative solution for you!!!
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My mom is sharp. she has been living with my husband and me for almost 4 years. She onstantly calls me all kinds of names and tries to make me feel guilty every time I go out. My mother has GNA's 24/7 attending to her, and she pays for them, but I buy things for her, do her laundary, and do the food and medication prep. She calls my 4 brothers and sisters (all of them out of town, except one) and tells them how she is so unhappy she is here and how no one cares about her, etc. Then they ask me what's going on, or they tell me what to do. It is a constant struggle to ignore her name calling, establish boundaries of what I will and will not do, and maintain a loving, caring demeanor. I see no alternative to this right now. I am so impressed with those of you who are hanging in there with care and compassion. May G-d give you the strength and courage to continue... to care for your selves and to care for your "loved ones."
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I am 63 my husband is 74. He had a stroke 5 yrs ago and was diagnosed with first stages of dementia last January 2017. He had his 2nd stroke with a brain bleed in the left frontal lobe in August . He came home from rehab in September and I was so sure I could take care of him myself, but my health isn’t the greatest and now feel like a failure. It has taken 4 months to finally wade thru all the paperwork and get help. My husband is retired navy and finally got an appointment to see a dr. and hopefully get some good news. I finally had to hire a home health aid which starts the end of the month, our 33rd anniversary to be exact. My son moved into help me emotionally and watch over Geno when I need to go shopping or run errands. My family can’t be found since my husband & I can’t help them financially anymore, we are of no use. You really find out who has your back when things go wrong. I’m exhausted and miss my hubby all the time. He cannot speak to where you understand him, but thank god ive been with him for so long I usually know what he wants but the times I don’t , it’s not pretty. He is in continent but at this time just with peeing. It can be so frustrating at times and I get up at night with him 2 or more times and change him and the bed liner. I want to keep home as long as possible because he is the best thing to have ever happened to me. So all you ladies and gents, I hold you in the highest regards for taking care of your loved ones and know how incredibly hard it is on our spirit and well being but at this stage I’m glad I can bring Geno some comfort of being home with me.
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I care for my 90 yro mom without help from my brothers. I’ve had to put my life on hold. I retired because it was hard to find dedicated people to take care of her. My mom is sometimes ungrateful and too demanding. She never wants me to go anywhere and leave her with anyone else including her relatives. I explained to her that I must have an outlet.
I truly understand how you feel. We just have to bite the bullet and keep it moving forward
Take a trip and get away for a few days. I finally got my daughter and younger brother to take turns staying with her so I could have a vacation. That was sooo relaxing. The realty was that after those four days I had to return to my grueling life again. What do I do on a daily basis? Cry and pray!
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I'm conflicted I have my 75 year old mom handicapped with CHF ,my 93 year old Aunt with Dementia and she's not very nice,she was my dads sister and my dad passed away last year from cancer my Aunt says really MEAN things about my dad and this makes me VERY angry ,she was never married ,and never had children,therefore the Aunt has become very NARROW MINDED AND only thinks about her needs I know she doesn't know how to be part of something other than herself because all aunt ever had to be concerned about was herself ,I LOVE her I want what's best for her but I just can not help it I get so aggravated with her snide comments ...she said my grandson was stupid and unruly before ,and pretends like she only knows me ,aunt says I HAVE NO FAMILY...what ?we are her family !OUCH!!! I KNOW SHE HAS DEMENTIA BUT....she's always been kinda of a mean person .She lied to her neighbors and said she has no one .no family and that she was an only child!!she hid all our family pictures in her home so no one would ever see us ...still says mean things about Dad ! Until one day a neighbor found my number and called me she said YOU ARE NOT LEAVEING HER HERE FOR ME TO TAKE CARE OF!!! well I informed that neighbor I called my aunt 1 or 2 times a week went to visit her and begged my aunt to come live with us....her dementia had already been starting I suppose ...I do my best and try to walk away when the mean starts .I know it's what's best for her to be with us although she's not always easy !haha Lol
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My answer is more uplifting and practically encouraging. I am the caregiver of my mom who is 105 1/2, almost 106. Like others, I see the decline everyday. I have sacrificed fulfilling my own life so as to give my mom premium care. But, after a while it took its toll. Mom has been on hospice since 2010. What changed or helped me cope? I was able to get adequate Respite Hours. It made a world of difference, I felt like I got part of my life back. So if anyone is on hospice. Number 1 is to make sure someone is coming daily to shower or give a bed bath including brushing of the teeth and combing of the hair, cleaning nose and ears and dressing the patient and making the bed and/or changing the linden on the bed. If you have this 6 days a week, it is a tremendous help. Then from another agency if you have a secondary insurance, you can have a CNA maybe for an hour and 30 minutes plus maybe 30 minutes for light homemaking where they can vacuum and clean and straighten up the bathroom or area where the patient uses. Also someone to come as a sitter and give you respite time to regroup. Use respite hours for your entertainment, or going to the doctor or just shopping or being with friends or family. All that I have said has saved me as I was burnt out. I would like everyone to see this because most time, we are ignorant as to the help that is available for caregivers.
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Not doing very well today. Mom 91 with late-stage dementia didn't sleep last night or today. She had been sleeping about 18 hours a day. She does better with more sleep. She keeps wanting to climb out of bed over the bed rail. She says she has to go home. She is normally in bed all the time for the past 3 years. She needs assistance with everything so if she gets out of bed and I'm not watching she will fall and most likely end up in the ER. She was talking to someone in the corner earlier. She talks to an imaginary person about me when I leave the room. She wanted to rip up the blanket and get a scissors so she could cut up the sheet. She is extremely agitated and confused. She doesn't know who I am and said she never saw me before this afternoon. I am hoping that eventually she will get exhausted and crash. This has happened before.
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I feel as if I am a failure. For 12 years both parents have lived in my home. In 4 years, I’ve not had a vacation. I have two siblings with families that live in neighboring states. My dad has had a heart procedure in the past year where I had to take off work for 7 months to care for him since my mom has Parkinson’s. I’ve helped them get more financial help ftom various resources, I do all Dr efforts. I clean, cook, do all chores, errands and manage all their affairs. In January, I handled all funeral planning by myself. I’ve managed all legal efforts by myself. This past holiday, I presented a proposal to my siblings about my dad’s declining situation with sundowners dementia and how we needed to change the approach because I can’t care for him at night and work. I had site visited 4 locations and provided pros/cons, etc.

I was met with;

1) defensive behavior and insurmountable questions
2) medicate him more - give him an ambien - knock him out at night
3) this situation is not about you, they should make the decision and I don’t think he wants to go
4) told they couldn’t help financially
5) told they couldn’t come help more because “they have families and their own personal matters to manage”

I am so hurt, angry and feel abused.

I’m not doing well today - I was so glad to see their families pack up and leave yesterday - after I had to host them in my home for three days.

I feel like packing my bags today, leaving for a week. Whatever might happen, oh well. Why should I care?
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Its hard and stressful especially when you have your own little family. You kinda have to put your family aside and if they understand for you then you're lucky. You don't know how much time your LO have left with you. Sad thing is you have siblings but they are no use and seems to be taking advantage because you're doing everything. Im feeling stress not from caring for my dad but dealing with others around me
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Lampie, a fortune escaped me too. I should have been a wealthy woman but got taken by my first husband, an arranged marriage that I was forced into. He got all the sympathy and took all the money out of our business before bankrupting it. Mother was so mad she didn't hardly talk to me for 20 years. I got to live my life on my own and was on top of the world when a con artist I was trying to help because he was in recovery embedded himself in my business and started extorting money from me. When he went in for the kill, I told him he could do whatever he wanted but I was not going to let him extort any more money from me. When he died, I was his only friend. He turned to me for help but it was too late. Throat Cancer took him. He died so quickly. I had to closed my business for health reasons. I went out west for 5 years and survived by skiing and healthy living to get back to health. In a bankruptcy I paid off all debt over 5 or 6 years. I was advised to just leave town and not pay back debt, that no-one would come after me. I said no, I want to come back because this is where my Mother and children live and where the house is that i bought in the mid 80's. It was against my sense of right and wrong  not to pay back debt.  Use your wits to survive. Apply for what aid you can get. There is a lot of help out there but it takes persistence. Michelle's answer above is a good starting point. Anywhere you go that does not work out with assistance, ask them if they can direct you to any programs that could help. If you can, grow your own vegetables (organic if possible) in the summer. When I was broke out west friends used to share food from their  gardens and fish they caught and game they hunted and packed it up to give away. If I wasn't so broke I might not have gotten so healthy.  I gave back to the community by doing volunteer work teaching disabled children how to ski and working at the food bank.  You and your husband gave to the community by teaching,  Others should reach out.   Also if I read your answer correctly that your attorney got all the money you were cheated out of, go to the disciplinary board, your politicians in power, the Attorney General anyone who could advise you on this matter of how to get your money back from the attorney. That stinks rotten.
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I sometimes live in a dream world that everything is beautiful. I have been loving that Mom and i have this time together 24 x 7. Blessed. She says she doesn't know what she would do without me. I am living in a very nice senior facility with her. She is the Mother I always wanted - loving, not critical. I was glad to read where others have fun times and experiences with their LO. She needs me. I am at her side to catch her if she gets wobbly. We dress up in coordinated Mother daughter outfits every day. We go for rides and on Thanksgiving went to a friends house to visit and spread cheer after our lunch and a nap here. Mother says she never wants me to leave her. The feeling is mutual. Brother never wants her to leave the facility and for Mother to go on Medicaid when her money runs out. I am ageing quickly from the stress a dysfunctional family has wrought. My brother and sister-in-law are antagonists. They and cousin have brought much harm to Mother and myself also. The last time i talked to my brother I told him that for the last 40 years he has been nothing but a heathen bearing false witness against me, that I was disowning him. He is no longer my brother. Mother and I have to get her account out of the brokerage that is as corrupt as he is and to get to another brokerage. He is not the POA or Trustee of that account. He was supposed to only keep her checkbook where he writes the check, signs it then mails it to me for my signature. We both have to sign any checks. He used that position to put himself in the driving seat at Mother's last facility where she was greatly harmed. I am afraid he will start acting out again. I am POA of Health Care. I had no say at the rogue facility when they connived with bro and cousin to oust me and put Mother in PC. She was injured in the process and was close to going blind and death from their negligence/ intentional/criminal acts. Brother said to me, well I talked to them and they said she was doing fine. My son got Mother out of there to the really loving facility where we now are. It is 10 months later. Mother's health has improved a great deal but not near where she was when the trouble hit. Bro recently called me up yelling at me that in 2017 we spent $120,000 so far. I think he is going senile. He will be 79 in January. The big money spent was the rogue facility that billed us in Jan and Feb and we probably got a final bill in March of 2017. We didn't move to the new facility until some time in Feb 2017. The outlay at the rogue facility was enormous for private duty Nurses Aids at $25.00 per hour when my hours were drastically cut back and i could not stay overnight. I don't see the bills from the new facility, he does - to write the checks.  I didn't see anything unusual.  We were billed here as we were quoted.  He won't send me a copy and the facility doesn't want to either. I get the accounting and taxes and dirty work on top of full time caregiver to Mother and l have to check on everything. Amen.This is my prayer for help and direction.
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Mom is 105 1/2. I have lots of respite hours which makes a world of difference. I feel like I got half my life back. You need respite hours. Look into the type of insurance the patient had and take advantage of "respite."
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@lambpie
I am so sorry you are going through so much. It is sweet that you still want to do something special for your husband on Thanksgiving. In spite of all the challenges, the caring heart is there. That is great.

The whole thing at the restaurant is one of those crazy, not cute things that can happen to a caregiver. You really did a great job with it. Part of me is glad you went into detail because it reminds me I'm not alone in dealing with certain things and that some people have done far more than I have had to do.

Solutions: Perhaps you can look for agencies that help low income, disabled, etc. households with some of the expenses you mentioned: Catholic Charities (transportation and other things), Habitat for Hunanity (they do home improvements), etc. There are some organizations that do car repairs for free and others that give away reliable vehicles. Also if you belong to a local church, have you asked them for any help? And is there a large church near you that may have some resources? The other thing that comes to mind is one of the Christian radio stations in my area (Dallas/Fort Worth TX) has something at Christmas where people write wishes for needy families so other people can grant them. I know it probably feels weird to nominate yourself, but I think it would be understandable and in order in your case. I hope this gives you some helpful ideas.

I just prayed for you and your hubby. Take care! *hug*
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Caring for my husband would have been easier had we not had our life savings stolen by an investor who ran to Europe with our 70 years of teachers’ savings. We have been in a Federal Receivership since 2013. The law firm liquidated the crook's assets (our money) and now gets paid quarterly year after year until she has it all. My husband keeps me awake all night yelling profanity (part of his dementia). Getting only two to five hours of sleep per night since January has almost killed me. Worse, since August: the air conditioner went - $6,000, then the H-VAC had to be repaired plus rodent control (to get warranty for system)- $3,000; found out we need new roof $13,000; control unit in furnace has shut down heat in the middle of a storm $600 (we might get it fixed tomorrow); refrigerator door broken, freezer light won't work and freezer door broken (haven't priced this yet); one of the critical outlet lines went out in master bedroom (haven't priced this yet). It's depressing because we have now drawn all the money my husband had left from a 401k and now the Trump Tax CRIME is going to kill us all through the loss of health care credit, rising premium, and Medicare/Medicaid cuts. Oh yea, I had cataract surgery on my right eye at beginning of the month, and I can't see yet. My left eye will be done on the 30th and I’ll need new glasses so I can live. I quit working in 2007 to care full time for my husband. Today I looked at myself with the magnifier and see that I have raccoon eyes. My biggest challenge now is how to get to my surgery and the follow-up visit AND pay $300 for the "baby sitter" that will be needed for my husband. Just that alone makes me cry. How am I doing? Not well. I have not bought anything to ware since 2010. I am still wearing the underpants I had bought for my mother just before she died at the age of 100. My car has 150,000 miles on it and I have no money to buy a new one. I wanted to take my sweetheart for dinner on Thanksgiving, but the last time we went out he had diarrhea through his sweats and I had to stick napkins up his pants and wheel him into the ladies room where I washed his pants in the toilet and the sink. He went home (25 miles) in sweats rung out by hand, and his shoes in a take-out bag. It was a real experience. Thank God the restaurant had a super-dynamic flusher, big water supply, and plenty of soap and paper towels. They did not scream, “And never come back!” as we left, but I don’t recall that we got our meal. Vote: 1. Should I try to take him to Thanksgiving dinner at our local restaurant (less than 10 blocks away) OR Should I call for turkey take-out for our quiet, romantic 4,015th meal at home -- as I sit and try to make interesting conversation before I drive him nuts and he starts to yell profanities? (Conversations is over-stimulating.) These are the days when, if a cheerful clerk asks you "how is your day going so far?" or "you have something special planned for the holiday?" I say, "Ya, it's all good: I'm going to go home and try not to slit my throat. Have a nice day."
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Not good. Like you, I'm not living my life. I'm 24/7 with her - cooking, cleaning, bathing and changing her, grocery shopping, etc - and I'm being held hostage by her manipulation.
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This website is such a GREAT PLACE TO FIND ANSWERS !I'm lucky; You know I needed to VENT!!!!Ha ha! I am so happy!
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YES ! It's hard ! I LOVE MY FAMILY! I want what is best for them, and I know that's me takeing care of them! And I think it has built character in my grown up kids! I believe that young people should be exposed to the trials and tribulations of growing old .It's a life lesson.
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I got a kitten. Compensatory kitten. I still feel all the bad feelings but he cheers me up and lightens the mood around the apartment.
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Grumpy... As i am told in life, i shall continue to be BLESSED by the lord each passing day and night for how i am with mi 2 heroes in life, my PARENTS...
So, Grumpy cheers to you, and god bless you. I 100%  ABSOLUTELY agree, and love your post. 
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I sure would NEVER regret, nor would i want to change anything and i do not,
nor do i bemoan.

Even when i as you said 'dance" with your parent,and or just take them (weekly)few x a week out for a ride, on a bright clear-sunny blue skies day, they love it! We joke, talk,laugh and we stay positive. I motivate them regularly to remain focus/positive,and smile as much as feasible.
We love our days together.Then at night, i go out for them to get dinner.Or help mom cook and we love that.Joke some more.Plan for a trip the next day,or a short day trip in town. The folks,and i are going on a trip for a few days or 1 week to my home state.(But i am enjoying/LOVE NC)But i am glad we are going to where we are all from,to see 1 of my daughters'her beautiful new child and have a wonderful trip, road trip.DAD always love to drive, but since his light to mild stroke, he has not drove yet, (only a short distance 1 and a 1/2 block to the local store,but he loved that! Mommie was in the car with him,and i followed in my car close by.He was having so much fun.We all loved it.He has improved almost a year since the scary fall/light to mild stroke, early 80s doing well again (just his hand still get cold psychologically that is)the dr.said,not really cold.but again he feel it is cold.We hope this side affect preclude.But, i don't regret NADA...(nothing)Daddy doing well again,and mommie is still fine, praise the lord.
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So GRUMPY i agree.
Not judging any one here, but some post i feel they are bemoaning so much(i think that's sad)but i do not judge no one, however, i am not like that. I love your post,and i am glad i came across your post....Love it. Adios! and GRUMPY bless your dear loved one, your parent, and god BLESS you. Hugs and Blessings.
Adios.
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Cajohnston,
*HUGS* I am here for you. I can't imagine going through that one. If Mom did that, I hate to say but I would not even know it, I would be asleep next door. That is another reason an inlaw unit is a lifesaver for me. If I had to be in the same space 24/7, I would surely be ready for the men in the white coats to get me with their butterfly nets by now! I can barely take a couple hours truth be told! I just keep an eye on her and make sure she is safe and has what she needs and all medical issues are tended to. It's too hard spending lots of time with her because it isn't even her anymore! It's a childlike facsimile of Mom. It is heartbreaking to watch and then I feel awful for having those thoughts and feelings. I am here.
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I am doing horrible. Last night at 2:50 in the morning I heard the tv blasting and all the lights were on. My mom was up as if it was morning. I have to get up to go to work in three hours. I turned the TV off and said Mom, it's the middle of the night go back to bed. She says ok and not even ten minutes later everything is back on again. I just don't know how much longer I can do this. Now I am at work half asleep and really upset that my life has turned into this. My husband is gone and I have no life of my own. It's so upsetting to me and I do not want to hold it against my mom, its not her fault however, that is what is happening and its not a good feeling...
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