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Have been doing the same as you - only going on 2 years not 5! Can't even imagine another 3 years like this! We did move mother into an Assisted Living Home nearby which has taken alot of the daily care responsibilities off of us. No she was not happy, at some point we had to make a decision that was in EVERYONE'S best interests. As for my stress - I have learned a to meditate and do yoga. Yes it takes time out a day that is already full beyond comprehension, however it helps greatly. My thoughts are with you and your family - best wishes. Remember to care for yourself also.
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My mom lives next door to me. I work at home and was only having help 1 or 2 times a week. It was killing me. She was mad all the time, even hitting me at times. I have accomplished two things since January of this year. I have someone with her every day from 11-6 making my work much better and I have her on Seroquel low dose at night to control her anger and aggression. Still a roller coaster ride because she hates having the people there during the day but it was the only way I could maintain my sanity. It takes every penny of her income but it is worth it! I was beginning to hate my own mother! She is still a real handful but at least I have part of it under control.
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Yes, you need to talk to an elder atty and look into Medicaid and talk to the doctors and your local council on aging or whatever it might be called in your area. Help is out there, but you have to go after it; it won't come to you. It's so hard to set boundaries with parents, especially, but my husband can be the same way. Mostly, though, it's his hallucinations and "crazy talk" that get to me. He thinks he is going to go to work later in the day, thinks he has stuff in his Mom's attic that he needs to get (she's been dead over 20 yrs and the house he is talking about was sold before that!). It really wears me out. Living with a husband who has dementia (whether it be Alzheimer's, Lewy Bodies, etc.) is like being single because you have to do everything yourself with no one to help make decisions. My step-sons don't talk to their Dad, let alone me. I won't burden my daughter with this because my husband doesn't like her (he used to, but they had a falling out about 5 or 6 yrs ago...she tried to "make up" but he would have to part of it). So I am alone...completely and utterly. I see now that all that has happened over the past 5 or 6 years is due to what was happening with my husband's mind. He was always self-centered and believed he was always right, but he was never mean and critical to anyone as he started to be a few years ago. Now whenever we go somewhere, he makes snide comments about everyone in the room. I always worry that someone will hear. I get so embarrassed; thus I don't take him anywhere I don't have to. It's not easy living with any of this. I am tired and frustrated and mad and sad and angry....like the rest of us. We can all sympathize and empathize with one another, but there is no changing what is happening, and knowing that it's only going to get worse makes it even more horrible to think about. Thus, I try to deny it. Not healthy for sure, but it's just too hard to face the reality.
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Oh my goodness. You just described my life. The only difference is that I had to move 500 away from my family to care for my mom. She cannot care for herself, refuses to move to OUR home, & doesn't want to go into a NH, so I'm separated from my family for most of the year. (I too am married to a saint, kids are grown) and I am disabled myself with diabetes, fibromyalgia & asthma. Some days I can't even get out of the bed, I hurt so much. Sisters are both too selfish to help out. One refuse to help, the other reluctantly comes down for 1-2 months then I'm thrown back here again for another year. I fortunately DO have a private condo next to my mom's so I don't have to live with her, but I can't even go to the grocery store w/o her going with me. She "pops" in on me, w/o notice, letting HER dog out (the one that she threw on me to care for) & I have to chase it down, insisting I go check her mail or making another excuse. She can't walk w/o her walker, yet she does all the time, knowing she could fall again. She is legally blind, has neuropathy, hip replacement, cant feel her feet, but she thinks she's TOTALLY independent. She can't remember the simple things, even forgetting that she comes down here just a few hours later. (I called her last nite & since I had gotten upset with her for not letting me know that she was coming or that she was walking alone, she pretended she had felt bad all day, really playing it up, long sighs, couldn't describe WHAT she felt, until I reminded her that she looked & acted perfectly fine when she had been here a few hrs earlier.) She had forgotten!! I try not to make her admit her memory is going RAPIDLY, just excusing it & even saying that I forget things too. TRYING to make her feel better but it doesn't matter. She uses guilt tactics on me, whenever she can't get her way, so I'm always apologizing to her for (basically) NOTHING! I'm worn out, fed up & ready to just walk away. I know I have been blessed with the separate condos, but I have NO rest from her at all. I cannot just get in MY car & leave, my cell phone will be ringing off the hook b4 I could get out of the parking lot. And if I don't answer, she'd call the police on me. (She's CONSTANTLY calls them on people just walking around on the property!) She OD's her bank acct on a regular basis & expects me to pay for & fix it. But when I suggest that we go over her bank acct BEFORE she OD's it, she shuts down & tells me "not to take away the last independence away from her". I try to tell her that I'm here trying to KEEP her independence for her. I'm a signer on the damn acct. If I wanted to take her $$, I could have already done so. I pay a large portion of her bills, ALL of her groceries & constantly buy her things that I think would help her. I can't remember the last time she said "please" or "thank you" or even ASK me to do something for her, She just TELLS me what I need to do, where I need to take her, etc. I'm so tired, and I have to listen to how wonderful the one sister is (that comes down for a month or 2) & how horrible the other is. I have told her I don't want to listen to gossip. She has lied about me, trying to convince my sister that I stole from her, when in fact I PROVED the charges were put on MY account, NEVER using hers! I've had all I can take. I'm mad & resentful. Since Jan when I came down here (again) after only 6 weeks with my family, I have missed BOTH of my childrens b'day, my 28th wedding anniversary, Valentines Day, Easter & (GOD this is where I finally lost it) my 6 yo g'daughter's b'day bc she wouldn't go back home for a week with me. I'm SICK of her selfishness!! And God, I am so sorry for stepping all over your post Drummer, but I suddenly needed to "vomit" this all up as I have NO ONE to talk to about this. (No, not even my husband since his mom has severe alzheimers & his dad cancer. But at least he lives in the same town with them! I'm seriously thinking about just walking away.... :'(
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Your comment "If I haven't put a meal on the table by the time she wants it, she comes into the kitchen and says 'I guess I should find myself something to eat...' " reminds me of my significant other (my "senior in need"). If I forget to give her a spoon with a bowl of cereal, she will sometimes start eating it with her hands, make a snide remark or just sit there waiting for me to notice.
Attempting to find free or low-income respite care has been unsuccessful. Even medicaid, I was told, requires the person to pay something like $1600 out of pocket for at-home care before it kicks in by the state. (This adviser was a caseworker for a senior agency who had her financial information.)

I wish "caregiver stress" was my only life problem because by itself it wouldn't be so severe at this point. It's one of several stressors converging on me. If I want respite, I think I'm going to need to check into a mental institution...except they aren't free!

BTW, it's totally ironic that the spell checker with the web server's software doesn't recognize "stressors" or "stressor" as words!!!!
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Drummer, I can relate to everything you said. When my mom first moved in with us in 2008 she could walk. She has Parkinson's and Alzheimer's at the time, then we learned she was in kidney failure. April of 2009 she had gotten up at 2 a.m to go have a cigarette outside ,yes outside, on our patio. She had sundowners syndrome so she was up most of the night. Well, when she opened the door she must have had her foot against the bottom and it knocked her down when she pulled. She broke her left hip and it was all down hill from there. She had hip replacement surgery then 7 days of rehab because that is all she was allowed and came home with this huge cast on her leg to keep her from moving. The Alzheimer's was affected by the shock so she had gotten worse. She was sitting in a chair on our patio with a walker in front of her and she was dreaming was baking and she got up quickly and fell . On that left hip. After that she couldn't really walk again. But the Alzheimer's got worse again. She tried to grab me around the throat and many times did things to hurt me verbally and physically and I was tired so the Dr demanded a nursing home. She hated it at first but as time went on she loved it and didn't' want to leave. Then we lost our house to a fire and moved to a different State. So I had to take her from the home and bring her to live with me again. Well, as time went on day and night she called me and wanted something, sometimes she was just scared, because she saw things that were not there. It got to the point I had to feed her because of the Parkinson's diapers because of kidney failure , she could do nothing for herself. My husband helped with what she would let him but she always wanted me. If I left the house she would give my husband a very hard time and he would call me and I could hear her screaming in the background so I had to come home. I had no life for 1 1/2 years day or night. We finally got Hospice to work with us and that gave us a little time and they were wonderful, Mom had less than 6 months they figured. Well she passed in January2013 peacefully here at home and I was holding her hand and talking to her and saying to let go and not to suffer any longer. Was everything hard? Darn right at times I didn't want to live I was so tired and confused. Do I regret what I did for her ? NO WAY. She and I had never been separated from the day I was born so I was with her to the end of her life. What I'm getting at is this, You must find time for yourself or you will not be good for yourself, your family or anyone else. Even if it's getting out for just an hour and leaving her with a friend , relative, or a volunteer, or if you can get her to go to a senior citizens group that handles situations like yours. They play games, have meals etc. Something to take her mind up and give you much needed time. Most of them will come and pick them up is they can walk and are mentally stable enough . I Thank God for every minute I had with mom even in the extremely hard times when she tried to choke me. I wish you the best and there is help out there you just have to find the right group. At the moment my mom is sitting in the middle of my dining room table in a urn that I made her that looks like a birthday cake because her Celebration on Life was on her birthday. When the snow is gone we will bury her remains with my father.
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I can't believe how many of us there are in this situation. I will spare you all the details of my storie, because its so repititious and exactly like yours. There has to be something more than just websites to vent our frustrations although it does make us feel a bit better for a short time. I do agree that everyone needs to take a breather and get away, but coming back I feel nothing but dread of having to go back to the situation. I love my demanding job, it now seems to be the only thing sane in my life. But, there has to be something more we can do, not just for ourselves that are going thru this now, but for future daughter and son caregivers of the future. Any ideas? Or are we so tired and frustrated that we can't even think of solutions to save us from these nightmares.
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OMG! I see myself in all of you! The only thing I am not dealing with the hatefulness, just little spiteful things or completely being ignored. Does anyone think we are being punished for something? I always wonder if it is my feelings of anger or because I discuss the situation with others as I am doing now. I spoke with a friend at the grocery store and she is experiencing the same and I am. We were discussing how they can be on death's door and "Bing" the next day is back to normal! I am confused, the doctor is confused! I do have a wonderful husband who has been through it all with me. I went through his Mom's illness, which was cancer for about three years with him, but this is an entirely different situation. She comes hunting for me if I disappear out of sight and if I go outside, heaven help us all. I explained to her that I could not get her in and out of the house by myself and she looked at me so pitiful, but also like, "you are lying". I have already pulled this and that from lugging and tugging and trying to get her up from falls and I cannot do it anymore. I am an only child and she wants no one coming in to help her, but me. If I leave, she aggreavates my husband with 20 questions! I am totally, mentally and physically exhausted and no matter what I think, I end up feeling guilty. Thanks for listening and it sounds like we all are in the same boat without a paddle. My prayers and thoughts are with each and every one of you. I do believe it is the hardest job that can ever be done. And, we're not as young as we used to be.
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Similarities, sadness, sentimentalities, and frustrations. At wit's end? No, never, but I truly sympathize. All your stories are hard. My often yelling, energy-charged 70 year old Mom (best physical shape of her life) eat's well (screams also while cleaning her incontinence). My older brother and I are serving her homemade coconut-oil (organic) chocolates daily, and amazingly (slow but steady so far) we've seen a gradual calming, alongside a returned lucidity (short lived but awesome). No cure is definite, but it appears her love for chocolate continues on regardless. Much love all.
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Drummer our lives are mirror images. My mom is 90 and totally impossible to deal with. I have no one to help. She won't even allow home health. She is demanding and controlling and went to bed 5 years ago and stayed. Whatever you do keep your mom out of the bed, of course if she is able to be mobile. You have to demand that she follows your rules and gives you privacy or you will end up stuck like me and the guilt that you stay angry will eat you up.

Take care of your health. It will go down and if she has narcissistic disorder like my mom she won't care. Put your foot down about the way she treats your friends because even if they love you they will eventually distance themselves. If you have depression maybe meds will help. They didn't help me because the doctor said that when you are stuck in a situation that there is no hope for change the meds won't help. Take control now. Don't let her control anything in your life. Thank God for your husband. I have no one. My daughter helps me with things but works and has a family so I don't even tell her how bad things get.
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When you are living this, it feels so damn lonely and isolating - like you are in a vacuum with this person who is typically more like a victim of "invasion of the brain snatchers". It is a world of crazy unlike any other, mental torture beyond comprehension to those who have not yet ventured down this path or been exposed to it by knowing someone else who has.

And it never ceases to amaze me to read all these posts and realize there are so many people going through the same thing - a whole subculture of dementia caregiving.

Which does give a tiny bit of comfort for the few minutes a person in this position can find/spare to read any of them, particularly when you find others enduring worse scenarios than your own (and you usually can).

There is merit in being able to feel some amount of unity/community, and even some compassion - and ultimately, a whole bunch of folks to add to your prayer list. Then it's back to your own reality, where prayer is your primary survival tool.

Sending out mental hugs and prayers for all of you now!
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I can sure understand your frustration, anger, guilt, and the myriad of other assorted caregiver's emotions. Perhaps it is time for a vacation to sort out what you need to do for your wellbeing for the future. If you can't get family to take over totally for two weeks, get her into respite care for two weeks and go away with your husband and sit on a beach, swim, get some sun and give this whole situation a good think. When you are away it may be easier to give yourself a new perspective. I am so tired out from all I do for my mother that having a job is beyond me, but maybe it is your job that is keeping you sane, it does give you a break. So get away to get a breather to make a plan for you and your husband. Now is the time for sure for a change.
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This is my situation except that the person I am taking care of is my husband which I find particularly hard because that means I don't have a spouse to turn to when things become hard. You should speak to an attorney who specializes in elder law for assistance in getting Medicaid for your mother and look into residential placement for your mother because caregivers often predecease the person they are caring due to the stress involved and you don't want to be one of those statistics.
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Wow how I can relate to a lot of the above comments. I really thought I was alone with how I have been feeling inside before I found this website. It still is a battle in my mind and heart. My mom has just in the last month been diagnosed with dementia and is in a nursing home. Originally it was for other ailments but when I was told she needed professional care 24/7 it was something my family can not afford. I am in the process of applying for Medicaid for her. 2 of my 3 siblings are on board with what is going on the other one is totally against it saying that "mom is confused and she needs to be in an enviroment that she knows ......and in another text saying that she (my sibling) is the only one out of her siblings that can accept change" Hello? Who is in denial here? Hang in there all of us this is tough and my wife has been a saint but I know she clearly gets frustrated. God bless.
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Cyndy - just a thought - look at places that have a continuum of care. Meaning, if she at the assisted living level now and gets worse, she can stay and go into long term care without having to move her. Spend all her money, not yours and then apply for Medicaid for her. That's what the system is there for. But you need to get her name on these lists now, even if you don't do it right away.
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Drummer, I am in the same situation as you. Over 7 months ago, I had to break my apartment lease because my mom had broken her hip and developed a series of health issues afterwards. She was in a nursing rehab facility for those 7 months. She finally came home in late January. I am so happy that she is finally out of her health care facility but things have been very stressful at home since then. My mom who is 75 yrs old, has been very nitpicky about little things that I do around the house. She doesn't like they way I cook. She criticizes how I make the pasta sauce. She doesn't like that my personal pots and pans, bowls and plates are taking up too much cabinet space. My father and my mom fights constantly since she came home. My father he is another story himself. Since Mom came home, he has been very jealous because I pay more attention to my mom because she needs my help more than he does. He gets into these temper tantrums. He now has lympdema in both of his legs. He cannot drive. He gets upset if I am not home from work immediately. Since I moved back home, I have given up on my social life. I don't see my friends anymore because I am too busy caring for my mom, dad and try to keep the house in order. Sometimes I forget to feed my poor cat! Some of my friends say to me that I am not the same person since my mom was in nursing care. Many say that I am depressed and I don't know it. I will be sad when my temp job will end in a few weeks because I have to deal with mom, and dad's health issues. At least my brother gives me a respite while I am at work by taking my mom to her physical therapy and surgeon appointments. I try to keep my self together physicially by dressing to the nines, putting make up on when i am at work. However that still doesn't mask the pain that I have been going through. Many people at work do not realize what I am going through. I usually keep to myself and be a worker bee. My dad now yells at his best friend who has been taking him to his appointments while I am at work. His friend got pissed off at him because Dad yelled at him. His friend told Dad that I should talk to his physical therapist about his leg. Dad told him angrily that I have too much to at work and at home. Now Dad and his BFF is not on speaking terms. I am at wits end! I wish I had money to go on a vacation just for a wkend or a week. Hang in there Drummer!
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Wow, sister I am right there with you! Drummer, I've been at this for 3 years. My mom moved in after an operation for pancreatic cancer. Thankfully she is cancer free, but now, healthy as a horse, she will probably outlive me!! I want my life back, but the guilt is overwhelming. I am starting to look at assisted/independent living, but it is soooooooooo expensive. (plus mother would then hate me forever...sad because we used to have such a great relationship). My husband is a saint too, but he is not happy now. We don't have that much money, but mom feels we are obligated to pay for her because SHe thinks we are rich. We have 2 kids, one just starting out and the other just graduating college. I don't know what to do and feel I am in a no win situation. If mom went into assisted living her money would totally run out after about 3 years. then what? sigh.Sad.
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Drummer and Greekgal - geez, so sorry for your situations. I moved my parents to live closer to me so I could care for them. It has turned my life upside down. Nasty, demented, non longer walking Dad now in a NH and asks every day, "when am I going home?" Guilt, guilt, guilt.....My mother still lives down the road, independently but not really. I do everything for her, errands,groceries, church,hair,doctors, CVS, visits to see Dad, you name it. I'm exhausted, gained weight, works full time, marriage deteriorating etc..just like you. My siblings nowhere to be found. They suck. What I don't have is one of them under foot as you both do. It was very, very hard to commit Dad to long term care at the NH but I had no choice. He was a threat to my mother and himself given his falling all the time. Also incontinent and nasty and threatening to Mom.

My advice to both of you to seriously think about a home for your Mom. I know the guilt. I also know that in some way, my Dad going into the NH has lightened my load just a bit. Its' very sad. I love my Dad. But nowhere does it say we have to give up all hope of happiness, give up our own lives so that they can live and continue to ruin our lives. That is a choice that you've decided --you've decided to give up your own lives unless you change your thinking now.

My Dad's mom went into a home and he went over and fed her just like I'm doing for him. My Mom - her sister took care of both my grandparents for many, many years. My mother did not care for her parents and lead a rather social life. If my mother gets to a point where she cannot live alone, she will not come live with me. Not because I don't love her, I do. But I love me too and I love my husband and my kids. It would ruin my marriage and I've decided after four years of this to put myself first.

luv you both

-SS
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Your life sounds like mine... only I have been going through this almost 3 years instead of 5... the only thing I can advise you to do which I have been trying to do with some varying success is to start defining barriers... it's time to say "no" to your mother and it's time to use her money to get caregivers for her, possibly even nursing home placement... For me, my daughter will be graduating in mid-May and we were planning a weekend trip for the graduation. I have since pulled the plug and she is staying home... I am not physically capable of pushing a wheelchair of an overweight woman across a football field... nor do I want to .... I am going and enjoying my daughter's graduation and will joyeously enjoy my weekend away. You have to start defining what you can and cannot do because they can no longer see it rationally. God Bless you
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We have very similar lives, except that you do have a caring husband to help you, both mentally and emotionally. Mine died five years ago and now I live with my 86 yr old bitchy mother. ( I should mention we use to be great friends) Is it dementia that makes them uncaring and spiteful? Someone please tell me this is the reason for her once caring ways to the demanding, narcisstic person she has become. She demands to be the center of attention, tries to manipulate me(doesn't work) but she is use to doing it to other family members to get her way. I never imagined a life devoted to such a hateful person. I am at my wits end.
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drummer, it sounds like you are way past "overload" and I believe you are depressed. I totally understand. You definitely need to start thinking about your own physical and mental health. Between your job and your mom, you're beat down. A person can only take so much.
Why don't you do yourself a big favor and say "today I start taking care of me". Ask your doctor to help you get on track. Maybe antidepressants? Counseling if you can afford it? Don't look at it as a failing but as feeling you are worth it because you are. Don't let your mom suck all the life out of you or steal your joy. Don't let her have that kind of control. Once you feel better, I think you'll see things in a whole new perspective. Your mom may not change, she may always try to control you, butt in when she shouldn't, be unlikeable. But you can find new ways to cope with her. You are a good person to take care of her. You are capable of working at a stressful job. You have a family. Mom just plays a part in this scenario. You have the lead part. I wish you the best. I care and want to know how things go for you.
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