I became my mother's caregiver after my father passed away. I lived with her for about six weeks sleeping on her couch and going to work every day. My husband worked nights so he could stay with her during the day. My daughter slept with me at mom's apartment and my son stayed at home alone. I was not sleeping and couldn't function.

We moved to an accessible house and provided her with a first floor master suite. She was very ill when she moved in and I was caring for her daily needs and working full time in a demanding career. We thought she might live a few months to a year based on her health. My sister (out of state) insisted that my mother find a caregiver. She did although she was unhappy paying out of pocket for this. She had a caregiver 24 hours a day five days a week for about three months.

Fast forward five years and my mother still lives with me. She has broken bones and been in and out of the rehab center but never in an nursing home. She'll say she is very independent but she wins through intimidation. Did I mention my demanding job? 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...My mom indicated that I have a stressful life and I should try to make it better by lessening my stress although she told me she is not part of that stress.

I've gained about fifty pounds, lost interest in my life. I have few interests and my mother wants to follow me around everywhere I go. She has no friends but is happy to say inappropriate things to my friends and then deny them. She does not drive per medical orders but is mad at me about that. She wants me to transport her places but never asks me to take her. She tells me what I will do and when I'll do it. Did I mention that I am an adult?

Sometimes my mother sees herself as a member of the family and sometimes she is a renter (yes she does contribute to our monthly expenses). When I want to take a family vacation she insists on coming because at that time she is family. When she needs something done, I'm her paid servant. I have an entire year of vacation in my bank at work because I go nowhere. When I do take a day off, I act like I'm going to work or she'll hang on me. I go out for breakfast, go to Target, go to a movie and then come home around the normal time. I don't even tell her I have the day off.

I don't want to be with her. I don't want to talk with her. I want some privacy. If I wasn't married to a saint, I couldn't imagine a husband staying. My children do not want to be around her.

I have major guilt about all of this. I have one child in college and one leaving in a few months. She has thrown money at both of them. She'll tell me she is helping them with expenses I think because she feels guilty living with me. I tell her that if she wants to give or lend them money that is between them and i don't want to be a part of it.

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I smiled when I saw how many people jumped on your question. This is simply a wonderful forum!

You have no reason to feel guilty. I'd suggest that you try to find a way out of this situation. You are fortunate that your husband is a "saint," but your whole family has been affected by this for years. You have a right to some privacy again.

Please look into assisted living or a nursing home for your mother. You'll pay a price going through the process but you'll see light at the end of the tunnel.
It's very true that you will still be a caregiver, even with your mother in senior care. But you will have some opportunity for some life of your own.

Take care of yourself before your own health is shot.
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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

Helpful Answer (17)

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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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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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!
Helpful Answer (8)

My dad lived with me for 5 years prior to going into a NH. I remember that lack of privacy. And my dad and I got along well. He's a very nice and kind man and very easy going. Out of the two of us, I'm probably the more difficult one! But it was hard. So hard. The only thing I did was care for my dad so when friends would call I had nothing to talk about, so I just stopped talking to people. I had nothing to offer in a conversation. I felt obligated to bring my dad with me wherever I went because his Dr. said he shouldn't be driving anymore. I was the one who brought that subject up so I felt like I owed my dad to take him with me everywhere. Not that I went anywhere exciting. I went to Walmart. Or to the grocery. But he'd come with me and I'd have to get a wheelchair or find a motor cart. It was not what I envisioned for my life. I felt very isolated and depressed, as did my dad. It worked for several years but that last year when he began to decline I don't know who was more unhappy, him or me.

Then a set of circumstances and health crises landed him in a NH and the social worker approached me about having him stay there and not just for therapy. My family supported that decision so that I could have my life back and my dad begrudgingly agreed. The guilt tore me up. I still wake up in the middle of the night thinking I hear him calling for me. And him not living with me was not the clean break I expected. There was a lot of transition, a lot of upheaval. It was very stressful and where you gained 50 lbs I lost 20 lbs because my stomach twists into knots when I'm stressed. And the caregiving hasn't stopped. My dad wants a lot. He wants more visits. He wants me to quit my job so I can spend everyday with him (he has dementia now). He calls me and tells me that the other residents are being abused (I know they're not). He calls me at 11pm to tell me he saw one of the other residents with an Uzi. He's not afraid. I asked him if he was. He's not, he feels like he has a lot of power because he's aware of all of these shenanigans going on. He hallucinates. I could go on.....

My life definately became better once my dad went into the NH and before my dad began going downhill he was fairly happy and had made friends and participated in activities. I'm not happy that my dad is in a NH but I am grateful that he's being taken care of by professionals now. I wonder if his descent into dementia would have occured had I kept him at home. I can't shake the guilt but I try to rationalize it and I can live with it. I'm productive again. Working in a job I enjoy. I'm proud of the life I've created after caring for my dad. I still have responsibilites to him. He still sees me as his caregiver and is only truly happy when I'm with him. Advocating for him is a lot of work but this I can split with my brother and we both do our share. I didn't automatically become HAPPY once I was on my own again. I had to work for it and that wasn't something I anticipated. I still get sad...depressed....when it comes to my dad and I think about him all day, everyday. He's the first thing I think of when I wake up and the last thing I think of before I go to sleep.

So my life after being a hands-on, everyday caregiver is not always rosy. Being a caregiver had a profound effect on my life that I imagine will stay with me. And while my dad is still with us I still feel that obligation everyday, I still feel responsible for him, and I still feel like a caregiver. Because I am. When I visit my dad I have 100 different little fires to put out while I'm there. My brother is able to talk to my dad about movies and tv shows, pleasant conversations. I get the crying, the depression, the hallucinations and the overall misery that my dad won't discuss with my brother. I talked to the social worker about it one time, about why my brother and I have totally different kinds of visits with our dad and she said it was because I'm the caregiver. I cared for him for 5 years and I'm still caring for him and always will until the day he dies.
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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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In a word...yes. I have pulled the day off trick on rare occasions too. I recall a birthday when I was given the day off after actually showing up for work. I did not go home or call. :) My days off are for her, in her opinion. I am working on getting my Mom into a daycare situation. she needs to socialize and have some other ficus to her micromanaging than ME.
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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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