What can you do if you realize that taking care of your mom is just not going to work out after she has moved in with you?


My mom was living in Florida until just the first of this month. Social workers were involved and wanted to put her in a nursing home in Florida because her ability to take care of herself and clean her home was non existing. She was falling all the time, and her home was so horribly dirty, in my opinion it should have been condemned. Anyways, I am her only option to take her in, or it would have been a nursing home, which she refused to go. I didnt want her to live with me because my home is a tri-level and I still need to work, and I don't want her to fall when I am not there. I knew that taking on this task would not be easy, but I couldn't just leave her high and dry in Florida, because she is my mom.

Anyways, to make a long story short, she is now living with me in Wisconsin, and we've done the best to set up the downstairs for her so it is safe. She has already been mouthy and stubborn and expects everything right away, and has yelled at me for leaving her home one night and not coming home for 6 hrs which my husband gave her the option to come along, but she didn't want to. We were out looking for a bed and couch for her and bought them with no thanks. She came to my home with a 6x12 trailer that was only partially full, because 90% had to be left behind because it was so dirty and smelled like cat pee. She is messy and has no respect for our home and it has only been 4 days that she has been here. She has thrown her walker down our steps and it smashed on the hardwood floors....which my husband did not appreciate. There are other things she has done as well, and I don't really want her here anymore. I know that sounds horrible, but the original plan was for me to stay home and take care of her and quit my job. She is a handful. I feel like I need to walk behind her constantly and catch everything she drops...food, drink, pills....she pulls poop out her butt, then touches other things in the bathroom....I cant handle all that. I have a big heart and love helping people, but I feel like I am going to be trapped and my life is being changed to drastically too quickly. She is incontinent, and everywhere she sits needs to be protected....I really want her to move into the senior apts up the road, but unfortunately there is an 18 mth waiting list. What can I do....am I trapped??? She is on SSI, so not much money, and no assets. I want my home back and my life. What do you do if you realize you've taken on more than you can handle??? Please help with any suggestions. I love her, but my sanity is at stake. I am a clean person and she is not. She says she is 81 and too old to change.

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Monica, you're doing good, Lady! Keep it up! The groundwork you are so laboriously laying will serve your mother well as long as she stays with you and also later if you decide she needs out-of-home placement.

Your mother means all of her attacks personally. I don't think we can dismiss them as out of her control. If you can manage not to take them personally, and you seem to be on the path to acheiving that, you will have won a great victory.

Keep in mind that you have choices. Having her in your home is a decision you can make, and you can change that decision at any point. I think that helps to know. Mother may feel like a prisoner (and in a way she truly is imprisoned by her impairments), but you are not a prisoner. You have choices.

Good luck!
Helpful Answer (2)

Hi Monica: Congratulations on making all the calls. That is always a big job; very time consuming and tedious. Just to make sure I understand, your mom is now on Medicaid in your state? You didn't have to do any paperwork or you had already submitting the paperwork? Will this qualify her for in home help without charge? In the state Washington there is a COPES program that will provide 5 hours of in home care per day for Medicaid patients.

Sorry to hear that your mom is so angry. I'm sure the rent and utilities came as a shock to her. If she pays you rent, you may have to claim that on your income tax.

I admire your fortitude and wish your mom could be more appreciative of your efforts. How are things going in general? Any better?

Stay in touch. Sending you lots of hugs and encouragement. Cattails
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Thank you everybody again for taking the time to share your thoughts and or experiences.

I am continuing on and trying to give her the best care I can, even though we have had two more arguements since I last posted.

The two arguements were pretty similar....except todays was ridiculous. I was on the phone again for at least 4 1/2 hrs getting her state medicaid and ssi figured out which actually took quite a few different calls to a few different people. I found out that she is in the system now, and will be recieving her money starting in august. She doesn't understand how long these things take, so she just expects it to be done already. I tried to explain to her it takes a couple of weeks. Anyhow, I then had to call social security and make sure she was good to go there, and we found out how much she has to pay us for her rent and utilities or else if she doesn't pay us her share, then they consider her receiving "money in kind" and she would lose quite a bit of money. I told her how much, and she couldn't believe it. So I said I had a few more calls to make, and I would figure this out so I understood it better myself...get more info. Well, lets say her patience level is somewhere around...oh I don't know....ZERO! She started yelling for me from downstairs....MONICA....WHAT DID YOU FIND OUT.....IT CAN'T POSSIBLY TAKE THIS LONG. I NEED TO KNOW NOW.....so I calmly said to her that I still had calls to make, and when I knew more, then she would. O.k.....to make a long story short, she continued yelling for me at intervals even though I was in the midlle of talking to people to get this info for her...and might i add she is very loud....so finally, I got into her line of sight from upstairs and pointed to the fact i was still on the phone, and I said I was still talking, and she said"SO...i DON'T CARE....I WANT TO KNOW NOW". So I ignored her, and finished finally with all my calls. I had made calls to get her extra money if she qualifies for the program, which would be a GOOD thing for her. I went downstairs, and all I could hear is"Come on Monica....it doesn't take that long....blah ....blah...blah" So I said to her" you need to respect the fact that when I am on the phone that you need to wait untill I am done...I can't hear or talk to both of you at the same time....." then she basically said that I didn't still need to be on the phone, but I should be giving her her answer when she wants it because it involves her, so she should know....blah blah blah. And then she was having a fit about paying us the rent, because she is used to not paying anything because of her reverse mortgage she had in Florida. Then she said it wasn't fair that she had to pay so much to be a prisoner and how would I like it....etc. No matter what i said, she had an answer even if it didn't make sense...especially how it's always my way, and I know it all, and I am selfish, and I planned all this before I went to get her to get even with her, and she just knew I was going to be this way, and she cant believe how much I've changed, I'm not her daughter, etc...so after arguing I told her she is rude, disrespectful, and nuts...she pushed me to my limit. She doesn't care about anything but herself and how it affects her and everyone should just be jumping off there chairs to assist her or answer her, or what ever the situation is.

The thing is....what she said didn't hurt me....I walked away annoyed with her selfishness and stupidity....but even though I have done nothing wrong to her....everything I have done has been to help her, it will never make her change her mind about me....she keeps bringing up that i want to get even with her, so she must be silently hating me???? I will never do good by her I guess, especially when she does't get her way! So now my husband can deal with her!!!!!
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Wisdom, I think you have given a good suggestion for Monica to spend some quality time alone with her mother, and to ask her how tough was for her taking care of her disabled sibling, and to empathize with her. That may be the beginning of some healing, and be a very good thing for both of them.

I'd point out that these conversations could occur whether mother remains in Monica's home or lives in a care facility. In fact, I think they are more likely to be productive when Monica is not cleaning up her mother's poop messes.

I'd also suggest that understanding the basis of abuse and being empathetic about its origins does not obligate us to continue to accept abuse. Monica is entitled to make decisions in her own best interest, no matter how understanding of her mother's life she may become.

Monica has already demonstrated that she is not going to "get rid of" her mother. But there are multiple ways to care for a parent. Having her live in your home is only one way ... and it isn't always the best way.
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Your father essentially abandoned you. Definitely Not Your Fault.

You mother was physically and emotionally abusive. Also Not Your Fault. (That your Down Syndrome sister couldn't learn to talk was your fault because you didn't spend enough time with her???!!! OMG. Is this the kind of crap you had to endure since childhood?)

You got out of that toxic situation as soon as you could and took responsibility for your own life. Good for you!

Fast forward a few decades. Mother is unable to care for herself hundreds of miles from you. (Not your fault.) And you decided, "I couldn't just leave her high and dry in Florida, because she is my mom." OK, I get that. She is your mom -- or at least your mother (she doesn't sound like much of mom to me) and you feel some responsibility and some compassion. Again, good for you.

But here is the part I don't get. You say "she does NOT want to go to a nursing home, which she has been clear about." The social workers in Florida said she could not live independently. Your own experiences to date show that she can not live independently. So how on earth do you come to the conclusion that your only options are to wait 18 months for an opening in independent living (which she cannot handle in any case) or to live with you? How did the mere fact that Mother doesn't want to be in a Nursing Home completely rule that option off the table? If you took a poll in an NH, how many residents do you think asked, please can I go to a nursing home? (Some did -- I personally know one, but that is not typical.) People go to nursing homes because other people decided it is best for them, because there are no other options, or of the options available it is the least stressful for all concerned. Why can't these reasons apply to your mother?

Your mother did NOT want your sister to be removed from her care. It happened anyway, didn't it? And presumably for good reasons. What your mother wants is not the driving factor of the universe. That is the a truth I think you need to embrace.

Being abandoned was not your fault.
Being abused in childhood was not your fault.
Being abused in adulthood -- whoa, you have some control over that! If you continue to accept it, it really isn't all Mother's fault, is it?

I am not saying that you shouldn't give this a few more weeks. I am not saying that it couldn't possibly work out. I am saying that you have CHOICES here. You are NOT trapped. Independent living is NOT the only other alternative. If your mother continues to live with you, you need to acknowledge that it is because you DECIDED to allow that.

Here is the advice of a well-respected therapist, Pauline Boss, from her book "Loving Someone Who Has Dementia":

"Taking care of someone who years before was abusive or neglectful of you is beyond what is epxected of you. Caring for a family member who was or is physically or psychologically abusive is dangerous. Feeling as if you want to retaliate is also dangerous. These are justifiable reasons for NOT being a caregiver. Talk with someone about your options. Other people can do the hands-on work. .. talk with the county social worker to find out about alternatives. Each case is different, but with most, I encourage some kind of continued management -- often through a social worker -- to make sure that the caregiving team or the nusring home professionals are treating your family member well. This may be the best you can do given your history together. Such minimal attention, however, eases ambivalence, anger, and guilt, and, overall, fosters your emotional growth."

(Hey, emotional growth is a good thing, right?)

My sincere best wishes to you as you make choices in the weeks and months ahead.
Helpful Answer (2)

Wisdom: I appreciate your empathy for a parent who has a down syndrome child and the weight they carry on their shoulders. And I would imagine you see me as one of the people who is advising Monica to "get rid of her mother."

I've taken care of my parents for some years now. My mom passed away in 2008 and my dad is now under our roof due to a stroke he suffered a year ago. I'm really not cold hearted, but I do support Monica's right to have a life and I don't feel she MUST keep her mom in her home. She can see to it that her mom is well cared for even if she is living in a nursing home.

Monica's mom has some dysfunction and mental issues. She wants to be independent so she refuses to wear depends even if she is incontinent. If someone feels that not wearing protective under clothing and soiling themselves and the furniture is a sign of independence, then they are not thinking clearly. Monica is the one cleaning up after her mom, because her mom is not interested in being clean and doesn't much care that she is making her daughter's home a mess.

I feel deeply for Monica's mom and all she has been through in her life, but my guess is that her mom had mental issues before she had a down syndrome child.

You will meet many caregivers on this site. We all do our best. Monica's mom would be in a nursing home in Florida right now if Monica had not intervened on her behalf. If she can find a way to make this work, she will. If it's too much for her, I'm not going to beat her up over it. Monica needs support and a chance to talk about her life and her struggles. She needs a place to vent and talk honestly about the current situation she finds herself in, namely taking care of a mother who was never there for her and with whom she has been estranged from for many years. She doesn't need to be shamed or handed a guilt trip.

Monica's mom did one thing right, she gave up a younger daughter to adoption. Ironically, that child is now taking care of the down syndrome child and Monica is trying to take care of her mom.

I know you mean well and maybe you have experienced raising a special needs child. Please also consider how heavy your comments can weigh on the heart of someone you don't know.
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Dear Monica, having a child with that is mental challenge will have a great impact on your life, unless you don't care about him/her and send it to an institution for the mental challenge, your mother's life after the birth of your sibling with down syndrome was a complete meltdown, some people can coupe better than others in this situation, but your mom looks like she didn't, by experience I can tell you that it is pretty hard dealing with something like this, as a parent your life stops right there, you will became depress, thinking what will happen to him/her if you are gone, and other thoughts like these will consume you for life, as a sibling you will continue moving forward in life, going to school, getting a job, leaving home, getting married, because the mental load of having a disable sibling is not that heavy, I see another people giving you advice to get rid of you mom, what about giving her love, why don't spend some quality time with her (just you and her), ask her how tough was for her taking care of your disabled sibling, empathize with her, and just remember that we are going to be at the same position when we get to that age, so, let's try not to make the same mistakes that our parents did so our children will love us instead of despise us.
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Monica: I love cats, just love them. but I don't have one. I have 2 dogs and that's enough for me. I have had cats in the past and, as much as I love them, they do have a way of getting even if you make them angry. One cat with no reason to be angry is ok, but who knows what will piss them off. They have their own way of seeing the world so I do understand your feelings. No cats in your house. I hear you.

That's amazing how Michelle ended up living with your younger sister who was put up for adoption. Really, who would have ever thought that would come about. It sounds like Michelle is in a very good place and I guess I have to say that God does work in some very mysterious ways.

Back to your situation; You do what is best for you. This is a needed journey in your life. If it wasn't needed, you would not have taken it on. Find your way, do your best, but never feel like you have no choice. You didn't have a choice when you were a child, but you do now, so don't forget that.

There is no shame in acknowledging that you are not capable of doing certain things. If your mom's care is too much for you to handle, then don't be ashamed of that. I've come to understand that I can still love myself and not do everything perfectly for my parents. That is a huge change in the way I see and accept myself. If I can't keep my dad living under my roof until the day he dies, it just means I'm not able/willing to take that on. It's ok if I have limits and it's ok if they fall short of perfection.

I think sometimes that those of us who grew up alone feel that we have to prove that we are worthy. We find our way and do our best and somewhere under all that we do is a need to prove that we can do it right. Doing it right can be an unending quest. There are not enough lifetimes to do everything right. It's just not achievable. So for those of us who feel less than, because we can't be the answer to everyone else's problems, it can be a God send to just accept that we can't make the world right and we can't solve everyone's problems and we can't make it up to a parent who has never been able to see the truth, as painful as their past has been. It's ok to let go.

This may be more about how you see yourself than anything else. I know you have compassion for your mom and I totally understand that you w?ant her to have a safe place in her last years, but you don't have to do this to make yourself feel good about who you are. You are a good person. You don't have the same handicaps as your mom had and you don't have to carry that burden.

I am especially fond of you and I think of you as my friend. I'm happy to hear all of your thoughts and feelings and I will be here for you.

Love and Hugs, Cattails.
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OMG ! I think we are sisters,I have the same mom history as you do.When it is the end of the day ,it just comes down to she is board,doesn't know wha to do with herself even if she had all the answers and is stuck going over her life in her head. Sometimes when we are mad at ourselves we yell at the person who is kindest to us. If all you do is make her laugh once a day,you did good. Hang in there.
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Yes cattails....you are spot on! As I was reading your post it made me smile because you understand perfectly!

I did leave at 18 without looking back. After about 10 yrs of physical and verbal abuse, I knew I needed to leave if I was ever going to live my life happy. It devastated her when I did, because it was unknowingly the same day when either my dad left her or my brother....not sure which. It was always about Michelle. Her health, safety, love, etc...was given to her first. My childhood was horrible, but when I left, I left that all behind. I visited her maybe two yrs or so later, but she still played her head games with me and treated me like it was my fault michelle never learned to talk....I didn't spend the time with her...I realized then that I would never visit her again.

My dad left before I was born. That was a weird situation anyway. I believe he was either 13 or 16 yrs younger than my mom...so basically he was looking for a mother figure, and ended up marrying her because he was obsessed with her....I've seen some of the letters he wrote her. I think it failed because of his age, and she was too controlling( funny how she is complaining I am controlling her now) and my sister was downsyndrome and he could not handle that. So she was left raising me and Michelle all alone on welfare. She never worked once my sister was born. We went without for most things, because she saved money instead of spending it on clothes or newer things. But I understand the era she was born in, and I know of all her abuse all her life...I heard all the stories of what happened to her, and her bad choices as well. Her life sucked, but in turn, it made her the type of person she is, so my life growing up sucked....for lack of a better word. I would see my dad only once a yr....it was always a surprise visit, but he didn't want to put up with my mom anymore. Later on in life, about 10 yrs ago she found the lord, and apologized for the way she treated me, but in the same breath still blamed me for things....but I was only trying to grow up.....nothing more....but she thought I was being a horrible teenager.....couldn't handle me. I never did anything that was off the wall...but she blamed it on me for being a teenager. I just wished I did even a small fraction of what my friends got to do....at least I could say I was normal.

I started visiting her when she moved to florida after she made ammends with me, and it was better, but yrs had passed as well, so we were like strangers to a point. Then her health changed, and the michelle thing, and through that time she had aquired 7 cats to fill the loneliness....and then she lost her ability to drive because of all her car accidents, which of course none of them were her fault!

My sister Michelle is living with my other sister in Connecticut. She has taken in or cared for disabled people before. I think it was the hand of the lord, because it just seemed too perfect who she was sent to live with. I don't know my other sister too well, because she was given up for adoption when she was a baby, and recently found my mom.

As for the cat thing, I don't think I can do that....we have a dog, but we kennel him when I work because she wouldn't be able to let him outside to go potty. I really don't like cats....cant stand the hair or the urine smell or poop smell from the litter box. I wouldn't even have a dog that sheds in my home....just can't stand it....but I understand your suggestion....i just don't want a cat in my home. Somebody else's cat in their home can be cute, but not in my home. I am not a cat person....

Well, I must go get ready for the day....thanks again, and lots of love, Monica
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