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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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What is her mental status like? Has she been like this all her life? If not, when did it start?

If she couldn't live on her own in Florida, what makes you think that she could in Wisconsin? Waiting for a senior apartment to open up doesn't sound like a viable option in any case. If you are this overwhelmed after 4 days, how could you survive 18 months?

Soooo...

Maybe you are back to considering a nursing home, but at least this time it would be one close to you, so you can keep an eye on things, advocate for her, and brighten her life with visits.
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Monica: I know how upset you are. It is such a huge adjustment to have another person living in your home, especially someone who does not share your feelings about keeping things clean and undamaged. I am also having a little chuckle, by no means at your expense, but it reminds me in some ways of my parents.

When we moved my folks up here to live across the driveway from us into a sweet little new home that we had built for them (my brother was a major contributor to the house build), I bought them all new furniture, washer/dryer, fridge, sleep number bed, pull down murphy bed in second bdr., etc etc. My husband and I busted out butts putting up fencing and laying sod in the large yard so their 2 dogs would have grass and not be muddy when it rained. Everything was picture perfect for them when they arrived.

The next day my mom is throwing her pancakes (with syrup) to the dogs and they are landing on the new carpet. Pretty soon my dogs wanted to go to their place too, because pieces of pancakes or sandwiches flying through the air was a dream come true. My mom did this til the day she died. My dad would walk in the house with gasoline on his boots, spilled from filling up our riding mower which he loved to use, and the whole place would smell for hours. Their nice matching recliners had coffee spills and food stains. I did their house cleaning so I would have to take care of stains and sticky carpet spots. It use to aggravate me no end, but I didn't complain to them about it because that is how they had always lived and it needed to be their space and their home.

I use to cook their dinner every night and deliver it to their home. After my mom passed, we had dad come to eat dinner with us so he wouldn't be alone. In the winter when we would get snow, he would just track it in with him. Didn't wipe his feet and the big wedges in the bottom of his soles would hold all that snow. I would lay down towels all the way to the dining room so the hardwood floors would not be covered with melting snow. Eventually, we ate in the breakfast nook as it was closer to the back door and the shorter route didn't require as many towels. I always had a towel under his chair. No, he never got the hint. One thing he did notice was that he far preferred eating in the breakfast nook. I think he felt the dining room was a bit like putting on airs. Once I realized that, I actually felt embarrassed as it was never my intention present myself in that manner. So for the last four years, we have eaten in the breakfast nook. You could always tell which chair my dad sat in at the breakfast nook. It was the one that had dog drool on the floor next to it. He still would toss them food.

Towards the end, my mom had incontinent issues, but she wore depends and was faithful about taking care of those matters.

My dad had a stroke last July. He now lives under our roof and needs 24/7 care. The only thing he can still do for himself is lift a fork to his mouth. Probably the happiest moment in his day is eating in the breakfast nook and seeing our two dogs staring at him while he eats. It makes him feel loved and he still can manage to through food to them.

None of these things, and I've only mentioned a few, made me laugh at the time. I've heard other people on this thread talk about after your parents are gone you will be happy you did what you did for them. When I'm in the middle of feeling a bit resentful or ticked that I have been doing this parent care thing for close to 7 years, I must say those comments DON'T help me.

For some reason your post did help me and as I started typing, all those irritating things started to make me laugh and I remembered them with a real fondness. I want to thank you for that.

I can only imagine your horror right now and it's not even been a week. And I know what you are thinking. There's no way you are going to do this for 7 years. And that's ok. You don't have to do it if it's intolerable to you.

My suggestion would be that you give it more time. I would also suggest that you check into Medicaid for your mom. She may very well qualify. Call your local Social Services and get the scoop on requirements in your state. It sounds like she would have qualified in Florida since they were planning on putting her in a nursing home, so she would hopefully qualify in Wisconsin. Get the application process going. It takes time so get on it.

Medicaid could cover the cost of her assisted living or a nursing home if falling continues to be a problem. It can also help with in-home care. In Washington, where I live, Medicaid will cover up to 5 hours a day of in home care Monday thru Friday. That might be helpful to your mom's attitude and give you a break knowing that she has company and someone to help with showering and lunch, etc. And in home caregivers can also do light housekeeping to ease the mess your mom makes.

I am hoping that she wears depends due to her incontinence. If not, that needs to change. In the meantime, do the paper work as it will have to be done eventually. As appealing as it sounds, you can't just put your mom on a box car to the next town. You do have a responsibility to see that she is cared for somewhere, so the Medicaid application process is the place to start.

My heart goes out to you. Your mom is right, she is not going to change at age 81. Please, for your sanity and hers, don't following around behind your mom, fussing over every thing she does wrong. You can't change who she is. Hire a housekeeper for her area and let them deal with the particulars. Did I mention depends?

I also want to mention that it took me at least two months to get to a point where I could deal with my dad living in our home. For me, it's the confinement of not being able to leave the house. I do have a caregiver that comes in MWF for 3 hours and I did go on an anti-depressant. It's been 8 months now and I am starting the medicaid application with the idea that we may place my dad in a NH. It is a difficult decision to make and there is no perfect answer. It's strictly a personal decision that no one else should judge.

Monica, you are not a bad daughter. You love your mom and you want to take care of her. You can do that in different ways, but you can't get her to be someone else.

Don't quit your job. Get some help and find out what the options are. Give you mom a hug and let her know you love her. Try to ease the tension. There is nothing that can't be replaced or repaired. I know it's hard but you need to lighten up a bit and take a breath. It won't last forever.

Love and Hugs to you. Please continue to post and let us know how you are doing. Cattails.
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Monica: You must have had some strong resentments about your mom to have left home at 18 and only started visiting her in the past 4 years. I'm guessing you may have talked to her by phone over the years, but maybe not.

It's ok, Monica. I so appreciate your honestly and it really touches my heart. More than you know. So you left home, went out into the world, didn't look back and made a life for yourself.

So Michelle was the first born and she was a Down Syndrome baby. Then you came along. Your mom must have been close to 38 years old when Michelle was born and then older when you were born. Where was dad in all of this. If your mom wasn't working after Michelle was born, how did you live financially? Was your dad in the picture?

I'm not sure what DCF is, some kind of department of child welfare I would guess, but it must have been devastating for your mom when they came and took Michelle away. Do you know where she is now or how she is doing?

I don't know what it is about some people. They can relate to animals better than people and in such a way that they don't care if their house is trashed. It's just not their priority. The affection they get from their pets fills their lives and everything else takes a back seat. I don't know if your mom was a good mother to Michelle. She may have just loved her because she could relate to her differently, like she did to her pets. I don't mean that in a negative way, just looking at the dependency issue and making the connection.

My parents loved animals. They would take in every dog within 10 miles of their home. If they saw a stray, they would rescue it. If a neighbor mistreated their dog, my parents would talk them in to giving it to them. One time they were leaving a restaurant after breakfast and saw a poor dog tied into the back of a truck. The dog was is bad shape. It couldn't move because of all the junk that was in the back of the truck. It had defecated where it was standing and could not move out of the mess. My dad untied the dog, took it out of the truck and gave it some water. It peed and peed and drank and drank. They took the dog home with them and named him Lucky.

My parents lived on some acreage and their mobile home was always full of dogs going in and out. I lived a few hours from them and would visit from time to time. I cared about them, but can relate to not being able to find a place to sit due to all the animals and the mess they made. It's hard to sit on a couch that a dog who has recently been skunked has been sleeping on. You just can't help but take it into your car and home with you.

I'm the oldest child of four and left home when I was 18. Like you, I went out into the world and made my way. My siblings have made their way too. My sister is the one who has more animals than she can truly care for and she struggles to make ends meet. My brothers have done ok.

When we retired and moved to Washington state, we built a small house across the driveway for my parents who could no longer live on their own. I think I told you all about this, but to have had them living in our home would have been impossible. We have 2 dogs and we love the nature all around us, the birds, the elk and everything that comes our way. Nevertheless, I like my home too and it's not the way my parents lived. My dad could never understand why I would pull weeds or be vacuuming or keeping things up. It just didn't mean that much to him. My mom loved it, because she was handicapped and had limited use of her arms and finally someone was doing all the things she wanted done. Still, as I mentioned, she would throw those pancakes, dripping with syrup on the new carpet to her two remaining dogs and my dogs thought that was pretty cool. It's just how they lived.

I remember one time going to visit my parents. They were not home when we arrived so we got through all the dogs and went inside. My dad had built on a big room to the mobile home. The ceiling was leaking and plaster and drywall falling down. My husband asked me, "Do you feel embarrassed for me to be seeing this with you?" I don't think I felt embarrassed. I just felt sad. My dad had retired from his job and was a handy man for crying out loud. How could he live in such a hovel when he had the ability to fix the problems? That year they had a wedding anniversary and my brother and I gave them enough money to re-roof their home. My mom hired it out and the job got done.

All I can say, Monica, is that I can relate to some of the things you deal with. It's just who your mom is and how she has always lived. She has probably lived a life of deprivation and doesn't know any other way. She has had her losses and has limits as to what she can relate to. What you try to explain to her is like someone talking Chinese to someone who speaks French. It's just a totally different culture and language. If she could do better, she would.

My heart goes out to you, but I give you high marks for trying to reach your mom and guide her in her last years. You may not be successful in having her see things your way, but compassion is a language in itself. I don't suppose there is any chance that you could get her an altered cat that is litter box trained. Giving her something to love might mean the world to her. I know your are thinking I am nuts and that is out of the question, but it might just give her a focus and comfort that you can't provide. See how things go for a few months and then rule it out.

Don't stop talking to me. You don't have to do the pet cat. Love 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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Hi Cattails....She wasn't this way when I was growing up. I did do all the housework....it was left for me when I came home from school every day. I would brush and or wash all three dogs, dust, vaccuum, make all three beds, set the table for dinner, clear it, do the dishes, and then do my homework and go to bed. She did not do laundry but once every couple of months because she did not want the cess pool to overflow. I would wash my clothes out in the sink and hang them on the clothes line even in winter. It really sucked washing jeans. She never worked after my sister was born because she was down syndrome...then I was born. When I moved away at 18 yrs old, then the housework was up to her...how well she did it, I don't know. I just started visiting her in florida 4yrs ago, but she claims she stopped living when dcf took my downsyndrome sister away from her care. A neighbor called the police because she felt a violation was occurring, and dcf took my sister from her. My sister was her life...her reason to cook, to clean, to go anywhere...etc. So for the last 4 yrs, she didn't do much of anything....keeping in mind though that my mom was 77 when they took Michelle, and the 7 cats she had already had done most of the damage to her home by being in every nook and cranny there was and peeing, pooping, and puking anywhere they pleased. At her age I think it was not a good idea to be taking care of a 39 yr old downsyndrome and to have a home that was being coated in urine constantly. When my husband and I started visiting, the smell was bad, there was cat hair in the dish drainer, she kept the sponge in dirty reused soapy water to wash out her dishes, and the cats were all over the kitchen table. There was no way we were eating there. She had one very sick cat...don't know how it was still alive all the times we visited, but it had blood in its urine, would pick any spot to pee in, and she would just put paper down on the spot and let it....even if it was in the entrance way, so you had to watch where you stepped. That same cat would sit and sleep on the arm rest of the couch, and then I would watch my mom eat something, and lay it down on that same dirty arm rest and pick it up and continue to eat it. I don't think she has the capability to see all the mess....she tried to clean she said, and thought she was doing just fine at it by her comments to me, but it was definetly tunnel vision. She had a foreman grill and when we were there this last time, it was caked with at least a half inch of grease and old meat, and all she did was wipe a few of the channels out with paper toweling, and called that clean. I pointed it out to her, and she said so...when did you become so clean and sanitary...it was fine for her, but you or I would have cringed and thrown out anything made on that grill.

Any how, she recently has been diagnosed with PAD, and she has a pacemaker because she has congestive heart failure. She has osteoarthritis, osteoperosis, emphazema, lesions on her brain from when she used to get beat by her ex years ago, which the dr says will get worse in time. She has balance issues because of her high blood pressure, and constant pain down her leg probably from her spine.

Things have seemed better the last couple of days, but as I was typing this to you, she spilled her juice that my husband gave her all over the floor and her feet, and was trying to clean it up with napkins, instead of telling me so I could do it properly. I go down there and ask her if she spilled it on herself and she said no, but it was on her feet, so I said i'd finish cleaning. Then she gets mad atme ans says she could do it herself, and she is capable , and I said I needed to clean it up, because it needs to be dried correctly....as she is walking through it with her bare feet tracking it further....but she wants to go upstairs and be free to do what she wants in my home when I'm not home, and I try to explain to her she can't for her safety, and also because of accidents like that....but she thinks she's still 40 and can still do it herself....but she can't. So she went to bed mad at me tonight because I am making her a prisoner, and when I ask her what she wants to do, she has no answer...then tells me if I love her, I should know what she wants to do. I try to tell her the truth about her furniture we had to leave behind, but I think she blames us for not taking it. I don't think she will be happy here, because no matter how much I do for her, it comes down to if she can't do what she wants in my home, I don't love her and she's a prisoner. I can't make her understand that what she thinks she can still do....she really cant...at least not safely. Her mind is pretty good, but yet there are things you tell her, and she acts like it's the first time she's hearing it.

I understand that she has lost everything, but that is not my fault, although I think that is who she is choosing to blame....not herself that could have stopped the over run of cats that ruined everything she had. When I tell her all the bad habits she has, she gets mad and says she might as well die....but that is her answer all the time. She does need the assistance, but thinks I am bossing her around. When I leave her be....she spills, or falls off the toilet...but forgets about that.

I just don't know....how do you make someone like that happy. She's always going to play the same pity card....no matter how great the day was, it always goes back to she's a prisoner and why can't she roam freely in my house.
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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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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.
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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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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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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!
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