New, looking for feedback

sfieldsforeverMay 19, 2009

So glad I found this forum, I've been reading the other posts and find it very helpful.

I am not a full time caregiver but my mother has various health issues. She is legally blind from macular degeneration, had pancreas and lung cancer two years ago, emphysema for 20 years. Currently she has lung issues and they aren't sure whether it's cancer or disease; she recently spent a month in the hospital because her pleural cavity was filled with fluid. She's been hospitalized every 2-3 months for one problem or another, pneumonia, fluid, etc. Currently she gets short of breath easily and is very nauseous. She is able to function though, for the most part. She lives alone and is able to prepare simple meals and do most chores. She doesn't really do anything else, other than listen to news radio and watch a few TV shows. I am concerned about her living alone, pretty far from everyone. I am an only child, but my uncle also helps her out a great deal; he is about 10 miles from her, I am 20 or so.

I'd like opinions on how far you think children have to go to help their parents? My mother refuses to move from her home. When she was still working, she told me she would move near me after retiring. Now she swears she never said that. My husband and I have come up with several ideas for her to live closer, and each one has been angrily rejected. She lives in a borderline bad area in the inner city - a fair amount of crime, reduced city services, etc - and doesn't really like her neighbors (when she was in the hospital, she worried about people knowing she was not home, and would not let me ask any neighbor to feed her cat, it could only be me or my uncle). She does not have any involvement in the community, in fact, won't even shop in the area. All her shopping and doctor appointments are closer to my uncle. I've mentioned before that it would be easier for him - and for me too - if she lived closer to him. No dice - she "loves her house."

I get guilt trips pretty regularly about "leaving her" (she thinks I should have stayed in the area, or should move back now) and about not coming often enough. I live 20 miles away, not very far, but it's a long scary ride and I have a pretty busy schedule - 2 small children and various part time jobs (I freelance from home.) At one point I actually considered renting an apartment near her and staying there part time through the summer, but I don't know now. It would be so disruptive to my children and my own home. I've gotten various feedback in real life, from those who think I should move in with her immediately to those who say I have to force the issue of her moving to assisted living or a closer apartment. At this point I am just thinking that I will visit fairly often over the summer, and hopefully that will be enough.

Which brings up my next question. And this is surely going to sound horrible...but if you have a parent that you are not all that close to, and who is "difficult" how do you make yourself WANT to care for them? I love my mother, but most of the time I can't stand to be around her. She was never physically abusive or anything, but we just never seemed to connect - I think it is because we are a lot different and I am disappointing to her - not girly enough, probably, and we don't seem to like the same things (shopping, nic nacs, purses.) She has always been very controlling and critical and it's much worse now, I guess because she isn't feeling well and seems to be getting a bit of dementia. Anything I do for her is not enough. I bring socks to the hospital, they're the wrong socks; I pay her bills, I didn't send them out fast enough (her apology for snapping about that one was that she realizes "not everyone is as responsible as she is" and pays bills the day they are received), I drive 2 hours to feed her cat every other day, she complains about it not being EVERY day. I can't have a conversation with her, because she somehow almost always puts down my parenting skills, work, house, what have you. She is very negative, constantly making nasty remarks about her doctors and medical staff. When we visit, my children touch all her nic nacs and annoy her. I vacuum for her or do other chores and she stands over me and tells me what I am doing wrong. I am 40 years old, have a nice home life, had a decent career before I decided to stay at home with my children, still have a pretty decent income. I've been more financially responsible than she ever was in her entire life (she only has about 50K saved...that's her life savings), and feel I have chosen a good place to raise my children. I am tired of being belittled and made to feel guilty for wanting something better. Of course I can't tell her that because no matter what I say, she acts like I am a child and it's the most ridiculous thing she ever heard. She is convinced that she knows best about everything and refuses to consider other options. I realize I NEED to spend more time with her, since she may not have much left, but just the thought of it fills me with dread. Anyone else in a similar situation?

Sorry this was so long, and thanks for the vent...I hope no one thinks I am a horrible person for thinking this way.

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First, figure out WHY you think you NEED to spend more time with her.

Are you hoping that at last she will recognize that you are a grown, independent woman? That was my problem. I kept hoping that somehow or other she would realize that I was not the child that she wanted. It never happened. She just HAD to be the one to tell me what to do about every little thing.

I think that as they age, they begin to realize that the control over their own lives, that they once had, is slipping further and further away. They fight in the only way they trying to keep control over anyone that they can.

You can't make yourself like being around her anymore than you can make her be the kind of person that you would like her to be. Do what I did. See her as little as possible. Don't feel guilty. It's not your choice, but HERS that her life is like it is. She developed that had nothing to do with it.

Good Luck! Just remember that you are not the first, nor will you be the last, that has a similar problem with a parent. Being a parent doesn't always transform someone into a lovable person.

    Bookmark   May 19, 2009 at 7:33PM
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Agenspuffin gave you great advice. From your description, it sounds like your mother's "joy" in life is complaining about everything and everybody. Some people are like that and it does get worse as they age. She's being stubborn about where she lives probably because it's a situation she can control. It's her decision, and you shouldn't feel the need to alleviate the consequences of her poor decision. You somehow need to make peace with the fact that you are not able to make your mom's life happy & fulfilling.

You really don't NEED to spend more time with her. In fact, you could run the very real risk of harming your own health & well-being and those of your children by overly focusing on her needs and neglecting yours and your family's needs. After years of driving back & forth to my mom's home and then her AL apartment to take care of every little thing that bothered her, I realized that it was all for naught. Nothing I did really made her happier. She hated getting older, forgetful, frailer, losing her driver's license, losing her Independence, etc. and there was nothing I could possibly do to change that.

I understand exactly what you mean about having conversations. Years ago, I learned to spend hours discussing the weather with my mom. Anything else was useless. She really didn't want to hear me express myself. She just wanted to tell me all her problems & complaints.

Don't get me wrong. I love my mom and she was a good mother. It's just that as she aged, she became very self absorbed. She had no realization of the efforts I went to on her behalf. She was oblivious. Your mom sounds similar in that respect.

    Bookmark   May 20, 2009 at 12:58AM
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You do not NEED to spend more time with her unless you WANT to. Given her negativity and ingratitude, I don't blame you for not wanting to. The constant belittling is not good for your health, either. I know so many people who have ended up with serious physical issues from years of stress from dealing with a difficult parent.

You are NOT obligated to move into that neighborhood, and it doesn't sound like a very safe place to raise your kids, who are your FIRST priority, not your mom.

Do the minimum you need to so that her house is clean, she has food, clothing and medical care. If it gets to be too much work, or the emotional strain is too much, hire out some of it. There are cleaning ladies, elderly companions, grocery stores that deliver, transportation services to the doctor and hairdresser, Meals on Wheels, etc.

So many elders just dig in and refuse to move from the Old Homestead until their life becomes a total disaster. I would keep encouraging her to move, but don't count on it working.

And she is likely going to get worse with the negativity as she ages, not better, so brace yourself.

    Bookmark   May 20, 2009 at 10:27AM
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Wow, thanks so much for all the positive fedback! I really was thinking that a lot of people were going to "yell" at me. :)

I guess I shouldn't say I know I NEED to spend time with's more like I feel like I should want to, motivated by guilt, duty, expectations, etc. I am afraid that when she is gone, I will regret it, I guess. Also, sometimes I just feel like something is wrong with me...I see so many people sacrificing their lives for their parents, without even seeming to mind, and I can barely drag myself there once or twice a week without complaining. Maybe it's my fault...I am just too sensitive and just need to deal with it. I know that she doesn't really MEAN to be nasty to me - it's just the way she is. I don't think she is purposely trying to hurt me, so sometimes that makes me feel like I should just ignore it and try to understand her more. I also wonder if I did more for her and was around more, she'd be less negative.

I guess I worry about what other people think, too. My mom is not an ogre, and is actually pretty pleasant - to other people! When I think about her situation as an outsider, it seems pretty sad - this blind, frail, sick woman all alone, and her lousy daughter barely even visits her! I'm sure other people think that, and I know I shouldn't care but it still bothers me.

Anyway, all these things sound good when I THINK about them, but when it comes time to actually do something it's a different story. I am taking a break for this week and feel so calm and happy.

Thank you all for the advice! I'm so glad I'm not the only one who feels this way. I guess I just wanted to hear that it's okay to stay away.

    Bookmark   May 20, 2009 at 7:22PM
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Hi sfieldsforever.
I am the guardian for my mother, who now resides in an ALF about 50 miles from me. I have feelings very similar to what you have expressed so donÂt feel *alone*. My mother has alcohol induced dementia. Yep, she was a raging alcoholic my entire life and spent 90% of her time in isolation. Though she was obviously absent for most of my life, the few hours she interacted with me as a child were filled with verbal abuse. After I left for college (some 20 yrs ago), I had very little contact with her. My father left her soon afterward. My involvement became necessary after her declining condition was reported to the Dept of Families & Children as a neglected adult at risk (or something like that) following a DUI. Being her only immediate family, I was called to act/react. She would not leave her home but was unable to realistically care for herself. Since that time, a lot has happened. In addition to being in an ALF, she has limited assets, tons of medical conditions, and no friends . Like your mom, mine had not saved much money for her future. Additionally, she lived *high on the hog* via credit cards  lots of debt. She has always had an attitude of entitlement. She also doesnÂt acknowledge her absenteeism/abusiveness to me. She now thinks we are really close  though she canÂt stop herself from delivering insults and criticism in her "ha-ha, itÂs just in fun" manner. I still dislike her intensely and get physically nauseous when I even think about visiting her. I don't visit very often and rationalize it as 'she was never there for me and caused this situation all on her own, even after various people attempted to intervein'. The worst part is that by being less involved, some sudden incident occurs and I have to respond in full combat regalia. I don't know what is worse - frequent low-key or occasional melodramatic dealings. And I too always compare my distaste to the others who have overcome emotions to (lovingly) assist their parent/s care. I know that under the circumstances it is hard to show compassion  but as a human, shouldnÂt I be able to be better-than-this?
I donÂt know how to define the responsibility for children taking care of their parents. I guess it has to be a personal choice. Some folks seem more capable of restraint than others in this type of situation. IÂm still struggling with it. Being an only child makes it so difficult  especially when our momÂs havenÂt developed any (loyal) friends.
The only advice I can offer to you in reference to getting her to move closer to you/your uncle is to maybe report her as *at risk* to DCF. Maybe their involvement would shake her loose? But, be careful what you ask forÂ. mine developed to a legal directive after being *ram-rodded* into acquiring guardianship of my mom. (I now know that it could have been handled via power of attorney.) So, not only do I now have the legal directive to be responsible for her for the rest of her life but, this directive has turned into a financial pig. Filing the associated annual accounting records, etc. is in excess of $5000/yr. So, be careful in that arena (gaining legal/plenary guardianship).

I wish you luck.

    Bookmark   May 27, 2009 at 12:21PM
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I don't mean to sound cruel, but she is no longer the person you knew as your mother. You have to think of your well being and the well being of your family.

My mother fights us every time she is asked to change her clothes. She can't control her bladder so you can imagine the mess. My sister who is her care giver has to duck all the time to keep from getting hurt. My sister from out of town comes up and stays weeks at a time, she was not good at ducking and got a black eye for her trouble. She won't come back again. I will not care for her because I cared for my husband for 5 years with Alzheimer's and had to put him in a home because I was having vascular problems in the brain due to stress. the doctor said I would die if I didn't get rid of the stress. Your life and my life is just as important as our loved ones, more so because we are younger and have good years left. I would screen calls and not be at her beck and call. If you find she cannot stay alone, call the state, explain the situation and ask for an evaluation. If she has no one to care for her they will do what they have to do.

    Bookmark   June 5, 2009 at 9:27PM
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I'm not sure I have any real advice for you. I just want you to know that you aren't alone. As I read both of your posts, I felt like I could have written them. I can identify with every single word you wrote. There are others who feel the same way that you do. Knowing that is helping me. I hope it helps you to!

    Bookmark   June 6, 2009 at 8:25PM
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Thank you so much, everyone! I really appreciate all your kind and understanding replies, and feel so much better that I am not the only one who feels this way. Best wishes to all of you!

    Bookmark   June 9, 2009 at 6:08PM
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