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I feel selfish, greedy, whiney....you name it...I feel it. The thoughts that run through my head are awful. How could I feel this way about caring for my own momma? She has lived with me since my dad passed which will be 5 years this October. Things were manageable until this last round of being sick. I about had a breakdown. My sibling is as good as non existent. I was left with caring for my dad until he died, now I'm caring for mom without one minute of support or one dime of help. Anyway, I know anger is behind alot of how I feel. No anger that I have to caregive, but anger I am doing it alone. I miss time with my husband, I miss working outside, I miss play dates with my grandkids, I miss grocery shopping (I'm very grateful for Walmart and their online grocery order and pickup..it's saved me). I'm struggling. I love my mom with all of my heart, I would do anything in the world for her and I feel I am. I'm just tired and tear up easy. I feel so guilty over how I feel. She asked me if I was through the change yet. :>( Bless her heart she's just trying to understand why I am so sad. What was I going to say? How I really feel? I won't do that. I just tell her I'm tired and need a nap (which I seldom get). She's been so easy to get along with in the past, but we are dealing with fear of dying now, she denies it but I can tell. She is obsessed with her health care and wants me to nurse her like I'm a private nurse. Some days I just don't know what to do but pray for strength and wisdom. I feel guilty about hiring a sitter.....you can't trust just anyone. She is so easily frightened which worsens her anxiety level, which puts her down for days. I don't guess I really know what i'm asking other than how to deal with all of these negative feelings. I fear too and my main fear is regrets. I don't want any regrets, but I'm quickly realizing it's impossible because you will feel bad about your negative feelings if nothing else....even if you never voiced them.

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Hoosiersister, I am sorry you are going through this. Follow through with the suggestions given you here and press through to get some help. Don't feel bad for venting, that's why we are all here. 👍What your brother did was wrong. I could share about siblings, but I will remain quiet.

We got the results back from the MRI on my mother. She did not have a stroke. She has small vessel disease and shows to have moderate nerve damage. The Dr's response relayed to me through his nurse was, "It will get worse". Uh, thanks! Anyway, we will see him this Tuesday at which time I will address the lack of compassion! I've done some research that says she will basically have vascular dementia. Although she has improved greatly after stopping the Lexapro, she still has issues. Momma has Bronchiectasis which causes bouts of chronic coughing. She is on oxygen 24/7. The oxygen use increases her risk with small vessel disease. She's not getting blood flow to the brain. They told me that her platelets are very low also. I will talk to the Dr about that Tuesday. It breaks my heart, but my mom's is a strong woman and she's being a trooper. She has regained much of her mind, but I'm finding myself doing more and more for her, it's smothering at times. I feel like a personal companion, nurse and secretary. These cities should be divided among siblings. After rearranging her room I organized her paperwork and with her instruction I organized it where I would know how to manage it. We consolidated files and simplified her routine. My hardest things I'm dealing with right now is her wanting me at night. She says, "Come by once in a while". I've decided I will just have to wake up and check her then go back to bed. I've forgotten how the "check the baby" routine wears you out! She also keeps saying, "Honey, you've got to watch out for me, I'm liable to say or do anything". I explained that I can't be with her every second, I have to cook and clean, etc. She agreed this is true so we decided she would talk to the folks she talks to the most and tell them to allow for her and if she says anything unusual or tries to give anything away to call me. Oh boy! I'm enjoying her while I have her. I'm trying to think of what I need to know while she can remember. I was born late in life so all of my aunts and uncles who are living are her age and will be leaving me too. It's a sad place right now. I had a heart to heart talk with her yesterday and she feels bad that I'm carrying the responsibility of her, but I reassured her it was an honor. I told her that the hardest part for me was staying in this house when she's gone. We do everything together. She told me what to take out so I wouldn't have to see it and to set a few pictures of her around so I will see her face. Oh my goodness, I cried and cried. She's not a crier, but I could tell she was hurting for me. Once again, I put on the "Rat Queen" crown for making her feel bad. 😩She looked at me and said, "I told you I'm gonna live til Jesus comes! " 😉 I'm so thankful God cares about us and hears us when we cry. If it weren't for the hope we have in Him we would surely crumble under it all. My desire is to hope in the Lord at all times. Faith like my momma. If God can save you, don't you think He's able to keep you through the hard times? OH YES! \0/
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Legally, you are not responsible for your sister. Call your local Area Agency on Aging and discuss the alternatives.
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Hoosiersister, I am surprised to read that your counselor says things this! "Because I think if I hear one more person, including my counselor for crying out loud, say to me, "If not you, who?", or "You're doing such a good job", "You're an angel for doing this"

Your sister complains to your husband about you? I'd want her out. I second JessieBelle's comment - tell the county you aren't available and let THEM figure out where she goes.
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Hi JessieBelle. Thanks for your reply..I wasn't clear when I said my sister isn't sick enough for a nursing home..especially when I said I feed her. I make the food, and she eats it. She is ambulatory, she dresses herself, takes a shower by herself, and can physically feed herself. She was recently assessed for a Medicaid Waiver and turned down. She doesn't qualify for regular Medicaid in my state. She's over the income limit, and that hurts a lot of things. I am her POA (my brother was for one month. Brought me the papers, said "Sign here". I didn't know what I was getting into. I had no idea until a week ago that being POA doesn't work with Social Security. Didn't know that the Medicare prescription program she was put on only worked for California. I have to hurry and do something because her Medicare starts August 1st. Anyway, Area 7 Agency for Aging and Disabled said that it makes them feel bad, but some people fall through the cracks, and she's one of them.
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Hoosier, this definitely isn't your job. If you do all the ADLs for your sister, she should be able to qualify for placement in a facility with Medicaid. I would contact the county and say I wasn't available anymore and she needed to have a place to go. If they know you won't keep doing it if pressed, they are more likely to find a solution for her.
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I'm not taking care of my aging parents. I'm taking care of my sister who is two years older than me. She had a stroke, was brought from another state to me by my brother, who then dusted his hands and left me high and dry. I have another brother, an RN, who has refused to talk to us since my sister had her stroke. She is not bad enough to qualify for a nursing home, and we don't have enough money for assisted living. So she lives with me, and I take care of her 24/7. My life has been ruined. I know that's mean. I'm at the point where I don't care. She can't read, can't take care of her own medications, cook, etc. I do her laundry, feed her, doctor's appointments, etc. Navigating the social services system has been hell. Trying to find/provide medical records other than for just this stroke is ridiculous. My sister is 64, 65 in August, and lived with an 81 year old roommate who had taken her in. She knows very little about my sister. My sister and I were not close, so I know very little about her life, other than the fact that she moved from person to person throughout her life getting them to take care of her, even when she worked. So who is stuck with her for the rest of her (my) life? Tada. My attitude wasn't like this at first. But she is suffocating me. She listens to every conversation I have, complains to my husband about me (he doesn't appreciate it, and sees what is happening)....It's hell for me. It's like taking care of a chkid who is in need of care, but resents it, so she's going to be bad. She lies, she manipulates. Grrrr. Ok, I know I crashed your forum, btv I've no one else to talk to. Because I think if I hear one more person, including my counselor for crying out loud, say to me, "If not you, who?", or "You're doing such a good job", "You're an angel for doing this" I feel like I'm going to go full on ballistic at them. Thanks for "listening".
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Rainmom......
I laughed.
That's been a long time since i sincerely laughed,thank you for your humor.
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I feel the same.
Thank you for sharing these comments. I feel I'm reading my words on my life.
My mom.
Her fears,my fears,no naps,shave your legs?@$%@!(humor) ......
GOOD MORNING TO YOU ALL
It sometimes reminds me of "ground hogs day",the movie when I open my eyes every morning. At least y'all made me realize I'm not nuts, It just comes with the duty of caregiver♡
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I didn't see what your mother's conditions are in your profile. You said that she had some weakness on one side. Is that right? And that she was acting odd? Is she being seen by a neurologist? Is that who prescribed the Lexapro, then discontinued it? Did it seem to help her?
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Thank you Babalou. I feel like I'm not doing enough, but we don't run on feelings.....we do what we can and keep walking. AMEN! I will start charting things with her, that's a great idea. She is right as rain (as I call it) this morning, I'm enjoying it. I have a friend coming to sit with her for a few hours this morning so I can take my daughter to an appointment, she's chronically ill also. We are working on trying to get a diagnosis. So much going on. I'm excited about getting a little reprieve. Speaking of groceries....the online Walmart grocery shopping has saved me! I can actually get everything we need at once then either go pick it up with mom or send someone. It is a HUGE blessing.
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Soo, you are such a good daughter! I hope you realize that! Hugs!!!!

The in and out, back and forth nature of my mom's " being there" and not was crazy making! I'm still not sure if at some point she was having small strokes or what, but she'd be cognitively herself and then...just not! You might start charting the time of day that this is happening. You may see a pattern.

Recently, with my mom, we've started noticing that she gets upset and agitated about things late in the afternoon. It's called Sundowning ( even though it hap6when the sun is still up).

You need to remember to make time for groceries and grandkids. Start exploring what help is offered in mom's community and what her resources are.
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Thank you churchmouse and Babalou. Yes, Babalou, that describes my mom. What I've noticed is that it's not all of the time which makes me wonder at what given moment am I being detailed enough with her. It's frustrating for her because she feels we think she's stupid. :-( Anyway this morning was AWFUL! She got up and went about getting ready to go, but she was so confused. She had me so rattled I snapped at her. It was at that moment I realized she was nervous and had shut down. She couldn't think, couldn't remember how to do anything, rambled on and on. After the MRI (that she did great) she was right back to her self. It was like the stress left and she returned. It was something to watch! Anyway, they only had to pull her out of the MRI machine once for coughing. She did great and still talked about it tonight. They said they got some good pictures. We will know something in 48 hours. I had to take her computer out of her room and her office desk to make it easier to get to the beside commode she uses at night. It was sad. I could tell she felt she was losing part of herself. She agreed she hadn't used that computer in years. It's Windows XP! We both hope moving things around don't mess with her tonight if she gets up. Everything is still in its general location. We are taking it one day at a time. I dread that feeling I get every morning. Do you know it? That, what am I going to find when I go in to her room feeling. Will she be with us still? It's an every morning thing. Today we were at the store, she wanted a little gift for a friend of hers. Of course we had to make a potty stop. I was standing there lining the toilet seat like she had done for me countless times and I began to cry. Everything in me wanted to hurry up and go look for bargains just a few minutes before. I stood there wondering how many times she must have waited for me to finish pottying so she could go bargain hunting. I leaned back against the stall, took a breath and relaxed. It's ok I thought, I'll wait. :)
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Soo, we're all thinking about you and your mom today.

One of the things that i noticed about my mom ( which led to us getting her some neuropych testing) was that she no longer got the " big picture" of explanations about anything. She would attach herself to one detail and run with it. We soon learned that fewer details and reassurance that we were taking care of things was the only way to go.
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Tsk. I'm sure your cousin meant well but that was a slightly idiotic thing for her to say to your mother. Just reassure your mother that the technicians will talk everything through with her and that they know best what to do.

Very good luck with it, hope you get there and back with minimum hitches :)
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MRI is today. Spent time yesterday convincing her that my retired RN cousin who lives 20+ hours away was not meaning any harm when explaining the MRI to her. After their conversation mom was red hot mad and that is not my momma. She wasn't having a scan, she wasn't going, it's so-in-so's fault she's the way she is...etc. My cousin is the sweetest woman you could know, but right now mom is EXTREMELY impressionable and things "stick" in her mind badly! Mom suffers from Bronchiectasis and she has spells where she coughs hard. Her coughing was concerning her so she asked my cousin who told her she can't cough during the test. In moms mind it made her angry that I was making her take a scan. Sigh.... I finally talked her through it reminding her that she is impressionable right now and then she remembered that she is impressionable and the conversation was over. Breaks my heart. She has done so much better the last 3 days. I'm thankful. Anyway, the scan is today. HERE WE GO!
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We have 5 more days until the MRI. Who knows how long the results will take. Am I supposed to be watching for signs of something? I know the basic signs of a stroke, but I've noticed bowel changes, occasional numbness in one hand which I thought was due to the curvature in her spine, she's colder than normal, but complains of sweating at night. I'm giving her little cups of diluted Gatorade to keep her electrolytes up. She asked me last night, "Do you think I'm dying?" Of course I said no. This morning as I type this, the gravity of that question is hitting me. My closest girlfriend, my teacher, my mentor, my momma is slipping away. I know it's appointed unto man once to die. A time to be born and a time to die. I know death is not the end. I know there is a better place for those who are in Christ Jesus. What I also know is all of this dying process is right here in my home. How will I ever be able to deal with it all when it's over. I was able to walk away from my parents house when my dad died and I moved mom in with me. Where can I go? I can't. How will I be able to stop glancing into her room 100 times a day or listening for noises through the wall that divides my bathroom from her bedroom? It's so overwhelming this morning. I believe I can answer my own question though.....one day at a time. I want to bring her as much joy and comfort as I can for as long as it's needed and I can do it with The Lord!
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Thank you 2TiredinFlorida and jeannegibbs for taking time to post. Sometimes I feel like everyone is expecting me to know things. I don't know what kind of help I need although I do need some.
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Sooboo, Lexapro definitely doesn't cause dementia. If it or another drug has confusion as a side effect that is temporary and clears up when the drug is stopped. It is not true dementia.

Come back and let us know what the further testing shows. We are all on your side!
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Those negative feelings are simply something we have to put up with. I've been caring for Mom now for nine years. She has steadily gone down hill, and now her mind is nearly gone. She says things, I'm sure she doesn't mean, but it's hard to take. I have had to give up almost ten years of my life. My friends are no longer there for support. Everyone it seems has deserted me. Yes I know the feeling. We start having thoughts we never thought we were capable of. The fact is we also need to take care of ourselves! I'm finally giving in to getting some help with Mom. I know whe will not understand, and she will fight it. However my own health needs to be taken care of as well, especially my mental health. It has been so hard to keep a positive outlook. I realize I am already old myself, and I need to enjoy what time I have left. Hang in there, and get help when you need it. It has to get better!
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Mulatta88, I'm so glad you got some help. I'm working on it. I would LOVE to go away for even the night. The last time I was alone with my husband was in May of 2015. It may have been 2014...I can't remember. If I could get some help in the house it would be awesome.
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After 3 sessions with the therapist, that's my solution to mom's clinginness.

Therapist said that I need time away from mom, and no guilt.

Hired M...... for 3 hours last Saturday and I am feeling a lot better. She'll be my respite person, whom I trust implicitly. I went "out", left a tiny bit of ironing for M......., and when mom saw that, went to her room and took a nap.
I am happy to see the light at the end of the tunnel...............
2 vacations in the works, one to northern California and the other, to the east coast in early October. I am not guilty! Therapy is really helpful for me.
Hubby's happy we're getting outta dodge, FINALLY!

M88
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Thank you Babalou and NYDaughterinLaw. I'm doing my best. One step at a time.
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As far as getting help in the home, not everyone has the money to hire someone and as far as home health, I don't need someone to bathe her, she does that herself right now. I figure as long as I can receive encouragement through these times (rather than scolding) that when it gets where she can't do as much for herself then I can call home health in. I would like to take a couple hours for myself each week though, to keep from totally losing it. I need to see about that. I don't like the idea of strangers being alone with her in my home. I need to see if I can pull together a list of friends who would sit for 2 hours once a week. I'd rather pay them.
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I don't understand the course of strokes very well. I know it can vary. Mom has been completely normal today. She said she feels like herself again. Is this normal for someone who has had a stroke? They have her scheduled for an MRI next Tuesday.
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I'm sorry you are having such a hard time and hope you will forgive yourself for all the things you're beating yourself about. You had awful thoughts? Join the club!

Look up "irrational guilt" and read about it. "Things were manageable until this last round of being sick." [A breakdown suggests things were not manageable.] "I would do anything in the world for her." [Including killing yourself in the process?] "I just don't know what to do but pray for strength and wisdom." [Strength and wisdom to do all the chores yourself?]

I hope your mom hasn't had a stroke. And even if she hasn't, I hope you will bring in some help so that you can have regular breaks from caregiving.
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Dear Soo; I'm also betting on a stroke, not the Lexapro.

In June of 2013, my mom suddenly started behaving just a bit strangely. She noticed it herself. I remeber that weekend, she decided she needed a hat (she had 5 summer hats in her IL apartment) so off we went to Target. She tried on all sorts of weird, inappropriate hats for about 45 minutes. At the end of that time she said to me "something's changed. I don't know what. But I've changed".

I called her doctor that afternoon and he asked that we make an appointment for a full neuro workup. The next day, mom decided that she must have a UTI and my brother and SIL took mom to the ER; test was positive and we all attributed the symptoms to the UTI.

Mom had a major stroke 3 days later. So yes, get that MRI!
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Well, the Dr put mom on Lexapro and 2-3 weeks later she has dementia. It was working great at first, her sleep pattern reset and she calmed down and was happy and then wham! We are going on 9-10 days off the drug and although I see much improvement she's not the same. The Dr wants to do an MRI and some labs because he feels the med didn't do this, that maybe she had a mini stroke. :-( I'm so tired. I'm thankful she's improving, but fear what's next. I don't fear as one who has no hope because I know God will strengthen me, but I am unfamiliar with the waters we are in and it's frightening. Yesterday I wanted to open the door and take off running as fast and as hard as I could just to break free from everything. I realize that is not the answer. Goodness! I've found myself comfort eating. NOT GOOD. I'm thankful she is content and seems happy, although she's with us more than she's not (mentally ) she knows something's not right with her which makes everything 5 times worse. That's all she talks about. What's wrong with me? How did I get this way? When am I going to get better? On and on and on and on for days and days. I have to admit that today has been better as far as her asking the same questions over and over again, she has the answers today, bless her heart.
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JesseeBelle How are you doing? Things have calmed down here. \0/
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M88 You are so right. How are things going with you? Things have improved a bit here. The Dr. put "her" on a nerve pill and things are MUCH better. :-) She has calmed down now and is able to do some things for herself again. This gave me some time to get myself together, Lord knows I needed it. It feels good to come up for air and be able to float on top of the water for a while. I really hope I never have another episode like that, but I know its likely I'll have to do it again. Hopefully I learned some things this last time, like seek help from Home Health! Anyway, I haven't filed my nails in weeks, my eyebrows are hideous, but I did finally manage to paint my toes yesterday! I've been too tired and busy to even, care. I put a bedside commode in moms room for her to use at night during this last episode with pneumonia and that has saved me getting woke up several times at night and her having issues making it to the bathroom when she's just not strong enough. I just left it in there after she got strong enough to walk around again because it seems to be helping her. I double line the pot with small cheap kitchen trash bags and she ties it up and takes it out herself in the mornings. So far so good. We are learning what helps and what doesn't. While she was so sick this last time she had to have a warm cup of milk like twice during the night (I almost wanted to scream at 2 am!) Of course I did cry to myself and get mad. I felt like a worthless human being for griping about getting my sick little momma a cup of milk...I mean how many times did she get up and nurse me when I was a baby? It was actually like having a baby all over again though. You know that moment when you lay the baby down and walk away to count to 10? Yeah...... It seems she still wants warm milk at night. I was doing dishes one day and it dawned on me that we have this little thermos that holds maybe 2 cups of coffee so I tried it out one night. SHE LOVED IT! She went on and on at how smart that was to use that thermos. Now she has warm milk during the night and I get to sleep. ;) Win-win! Honestly, I pray about everything. These ideas just don't come from the air. God is helping me, He's taking care of us. He will take care of you too.
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We can only be as helpful as our circumstances allow.

Cannot take blood out of a turnip, right?

M 8 8
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