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On Dec. 12 of this year, my dad had a minor stroke. That is when I began care giving. My sister and I both took care of my dad, but my sister went home to her house most nights whereas I went home to my house 1 or 2 nights every 3 weeks or so. Dad passed away on May 30th, just 2 hours after his 93rd birthday.


Mom began having more health issues the day of the funeral. Since then shes been in the hospital 6 times, 5 for CHF and 1 time for a minor heart attack. In October she had a cardioMEMs implanted and I've been able to keep her out of the hospital since.


I gave up my home and moved in with mom in August. My kids are grown so I had been living alone for several years. Prior to that I was severely disabled hardly able to walk and had both hips replaced after 7 years. I still need to have back surgery per the doctors.


So I moved from a 3 bedroom house into 1 room at moms with the majority of my belongings put into storage and the rest into mom's basement.


My mom and dad are beautiful people both inside and out, but since my dad's passing, it's gotten really hard to communicate with mom. When she has CHF or when her blood count is low, it becomes impossible for her to walk and I have to lift her, otherwise she is able to. However, she will only walk to the bathroom and back - everything else I take care of, from taking care of her meds, to getting her water and meals, to helping her wash, taking care of all medical treatments, etc. She will call me in there just to lift the foot of the recliner higher. We have different sleeping patterns and since August I have only slept through the night 2 times. It isn't anything for her to wake me up at 2 or 3 in the morning because she can't work the TV remote or because she can't sleep and wants something to help. My dad treated her like a princess for the 67 years they were married and did absolutely EVERYTHING for her (dishes, laundry, etc. Everything). So needless to say, she is completely spoiled and expects the same treatment from me and sis.


My sister comes over for about 4 hours during the afternoon, but that is during the time that mom is usually napping, which leaves all the work still to me. She does take her to all her doctor appts and does the shopping for me. I've left the house 2 times since I've moved in, both times when I've had doctor appointments myself.


Mom expects me to be out in the living room with her from the time my sister leaves until I go to bed and then she gets mad when I do go to bed and leave her by herself. And when I'm not out there, I'm constantly cleaning or taking care of things for her. But I have my own medical issues and my doctor has told me that it is imperative that I get more sleep and take care of myself better. When I try to talk to her about this, she always turns it back to herself telling me how her and dad took care of my grandma (mom's mom) for 20 years and was never unhappy about it. But mom had dad during this time and he was very good with her and waited on her as well. My dad was an incredible man.


I'm exhausted. I haven't even had time to grieve over my dad's passing. Mom keeps telling my sister and I that he was her husband so her grief is more important than anyone else's. I'm lonely. I've given up all my friends and doing anything for myself. I don't even bother to put makeup on or try to look good anymore during the day like I used to. And I know that I am very depressed. Whenever I try to go into my room to have time for myself, mom has to know what I'm doing and unless I'm working (I was a transcriptionist until I moved in) I should be out there with her. I cannot stand watching the news all day, every day. It makes me too nervous.


She keeps telling me this is my home too, but when I started packing up the closets in my room she told me I was so unsentimental because I was packing up some of Gramas and Dads things. So I'm living out of boxes instead of having an actual bedroom.


Am I just being selfish? I feel so guilty

You are not selfish.  Tell her you are sorry for her loss, but that you are willing to do X, Y,  and Z, and that is it.  If she needs help every night, tell your sister, you guys need to split it, or get more help
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Also, as to mom's health. She has heart disease as well as kidney disease. She is not on dialysis as of yet. She's been at stage 4 for several years. Since she's had the cardioMEMs implant, I've been able to be in contact with her heart doctors assistant and have been able to keep her numbers low so she doesn't develop CHF again. I work so hard everyday keeping track of what she takes in and how much fluid she's drinking. I do everything I can to keep as healthy as possible because I love her.

I try to get her to do her exercises to get her stronger but she gets mad at me and finds excuses. If my sister and I say anything to her that she doesn't like, she starts crying telling us we don't love her like we loved daddy. That we don't take care of her. It gets really old and makes us feel like crap. Family that has been here have made comments to us about how they can't believe how she talks to us sometimes. She can't believe anyone has said anything like that about her.

It's so hard emotionally and mentally. It's tiring physically. Yet I don't know if I am the one that is just not being understanding enough because she is older (86) (I'm 53) and not well. I've threatened to leave, but I know I can't. I have nowhere to go now. She did redo her will and left the house to my sister and me so this is my home - it just doesn't feel like it.

I don't know. I could go on and on. The only one I talk to about anything is my dog (she's got to be tired of listening to me - LOL) and my sister and I talk about things, but some of the things concern her. I would really appreciate it if she was around a little bit more and helped with her morning routine or stay and sit with her at night so maybe I could either sleep in or go to bed early without the monitor sitting right next to my ear so I can hear mom if she needs anything. But my sister has her own home to take care of so at the same time I don't feel right asking more of her.

I'm sorry this is so long. I just really need advice or maybe I just need someone to actually 'hear' me.
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lealonnie1 Dec 9, 2019
We hear you Tami......we really do. In fact, my father worshiped my mother and treated her like a queen. She didn't like him at all and let him know it ALL the time. After he passed in 2015, she got rid of ALL of his things immediately! Says she doesn't miss him in the least. Lets us know how we all 'loved him more than we do' her and yada yada. Which is probably TRUE because he was a lovely human being and she is a complaining, gossiping, negative Nelly like nobody else. So, she lives in Assisted Living/Memory Care, will be 93 next month, and also suffers from CHF and a bunch of other things which have worsened since Dad died. I fully expect to get a call from her PA tomorrow that it's time to get her to the hospital AGAIN, God help me, but at least I get to come home to my own place and get away from all the histrionics. Someone ELSE is paid handsomely to look after her, a team actually, or a village as some call it, and it works out MUCH better that way for all concerned.
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You are NOT selfish, you are exhausted and worn out by a woman who is 100% clueless about how to take care of herself or what it means for YOU to have given up YOUR life for HER.

I'd like you to take a look at a thread I started a few days ago called When Is It Okay to Surrender? And then think long and hard about getting your mother into Assisted Living or Skilled Nursing, where she BELONGS, and moving on with your life and grieving the loss of your dear father.

https://www.agingcare.com/questions/when-is-it-okay-to-surrender-454361.htm

Please read the comments carefully, too, as they are very important.

All the best to you, my friend.
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Turn your monitor off for a couple of hours and set an alarm to check on her every 4 hours and STOP LIFTING HER! What will she do when you totally throw out your back and need hospitalization yourself? Wake her up when you get home from work. Sis should NOT be letting her sleep all day.

Your first mistake was getting up and helping her change the remote at 2:00 a.m. I have a relative who pulled that crap with her granddaughter, called them at 2:00 a.m. to drive several miles to her house to fix her remote! And they DID it, and then wondered why she kept calling them in the middle of the night for other piddly things. It is attention seeking!

She needs to stop sleeping all day and partying all night. And it is not wrong of you to expect to get some freaking sleep! Your mom and sister are both going to be in a world of hurt when the candle that you are burning at both ends, burns up completely, which it will do soon.

Your mom needs to be in an AL or NH. She needs to be walking when she is able to walk. You do NOT need to be lifting her, tugging her, etc. Set her up in her chair with a snack, drink, sleeping pill, etc. and go to bed. Tell her she is on her own.

You need to be able to get out of that house for at least an hour or two each evening. Can't she sit in the chair with the phone handy while you go to the store or even better, take a walk?

Madness!
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We do understand, perhaps you need to rethink your living with her, why not research AL. You are giving up your life for her, does that really make sense to you?

AL is not what it was 50 years ago, my parents live in a beautiful facility.

Guilt is a self imposed emotion, which serves no purpose but to keep one stuck, unable to make sound decisions.

You only have one life, don't waste it, when she dies if you continue this arrangement you will be in big trouble, no job, no money, no home, no future and emotionally shot. Think this through.

Sending support your way
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TamiJ8796 Dec 11, 2019
Thank you. I know there are a lot of beautiful and great facilities now, it's just not something I can do.

And that is why I'm here, on this forum. I'm trying to find ways so that I won't be emotionally shot. My dad designed and built this house back in 1964. It's a beautiful house, in the country, with land. Mom has left it to my sister and me so I don't have to worry about a home in the future. I just need to figure out a way so that I will be healthy enough to have a future. And a way to take care of mom and myself at the same time.
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I understand why I'm being told to find an AL for her, but that is something I cannot or will not do. After one of her hospital stays while I was packing my house, she was put into a rehab/nursing facility close to home where we could see her every day. She had no fluid around her heart when she went in. Within two weeks, she was back in the hospital with CHF worse than she had ever been before because they didn't catch it sooner where it could be treated before it got too bad. I'm not saying that they were at fault, but because of so many cutbacks in the system, there just isn't enough caregivers to take care of everyone (in some situations - not all).

With her heart doctor's assistant and I staying in contact once a week, I've been able to keep her out of the hospital because I am continually monitoring her numbers and she will call me if it starts to raise, which so far it hasn't because I watch things so closely. And honestly, I know that if it wasn't for me staying on top of it, she would have been back in the hospital by now. 

Please don't get me wrong. It's not that I don't appreciate the advice about putting her into a home, I do. It's just that my dad designed and built this house for my mom back in '64. I'm not going to take her away from her home now just because she is sick.  

I'm not looking for ways to 'unburden' myself of her. That is not why I'm here. This is my mom's home. I'm looking for ideas on how to continue to care for her while trying to find ways to manage my own physical, mental, and emotional health. I hope that makes sense. I'm here for support.

I had to stop working outside of the home about 10 years ago, so taking care of mom is my full-time job now. I just need to figure out how full-time doesn't mean I have to be on duty 24/7.

Mom is not a witch, and I hope I didn't portray her as one. She's spoiled and needy, yes. And most of the time, it's all about her. But spoiled or not, she was always a wonderful mom when I was growing up and supported me in everything I ever did. I cannot turn my back on her now. Maybe you all think I'm crazy and bringing this all upon myself, but I know that I cannot be the only one out there trying to figure this out.

She doesn't stay up 'partying' all night. She and dad always stayed up late watching TV whereas I, on the other hand, like to go to bed around 11 and get up at 6. We just have different sleep schedules, just like most people in the world do.

And I completely understand when people arrange for parents to be in AL, my cousin owns seven of them around the area. I'm not disparaging that at all. In fact, I told both of my kids, that is where I plan on going when I get too old to live alone. I do understand why it would work better for some than others. But I'm here. I live here. My mom lives here. Now I just need ideas on how to make it work. My doctor told me to look for support groups, which led me to you.
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anonymous912123 Dec 11, 2019
Honestly, you could visit her several times a week in AL and do the same thing you are doing living with her. Your example related to a window where you were not nearby.

You have made your choice to hang on until the end and do everything for her...this is your choice....it does sound like you are attached to the house as well and you do not want to let go of that either...Good Luck!
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If you still own your house, move back to it.

Work with your sister on a proper, structured plan for your mother's care. If it can't be done at home, then mother will have to move into a facility.

I'm sorry to be so stark about this, but I'm seeing red so badly over the way you are being treated - and more especially that YOU think it is somehow normal and reasonable - that I can't type straight enough to explain.

Your sister has it about right. Plenty of input, but good boundaries. That's what you want to aim for.
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Oh dear, I missed your reply because I was typing.

Your mother is very precious to you. That's good. You want to be closely involved in her care. That's also good.

But re-read how you describe your typical schedule. Then imagine that somebody else was describing that schedule to you. How would you respond to them?
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Hello Tami8796,
As you've not mentioned money issues, perhaps you can hire a caregiver to come in periodically to assist in your mother's care?
You need sleep, and several uninterrupted hours of off-duty time in which you can think your own thoughts, and organize up your environment in a manner that you will find harmonious.
You're not selfish, you are exhausted and not able to think clearly. You can't help your mom if your own health fails.
I wish you well.
R27
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TamiJ8796 Dec 11, 2019
Thank you R27. Money issues aren't an issue as for day to day living, but we do not have the money to hire someone to come in. I did speak with my sister a couple days ago though and told her that we needed to figure out a way that she is here more during the times when I need the help and that I really, really, really needed to get more rest.

I so appreciate her coming over the few hours she does everyday. It gives me a few hours to take care of phone calls, paperwork, laundry, etc... Anyway, I left the dishes and cleaning from yesterday because I was busier than usual with the baby yesterday (I forgot to mention that I also babysit for my niece two days a week from 10 am to 10 pm.)

The only reason I do that is because it lights my mom up to have the baby here. She is one years old and sits, plays, and naps on my moms lap all day long. They have such a good time together and my mom is always teaching the baby something new. It makes her happy and I think goes a long way into her feeling well.

But anyway, so I left all the work from yesterday and my sister took care of it all today for me while she was here so I wouldn't have to worry about it. She also got mom's dinner ready so all I have to do is warm it up tonight.

Just that alone helped me so much that it made me want to cry. Had I didn't have so many other things to do while she was here, I would have taken a nap!

But to answer your question, I wish that we could afford it. But if my sister and I can work it out to where I'm not asking too much of her, it will really make a difference I think. I just don't know what is fair, how to split the work up, or if I'm expected to do more because I live here.

I also told her that I needed her to spend the night and the whole day - either before or after - here at least once a week so that I could have some time to myself and get some actual sleep at least once a week.
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I'm taking the first step today. Removing the things that my dad had stored in the closets that were his and my grandma's is not me being unsentimental or uncaring or anything else. I'm boxing up the stuff in the closets and putting my stuff in. If this is my home, then I deserve to have a bedroom that is mine and mine alone. I'm so tired of having three-quarters of the bedroom filled with boxes and only having a 4x4 space to actually move freely without tripping over a box. One point for me!
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Countrymouse Dec 11, 2019
May it be a good start! Hugs to you.
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Talk to your sister. Negotiate a balanced schedule.
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I’d like to suggest something very different, that might be hard to swallow. In 1964 your father built a beautiful house in the country, with land, and it has been left to you and your sister. When your mother dies, will you and your sister want to move there to live? Do you think you could both live together happily? Could you cope with the land? If you want to live there but sister doesn’t, will you be able to raise the money to buy out sister’s share so you can own it and stay there? If your health declines and your mother has to move to a nursing home without the option, will the house have to be sold or mortgaged to pay the costs?

I know from experience that there can be many heart-wrenching decisions that simply have to be made when circumstances change, like giving up a job you love, selling the matrimonial home in a divorce, or just moving when you can no longer run the farm. But it can be easier to get past the changes than you expect, and sometimes you decide later that it would have been better to do it earlier.

As the house is an important part of your decisions about options, it would be logically sensible (although not attractive) to try to think forward. If you guessed that the house would have to be sold, what would happen then, and how might it change your options now?
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December 12th of this year has not happened yet.
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MargaretMcKen Dec 12, 2019
Clearly last year, and he died in May.
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