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I feel I am a prisoner and have given up all my freedom and my life to care for my father in law. I WISH I could just......leave. I would be happy to just live in a cave compared to this. Have you ever felt anything like this? I used to feel guilty thinking this way...but now...it is actually sounding good to me. So I know I must be in trouble.

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Heidigreene...THANKS! You said a mouth and heart full. As you said, your In-laws may be content in their toxic, limited fearful life. Once we accept others as they are, not how we would like them to be the road of life becomes easier to travel. I'm learning this lesson for myself...not for my parents but for myself.

Somehow, some way the opportunity will avail itself for you to take a break and when the time comes do it without regrets. Do what you can, when you can for the betterment of you all!
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I know just how you all feel. My husband and I closed our business, moved from kids and grandkids, friends, our home etc. to come and be caregivers for my husband's mother AND father. We thought we would move into an apartment close by to them, get jobs and stop by daily to check on them. We had no clue once we got here the dire situation we were moving into. Them living alone was clearly out of the picture. We moved in with them, cleaned the house (they are hoarders as well as too old to really clean well), started the process of organizing doc appointments, meds, driving them everywhere etc. you know the routine.....I have been doing this for my in-laws with my husband since September and I have good days where I can detach with love and carry out my caretaking "duties" as I have committed to and I have hard days (like today) that I just want to run from the situation (I probably would have already taken off if I was not so committed to supporting my husband and my marriage).
My MIL is narcissistic. She has cancer is at a stage where we are practicing pallative care. The docs gave her a few months when we got here. Now they are just baffled by her. My FIL is a enabler and a total co-dependent. He is extremely unhealthy and has dementia/alz or parkinsens...they are still trying to diagnose. He is a dirty old man as well.
Everything I read about the end of life, the diseases, the narcissism helps me to set boundries and carry out what I came to do. I have to remember to only stay in today. If I ask myself, "Heidi, can you do this for today?" I usually answer, "yes I can, I may not like it but I can". If I start the "what if's" (like what if they live for 10 more years) I crumble. Today I can do this.
Their quality of life is so poor, but again, I remind myself that this is my opinion, it's not how I would want to live (or not live really). They may be perfectly content in their toxic, limited fearful life. I practice each day to have acceptence of them exactly as they are. I strive to remember that even though I cannot see it, there is God within them, it's just wrapped up in a nasty ball of fear, resentment, regrets and character defects. If I can remember that then I can be kind, patient, have tolerence and set heathy boundires. It's not easy. My MIL will not let anyone else care for her and getting a placement even for a weekend is difficult at best with two of them. We desperately need a break. I do not see one in the near future so again, I will stay in today and do what I think is right and go to bed tonight knowing I am doing the best I can right now.
Hang in there, I am.
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I found the BEST EVER AL...the entire family came to PROBATE and complained, even though NONE of them EVER HELP, and thought I was being mean!
PROBATE made me remove her and now I am stuck with the worst care givers. Changing agencies does nothing....they all stink. I am with you....lets just pack a bag, pay ourselves for the time we put in (I kept a journal) and hop a flight to some island! This is a thankless job with NO support from greedy family, and a mother that is so ungrateful as she lives in her fog of dementia.
I am ready to let them appoint a THIRD party that will drain her dry and then she will go on title 19, house sold and she WILL live in the worst nursing home ever. I have bent over backwards....for what?
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Please know that your frustration is normal and I am so thankful you are venting very loudly on here, I am very concerned about your situation. If you cannot afford to move out on your own as you said in an earlier post please contact your local Area on Aging and review with them subsidized housing that may be able to fit your budget, you mental health has to be managed as well. Please try to be strong and speak to your husband about your FIL. Prayers heading your way..!!!!

Blessings,

Bridget
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Oh yes, I am still feeling the same sometimes,too. Its kind of like being a prisoner in my own home and when I do get out, I live my a clock always in a hurry. I am thinking about hireing a weekend caretaker so that I can live my life with my husband, family, and Mom, and I will be a better caretaker for taking time off. I also know from an ALZ page that people with alz/dementia know how you feel even tho they cant tell you. Maybe these quotes will help, they helped me.
"Alz patients have the ability to read body language and voice inflections".
"They feel frustration, loss, happiness, sadness, joy and love".
"They lose thier ability to channel their feelings due to their brains but still have them."
"Please kiss my cheek and hold my hand and let me know that you are with me"
"PLease dont try and make me understand."
"I am confused beyond your concept, sad and sick and lost."
"I need you at all cost"
"The Best of me is Gone and I need You" "please just stay by my side until my life it Done"
I cannot imagine being unable to barely walk, or talk, but stil have feelings that I cannot express, I think if we need to let them know its ok and they arent a burden to us, even tho they are. Hang in there everyone.
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I know what you mean 54j. I've already told my sister,brother, and my husband that if I have to have a trach or a feeding tube like my dad. That I don't want that sh$#!!!!! To let my a$$ die. I would not want to put my little boy through the kind of hell me and my sister are having to live through every day. I love him too much to put him through something like this. And then to risk the chance that he might start feeling resentment towards me for having to take care of me. And that is what it has come to for me taking care of my dad. Take Care... Hugs stormy
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I feel the same way. I want out but when I do get out 4 hours a week...I worry about him. not that i dont trust the caregiver but i know exactly how he likes things. today has been really bad. I wanted to scream so much but he has no idea why i would do that. it seems like it just goes on and on. i know i will miss him but if he cant get better I wish God would see fit to take him on. I know the Bible and it says there is a time appointed for man to die. so i guess its just not his time yet but i hate seeing him like this and i am about at my wits end with only a few hours a week out. He follows me around the house like a puppy and wants me to just sit in front of him in a chair and look at him. does not talk unless he is ill about something. i dont know what its all about but i do know i dont want anyone to have to do it for me when and if i get this way. God Bless us all
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I see that you are making the same kind of comments on July 24 that you made on June 11, goincrazyinky. My heart goes out to you. I know you feel miserable.

Is it time to take some action? Venting here is fine, but it won't change your situation any.
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Inky, some of us might want to join you in a cave. It might be the only way some of us gets a vacation around here. I know there are days I wish I could find a rock to crawl under and hide from everyone... Good Luck to you!
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Inky, come back and talk to us! We care about you and don't want to think about you living in a cave. Let us know what's going on.
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Big hugs to you! I agree with the others....your husband needs to step up and help. Talk to him. Hope things work out and remember.....You are NOT alone even when you feel like you are. God Bless!
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Oh, I hear you! My fil is 95 yrs old and now in hospice. Thank God hospice, in our area, has two programs that really help. A weekly 2 hr respite volunteer caregiver (I can go grocery shopping without Papa!) and a 5 day respite where Papa will be in a facility and Hubby & I can sleep, rest, visit my sister, etc. Drawback? Oh yes, I asked Papa how he feels about the 5 day respite - he said he would be "pissed off" if we take the 5 day respite. Oh well, too bad: We are doing it!

Take care,

Evpraxia
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Hi GoingCrazy, I feel the same as you. I had to look at first to see if I posted it ,lol. If I get out, I feel better but I wouldn't want my Mom another place because no one will love and care for her like I do. Get out and take a break, when you come back you'll feel better.I am sure your husband is proud of you for your caring of his dad, I hope he is doing the bathroom issues if he is home thou. Hugs2U and your FIL
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I love what christian28 says..."I'm not starring in my own life" WOW what an eye opener. And yes! there are many different ways of taking care of our loved ones, that does not mean that WE must be the hands on caregiver, let's be honest not everyone is designed to be a hands on caregiver. I am not, especailly with clashing personalities, my own is enough for me! LOL, seriously I'm truly begining to see why my family stays away...they have enough going on in their own lives and to take on such a strong personality type like my mom...forget it! If she wasn't my mother....I'd just send cards and a prayer too.
I often wonder what would they do If my husband and I do what we want to do and move out of the country. Mom talks a good game but she doesn't play by her own rules.
This isn't easy on those who are the closest to the situation but I beleive we are all doing the best we can.
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Thanks, Lilli. when it works, its great. Humor is necessary for us to survive this dilemma of living, but also, seemingly living for someone else who used to do just fine before we came along. Or, should I say, until dementia came along, and every person in the family does not interrupt ones life to care for the person, except for the one who seems to have just that perfect psychological make-up?
Saturday after spending 3 hours with my Mother, I told her I was going to meet my husband. She said, 'You liar, you are not, you just think I'm a snot and you are trying to get rid of me." That was a partially new closing scene line. She started screaming my name over and over, had a temper tantrum, (duh), said "she couldn't live without me". Wow. On the one hand, I feel badly for her because she has nothing left and I don't think she has any idea why she is still on the planet, yet does not want to "go anywhere". Terrible fear, no matter what approach or philosophy she hesitantly embraces.
On the other hand, I, as a mature adult, observed my Mother 95% objectively, and realized that I don't want to keep putting off my own life and needs, and the needs of my husband, when there is a perfectly wonderful home with round the clock caregivers who have a passion to care for these poor souls.
I thought long and hard--could I live with myself if I did not go to bed each night before turning on a baby monitor, and sleep, or maybe not? When my own nerves are frazzled, my own needs not met, what is wrong with this picture? Gee, I am not starring in my OWN LIFE!!! My Mother is trying to hog that spotlight, too!!!
Maybe those siblings who refuse to help, refuse to answer my questions about "taking a turn", and stay away except for a few times a year would really like to tell me what a chump I am. Maybe this is one of our greatest lessons: Fix yourself.
Take care of yourself first, then see to the needs of others. That, however, does not mean you have to do it yourself. There are lots of choices out there.
Even if you are looking to "do God's Will"--He provides choices to us. Free Will. Remember? So, be a caregiver if you love it, sacrifice your personal goals and freedom, but make sure you know why you are doing it.
I do not believe that there is "no other choice" for anyone. Ask questions, investigate, preserve your life. God Bless You, and may He answer your prayers.
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I agree with all of the above, you MUST talk to your husband soon about making changes. I am not one for burying my feelings, I too feel like my life is being surpressed for my parents, mostly my mom but this is another post.
Please, please seek help to make a better and brighter future for yourself's sake. We are entitled to a life of our own!
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Christina, heh, heh, you crack me up....the direct approach is still the best...
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Lilliput has an excellent point. Your husband should be taking full responsiblity and you should only help out-role reversal. Your commitment is to your husband. We as 'caregivers' tend to over extend ourselves. I agree to s/w your husband and be brutally honest. The two of you are getting up in years and you need to be enjoying yourself and each other - besides if you move him into a HOME he might like it! He'll have allot of ladies vying for his attention - at least that was my experience when I took my mom out of one. She came to me love sick - she had a crush on someone along with the rest of the women.
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Hi Pat, Your husband is sitting in his chair, dazed look on his face, right? Looking at, but not really watching the flat screen. Walk up to him, knock on his head and say, "HELLO, KENNY--anybody home? This is not working, Sweetheart. Let's find a place for your Dad tomorrow. I'll be ready to go at 9 am with a list of 5 places. We will decide tomorrow afternoon on the best place and move him next weekend."
End of scenario. It really is simple. The key is: Make a Decision. Good Luck!!!
Hugs, Christina
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Actually, sparksta69, it does not usually become easier. Caring for a loved one with a degenerative disease usually becomes harder as the disease progresses. It also becomes harder as we are getting older and often have less energy and stamina ourselves, plus we may have neglected our own health.

So it isn't going to get easier for goincrazyinky, I'm afraid, unless she takes steps to improve her situation. Those steps can be very difficult, but they are necessary. It probably doesn't mean going to live in a cave, and she knows that. But it does mean change from the present intolerable situation.

Inky, come on back and tell us how you are doing. We care!
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Where ever we go, there we are... No matter what,we take us with us...what your feeling is very normal.. and I sometimes wonder if some of the time some of the frustration is because we are not getting help from our hubby, espceially if is HIS family member. I agree with the others,time to talk to hubby and tell him how you are feeling.. maybe two heads will be better than one. You are in my thoughts and prayers... hope you find a solution soon....
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its is ok to feel that way but people get no where when they run and give up keep on trying even when the negatives are in place think of the positive and dont give up it will all become easier lol GOOD LUCK
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I think that you should do what Lilliput suggests. I suggest a slightly different timeline. Enlist your husbands support and help. Be honest with each other about your feelings. That comes first.

Then do the research to discover all of your options, what they would cost, how they would be paid for, what financial assistance is available if that is a factor, how you would apply for it. Visit long term care facilities; see which are most appropriate and what their waiting list is like. Look into things like in-home help, respite care, etc. This research is a lot of work. While you and your husband are working on this, consider hiring someone to come in to help with FIL.

Just knowing that there are options and that other arrangements can be made should help with the "prisoner" feeling. You don't have to serve out this sentence! There are other caring things you can do for FIL besides keep him in your home and devote all your time to him. This should not be just a vague "there are nursing homes out there," but specific knowledge of 2 facilities that could take him with fairly short waiting lists.

Once you don't feel so much like a prisoner, consider what you can do to lighten the load now, with FIL in your home. Have you looked at Adult Day programs? In-home caregiving services? Someone else to assist with bathing, cutting toenails, managing medications? The adult program my husband goes to can also provide showers and toenail care right at their facility, plus a light breakfast, a hot lunch, and snacks.

I certainly hope you have a cleaning service. Unless cooking is a passion of yours, cook less and bring in restaurant meals more. High-end frozen meals are often very good. You can't do it all. Find ways to do less! Even if you decide on a placement for FIL that may not be possible or optimally on short notice. Make improvements to the present situation.

It is a toss up and each situation is different, but I think I would not discuss this with FIL until I had all my ducks in a row. I'd decide on which options I was willing to live with before presenting them to FIL.

The fact is, you are NOT a prisoner. You and your husband do have options. It is hard work to figure those options out and harder still to exercise one that FIL might not choose himself. But you obviously have strength of character and together you and your husband can do that hard work. Then make decisions and carry them out.

FIL, unfortunately, like most of the loved ones being cared for by forum members, is a prisoner of his disease. His options are limited. That is sad. But giving up your own freedom does not change his disease.

Finally, consider counseling or therapy for yourself and/or for you and your husband. There is nothing "wrong" with you and you don't need to be "fixed," but you do deserve all the help you can get with this very dificult situation.
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Btw, if you are both retired, why are you doing all the caregiving of the fil...the majority should be up to your hub.
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The clues to the intensity of your predicament are in your post: "prisoner," "running away," "give up all freedom," "live in a cave," and "I must be in trouble." It is good that you are in touch with your feelings. Many of us just drone on until our bodies tell us to stop.
It is good to come here for advice or to vent, but you need to take action and soon. Talk to your husband this evening and tell him how you feel. Tell him that you cannot commit to this life long-term and need to find another placement for you fil. Set a time line and stick with it. Find several good ALFs in the area and visit them. Narrow them down to 2 or 3. Start talking to your fil now and be honest with him. Tell him that his care is more than one person can handle in-home. Once you have made this decision and share it with your fil, do not waver.
If you have only been doing this for a short while and feel like this, can you imagine how you are going to feel in 1, 2, or 3 years?
good luck...make one change today that will help you toward your goal.
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