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.
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!
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.
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?
Blessings,
Bridget
"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.
Is it time to take some action? Venting here is fine, but it won't change your situation any.
Take care,
Evpraxia
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.
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.
Please, please seek help to make a better and brighter future for yourself's sake. We are entitled to a life of our own!
End of scenario. It really is simple. The key is: Make a Decision. Good Luck!!!
Hugs, Christina
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!
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.
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.