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I was the sole caretaker for my sister (71) for 10 months, since she began hospice care. She has emphysema, terrible osteoporosis, and dystonia. I did the best I could for that time period, but I'm an older sister (74) and my health was suffering. Still is, actually. I lost 22 pounds involuntarily, and now I'm having medical tests to see why. I put her in a home with four other people, all of whom have dementia, which I think is pretty standard in the smaller homes that are somewhat affordable, at least compared to nursing homes. She is pretty much bedridden, either napping or sitting up watching television. There was no one else to be her caregiver, and she's going downhill, and the hospice nurses told me I would not be able to handle "what's coming" by myself. Now I have visited nearly every day (it's been nearly a month), to give her someone to talk with besides the caregivers. I have an out-of-town day trip tomorrow with friends as a Christmas tradition we've had for years. My sister, when I told her I wouldn't see her tomorrow, told me to think of her in "this place" while I'm out having fun. I get so annoyed, and then start feeling guilty, and I can't stand this!! I don't deserve this; it's something I had to do for my health. It would be lovely to hear from some of you who have overcome guilty feelings and how you did it. I just start thinking that she had to leave her home, her cat, her garden, all her stuff, to live in the one room at the board and care. As we were already roommates, it made caregiving easier when she started with hospice, but because we were roommates, I'm still here with all her stuff, the cat, the garden, and so on. I feel sad that I had to do this, but I don't think there was any choice. Thank you to anyone who replies with something compassionate and sensible. I don't wish to hear from people who will tell me I should have taken care of her until I dropped, after all she's my sister, and so on. You know who you are, so don't write. It won't help me at all.

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Mary, the best way to look at this is that your sister needed a higher level of care. You are doing the best for her, she is safe, and being well cared for in her group home.

It isn't unusual for people who are growing old quickly compared to others, to complain. They can no longer hop into a car and drive to the mall. They can't go to the movies, or even go for a walk. Most of the day there is some ache or pain. They wish they were young again. If that was me, I would be grumpy, too. Was your sister a smoker by chance? If so, she probably regrets it now, but has to lash out at someone.

Having guilt is part of being a caregiver for a relative. We all have it. For me everything became extremely stressful. Here I was 70 years old and trying the best I could to deal with two very stubborn parents in their 90's. It damaged my health, too.

What is nice is that now your sister is in a safe place, so you are free to do what you want... that is if your brain allows you to be free... I would go through all the "what ifs". Yep, guilt was renting space in my mind, and I couldn't evict it.

Enjoy that day trip with friends, hopefully they can help take your mind off of the guilt.
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You are braver than I am . Ten months, wow, I wouldn't last ten days. You have no cause for guilty. You did a lot more than MOST sisters would. Think of her in her garden and tell her that is how you will always think of her.
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Mary, you are a great sister. We all feel guilty.
It's not your fault that she is very ill and needs special
care that is best left to professionals. Now you can enjoy
a visit and not feel exhausted.

I agonized over placing my parents. They have been happily
married for 59 years and love their home. They have different needs
so I had to place them in separate facilities.
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Remember life doesnt stay the same. Each day is different. Think of all the good times you had together. You cant go back but maybe each visit recall w your sister fun things. It may place them in her mind so she can be happy along w you. Pics of fun times. Sure wish we could go back but only memories now. God give you peace.
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Great advice from mlface! Your role has changed -- you're now the emotional caregiver, leaving the physical care to a team of caregivers. Guilt is normal because you love her. Two years ago my mom was living with us and we lasted 2 months, then realizing we were ill-equipped to meet her needs. She was first moved to Assisted Living & now is in a Nursing Home....and I still feel guilty we couldn't be like the Waltons & have her live with us. You're doing what's best for both of you. Enjoy your time with friends and other outings; it will make you a more relaxed & happy sister. Hugs to you.

(BTW, loved the boundaries you set re replies.)
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Mary You should feel very proud to have taken great Care of Your Younger Sister for that ten months, but sadly Your Sisters Health is very poorly, and She needs to receive specialised Care from highly Qualified and Trained Nurses & Staff, and Doctors also. Remember the single most important Person here is You, as You have great Health, so enjoy the rest of Your Life..since You have NO Reason to feel guilty, and PLEASE DO NOT ALLOW YOUR SISTER TO MAKE YOU FEEL GUILTY....Remember She's being well Cared for, so enjoy Your Christmas Trip with Your Friends Mary and have a wonderful time.
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I think you need to step back from this situation WHICH IS NOT YOUR FAULT even more. A visit twice a week instead of daily would accomplish a lot. One give you time to regroup physically and mentally. Two give your sister time to reflect and realise (maybe) that you have done more than enough and have a chance to miss you. Three dont succumb to emotional blackmail such as her comment about your day out. With my needy parent I have to keep reminding myself this is the Only Life i get too and I HAVE THE RIGHT TO LIVE IT, GUILT FREE. Hugs.
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From a man's point of view, the answer above at all great. We had to put my wife's mother and father in assisted living, with both of us working and with them living a good 45-minute drive from our home; there was no way we could care for them properly. We offered to move them here but they refused to leave their hometown.
Older people (which I am one of, 71) want to keep their independence, but I even realize that sometime in the near future I may need to move into a assisted facility. Right now I am in great health, I still do all the yard care, gardening, taking care of the house. I will admit I am slowing down, I have started developing OA and at the time it is very painful.
Don't feel guilty about sending her to a assisted care facility, you are doing her a favor and yourself a favor. She is going to make you feel guilty, just like my wife's parent did her. They got over it, they got great care, they are with people their age.
I think men and women think differently. Men seem to be less emotional than women. It is natural for women to be compassionate.
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Sky high makes some good points. When I moved dad to assisted living at first he hated it and asked why he was there and whose idea was it!! Finally though he adjusted and now he's very happy there and often says so. Guilt is really not what you should feel because guilt means you did something wrong. Which of course you didn't! It's not YOUR fault she is ill and needs specialized care. Do you wish it were different...of course. That is where I think what people call guilt...is really wishing they could make a situation different but they can't. Wishing it were something other than what it is, in other words. First..believe that you have a right to have a good life and to enjoy the years you have left. No one can make you "feel guilty"...only we can do that. This is where setting boundaries come in. Your sister is encroaching on your boundary that you set when you said "I'm going out with friends and won't be visiting ". I know I always bring up boundaries but it's where being healthy in a relationship begins. I would not visit her every day either as Skyhigh said. Try 3 times a week so she gets used to time without you. Think of it as doing something for your mental health. When I think I need to see my dad because I'm thinking he wonders where I am...I remind myself that he is safe, cared for and is happy there. I visit him weekly. Sometimes more if I need to take him to a doctor etc. so please realize that life deals us a hand and then we decide how to play it. Your sister has choices too. Enjoy your life...blessings
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Mary, your story is quite touching. You certainly are a loving and caring sister. My goodness, so much devotion is impressive. You know you did the right thing regarding your sister's care. I hope you enjoy your trip.

Wouldn't your sister want that for you? While I am healthy now and expect to be for a good long while, I've instructed my family to not cause themselves physical and mental overload by trying to care for me in the home, if the day comes when I am very ill and home care is not feasible. I prefer that they live their lives and then come to see me rested, healthy and anxious to visit. To me, that's how you show love.

We all do what we can. I think we must give ourselves permission to feel comfortable with our decisions. When I placed my loved one into Assisted Living, I was very proud. I knew it was the right thing and never felt guilty. I would have felt guilty in not getting her the care she needed. I hope you find peace within.
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As with any type of charity, you have to have your own home, life, and health in order before you can effectively help someone else. You did a lot for your sister for a long time, and I'm sure she is grateful for that, on some level. Don't feel guilty; feel proud and accomplished for what you were able to provide for her, and know that she is where she needs to be to receive proper care. I am sorry that you are going through this, and I'm also sorry that your sister is terminally ill. Please make sure you express your love for her freely and often.
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Ask yourself these questions.
Did I do the best that I could for as long as I could?
was I putting her in danger by trying to do things that I could not or should not do myself?
Was I putting myself in danger by doing things that I could not or should not have done myself?
Can she now get care 24/7?
Are the caregivers now working in shifts so that they are not burnt out, angry or frustrated? (O.K. maybe they are..)
Can I now be a loving caring sister and an advocate for her.
Can I now visit and spend quality time without having to change a brief, change the bed or feed her unless I want to.

You can now care for her in a more gentle way and you can care for yourself.

And the all important question would you have wanted your sister to care for you and put her health in jeopardy or would you want to be where she is now so you can be sisters and not caregiver and recipient.
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I took care of my mom in at home until I couldn't physically and mentally do it anymore. I placed her in a nursing home. I thought her life was near an end as she had become very weak very quickly. They were able to diagnosis the severe anemia causing the weakness and treat it. Despite this, I knew that I could no longer provide the care she needed. She is in a very good facility which provides wonderful care. I place her in August 2015. I visit daily, but still feel guilty. I cried almost everyday when I left. She added to it by begging to go home. She has times where she gets angry with me and it tears me apart. I have finally realized that I have to take care of myself. I have a group of friends and we get together to quilt once a week. We are all caregivers and support each other. It took almost a year for me to go out with friends if it was during my regular visiting hours. Even though you have placed your sister, you are still her caregiver advocating for her. Find other caregivers that you can talk to. Even this site helps, when you read others' posts and think," oh, that sounds like me." Hang in there. You did the right thing. But don't forget to take care of you!
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I'm still in the role of caregiver with my mom who lives with me. The question you ask is so personal to each and every person/caregiver. We have to realize what our own limitations are. We have to realize that we are given one physical body to work with for our entire life in this world. We have to realize that we have to take care of ourselves first and foremost. Of course, I feel I owe my mother but I also feel grateful to have the opportunity to give back to her. If/when the day comes that she needs to be placed, I know I can tell my inner voices that I did everything that I could. That's all anyone can do. I believe you did what you had to do from reading your post. I believe you are a kind, loving and compassionate person. I believe your sister is grateful for all that you have done and continue to do. The guilt is a natural human instinct and it probably will not go away. With that said, you have to believe that you took your sister's care as far as you could mentally, physically, and spiritually. So give yourself permission to be okay with your decision. Why? Because it is okay. Be aware of your internal dialogue, you know those little voices that go back and forth in your head. That one voice that keeps asking "Did I do the right thing?" Keep answering "Yes, I did the right thing!". Overtime the guilt will get better but don't be surprised if the guilt sticks around. Just tell it to go sit in the corner. No, I'm not crazy, but my little voices can be pretty loud some days. Keep supporting your sister emotionally and keep loving your sister. Let her know that and no matter what she says, believe that she loves you for everything you have done. Take care.
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Mary - you are being entirely too hard on yourself. There are millions of caregivers who have done just what you did and can find some ray of hope for themselves. Go away, have a good time, and it sounds like your sister knows how to push your hot buttons, but let it roll off your back, in one ear and out the other. When your own health was in jeopardy, you did the right thing having professionals taking care of your sister. I think that was the best possible way you could have gone. Would you rather have suffered, died, and then your sister would still be alone? You are a credit to your sister having taken care of her, and when you return from your trip, maybe take the cat to see her (if it is allowed) or her favorite plant. She will die, and you can be assured you did the best for her in the end.
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I like what "Sunny girl" said ... would ur sister do it for you. If my sister was still living, we were also four yrs apart, sh wouldn't have done for me. I am 67 and had my Mom here 20 months 24/7. Physically I couldn't do it and in time that would have been worse. I found an AL right up the street. I go for a little while every day. She can't hold a conversation so it's not much more than a half an hour. I have taken a small vacation and just recently, after 4 months, have had a couple of days I didn't go in. All the responses are good ones. If u haven't already and with ur sisters mindset, u need to explain that at 74 you just can't give her what she needs. It's out of ur expetise physically and mentally. That u feel you've put her in a safe environment with good care. Also, if she is going to try the guilt trip on u, I won't visit. I assume ur sister was a smoker. She chose to smoke knowing the consequenses so here she is. None of us know how long w r going to be here, enjoy your life. A day out with the girls is a great boost. Hope u enjoyed yours.
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From another man's point of view....

You have gone way above and beyond caring for your sister. The above responses are spot on. I put my mom into Adult Foster Care a week ago and am battling tremendous guilt. Every time that happens, I remind myself that my wife and I did the best we could for her under the circumstances, and that we are still there as her advocate every step of the way. In my case, I still have to work because we need health insurance, so mom's care was falling almost completely on my wife, and it was flat wearing her out.

My mom did the same as your sister.....she gave us a couple of large helpings of the guilt trip (I'll be with others who "aren't wanted"). I admit, it stung....pretty hard. But the truth is I have two siblings who have done close to zero for her over the last 20 years....and her care has fallen completely on the wife and I. I responded with "Mom, nothing could be further from the truth. We care about you deeply, we're just in over our heads and need help with your care. We love you a lot and want what's best for you.". That seemed to strike a chord with her.

Much love to you and your sis. Take the time for your annual event and enjoy it. You deserve to be happy.
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I takes care my husband ten years now, since he diagnose lewis body and parkinson's, I had the same guilt feeling when I place him in a care home while I was away for vacation. I am still takes care him at our home every day. My health starting to failing, I am thinking about care home again, it's very hard to made that decision without guilt.
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Mary, people who are sick become thoughtless and selfish. Try to brush this off and realize that your sister can't help her mean-spirited response to your taking some time for yourself, but don't allow one minute of guilt! You have more than done your share - you've damaged your own health. She needs more care than one person can give and you've found a way to provide that.

Go to your traditional event and have a great time! You deserve all of the wonderful times that you can get.

When you talk with your sister, let her know that you have to take care of your own health as well as hers and there are things that you must do to accomplish that. Be with her when you can but don't feel guilty when you are not.

Blessings,
Carol
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This is one of the best conversations I've seen on here! So helpful to me!
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Mary9999, don't let your sister guilt you into feeling bad for wanting to still enjoy yourself. Care giving is a drain on us physically and mentally. You found a care home and she will be looked after. Make time for yourself, only visit every other day, take time for your mental and physical health. Tell her you have doctor apptmemt, or dentist or eye doctor. Or bible study, or psychiatrist, irshopping with friends. Live you life and don't let her bully you into feeling responsible for her well being. You've done a great thing by helping her this long. Some people just don't want anyone to have fun.
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Mary.......I sure can relate as it is my husband I am having to have taken care of in a formal institution and he hates it....I feel so much guilt, but also know that he could have come home had he tried some things, but life is what it is so he is about to be dismissed from the skilled nursing home and I plan to put him in a residential facility. I am wracked with guilt and worry, but I am actually 78, 6 months older than he is, and I just can't do everything anymore. And yes, my personal health has taken a hit, but I don't have time nor help to do anything about it.....all the family lives far away......
Your sister will be OK....you need to take care of yourself....as I know, it will be hard, but know your sister is in a good place and then relax and care for YOU.
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Mary - you did the right thing. Caregiving was affecting your health. I took care of my mom for 2 years - she has Alzheimer's. During that time, I ended up in the hospital and then had back surgery. I wasn't recuperating as expected and was told that the stress in my life was preventing me from healing properly.

What an eye opener that was. Stress does affect our health. I placed my mom in a memory care facility this past August. To this day, I feel guilty. Should I have waited etc. etc. But mentally and physically, I was done being a care giver.

What helps me is I remember that it is not my fault that my mom is in the situation she is in and that she refused to plan for the future. Same goes for you. The way your sister's life has turned out is not your fault. She could have made plans for what she wanted if the situation came about that she needed more care (many people do), but she did not. You like me, did the best we could. I also think about how my dad died at the age of 67. You never know how long you have; please go and enjoy your life.
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Mary, i have some of those same "conversations" with myself, even though my dad passed on in 1989. His doctor told us he could no longer live alone, so i came during the summer from 2 states away to find a solution. I found a retirement hotel in the next suburb over and got him there. 3 meals a day and health care as you need it. He could afford this out of his monthly retirement income and he was safe. He was on a downward track, though, with no stopping his decline. But, did we do the right thing? I still think "yes." His church, friends, and medical care were all there. He had made himself persona non grata with most of his children.
We can wish there were a better solution, but if there isn't, we shouldn't load up on guilt about that. You have done far more than most of us have. I was content that his morning start-the-day caregivers were with him when he passed, so he wasn't alone. That struck me as being as good-as-it-gets in that situation. If she brings up the move and tries to guilt-trip you, I would tell her that I wish it were different, as well. I wish she hadn't declined as much as she has, that I were younger and stronger, etc., but that I am grateful for the place I found for you and the care you receive here. They know how to do this better than I do. I would hope that would address any lingering guilt head-on and alleviate those feelings. I wish you all the best.

I also pray for God's guidance in the decisions I have to make for my friend over whom I am the POA. Sometime that comes as a fresh insight, new idea, or meeting someone who has a suggestion or answer. This "community of strangers" on this web-site provides some of the help I need figuring all this out. I hope it helps you, too.
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Mary, please don't feel guilty. You should NOT! You are the older sister, and my guess is that you have been looking out for your 'little' sister her whole life. You still are. You did what was best for both of you. There is NO shame in that. If something had happened to you, she would have no one (although she's probably not looking at it like that).

Don't let her make you feel guilty. Let her know that she doesn't have the right to "play the guilt card". She is where she is because you LOVE her, not out of convenience. Period. Good luck! We're with you!!!!
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I can't add much to all the wonderful, compassionate responses already here, but during year two of caregiving for my parents (both with dementia), I realized that the guilt and resentment was affecting my body language (as well as my health). Very subtle, but Mom picked up on it easily. I HAD to let go of the negative stuff and turn it around. As soon as I did, her energy changed too. If you look at it this way, it's a win-win. When you come to visit in a relaxed and happy state of mind, her mood might reflect yours in a positive way. Deep down inside, she wants you to be happy. She might even be suffering from guilt herself. We're not all as self-aware as we could or should be....
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Just because you are no longer your sister's hands-on caregiver, doesn't mean your role is any less important---it is just different. You are now her advocate ----to see she gets the medical care she needs, to help her make necessary medical decisions and to be there to love her. Not any less important roles, just different. Remember, if you don't take care of yourself, you won't be able to be there for her.
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I am just amazed at how many thoughtful compassionate responses I received. This is such a great resource for so many issues. I hope all of you who wrote who are still struggling with care giving, or with guilt on occasion, can find some peace. I am very grateful for everyone who responded. Knowing so many wise and caring people are out there is absolutely heartwarming. Thank you so much.
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Mary you can't do more than you physically or mentally capable of doing. You have nothing to feel guilty about. Caregiving is exhausting. You will be more rested when you visit her. Tell your sister how much you love her. Visiting her is important. Sounds like she might be bored. Can you find some entertaining things to do when you visit? When I was taking care of my dad we didn't have many visitors. The days were so long. It seemed as if people have forgotten us.
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Reading each of these responses, I feel we have all have realized we are not alone in these situations. What I'm feeling is the same as others. I visit my mom every day. On her bad days, she knows all the buttons to push and ignites the guilt trip. I found what that happens, I am better off leaving the nursing home. The one thing I never fail to do, even if I'm angry because she has upset me, is to give her a kiss and tell her I love her. I know deep down she knows it. Mary, are there activities where your sister is? Maybe you could help her make a little container garden in her room.
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