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Mary9999 Asked December 2016

I need to hear from former caregivers about how to quit feeling so guilty for putting my sister in a board and care home?

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.

EXPERT Carol Bradley Bursack, CDSGF Dec 2016
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

freqflyer Dec 2016
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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kdcm1011 Dec 2016
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.)

pamstegma Dec 2016
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.

wvavet Dec 2016
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.

Harpcat Dec 2016
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

Marylou68 Dec 2016
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!

LorrieB Dec 2016
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....

yogagirl Dec 2016
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.

mlface Dec 2016
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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