I feel so guilty about my mother, but I am doing all I can do.

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I recently placed my mom in a skilled nursing home due to a snowball of things that happened in very quick order. My mom lost control of her swallowing muscles about 2 months ago, and began choking and aspirating on everything she ate. She lost about 5 pounds in a weeks time and became very weak and unstable in her health. I talked with her doctors and her and we decided to place a feeding tube. She was ambivalent about it but I really pushed for it because I didn't want to see her go downhill any further. She had the tube placed and we brought her home. Long story short, I could not feed her adequately. Her stomach was slow to empty and I was spending all of my waking hours trying to bolus feed her, and then trying to work. We have a sitter that stayed with her during the day but she could never get comfortable with the feedings either. We put her in rehab where she did regain strength. The rehab people really pushed for me to take her back home. I honestly in my heart of hearts could not see myself trying to feed her 4 times a day, seven days a week. So I put her in skilled nursing. I retained her sitter who she loves dearly, to continue to be with her in the day at the nursing home. I visit her for two hours every night after I get off work, and I visit her 2-3 times on Saturday and 3 times on Sunday. I feel so bad because other than the feeding issue, she is fairly healthy. She has gained weight while there and gets around fairly well. She doesn't see herself as frail, and wants to come home. She has expressed that she understands that I can't take care of her at home while she has the feeding tube, but she thinks that she may get to remove it one day and eat again. All efforts at therapy have failed and the professionals have told us that she will not be able to eat again. I don't have the heart to tell her that the tube will never be removed. I just tell her that "it will be a good long while before it can come out". I don't want to take all hope away from her. Theres a part of me that feels I am just wearhousing her because I can't take on the 24/7 responsibility of the feedings--but I really just don't think I can do it and have any sort of life. She lived with me for 3 years before this happened. She couldn't have lived alone safely during that time. I know I have done a good job with her deep down. Yet I still feel so guilty for letting her be in the nursing home. I have siblings but they do not live close by, and cannot really be a source of help to me. Am I being selfish?

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Thank you Nanieine. I am so sorry for your loss. It sounds like you had an awesome relationship with your mom. I am sure you were both equally blessed to have each other. My prayers are with you.
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Southerngirl. I've been in your shoes. My mom was 95 and in good shape for her age. Still shopping, washing clothes, cooking. Then suddenly one day it all went downhill. She was diagnosed with Lewy Body Dementia. Her mind would go completely, then it would completely come back. Those were the symptoms. I also knew I couldn't give her the care she needed at home. I actually had a breakdown when I put her in the Nursing home. I couldn't stand the fact that I had to leave her there. It proved to be the best thing though. She did get therapy, and seemed to be doing very well. Then the dementia struck again. This went on for 3 months. On her good days she was so determined to come back home. She was even walking with a walker, and ready to be switched to a cane. By December her mouth muscles got weak (also part of this disease), causing her to asparate. By the 23rd of December she had pneumonia. Mom put in writing her wishes. No prolonging of her life. She didn't want any more IV's or needles. So, I had to call hospice. I assured her they would give her medication to make her feel comfortable, but promised her no needles. She was kept very comfortable, but she wasn't eating, and she barely wanted anything to drink. Christmas Eve was the last day she was conscious. She passed away Jan. 1, 2013. Had I not put her in the nursing home, she would have never received the care she did. I would not have been able to do it by myself. I too have a sibling, but she never helped in all the years I had mom. Now, she was visiting 2 times a week. On Friday the Dr. told us mom had about 24yhrs. Big sis said her goodbyes and all that, and never came back. (Said there was nothing she could do) The hospice nurses told me the dr. shouldn't have said that. Mom was still hydrated (they could tell by her veins in her hands). She lived 3 more days, and I stayed by her side. I would only go home to sleep, then return in the morning. Finally, sis calls and says, well if she makes it through the night tell her I will be there in the morning. New Years Eve I asked mom to please, for me, fall asleep. It was time to let go, and I couldn't stand to see her like this. I kept telling her I was there with her if she wanted to fall asleep while I was with her.. Finally I told her my sister was going to come in the morning. I said: Mom if you want to wait for her, and you want both of us to be with you when you let go, we'll be here in the morning, otherwise, please for me, let go. I'll be ok. I love you too much to see you suffer. I went home, and got some sleep. At 4:15 am, I got the call. Mom fell asleep peacefully New Years Day at 4:05 am. I miss her so much, but I am so glad the wonderful people on this site helped me to see what I was doing was the best thing, and not to feel guilt. I can only pass this on to you because I just went through it. Hang in there, and go with you gut. My sis wanted me to bring mom home, because she knew if she was back with me, she wouldn't have to come to visit as often. I knew I would crack, and mom wouldn't be cared for properly. You are doing the right thing. Stay close to this site. You will get alot of wise counsel and alot of encouragement. Hugs.
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Thanks to both of you. It is so wonderful to hear from someone else that I really am doing what I should as a loving daughter. God bless you both.
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Hi Southerngirl. Your story really touched me. For what it's worth I think you are a wonderful daughter and it sounds to me like you don't have a selfish bone in your body. You are doing what is best for your mother and you are giving her love and support. There is no room for guilt in any of that.
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Southerngirl - you have no reason to feel guilty. You have lovingly taken care of your Mom for as long as you could. I have a friend whose Mom has the feeding tube and I know I could not do that. My Mother was with us for 2 years and I just reached the point that I could no longer do 24/7 and retain my sanity and health.

You are still taking excellent care of your Mom! You have her in a safe place where all of her needs are being met and she still has her beloved daytime companion. Working full time and visiting like you do is an extraordinary task! You should be pleased with yourself and know that you are doing the very best you can. Your Mom is very fortunate to have such a loving and dedicated daughter.

I think "Guilt" is rule #1 of caregiving and we all need to let it go.

God bless!
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