My mom lived with me for the last three years. We had a caretaker during the day while I worked. Due to a malfunction in her swallowing mechanism, she had to get a peg tube for feeding. It is not anticipated that her condition will change, and she will probably always have the tube. I have found the feedings to be highly stressful for me and due to this, I placed her in a nursing home. I retained her caretaker to go to the home to be a "friendly companion" to her daily on weekdays, and I go see her for 1 1/2 hours every day after work. Her body functions fairly well, but she has a little dementia. She asks me to come home almost daily, and this is just breaking my heart. From everything the health care workers have said, I should be able to tube feed her at home, but it was simply too stressful for me. I want to do all I can for my mother, but I was not coping well with the tube feeding at home for the short time she was there. Her caretaker was also very nervous about it and would call me at work several times a day when we were trying to accomplish this at home. Weekends were nightmares, as I could no longer call on laypeople to come sit with her so my husband and I could leave home for a little R & R. I guess I am feeling selfish that I do not want her to return home. The nursing home that she is in is quite good and she is treated very well. She is currently in a rehab bed and soon I will need to make the decision to transfer her over to long term care or bring her home. I just don't feel I can bring her home and give her or myself any quality of life. Has anyone been here before? I could use some advice. Thank you.

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What would you rather live with-quilt or regret?

I went through a similar process. My Dad is in a NH. Was there for rehab then plateaued. My 84 year old mother could not care for him in their small one bedroom condo, so we opted to have him stay long term. He has been there a year now. Took nine months to complete the Medicaid application and do the spend down. Dad has nasty, angry dementia which makes it even worse. It comes and goes in waves. Some weeks he is all nasty then other weeks he completely gives up. My life is already upside down given the fact that I look after both my parents, now in two locations, with no help from the siblings. It's hard in the beginning when they constantly ask to go home.
Stay strong. You are doing the right thing. She is getting the proper care she needs in the home and you should start to have a life again.

My situation won't improve any time soon. There's hope for you, though!!



Referring to yourself as "selfish" will only compound your guilt, and your Mom is where she needs to be right now. I can't even begin to imagine the self-renewing pain you go through for 1 1/2 hours every day, and making promises you might not be able to keep hurts even more. In caregiving, these are some of the wounds that never quite heal. They run deep, and we have no choice to but learn to live with them. ... Even after the parents we loved so much are no longer with us.

Stay strong my dear lady.

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