Just wanted to see if any of you had dealt with this roller coaster. My mom has been in a skilled nursing facility for a little over a year. In April, she was put on hospice due to failure to thrive and multiple TIAs. She looks terrible and we feel it is only a matter of time. However, the nursing home is calling us for every little episode- scaring me to death, so I run down there to find mom in pretty much the same state with no changes. I don't understand why they are so morose when they call. I continually think "this is it" and the emotional roller coaster is killing me. I feel the need to constantly be available to go down there- never knowing how to gauge what is serious and what isn't. I thought hospice only called when things were grave. I see her once- twice a week as it is and this up and down is taking a huge toll on me. Is this a pretty typical scenario for nursing home patients that are on hospice?

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Hi, I understand both sides. They want to keep informed just in case this is it but at the same time maybe you dont want to know every little thing, so tell them. I'd just say something like I really appreciate the care and attention you are giving to our family however, I'm losing sleep, can't concentrate for fear that each and every phone call is an emergency. Is it possible to inform me of the drastic changes? I'm really trying to keep myself together but roller coaster of emotions are tearing me apart.
Just a thought and I wish you better.
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I agree with Sumlerc, just be upfront and tell them how you feel. Since you go there once or twice a week they can inform you of things going on. Maybe they are afraid that if they don't keep you informed of any or all changes if something would happen you would go back against them? But I couldn't imagine sitting on pins and needles thinking the worst and when you get there you find it wasn't a neccessity.
Just a suggestion: My grandmother is in a home and my uncle requested a weekly nursing report so he can review things currently going on and ask ?'s if needed. Instead of recieving calls all the time at work. So maybe they can do that for you as well?
My mom is on Hospice at home, and let me tell you some weeks its a circus. Nurses, aides, social worker and Chaplin are in and out almost everyday. I know moms health is declining but I am with her 24/7 and can see when drastic changes happen. So I asked if the Hospice nurse could only come twice a week, and I declined aides to come. I also requested Social Worker and Hospice Chaplin come once a month or as needed. I want mom to be in a calm enviroment during her last stage in life with familiar faces. I know I can call them day or night if mom is bad. Hospice was very understanding of my wishes. So you will have no problem telling them your wishes as well.
Take care.
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