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This is long, I apologize. Mother, 83, has had decline in mobility due to obesity, feet deformities and knee surgeries, arthritis, and missing ribs and scapula from surgery as a child. She had chemo, a stroke, and a double mastectomy in that order. She has the beginnings of dementia. She has always been bossy. She has Lymphedema in her arm which requires a daily massage and a compression sleeve during the day. When she was getting OT when she first went into the SNL those therapists did it, but not as a part of what they were ordered to do, just as a favor because they knew staff didn’t want to do it. OT finished, and for the first month after that, staff didn’t massage, despite having doctor’s orders and having the doctor talk to the staff twice. Now there is a sheet in her room where staff is to write when and who did the massage. Over the last 26 days, she was massaged 14 times, and all but 4 in the afternoon (should be in the morning). I called the director and she said Mother has been telling staff she wasn’t ready, come back later, and then calling the desk at random times to say she was ready and to come massage it, expecting them to come immediately (unreasonable) We had told the SNL, and I told them again to PLEASE let us know when she refuses so we can talk to her. Now the director says she will call us when staff reports that she is refusing the massage when they come in. This behavior is not out of character for her. She has always wanted what she wanted when she wanted it. I am going to tell her that if she wants her Lymphedema under control, she will need to accept the massage when they come to do it, otherwise nothing can be done. I don’t think staff tells her anything like “it is getting bigger, we need to get it under control”, probably because her response would be she knows better than they do (she was a nurse practitioner on top of being bossy and has said this on other occasions). An electric air pump sleeve costs several thousand dollars and isn’t covered by Medicare but that would be the only option that might help because no massage is really required, but somebody would have to put it on her. She has said that she only refused one time. At the time she told me that, I said they will take come back later as a refusal. I describe her attitude overall as being “in it to win it” regardless of the outcome.

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By law Mom cannot be forced to do what she doesn't want to. Those aides have other residents they have to move onto and other duties so there may not be another good time for them.

I would wonder though, if they are asking Mom "Are you ready for your message?" and the answer is No. I had this with Mom, if you asked a question the answer would be No. I told the aide, don't ask just do it. With your Mom I would just say "time for your massage" if Mom says no "if you don't have it now, I may not be able to get back". If Mom says no, then the aide goes to her next resident.
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Does your mom know/understand what the problems will be if she refuses the massages? Can you tell the staff that they need to be a little more assertive? For example if your mom says it's not a good time, can they tell her this is probably the only time someone will be able to come down today so it would be a good idea to do it now. Do they give her any advance notice?

Once you try one or two more things, you are going to have to let it go. Sooo many people could care less about doing the things they really should be doing to help themselves. There's only so much you can do. You've already done a lot so don't drive yourself crazy over it.
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The lymphedema may never be in control. That's the sad truth of it. And if she is getting the massage 14 of 26 days she is already getting much much more than your average breast cancer survivor would get covered by her insurance. She would be lucky to get once a week. I hope you can improve her attitude but you may not and the sad truth is that it may do no good if you do. I sure wish you the best.
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