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AnOnlyChild Asked June 2013

Mom has fractured kneecap (completely fractured in half from osteoporosis) and does not want surgery at 91.

She and I are afraid that is she stops her meds before surgery (aspirin, Celebrex among others) she may have a recurrent mini-stroke or more seizures or that the anesthesia would progress the dementia, if she even survives surgery.. She has chosen to be fitted for a brace instead. She tells the nursing staff (she is in a nursing home) she is in pain (8 out of 10) but sometimes refuses pain meds (Ibuprofen and Tramadol, and a knee patch for pain). She is immobile and was in a wheelchair and only transferred to bed or commode even before the fracture. She sometimes refuses to eat (1 or 2 meals daily) and also has dementia (relatively mild). Some days she cries and sobs almost hysterically (she is already on anti-depression/anxiety meds). Hospice has turned her down twice now because she is on PT (only to try to get her to stand enough for transfer to the commode with full assist). What next? Do I back off and let her be as she is, do I try more "forcefully" to get her to eat? So frustrating. She was declining and on a pureed diet, had problems chewing and swallowing but "recovered" from that episode and is now on a regular diet as far as food, but still on nectar instead of liquids. Occasionally she will not respond to open her eyes and cannot use the call button but then this passes in less than an hour. Seems like her end-of-life issues come and go, worsen then improve dramatically. Has this happened to anyone else and what do you do on this roller coaster (she has no other children and my Dad died 13 years ago).

Perseverance Jun 2013
They don't sneak the medicine into applesauce. That is illegal. They tell my Mom what they are giving her and why - every time as my Mom hates medicine - always has.

Regarding eating, I've learned my mom will eat when she wants to... and I have to accept that she just may not sometimes. Yes, I think she misses normal food, but pureed food is her only option as she has dementia and difficulty swallowing. Her body is not moving much these days so she burns fewer calories.

vstefans Jun 2013
Well, YOU could sneak a little Tylenol into her food if you want, as long as you are a good sneak. Refusing pain meds is pretty irrational...is she actually competent to refuse care? If she is, maybe she could tell you what meds she is afraid of and why. It could even be that she does not hurt if she does not move, and does not realize that just not moving is not a good plan. There was thread on here where someone was refusing meds simply because one of the ones they were getting gave them horrible side effects and they could not be sure it wasn't that one. Will she drink milkshakes? Does it maybe hurt to swallow - a lot of people have some reflux or gastritis and it hurts, but they won't tell you they have heartburn or spasm and it may not occur to anyone to try a little acid blocker, Carafate, or even just a little Pepto Bismol which may relieve it. My mom once just started asking people to raise the head of her bed instead of telling them her reflux was back after her PPI was inadvertantly stoped. Just letting someone stay in constant pain, which may be what's making her cry, does not seem like the best idea. The antidepressants they may be using may actually make stomach/espohagus-related pain worse too. I hope there is some help for her - it is awful for her to have to feel so bad, and awful for you to have to watch and be unable to relieve it!

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joycews Jun 2013
People who are elderly tend not to eat as much as do those who are mostly sedetary. They just do not do much to burn up the calories/energy and need more food. I know several adults who only eat one meal a day.
She seems to have made her wishes clear. I learned many years ago, they are going to do what they want to do. Let them be, offer help if they ask and as you said in your post -- ultimately it is her choice. Good luck and hugs.

AnOnlyChild Jun 2013
Thank you "Perseverance"; the doc and nurses say Mom has the right to refuse medicine and food and will not "sneak" medication into her applesauce or pudding. Hospice evaluated her but since she is getting some therapy to learn to stand again just for transfers, they will definitely not become involved. Yes, I have tried to feed my Mom, especially when she was on pureed food and kept dropping it off the spoon; but even then, she refused help saying "I'm not a baby". She even gave the aides "heck" saying they did not put the spoon just right into her mouth, they were too fast or slow, any excuse she could think of that day. She seems to eat one meal a day, saying she does not like what they give her (they give her what she asks for at breakfast, and she always has 2 choices at lunch and dinner). Today she ate lunch, but not breakfast. The staff thinks I should not visit often as Mom gets upset and starts argument with any family who visits. My granddaughter who graduated from high school visited her two days ago (she lives 3 hours away but was visiting here). Immediately my Mother said "Congratulations. Why don't you call me? Why doesn't you Mom and Dad call me?". Whenever my children and grandchildren call, she always gives them heck and does not understand there busy lives, and does nothing but complain the entire time....hence, they don't want to call her. I had to cancel her appt. with her retinal specialist (she has macular degeneration in both eyes, and not much vision left in the right eye). Her doctor and no other eye doc will see her in their office since they cannot accommodate a patient on a stretcher. I tell her that she needs to work with PT so she can at least get back into a wheelchair and get to the eye doctor. Hopefully that will motivate her; if not, well I would not want to be here at 91 in her condition. It is her choice at this point. Thank you for listening.

Perseverance Jun 2013
My Mom shares some of your story.

The NH now smashed up her medicine into applesauce in order for mom to take it. I suggest you doing the same for your Mom. Is your Mom on hospice? Also, I've been told that when I feed Mom, she tends to eat more. Do you ever help with feeding?

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