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So sorry to read this. What happened? Did she get twisted up in her sheets (happened to my mom once) or slip while trying to get out of bed? How is she now?
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She has PSP a very rare desease, that affects motor skills, vision,and swallowing, only 1 in a hundred million get this. So rare not much research has been done,there is no cure, and no meds to help it! No dementia either so she knows she is progressively getting worse.........She will not ask for help,and with this desease it is a must! there is a call button right beside her, and she wont use it, she knows shes taking risks with her life continuing to try to do things alone, also she will NOT go to any activities, at all! She is like hermit, everybody is too old, or too dumb for her to associate with. Which I think is reallly just a defence mechanism to prevent getting hurt....She got a whole lot of stitches in her head,and now resting peacefully for a change back at the facility,as now they have finally changed her pain meds again, and these seem to be working, she was constantly in pain, the desease has thisweird way of stiffening up the upper torso as well, the neck and shoulders,and is very painful for her to move that area, but she is bullheaded and strong willed bigtime, and wont let any one but me help,but when I had her at home a month ago, she was manipulating me, treating me very mean, and just wouldnt listen, and kept falling here too..........the nuerologists then made decision that she had no choice but to go to a SKILLED NURSING FACILITY, as keeping her at home was not a safe option anymore,she also has dysphasia, where her food needs to now be pureed, no more regular liquids, only drinks with a powder called thicket in them,as if not, there isa huge risk of her aspirating, getting food and liquids in the lungs, that will cause pnewmonia.I am so suffering having to watch her suffer, I am not faring well through all this well at all,as mom is all I have................hope this makes things a bit clearer,,,,thanks for caring................
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susan: so sorry to hear about your Mom. I too, have been trying to figure out the best placement for my Mom who currently lives in her own home. Not many good options out there, right?
After spending two nights running back and forth to the ER and spending several nights with Mom, I am exhausted. Mom, too, is starting to have trouble swallowing - and like you, one thing seems to happen after another. I cannot keep up. I also hate watching her go through this (last night, it took the ER doc FOREVER to give her a pain shot.) I had to sit there and watch my mother cry in pain while I tried to track down the nurse. Horrific!!!
I know medical people have to be dispassionate about pain and suffering, but this is not THEIR Mom so I continue to advocate for her even though it is taking its toll on me (MANY other things on my plate right now...when it rains it pours.)
I finally realized last night that no matter how much I do, her life (like mine) is in God's hands. When it all gets too much for her, she will be called home. There is a little bit of comfort in that.
Take care....try to rest...
Lilli
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HI Sue, thanks for the hug, I do not know what I responded to thou so can you brief me again? I cant believe your Mom was send to a place to be "safe" and she fell. Unreal, I would get another place or do something, thats so so sad. Write me please.
Luvmom
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Susan, when I visited my mother-in-law in the nursing home because she had fallen and broke her hip, it occurred to me that being in your 'right' mind and having to live in a nursing home would be awful. There were people there, like your mother, who had physical problems but not necessarily mental issues that lived there full time, some were pretty young too. Those people were in a different wing kinda, and not around all the wailing and crying that I heard. Can your mother be moved somewhere within the place that will put her around more 'normal' people? I was thinking then she might want to socialize a little more. As for my m-i-l while she was there, she also tried to get up and walk by herself to the bathroom, but she would fall. And she had a broken hip for Heaven's sake! They had to tie her into the wheel chair for awhile till she finally got the message. She did however get to the place that she would wheel herself around that place over and over again. They all knew her by name before she left there. She can walk fine now (for someone 85) but she really liked having a little independence that that wheel chair gave her. It's all in our attitude I guess. Not being able to walk by herself is a pride thing with your mother. But if she would get in that wheel chair and start exploring for herself, then she'd feel less confined. Can she still do her artwork? If she could, then can someone set that up in the common room for her to wheel herself into and do it? I think she needs something to look forward to, we all do for that matter. I would tell her that her pride is holding her back from having more independence and NOT taking advantage of something simple like a wheelchair.
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Susan,
So sorry this is painful for you and your mom.
The NH should have an alarm on the bed that they can activate to go off if your mom leaves the bed. I know this would be possibly humiliating for her, but may prevent another painful accident. I see the alarms used often in these situations if you can sell her on it.
They also have safety rails which can be put up. Another unwanted device, but she may be scared enough to want them now.
Sad how something bad happens before these safety measures are taken. Our pride gets in the way I suppose.
GOD be with you always.
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