Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Kathy: I just read your email. i'm so sorry to hear how rough things are for your mom. Not to mention how hard it is on you not being close enough to be there with them at the drop of a hat. I remember how horrible I felt not being closer to Dad while he was sick. Just know we are all here for you anytime you need us. Take care. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Kathy, My mother in law went through this hyperactive, non-sleeping stage. It lasted about 4 weeks. She would take " micro-naps " --about 30-45 seconds of sleep standing up. At most she would sleep for 2-3 hours and that was only every few days. It was unbelieveable to watch--really painful for us to witness. She did not have seizures. She was in the Alzheimer's Unit of a wonderful nursing home in Florida. Our solution was to hire round-the-clock aides from a temp agency to stay with her 24 hours a day. The nursing home couldn't handle the care she needed--they were understaffed as it was. We put her in what they called a " Gerry- " that supported her and had a seat. It looked kind of like a child's walker and gave her standing support. She stood most of the time and cruised the two hallways (it was a V-shaped unit with the open recreational area and nurses stations at the apex). She would run over the other residents, run into walls, etc. without someone with her constantly to help steer her night and day. It was obvious her frontal vision was going before her peripheral vision. She could steer between two laundry carts but would run down anyone right in front of her. The gerry-chair protected her and provided support--it was a life-saver because without it she would have fallen continually and she could not sit still or even stand still. In Florida it is considered a restraint-device and they regulate its use carefully to prevent " over-restraining " a patient. We could NEVER have managed, even in the nursing home, without the 24 hour care. It was very expensive, but worth it for her safety, our peace of mind and because we couldn't stay with her. We are in Ohio and it would have been impossible for my father in law to give her the care needed even in the nursing home. It also allowed us to keep her in the Alzheimer's Unit and not to be forced to move her to the regular part of the nursing home where they would have had to sedate her for all the other patients' and her safety. As long as she could move, we wanted to give her as much freedom as possible. Also, the 24 hour care allowed my father in law to leave her each night and know she had someone with her continually. He could go home and rest (such as it was with such heartache) and return fairly rested the next morning. She went from this stage to bedridden without any stage really in between. We also found she liked a rocking chair if you rocked it for her--motion again. We tried to tire her out--medication really didn't seem to help. She used to use Xanax at home, prior to CJD, to help her sleep but they took her off it for some reason (don't remember). The best thing we found was to tire her out. Fresh air helped. She also had no concept of night and day at all. I'm sorry. It doesn't get any easier, and there are no easy solutions. She died in November and it still seems like yesterday. I still can't believe she's gone. My heart goes out to you and your family. Take care of yourselves because unfortunately there isn't much you can do for your Dad but make him comfortable. Keep the questions coming. I would never have gotten through the Fall without the wonderful people here. They had many suggestions and sometimes just a lot of support--an e-mail hug, I guess. Let me know what else we can do. Where are you located? Thinking of you, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Kathy, I like your letters & I like the fact that you are a nurse. It's nice to hear from someone in the medical field & to hear your opinions of doctors. Since I was home sick yesterday w/the flu I watched Montel . The show was about intersex human beings. This lady was on. She had a son. The doctors told her he only had one testicle. They also said that he had ovarion (sp?) tissue. They wanted to change this baby to a female. The mom said, " NO WAY! " - He looks normal & he's just fine the way he is! To make a long story short, they talked her into it. They told her that if they didn't do this operation he would get cancer and/or die. Without explaining the whole show, I just couldn't believe it. My point is - get second, third & fourth opinions!! - Every doctor says a different thing! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Kathy, I like your letters & I like the fact that you are a nurse. It's nice to hear from someone in the medical field & to hear your opinions of doctors. Since I was home sick yesterday w/the flu I watched Montel . The show was about intersex human beings. This lady was on. She had a son. The doctors told her he only had one testicle. They also said that he had ovarion (sp?) tissue. They wanted to change this baby to a female. The mom said, " NO WAY! " - He looks normal & he's just fine the way he is! To make a long story short, they talked her into it. They told her that if they didn't do this operation he would get cancer and/or die. Without explaining the whole show, I just couldn't believe it. My point is - get second, third & fourth opinions!! - Every doctor says a different thing! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Kathy, I like your letters & I like the fact that you are a nurse. It's nice to hear from someone in the medical field & to hear your opinions of doctors. Since I was home sick yesterday w/the flu I watched Montel . The show was about intersex human beings. This lady was on. She had a son. The doctors told her he only had one testicle. They also said that he had ovarion (sp?) tissue. They wanted to change this baby to a female. The mom said, " NO WAY! " - He looks normal & he's just fine the way he is! To make a long story short, they talked her into it. They told her that if they didn't do this operation he would get cancer and/or die. Without explaining the whole show, I just couldn't believe it. My point is - get second, third & fourth opinions!! - Every doctor says a different thing! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Kathy, Hang in there. It is so hard and I am sorry you are having such a rough time. My prayers are with you. Lesher No sleep and worn out > > >Good evening my friends, >I spoke with my mom today. Dad has been awake for the last 48 hours. She >says he is completely wore out. He has fallen again and hurt his ribs. >although mom didn't see the fall this time either, but I think his legs >are beginning to get weak. I called the Neurologist to ask about >changing the medication around. He hasn't called me back yet. Did any of >you ever work with the medication wile waiting to hear from your >neurologist. Dr. Duntley has been so good with us, but I know that if >dad doesn't get some sleep he is going to go crazy. He is talking >completely out of his head, disorientd and confused. But still at times >he knows exactly what is happening. The seizures are bothering him so >much. Just tonight as I was talking to mom on the phone, he drop a plate >full of food, trying to move it. I think we are in for a downhill slide. >As a nurse I know what Dr.s would do to help, but I sure don't like make >decisions without talking to them first. However I did end my >converstion with my mother by telling her to increase two of his >medications tonight to see if he would sleep. >Sorry for the length of this letter, I just needed to talk a bit or sit >here and cry. And right now talking seems to feel better. >God Bless You >Kathy > >------------------------------------------------------------------------ >Start a new hobby. Meet a new friend. >http://www.ONElist.com >ONElist: The leading provider of free e-mail list services! >------------------------------------------------------------------------ >If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G at Bevalso@.... Quote Link to comment Share on other sites More sharing options...
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