Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Debbie, My mother in law is in a nursing home and they have repeatedly attempted to give her physical therapy, particularly for her neck which is bent at almost a 90degree angle. She refuses and has gotten very nasty with the nice lady. One time she even punched her. At this stage, she just doesn't understand what they are trying to do to her. They keep trying--its in her care plan, but so far its been impossible. Its unfortunate because they feel they could make her more comfortable, particularly with her neck and upper back. This week she is almost non-ambulatory and was moved out of the Alzheimers unit, so I don't know what they are going to pursue as far as the PT in the new unit. She is losing her ability to walk. Hope this helps--its rather bleak for her, I'm afraid. The PT was impossible. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Vicki- I am sorry to hear about your mother-in-law and the way that things are progressing. I'm sure that the staff at the nursing home understand what she, as well as all of you, are going through and know why she's reacting the way she is. Be sure to ask if you have any questions. I know that with , they answered anything that they could answer and tried to refer us when they didn't know. Keep your faith! And remember we're all here for you... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Vicki, I am so sorry your mother-in-law is so sick and thank you for the information. What would they be doing to her to help her feel more comfortable? Debbie << From: SOUKUPS@... Debbie, My mother in law is in a nursing home and they have repeatedly attempted to give her physical therapy, particularly for her neck which is bent at almost a 90degree angle. She refuses and has gotten very nasty with the nice lady. One time she even punched her. At this stage, she just doesn't understand what they are trying to do to her. They keep trying--its in her care plan, but so far its been impossible. Its unfortunate because they feel they could make her more comfortable, particularly with her neck and upper back. This week she is almost non-ambulatory and was moved out of the Alzheimers unit, so I don't know what they are going to pursue as far as the PT in the new unit. She is losing her ability to walk. Hope this helps--its rather bleak for her, I'm afraid. The PT was impossible. Vicki >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Debbie, I believe they were trying neck and back exercises. We are in Ohio and she is in Florida (my husband is down there this weekend) and I have only met the PT but have attended her care plan meetings. Her upper back and neck are painful, she even winces when we touch her. Her neck is bent at an angle that I can't even get mine when I try. Hope this helps. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Vicki, Thank you. You helped a lot. Now I understand it. I thought your mother-in- law was in Ohio now. I knew she lived in Florida but didn't realize she was there now. Debbie << Debbie, I believe they were trying neck and back exercises. We are in Ohio and she is in Florida (my husband is down there this weekend) and I have only met the PT but have attended her care plan meetings. Her upper back and neck are painful, she even winces when we touch her. Her neck is bent at an angle that I can't even get mine when I try. Hope this helps. Vicki >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Debbie, Yes, her being in Florida is part of our problem. My father in law is devastated and really needs family support, but we are all in Ohio. He has refused to come back to Ohio because of the doctors--who in my opinion are worthless!! If we could only move them back here, atleast until this dreadful disease runs its course, we could help him and share the load. As it is, I talk to him at least once a day, many times he's sobbing terribly. Hospice has been great, but they aren't family and aren't available to comfort him at times like those. This week he yelled at me that " if it wasn't for him nothing would be done for her " and that we had done nothing. One of us (2 brother in laws, my husband and myself) have been down there each weekend. I have been down 3 times (timed with doctor appt. and tests) since August, each time for a long period (5 - 10 days). I have 3 sons so its not easy--at least they are fairly self sufficient (12, 13 and 16 years). I know he's grieving and frustrated, but we are very limited in what we can do from here. CJD is hell. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 Vicki, It makes it harder with you in Ohio and your in-laws in Florida. You are doing all you can and your mother-in-law is lucky to have such a loving family. Like you said your father-in-law is frustrated and grieving and is therefore just, it sounds letting out the frustration wherever he can. You definitely have nothing to feel guilty about. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Debbie They tried to do Physical Therapy with Steve, but it just made him worse. Could it depend on what part of the brain is affected? Beverly B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 My wife started to grab the covers of her bed with her least affected arm early in her hospital stay - nurses said to give her something to hold - so a relative gave her a small teddy bear-- she would drop it -so we tied it loosely to her wrist with soft gauze---she would not look at it but seemed to search for it and hold it most of the time--later we gave her a rolled up wash cloth for the other hand--it seemed to help having something in both hands---we put the bear in with her along with our wedding picture at her service as we knew we could never stand to keep and look at that little bear--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Vicki: If you will write to me, I may be able to help with suggestions/ideas on your mother-in-law in FL. I believe at this poiont, help form someone who has been through the CJD experience, especially another spouse, can be the most helpful. We also have very helpful contacts in FL who have experienced CJD firsthand. I would like to know the symptoms she is experiencing and how long she has been diagnosed, etc. If she is in the latter stages of CJD, PT may be of little benefit to her. I know that Dr. Hill withdrew JD's PT after his CJD was diagnosed in the latter part of January 97 because it was both frustrating and aggravating to JD. If your father-in-law will permit you, please let me have their telephone numbner and I will be glad to call your father-in-law to offer support and personal experience. Thoughtfully, Dolly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 I don't know but it sounds logical that it could. Anyone else know? << From: SBarwick@... Debbie They tried to do Physical Therapy with Steve, but it just made him worse. Could it depend on what part of the brain is affected? Beverly B >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Dolly, I will ask my father in law if its ok to give you his name and phone number. He is a very private person and may not want to talk with a stranger. On the other hand, he has never faced anything like this and is not getting a lot of knowledgeable helpfrom the nursing home--they have never seen CJD, although the nsg home doctor has seen it. Are you in Florida? They are in the Cocoa Beach area. She was diagnosed as CJD in September after initially receiving a " dementia " /alzheimer's diagnosis the last week in July. She became violent and unmanageable in late August (she wasn't sleeping and their 5th floor condo was a great danger to her) and had to be put in the nursing home just before Labor Day. At times she knows who we all are, mostly she doesn't. One of us is down there every week for a few days to support my father in law. She was hyperactive--roaming the halls in a " gerry walker " night and day. We have had to hire 24-hour care to keep her safe. She has just been moved out of the Alzheimer's unit to a regular nursing unit. She is losing her ability to walk and this past week she slept almost straight for 5 days. They discovered she has a bladder infection that is responding to Bactrim. We don't know what " stage " she is--have never seen " stages " of CJD like they have for Alzheimers. Do you have an idea? She sometimes gives appropriate responses to questions (surprisingly appropriate and/or funny) but then is gone. She has no idea where she is--she will talk about the people " across the street " or whatever. Sometimes she just babbles unintelligibly. She is on Risperdol now which has helped somewhat. Thanks for any help. I really hope my father in law will agree to talk to you. He cries often on the phone with me and I have a feeling that he will be afraid he will do the same with you. It is so hard for him to talk about her--they adored each other. I will try to tell him that its ok to cry, that you have been there. When he talks to his sons (my husband is the oldest) and starts to cry he hangs up--but I won't let him and we cry together on the phone. He is ok with friends until he talks aabout her and then he cries and hangs up too. Its such a helpless feeling being so far away. Have to go now. My boys need homework help and are getting desperate. Thanks, Vicki Soukup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Dolly, I will ask my father in law if its ok to give you his name and phone number. He is a very private person and may not want to talk with a stranger. On the other hand, he has never faced anything like this and is not getting a lot of knowledgeable helpfrom the nursing home--they have never seen CJD, although the nsg home doctor has seen it. Are you in Florida? They are in the Cocoa Beach area. She was diagnosed as CJD in September after initially receiving a " dementia " /alzheimer's diagnosis the last week in July. She became violent and unmanageable in late August (she wasn't sleeping and their 5th floor condo was a great danger to her) and had to be put in the nursing home just before Labor Day. At times she knows who we all are, mostly she doesn't. One of us is down there every week for a few days to support my father in law. She was hyperactive--roaming the halls in a " gerry walker " night and day. We have had to hire 24-hour care to keep her safe. She has just been moved out of the Alzheimer's unit to a regular nursing unit. She is losing her ability to walk and this past week she slept almost straight for 5 days. They discovered she has a bladder infection that is responding to Bactrim. We don't know what " stage " she is--have never seen " stages " of CJD like they have for Alzheimers. Do you have an idea? She sometimes gives appropriate responses to questions (surprisingly appropriate and/or funny) but then is gone. She has no idea where she is--she will talk about the people " across the street " or whatever. Sometimes she just babbles unintelligibly. She is on Risperdol now which has helped somewhat. Thanks for any help. I really hope my father in law will agree to talk to you. He cries often on the phone with me and I have a feeling that he will be afraid he will do the same with you. It is so hard for him to talk about her--they adored each other. I will try to tell him that its ok to cry, that you have been there. When he talks to his sons (my husband is the oldest) and starts to cry he hangs up--but I won't let him and we cry together on the phone. He is ok with friends until he talks aabout her and then he cries and hangs up too. Its such a helpless feeling being so far away. Have to go now. My boys need homework help and are getting desperate. Thanks, Vicki Soukup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Vicki: I live in NC.... Dolly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 This sounds so familiar! Mom also had a " fixation " with clutching the covers/blankets/sheets. The nurses rolled up wash cloths for her to hold on to. At home before the hospitalization, we had given her a " Peanut the Elephant " Beanie Baby (it is Mom & Dad's wedding anniversary - Jan. 25). She'd become really attached to it and clutched it most of the time. Re: CJD and Physical Therapy >From: DrJolyn37@... > >My wife started to grab the covers of her bed with her least affected arm >early in her hospital stay - nurses said to give her something to hold - so a >relative gave her a small teddy bear-- she would drop it -so we tied it >loosely to her wrist with soft gauze---she would not look at it but seemed to >search for it and hold it most of the time--later we gave her a rolled up >wash cloth for the other hand--it seemed to help having something in both >hands---we put the bear in with her along with our wedding picture at her >service as we knew we could never stand to keep and look at that little >bear--- > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 This sounds so familiar! Mom also had a " fixation " with clutching the covers/blankets/sheets. The nurses rolled up wash cloths for her to hold on to. At home before the hospitalization, we had given her a " Peanut the Elephant " Beanie Baby (it is Mom & Dad's wedding anniversary - Jan. 25). She'd become really attached to it and clutched it most of the time. Re: CJD and Physical Therapy >From: DrJolyn37@... > >My wife started to grab the covers of her bed with her least affected arm >early in her hospital stay - nurses said to give her something to hold - so a >relative gave her a small teddy bear-- she would drop it -so we tied it >loosely to her wrist with soft gauze---she would not look at it but seemed to >search for it and hold it most of the time--later we gave her a rolled up >wash cloth for the other hand--it seemed to help having something in both >hands---we put the bear in with her along with our wedding picture at her >service as we knew we could never stand to keep and look at that little >bear--- > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Dad was in PT 2 months before he died. I will live the rest of my life with the memory of the terror I saw in his eyes when they made him try to stand straight and walk. Once CJD has affected the CNS there is no therapy that will help our loved ones, no amount of PT can heal that portion of your brain that tells your body how to walk. I can't imagine how frightened Dad was knowing that he couldn't walk and that he was going to fall and he couldn't tell them what was wrong.... I've heard it so many times before... being trapped inside your own body. I'm all for educating the PT as to the symptoms of CJD but I think it's a mistake to think they could help the victims with therapy. Just my 2cents worth. Liz. << I don't know but it sounds logical that it could. Anyone else know? << From: SBarwick@... Debbie They tried to do Physical Therapy with Steve, but it just made him worse. Could it depend on what part of the brain is affected? Beverly B >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Robin, Your mother and other members of CJD Voice were fortunate to have family members and friends who were able to give massages and do the holding things in their hands with them . Often family and friends are unable to do this for one reason or another. Also, some CJD victims may not have families and friends. We don't find out about them because they don't have loved ones who would join a group like CJD Voice. They're the victims that we have trouble tracking. Maybe these people need a physical therapist to do the things members of CJD Voice mentioned they did for their family members and for the doctor to order this the doctor would have to write an order for a PT or whoever the professional is to do this even though other non-professionals could do it. I am not sure about liability but if a person for some strange reason were to get hurt when an aide gave them a massage I don't know what the legal consequences would be. Does anyone know this? << Sure, but there are also the aids who give the baths and change gowns. They are perfectly capable of giving arm and leg rubs too, if you ask them. We had very kind and helpful people who would have taken the time to do that. Robin >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Hi a I have to agree with Pat...it was so awful to watch Steve in such agony, the terror in his eyes, the pain on his face. He couldn't communicate verbally, but he went downhill very quickly after that..... Beverly B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Sue, It definitely sounds from what you are saying that PT has a place for some CJD patients. I am glad it is helping your father. It is probably like everything else in life. Has to be decided on an individual basis. Many people have said CJD affects different victims in different way and I imagine their ability to benefit from CJD is therefore, individual. Debbie << PAT, I TOTALLY DISAGREE! MY FATHER HAS BEEN HAVING PHYSICAL THERAPY EVER SINCE HE HAD HIS FIRST SYMPTOM AND CONTINUES TO HAVE IT TWICE A WEEK. HIS BODY GETS SO STIFF AND RIGID AND THE PT IS GREAT, SHE MASSAGES AND RELAXES HIS MUSCLES SO HE CAN STRAIGHTEN OUT HIS ARM AND HIS LEGS. MAYBE THIS IS JUST SOMETHING THAT IS FOR EACH INDIVIDUAL TO DECIDE, BUT IN OUR CASE IT IS GREAT AND WE HAVE FOUGHT OUR INSURANCE COMPANY TOOTH AND NAIL TO KEEPT IT, BECAUSE AS YOU SHOULD KNOW, ONCE THEY HEAR, FATAL, NO TREATMENT THEY ARE READY TO WRITE YOU OFF AS IT IS. SUE >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Robin, I was reading over what Judy said about teaching other staff. I imagine in that case it is covered. I am no expert and am not a lawyer but I do remember covering in a law class about people doing things within their job description affecting how it would be reviewed for malpractice were something to occur. I think what happens in the real world is people don't always think about their job descriptions if they even know them and all is ok unless something happens. While a member of the housekeeping staff may do it to be nice, I can't imagine it being part of their job description. Any lawyers here? << Boy Debbie, I have no answer for this one. Only thing I would think that the person is covered since they work in the hospital. Surely they would say something if they were not able to do a massage. I know nurses can do them too if they have the time too. Robin >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Robin, I was reading over what Judy said about teaching other staff. I imagine in that case it is covered. I am no expert and am not a lawyer but I do remember covering in a law class about people doing things within their job description affecting how it would be reviewed for malpractice were something to occur. I think what happens in the real world is people don't always think about their job descriptions if they even know them and all is ok unless something happens. While a member of the housekeeping staff may do it to be nice, I can't imagine it being part of their job description. Any lawyers here? << Boy Debbie, I have no answer for this one. Only thing I would think that the person is covered since they work in the hospital. Surely they would say something if they were not able to do a massage. I know nurses can do them too if they have the time too. Robin >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Robin, I was reading over what Judy said about teaching other staff. I imagine in that case it is covered. I am no expert and am not a lawyer but I do remember covering in a law class about people doing things within their job description affecting how it would be reviewed for malpractice were something to occur. I think what happens in the real world is people don't always think about their job descriptions if they even know them and all is ok unless something happens. While a member of the housekeeping staff may do it to be nice, I can't imagine it being part of their job description. Any lawyers here? << Boy Debbie, I have no answer for this one. Only thing I would think that the person is covered since they work in the hospital. Surely they would say something if they were not able to do a massage. I know nurses can do them too if they have the time too. Robin >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 In a message dated 10/24/1998 8:29:40 PM, you wrote: <> When my dad was in the hospital, he had physical therapy--catching and throwing a ball, balance, walking, etc. They also had therapy for speech and memory. This lasted only four days because he was mostly comatose at that point. I hadn't thought about the therapy in a long time ... it really brings back terrible memories of my strong dad looking and acting so weak. Don in Atlanta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 In a message dated 10/24/1998 8:29:40 PM, you wrote: <> When my dad was in the hospital, he had physical therapy--catching and throwing a ball, balance, walking, etc. They also had therapy for speech and memory. This lasted only four days because he was mostly comatose at that point. I hadn't thought about the therapy in a long time ... it really brings back terrible memories of my strong dad looking and acting so weak. Don in Atlanta Quote Link to comment Share on other sites More sharing options...
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