Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Well, didn't make it to the parade after all. She's had SUCH a great week...then this morning her roommate was in the bathroom and my mom couldn't get in, and had an accident in bed. This REALLY upset her, she was furious with the aides and her roommate, and probably herself, and of course it totally ruined her morning. The aide went in to change the bed, and my mom was so embarassed that the aide " accidently " knocked my mom's water glass into the bed, then apologized all over the place while she changed it...I thought that was so nice! I talked with her quite a while when I went to pick her up, and she was insistent that she wanted to just stay there and not go anywhere, so we sadly had to leave her behind. This really set my mom back. It was traumatic for her, she's never wet the bed in her life. But it really ruined her day and she didn't want to go to the parade after that. But the staff did a lot of one-on-one with her today to try and work through it, because I told them I wanted to bring her over for a cookout later so the whole day wasn't a waste, and they said they'd work with her and try to get her in a better frame of mind so she'd want to come over. The parade went REALLY well, fantastic in fact . But I kept thinking about my mom and worrying about her. During the time I was playing my cell phone rang, and it was her. She left a voice mail message that she was very angry that I'd gone to the parade without her after she'd looked forward to it all week, and if I ever wanted to see her again I'd know where to find her. In the background I could hear the nurses saying, " Oh , please don't talk that way to Sherry... " Apparently she'd forgotten all about what had happened this morning, and that I'd been there and she wouldn't come with me, and just got very hurt and angry that we'd been excited all week about doing this parade together, then I went and left her behind... I waited until just before suppertime to go see her and invite her over for dinner, so I could give the staff as long as possible to work with her. (They usually do a much better job than even I do at helping her get past these emotive periods.) When I got there she said they were having waffles for supper and she wanted to stay, but could she come over after supper? and of course I said yes, and we waited for her to finish. She spent about 4 hours here, first we went for a drive around the lake (we live a few blocks off the largest inland lake in Michigan), which she thoroughly enjoyed. Then she came here and played with the dogs and the parrots, and played her digital keyboard which we keep here for her...she had her cigarettes whenever she wanted one, and her DC's in the fridge...more like home, and she was very relaxed. But VERY forgetful and even confused at times, and delusional. Her traumatic experience this morning really put an end to her wonderfully aware and lucid and positive week. But one of the funny things she said was something about the nurses trying to take her " Lewies " away from her, and that they were HER Lewies, and they couldn't have them! Tomorrow we're going to take her out for ice cream, if she's up for it; I left her with that thought when we dropped her off tonight at 10:00ish, so she'd have something to look forward to. His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Sherry, So sorry didn't get to enjoy the parade. Sounds like a nice day anyway. And ice cream will be great tomorrow. I am sure this too shall pass. Glad you had a good parade. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. the parade Well, didn't make it to the parade after all. She's had SUCH a great week...then this morning her roommate was in the bathroom and my mom couldn't get in, and had an accident in bed. This REALLY upset her, she was furious with the aides and her roommate, and probably herself, and of course it totally ruined her morning. The aide went in to change the bed, and my mom was so embarassed that the aide " accidently " knocked my mom's water glass into the bed, then apologized all over the place while she changed it...I thought that was so nice! I talked with her quite a while when I went to pick her up, and she was insistent that she wanted to just stay there and not go anywhere, so we sadly had to leave her behind. This really set my mom back. It was traumatic for her, she's never wet the bed in her life. But it really ruined her day and she didn't want to go to the parade after that. But the staff did a lot of one-on-one with her today to try and work through it, because I told them I wanted to bring her over for a cookout later so the whole day wasn't a waste, and they said they'd work with her and try to get her in a better frame of mind so she'd want to come over. The parade went REALLY well, fantastic in fact . But I kept thinking about my mom and worrying about her. During the time I was playing my cell phone rang, and it was her. She left a voice mail message that she was very angry that I'd gone to the parade without her after she'd looked forward to it all week, and if I ever wanted to see her again I'd know where to find her. In the background I could hear the nurses saying, " Oh , please don't talk that way to Sherry... " Apparently she'd forgotten all about what had happened this morning, and that I'd been there and she wouldn't come with me, and just got very hurt and angry that we'd been excited all week about doing this parade together, then I went and left her behind... I waited until just before suppertime to go see her and invite her over for dinner, so I could give the staff as long as possible to work with her. (They usually do a much better job than even I do at helping her get past these emotive periods.) When I got there she said they were having waffles for supper and she wanted to stay, but could she come over after supper? and of course I said yes, and we waited for her to finish. She spent about 4 hours here, first we went for a drive around the lake (we live a few blocks off the largest inland lake in Michigan), which she thoroughly enjoyed. Then she came here and played with the dogs and the parrots, and played her digital keyboard which we keep here for her...she had her cigarettes whenever she wanted one, and her DC's in the fridge...more like home, and she was very relaxed. But VERY forgetful and even confused at times, and delusional. Her traumatic experience this morning really put an end to her wonderfully aware and lucid and positive week. But one of the funny things she said was something about the nurses trying to take her " Lewies " away from her, and that they were HER Lewies, and they couldn't have them! Tomorrow we're going to take her out for ice cream, if she's up for it; I left her with that thought when we dropped her off tonight at 10:00ish, so she'd have something to look forward to. His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 I'm sorry didn't make the parade.. But you made it up to her by having her over last night and ice cream today. I remember how devastated my mom was when she became incontinent and needing help into the bathroom... She'd cry every time the CNAs would bring her to the bathroom - mainly b/c she realized how dependant she became and it was devastating for her... I feel for but you're such a wonderful daughter to be one step ahead of her w/ ideas. Kudos to you > > Well, didn't make it to the parade after all. She's had SUCH a great > week...then this morning her roommate was in the bathroom and my mom > couldn't get in, and had an accident in bed. This REALLY upset her, she was > furious with the aides and her roommate, and probably herself, and of course > it totally ruined her morning. The aide went in to change the bed, and my > mom was so embarassed that the aide " accidently " knocked my mom's water > glass into the bed, then apologized all over the place while she changed > it...I thought that was so nice! I talked with her quite a while when I > went to pick her up, and she was insistent that she wanted to just stay > there and not go anywhere, so we sadly had to leave her behind. > > This really set my mom back. It was traumatic for her, she's never wet the > bed in her life. But it really ruined her day and she didn't want to go to > the parade after that. But the staff did a lot of one-on-one with her today > to try and work through it, because I told them I wanted to bring her over > for a cookout later so the whole day wasn't a waste, and they said they'd > work with her and try to get her in a better frame of mind so she'd want to > come over. > > The parade went REALLY well, fantastic in fact . But I kept thinking > about my mom and worrying about her. During the time I was playing my cell > phone rang, and it was her. She left a voice mail message that she was very > angry that I'd gone to the parade without her after she'd looked forward to > it all week, and if I ever wanted to see her again I'd know where to find > her. In the background I could hear the nurses saying, " Oh , please > don't talk that way to Sherry... " Apparently she'd forgotten all about what > had happened this morning, and that I'd been there and she wouldn't come > with me, and just got very hurt and angry that we'd been excited all week > about doing this parade together, then I went and left her behind... > > I waited until just before suppertime to go see her and invite her over for > dinner, so I could give the staff as long as possible to work with her. > (They usually do a much better job than even I do at helping her get past > these emotive periods.) When I got there she said they were having waffles > for supper and she wanted to stay, but could she come over after supper? and > of course I said yes, and we waited for her to finish. > > She spent about 4 hours here, first we went for a drive around the lake (we > live a few blocks off the largest inland lake in Michigan), which she > thoroughly enjoyed. Then she came here and played with the dogs and the > parrots, and played her digital keyboard which we keep here for her...she > had her cigarettes whenever she wanted one, and her DC's in the > fridge...more like home, and she was very relaxed. But VERY forgetful and > even confused at times, and delusional. Her traumatic experience this > morning really put an end to her wonderfully aware and lucid and positive > week. > > But one of the funny things she said was something about the nurses trying > to take her " Lewies " away from her, and that they were HER Lewies, and they > couldn't have them! > > Tomorrow we're going to take her out for ice cream, if she's up for it; I > left her with that thought when we dropped her off tonight at 10:00ish, so > she'd have something to look forward to. > > His, > Sherry > www.owly.net > daughter of , (mis?)diagnosed with AD in 2005, descent slowed by > Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my > house. We're learning to live with Lewy... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Hi Sherry, You are doing such a great job with . We have to learn to be so flexible, because we never know what state of mind our LO will be in when the time comes to do a planned event. I am so happy it went well with Jim at the fireworks and that the night was warm. I don't know if I would have brought Jim if it was cold and windy. I could leave the car running with the heater on and bundle him up, but I don't think I would have brought him if it was cold, so I have been fortunate the last few years that it is warm on the 4th. The toileting issues are so hard on our LOs. Jim is not really incontinent, he just can't get to the toilet when he needs to and no one can hear him in his whispery voice say he needs to go. He will hold on for as long as he possibly can before letting it go and that is how I think he keeps getting so many UTIs. It can be other things involved in getting UTIs, but I think his holding on is a big contributor. It is one of the reasons I spend at least 8 hours at the nh to be " toilet monitor. " While I am there, I toilet Jim at least 4 times. The CNAs will let him be wet for hours if I am not there to get him on the toilet. It's the same with poop too. Jim is more relaxed if I take him to the toilet, because I have the time to sit and wait for him to go, but he feels rushed with the CNAs and nothing happens and they don't have the time to sit and wait, so they take him off the toilet and then eventually he poops in his diaper. It just breaks my heart with the toileting issues at the nh. People cry, because they have no way to get to a toilet without help and no one will help them, the CNAs are too busy with whatever they are doing with other people and tell them to stop crying and wait. These people have to go to the toilet. They know when they have to go, they are not incontinent or oblivious of going in their diaper. They are embarrassed about it, yet the CNAs think they should just go in their diaper and be done with it and stop crying as if they were a child. They need " Toilet Monitors " for all those that are not incontinent and who will be there for that job only to take people to the toilet. It's especially the ladies at the nh that are actually tormented over not being able to get to a toilet. The men usually are very quiet, don't cry or get upset or at least don't show it outward, but the women cry and are very frustrated. The thing that is upsetting to me is it has to be the person's own CNA that takes them. I have seen CNAs in the hall that are free for the time and because it is not their patient do not help the person to the toilet, they have to wait for their own CNA. That doesn't seem like team work. If you are not busy at the time, you can not help someone else?! Maybe it is they are too lazy to do the toileting and would rather pass it off to the person's CNA and use it for an excuse,so they don't have to do it. Anyway, I am sorry your mom had to experience this toileting nh disaster. It is enough to throw anyone's day off. I can only imagine what it must feel like. At least they forget quickly. Hope today is a better day with the ice cream outing. Lugs= Love plus Hugs........................Jan the parade Well, didn't make it to the parade after all. She's had SUCH a great week...then this morning her roommate was in the bathroom and my mom couldn't get in, and had an accident in bed. This REALLY upset her, she was furious with the aides and her roommate, and probably herself, and of course it totally ruined her morning. The aide went in to change the bed, and my mom was so embarassed that the aide " accidently " knocked my mom's water glass into the bed, then apologized all over the place while she changed it...I thought that was so nice! I talked with her quite a while when I went to pick her up, and she was insistent that she wanted to just stay there and not go anywhere, so we sadly had to leave her behind. This really set my mom back. It was traumatic for her, she's never wet the bed in her life. But it really ruined her day and she didn't want to go to the parade after that. But the staff did a lot of one-on-one with her today to try and work through it, because I told them I wanted to bring her over for a cookout later so the whole day wasn't a waste, and they said they'd work with her and try to get her in a better frame of mind so she'd want to come over. The parade went REALLY well, fantastic in fact . But I kept thinking about my mom and worrying about her. During the time I was playing my cell phone rang, and it was her. She left a voice mail message that she was very angry that I'd gone to the parade without her after she'd looked forward to it all week, and if I ever wanted to see her again I'd know where to find her. In the background I could hear the nurses saying, " Oh , please don't talk that way to Sherry... " Apparently she'd forgotten all about what had happened this morning, and that I'd been there and she wouldn't come with me, and just got very hurt and angry that we'd been excited all week about doing this parade together, then I went and left her behind... I waited until just before suppertime to go see her and invite her over for dinner, so I could give the staff as long as possible to work with her. (They usually do a much better job than even I do at helping her get past these emotive periods.) When I got there she said they were having waffles for supper and she wanted to stay, but could she come over after supper? and of course I said yes, and we waited for her to finish. She spent about 4 hours here, first we went for a drive around the lake (we live a few blocks off the largest inland lake in Michigan), which she thoroughly enjoyed. Then she came here and played with the dogs and the parrots, and played her digital keyboard which we keep here for her...she had her cigarettes whenever she wanted one, and her DC's in the fridge...more like home, and she was very relaxed. But VERY forgetful and even confused at times, and delusional. Her traumatic experience this morning really put an end to her wonderfully aware and lucid and positive week. But one of the funny things she said was something about the nurses trying to take her " Lewies " away from her, and that they were HER Lewies, and they couldn't have them! Tomorrow we're going to take her out for ice cream, if she's up for it; I left her with that thought when we dropped her off tonight at 10:00ish, so she'd have something to look forward to. His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
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