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Medical Forum / Diseases and Disorders / Alzheimer's / December 2004Mum's Appt.
I feel like I am in Neverland, but it's not a fairy tale type place... During her appt, Mum was at her best. Her doc used a PDA type device and asked her some questions--and Mum answered them correctly. They were very basic questions (to me). He then told her that she did not have dementia...that her "problems" were from her psychiatric disorder, and he would let her shrink handle them. He did tell her that he wants a nurse coming in to do the meds for her and Dad (Sherree had spoken with him and had this set up) to relieve her of the stress of doing it. Mum agreed, which surprised me. He did say her thyroid and B-12 were normal, but her kidney function is still hovering near abnormal--but it was coming within normal range and would watch it and check it in 3 months. Her vascular studies had not been interpreted by the vascular doc, but he said that at her age, he would not recommend any treatment anyway. We went back to the house to check on Dad, found out he had fallen again but was all right, then I got him something to eat. We left then and I took Mum to Cracker Barrel to eat--at her insistence. She has been refusing to eat anything from there (carry out or eat in) because the last time she did, she had diarrhea. I asked her if she was sure (based on the above), and she said she never had a problem with their food before and wanted to go. So we went...she ate well and talked alot about different things--but she had names and times mixed up again. When I would say something to the effect that no, it was me/my sister/brother who did that, she would correct me and say with defiance that she knew exactly who did it...so I just stopped saying anything and listened. Am I crazy?? How could she present to the doc such a different person than what goes on? I am tired and feel a bit shell-shocked! Confused, too... I also have to figure out a way to get Wendy (their helper) in one more day a week. My ortho surgeon is not happy with the lack of progress with the healing and ROM on my right leg. Yesterday was tough--getting in and out of the car, getting her walker in and out of the car, using only one crutch when I am supposed to be using both (I can't handle both of them and Mum and her walker) Sorry, but I am again feeling nuts and overwhelmed. Fortunately, I have the day "off" and have an appt with the pastoral counselor. Hopefully, he can help me work through these feelings... donnah  SignatureEnjoy Life...This Is Not A Dress Rehearsal unknown >I feel like I am in Neverland, but it's not a fairy tale type place... > During her appt, Mum was at her best. This is not unusual. My Mom scored almost perfect on her MMSE -- but she is definitely not right, and the vascular studies proved it. Sometimes the lack of stimulation is a factor and going to the doctor "perks" them up. At home, without having to "keep up appearances" for strangers, the deficits show more clearly. Document what you are seeing -- times, dates, what she got confused about. Mom's doc used that record to "overrule" the MMSE and put her on Aricept. Too soon to tell if it is helping, but at least we are trying. Some people have done well using tape recorders or video cameras to capture daily confusion. Hang in there! Songbird thank you, Songbird... That is a good idea about documenting--except her doc is such an RO that he wouldn't accept it as evidence. I am so tired of dealing with him! Dad's hospice nurse, Sherree, did talk with him, but all he would agree to was her doing the meds until I can get someone set up to do it. The hospice "team" met with Mum and Dad--and they are still refusing any other help except for the nurse. Cr*p! But the counselor did wonders for me, today--he made me cry...lol...had lots of tears to get rid of apparently. In a nutshell, he told me it was time to have another family conference and time to be blunt (in a kind way). If they won't agree to an ALF, then we have to insist on more help. One way or another they are going to need more assistance... And I honestly cannot continue doing this all the time, and, boy, did that freak me out when I actually admitted it...heart and soul honesty. I guess I still *had* illusions that I could tough it out--maybe I should say delusions. 'Cause this very soft spoken man was very direct in what he said...that he understood about my Dad wanting to die at home, but he was being unfair and manipulative in wanting me to do it all, that it was making it harder for my Mum, and the isolation was not what they needed. They need the help of trained professionals, along with what the family can do, to make this easier on all of us. He was not putting Dad down so much as he was opening my eyes, I think. Dad's next doc appt is early Dec and he suggested we enlist his help in getting the ball rolling. With backup from Sherree, a good argument can be presented to Dad about making use of more of the hospice services. I think for my own sake, I am putting off doing anything until after Thanksgiving. I want to enjoy that day as much as possible. Both my kids are coming here, along with my grandsons. Mum and Dad will be here if Dad is up to getting out, although I do have concerns about the oldest grandson (Jake-18 months) trying to climb on Dad, etc.. So we may take dinner down to them and go for a short visit afterwards. I'm rambling, I'm numb, but I am hanging on <s> donnah >>I feel like I am in Neverland, but it's not a fairy tale type >>place... [quoted text clipped - 15 lines] > > Songbird > And I honestly cannot continue doing this all the time, and, boy, did > that freak me out when I actually admitted it...heart and soul [quoted text clipped - 6 lines] > professionals, along with what the family can do, to make this easier > on all of us. if you can't do it, don't. and don't feel guilty. you cannot fix your parents, with one with dementia and the other mentally ill *and* demented. if you need to walk away, do it. ignore what other family members have to say, especially if *they* won't do it either. you need to take care of yourself first. thanks, Dennis... I slept almost 8 hours last night, and that was wonderful! <s> It's also helped clear my mind somehow. I feel a bit of sorrow/grief, but also determined to take care of myself...no guilt, either! I believe my sil (brother's widow) will do what she can, but I know my sister that lives here and the one who lives in WA will still expect me to continue...tough luck! I think they are in denial of the situation, plus they do not see the every day happenings so it's easy for them to make their judgments. Frankly, I've reached the point that I don't care now whether or not they agree. I am taking care of myself, and they are going to have to accept it. donnah >> And I honestly cannot continue doing this all the time, and, boy, >> did [quoted text clipped - 18 lines] > members have to say, especially if *they* won't do it either. > you need to take care of yourself first. "Frankly, I've reached the point that I don't care now whether or not they agree. I am taking care of myself, and they are going to have to accept it." Donnah, please stick to that. It's the best thing I've heard you say. And it is so important that you do so. Love & prayers. Gwen i agree with gwen's sentiments below, donnah. take care of YOU right now. you deserve it! hugs.... SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > "Frankly, I've reached the point that I don't care now whether or not > they agree. I am taking care of myself, and they are going to have to [quoted text clipped - 5 lines] > it is so important that you do so. Love & prayers. > Gwen thank you, Evelyn...and hugs to you also! I don't know what pushed me over the edge, but I'm glad it happened! It's a strange feeling to "give" myself permission to take care of me, but I sure do feel relieved. <smile> Yesterday when I went down to do the usual stuff, both of them didn't feel physically well...instead of thinking that I will have to keep doing the same things/same days, I knew that they are going to have to get more help. So I casually mentioned that we should get Wendy another day since I will be taking Tuesdays off after Thanksgiving. That was met with stone-cold silence! Mum said, "Well, I'll have you know that I fixed lunch yesterday (Wendy's day there) so I didn't have to bother her when she was cleaning!" She became agitated when I told her that lunch was part of Wendy's "duties"...so I will call the agency Monday and let them know that Wendy will have to stop what she is doing and feed them.(I don't fault Wendy--she is still getting used to them). Sneaky of me, but if that is what I have to do, so be it. I sincerely hope you are feeling some better, Evelyn! donnah >i agree with gwen's sentiments below, donnah. take care of YOU >right now. you deserve it! [quoted text clipped - 10 lines] >> it is so important that you do so. Love & prayers. >> Gwen > thank you, Evelyn...and hugs to you also! > I don't know what pushed me over the edge, but I'm glad it happened! It's [quoted text clipped - 14 lines] > I sincerely hope you are feeling some better, Evelyn! > donnah Bear in mind that Wendy may have fixed lunch and your mum cant remember so 'made up' the fact she did, so dont launch in to Wendy! SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >> thank you, Evelyn...and hugs to you also! >> I don't know what pushed me over the edge, but I'm glad it happened! It's [quoted text clipped - 17 lines] > Bear in mind that Wendy may have fixed lunch and your mum cant remember so > 'made up' the fact she did, so dont launch in to Wendy! yes, true. ida would often wander out into the kitchen and say she was baking bread and wanted to check on it. she would say she hadn't eaten when she really had and vice versa. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com > > Bear in mind that Wendy may have fixed lunch and your mum cant remember so > > 'made up' the fact she did, so dont launch in to Wendy! > > yes, true. ida would often wander out into the kitchen and say she was > baking bread and wanted to check on it. she would say she hadn't eaten > when she really had and vice versa. Dad always insists he has eaten, if I ask him. If I push it, he will usually tell me he had a bowl full of cookies, which may or may not be true, but doesn't really count as a 'meal' in my book. >> > Bear in mind that Wendy may have fixed lunch and your mum cant remember > so [quoted text clipped - 8 lines] > true, > but doesn't really count as a 'meal' in my book. hi robert, yes. heck, if you asked ME what last ate i would have to stop and remember! :-) asking someone with memory impairment has to be even more iffy, but we do it anyway fom habit. i find myself asking ida even now, and have to remind myself that she probably has no idea what she ate or when. tomorrow i go for my surgery, thank goodness. probably won't be posting till friday, have a great holiday everyone! one more thing to be thankful for is not having to have surgery the day before thanksgiving. as for me i am grateful for the option of having my shoulder surgically stabilized. we live in a great time of opportunity with the benefits of modern medicines and surgical techniques! SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, prayers for your surgery and recovery. Gwen > >> > Bear in mind that Wendy may have fixed lunch and your mum cant remember > > so [quoted text clipped - 27 lines] > shoulder surgically stabilized. we live in a great time of opportunity > with the benefits of modern medicines and surgical techniques! and mine also, Evelyn! donnah > Evelyn, prayers for your surgery and recovery. > Gwen [quoted text clipped - 43 lines] >> opportunity >> with the benefits of modern medicines and surgical techniques! > Frankly, I've reached the point that I don't care now whether or not > they agree. I am taking care of myself, and they are going to have to > accept it. now, *that's* the right attitude! LOL...it takes me awhile, but once I "get" something, I run with it! donnah >> Frankly, I've reached the point that I don't care now whether or >> not [quoted text clipped - 3 lines] > > now, *that's* the right attitude! > Document what you are seeing -- times, dates, what she got confused about. > Mom's doc used that record to "overrule" the MMSE and put her on Aricept. > Too soon to tell if it is helping, but at least we are trying. Some people > have done well using tape recorders or video cameras to capture daily > confusion. a video camera will really show it clearly, though you may have to edit out hours to get 15 or 20 minutes of really clear examples. >> Document what you are seeing -- times, dates, what she got confused about. >> Mom's doc used that record to "overrule" the MMSE and put her on Aricept. [quoted text clipped - 5 lines] >to edit out hours to get 15 or 20 minutes of really clear >examples. Thanks for that - it's a great idea. - Mod as a hooter! >Document what you are seeing -- times, dates, what she got confused about. >Mom's doc used that record to "overrule" the MMSE and put her on Aricept. >Too soon to tell if it is helping, but at least we are trying. Some people >have done well using tape recorders or video cameras to capture daily >confusion. Heh-heh, I might have to try that :-) My wife feels that the Aricept has had a big impact - but that's not part of _my_ reality. - Mod as a hooter! > My wife feels that the Aricept has had a big impact - but that's not part of > _my_ reality. one of the characteristics of this disease is that the victims rarely have any insight into their condition. they simply cannot determine when they are impaired. Donnah, I had wondered how you were doing with the leg with all you have going on and having to do. Am so sorry it is't doing well. I wish I had some advice to give you about your Mum, but all I can do is offer a big hug. ((((((((((((Donnah)))))))))))) Gwen > I feel like I am in Neverland, but it's not a fairy tale type place... > During her appt, Mum was at her best. Her doc used a PDA type device [quoted text clipped - 35 lines] > Hopefully, he can help me work through these feelings... > donnah Gwen, hugs and prayers are wonderful...thank you! The counselor did tell me like it is today, and we had quite a discussion about my own health. You know I went through so much to save that leg and now I am not taking care of myself the way I need to--change that to *want* to...and I am going to do it, too. I so want to have days of my own to enjoy with Nick or just read or have lunch with friends. And it's really ok for me to do these things. I love my parents, and will continue to help as I can, but I will not "sacrifice" my health and well being. Oh, that sounds so selfish in a way. Dr. Mcgowen (my counselor) pointedly told me if I kept on this way that they may outlive me, and he was not kidding. Between the RA, the leg, and the cancer causing stress for me, add in what's happening with my parents...well, I got the picture! I need to regroup, enjoy the family dinner, and get the ball rolling. donnah > Donnah, I had wondered how you were doing with the leg with all you > have [quoted text clipped - 62 lines] >> Hopefully, he can help me work through these feelings... >> donnah > I feel like I am in Neverland, but it's not a fairy tale type place... > During her appt, Mum was at her best. Her doc used a PDA type device > and asked her some questions--and Mum answered them correctly. They > were very basic questions (to me). He then told her that she did not > have dementia...that her "problems" were from her psychiatric > disorder, and he would let her shrink handle them. I had this the first time we had a serious discussion with my father's (now former) doctor about his memory problems -- Dad scored (as I recall) 28 out of a possible 30 on the MMRE (?) quiz. In Dad's case, I didn't think it was Alzheimers (still don't) but some other kind of dementia -- and the quiz was primarily about short-term memory loss. It did make it harder to get further help, once Dad had decided there was nothing much wrong but "normal aging" (as the doctor put it -- aarrgh!) > We went back to the house to check on Dad, found out he had fallen > again but was all right, then I got him something to eat. Dad has had several falls, and a bunch more near-falls. Scares the hell out of me, and preys on my mind when I'm away from home. We have a prescription for a walker, but haven't picked it up yet. > We left then > and I took Mum to Cracker Barrel to eat--at her insistence. She has > been refusing to eat anything from there (carry out or eat in) because > the last time she did, she had diarrhea. I asked her if she was sure > (based on the above), and she said she never had a problem with their > food before and wanted to go. Dad was having recurring diarrhea, was refusing to take Immodium for it -- 'because it might interact with his prescriptions' -- was refusing to ask his doctor if it was safe to take it (I had asked a long time ago and it was, but he wouldn't listen to me). Instead, he kept guessing at what was causing it, and cutting that out of his diet, item after item (and he eats too little as it it). Of course, when he had a bout again after not eating whatever he last cut out, he wouldn't conclude that it *wasn't* that food and start up again. When his favorite breakfast sausage changed its packaging, he decided the 'new brand' I'd bought was causing it, didn't eat it for several weeks and then forgot that it was a different brand and started eating it again. Finally when he was in the hospital I ambushed him by asking when the doctor was present if he could take Immodium for any diarrhea he might have, so he's stuck with having to agree he remembers when I tell him to take it with the next incident, or have me call the doctor to settle it. (I hate having to trick the stubborn old coot into dealing with things like that!) > Am I crazy?? How could she present to the doc such a different person > than what goes on? I am tired and feel a bit shell-shocked! Confused, > too... Dad generally manages to put enough energy and concentration into appearing more coherent -- while being asked health questions, and who's the president, and can you remember the list pen-watch-eyeglasses, a person can sometimes concentrate on just those things -- he doesn't have anything else contributing to a wandering mind. And a ten-minute consultation with a doctor usually doesn't provide enough instances of recollecting old memories for a pattern to become obvious. > I also have to figure out a way to get Wendy (their helper) in one > more day a week. My ortho surgeon is not happy with the lack of [quoted text clipped - 6 lines] > Hopefully, he can help me work through these feelings... > donnah I hope so, Donnah. Good luck. SignatureRobert Robert, thank you so much for sharing! Wow, but did I see Mum in what you said...and myself <g> Mum also makes a self-diagnosis if she has diarrhea and will stay off that food until she forgets...and of course she doesn't want to eat it again " because I don't like the taste of it anymore." she doesn't seem to remember that it started out with the bout of diarrhea, she resorts to saying she lost her taste for it...and I guess that is probably because she doesn't remember why, only that she fears eating it for some reason. Robert, I am getting very devious (!) in getting my parents to do some things! At first I hated it, but right now I don't feel I have much choice on some things... thank you again! donnah >> I feel like I am in Neverland, but it's not a fairy tale type >> place... [quoted text clipped - 103 lines] > > I hope so, Donnah. Good luck. > How could she present to the doc such a different person > than what goes on? It's called going-to-the-doctor syndrome. They do very well at the doctor's, then fall apart right after from the effort. Been there, had Mom do that. Several times. and that makes sense now, Dennis. but it sure surprised me at the time...and her pcp not really helping even after Dad's hospice nurse talking to him. it's almost like he was encouraging her, or maybe he just doesn't "get it." if he is not going to cooperate, then I'll work around him... Mum has her shrink appt next month and I'll do my best to take her (couldn't take her last time due to car trouble), and she may be able to help. donnah >> How could she present to the doc such a different person >> than what goes on? [quoted text clipped - 3 lines] > > Been there, had Mom do that. Several times. Donnah, My FIL held it together really well at his dr's, too. So much that the doc thought my MIL was the crazy one (FIL was having night time delusions, in addition to forgetfulness, getting lost, not being able to find the word he wanted to say...). It took being hospitalized (Had CHF but didn't remeber that he did and refused to take his diuretic for days on end) and the staff being able to observe him on a 24 hr basis and make notes. The doc changed his tune *real fast* and insisted he be discharged only to an Alz. facility. SignatureAdelle D. Stavis, Esq. > and that makes sense now, Dennis. but it sure surprised me at the > time...and her pcp not really helping even after Dad's hospice nurse [quoted text clipped - 13 lines] > > > > Been there, had Mom do that. Several times. Adelle, thank you for telling me this... But part of the problem, I think, is her RO of a pcp. I feel he has pushed her off to her shrink without trying to help. If he can't handle it, then he should send her to someone who can. Of course, he's unlikely to do that! So I'll have to work around him until other things are in place...and I did start documenting Mum's events so that may help. Hope things are well with you, Adelle. donnah > Donnah, > [quoted text clipped - 34 lines] >> > >> > Been there, had Mom do that. Several times. > nd that makes sense now, Dennis. but it sure surprised me at the > time...and her pcp not really helping even after Dad's hospice nurse > talking to him. it's almost like he was encouraging her, or maybe he > just doesn't "get it." > if he is not going to cooperate, then I'll work around him... CHANGE DOCTORS. seriously. find a doc whose practice is primarily seniors, and who has dementia experience and a good understanding. you can ask you local alzheimers association for recommendations. thanks, Dennis...I did get the list from the AD assoc, but Mum refuses right now to change her docs. And now that he has told her she doesn't have dementia, she is more determined to keep him...lol, wonder why?? And her pcp is not cooperating in any way. He won't speak to me privately even when I ask him--he really does not have any understanding of AD. And when I asked him to call me about the results of her vascular studies, he refused. He said he speaks to his patients only unless they are incapacitated then he speaks to the family...no, I didn't grab him and shake him, but I sure wanted to do it! He has become an obstacle now. donnah >> nd that makes sense now, Dennis. but it sure surprised me at the >> time...and her pcp not really helping even after Dad's hospice [quoted text clipped - 8 lines] > understanding. you can ask you local alzheimers association for > recommendations. > And her pcp is not cooperating in any way. He won't speak to me > privately even when I ask him--he really does not have any [quoted text clipped - 3 lines] > I didn't grab him and shake him, but I sure wanted to do it! He has > become an obstacle now. She obviously needs a new doc, but the current one may not legally be able to speak to you, unless your mother has given him written permission to do so. That's the new Federal HIPAA law... You need to have a the release form available in case you catch her at a vulnerable moment and can get her to sign the release "so that you can help with prescriptions" or some other such excuse. The smartest thing I ever did was to get my Mom to sign a release so her doctors could talk to all 4 of us kids --- that ensured that siblings in denial could talk to the docs and get the unvarnished truth, since they often refused to believe my accounts of what was going on. When it came from one of her docs, they had to pay attention. Dennis, I did get her to sign a release already. This doc is just not willing/able to cooperate with me. And getting her to go to another doc will be near impossible now, I'm afraid. She started seeing him a few years back after her stroke, and has become very attached to him. My brother (now deceased) insisted she go to another doc because he didn't like the way her old one treated her. But I am documenting so maybe that will help in time. donnah >> And her pcp is not cooperating in any way. He won't speak to me >> privately even when I ask him--he really does not have any [quoted text clipped - 21 lines] > accounts of what was going on. When it came from one of her > docs, they had to pay attention. > Dennis, I did get her to sign a release already. This doc is just not > willing/able to cooperate with me. [quoted text clipped - 4 lines] > But I am documenting so maybe that will help in time. > donnah You have a signed release and he won't talk to you? I'd write him a letter demanding to see her records and copy it to the local medical sociaty. You have a legal right to the information. If you know a lawyer who'll do you a freebie, get him/her to write it. This is outrageous. Songbird Songbird, thanks... But he has told Mum (and me) at her last appt that her "problems" are probably from her psychiatric disorder--depression--and the stress she is under. He will not refer her for anymore testing. I am documenting events for when I take her for her shrink appt in hopes the shrink will be more receptive. This week has been another roller coaster. Mum wanted to talk to one of her brothers, but became enraged when their answering machine picked up. Mum feels it was, "Mean old Joanne not wanting to talk to me." The machine message was just a typical one of being busy/not available, to leave a message and they would get back to them. I casually mentioned that my older sister had a similar one that I didn't like, and that this was probably just the same thing. Mum insisted it was not... Yet Thanksgiving she was fairly good. Dad (with much difficulty and much help) was able to come here for dinner. They both tremendously enjoyed seeing their great-grandsons. With us hovering nearby, Mum held the youngest (Josh, 6 months), and she was absolutely delighted...talking to him and he responded with wonderful smiles and cooing to her. I had made arrangements to visit friends after I took care of them on Friday. Nick volunteered to go so I could get packed. He came back and said that they were not hungry, and she would take care of feeding them. He offered to return later, and Mum refused...saying I could take care of things when I got home. He was at a loss as to what to do so he left... My carefully planned visit never happened--I had a minor car accident. I'm all right, but sore! At least things are still in place for them so I can rest up and take it easy (and I am so grateful!) So I will still have some time to myself... donnah >> Dennis, I did get her to sign a release already. This doc is just >> not willing/able to cooperate with me. [quoted text clipped - 13 lines] > > Songbird Sorry about your accident Donnah. Hope you won't stay sore long. Gwen > Songbird, thanks... > But he has told Mum (and me) at her last appt that her "problems" are [quoted text clipped - 45 lines] > > > > Songbird |
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