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Medical Forum / Diseases and Disorders / Alzheimer's / March 2005Insights to share?
I really hadn't thought of it. For months now I have just been asking questions and trying to learn about alzheimers, but you are right, perhaps I do have something to share. One of you said today that if there was anything good to remember in that patient who is now behaving so badly , then to concentrate on those things. That is one of the things that has kept me going, the dear memories of someone who I almost totaly leaned on with complete trust. How little did I ever realise the table would be turned one day.........I never filed taxes, I never had to worry about finding my way to a strange location in a town I'd never been in, we always traveled a lot. He was my rock. He paid the bills, he made all the major decisions. I scarcely had to even use my own mind. We married in 1959 when I was eighteen. My mother had sheltered me, she had long been divorced from my father and I went from her care to my husbands care ! When things began to change in such a mystifying way, I had no idea what the problem was. But without scarcely realising it, I began taking on more and more of the responsibilities. Things were chaotic until his diagnoisis of a disease I had heard of and gave little thought to. Those things never happen to you...they happen to others.....'wrong'. I don't want to bore you all with too much , but I have learned that love is the only thing that will pull you though and at times love feels akin to hate. Its easy to lose your perspective when your alone with this disease and no close friends and your best friend in the world has become a needy stranger. Selfish and childish and totaly unreasonable....it is then you must strive to remember them as they were when they were fully functioning. I have found strengths within my self that I never thought exsisted, but I have also found my own health going down hill since this last year. It is a struggle. Sometimes I just get down to his level of thinking and we giggle like two children. I love him now and always. He is seventy four. A gentle man who loves people, children and animals and yet now...a child himself. The biggest part of my day is spent repeating what I just said a minute or two before. My question.....when he nose dived in June it happened within the space of a couple of hours, he was completely out of touch with any reality at all. It took over a month for the aricept to do anything and I was up nearly 24 hours a day and he never quit going it seemed. He would cry uncontrolably when he asked me about his mom or brothers or sisters..who have been long passed, for him the pain was fresh each time he asked...now I just say I haven't heard from them but imagine they are fine. Is it unusual for such a fast down hill slide, or can I expect it to happen again? I have noticed some slipping just in the last week. Again , thank you. Maggie > My question.....when he nose dived in June it happened within the space > of a couple of hours, he was completely out of touch with any reality at [quoted text clipped - 8 lines] > happen again? I have noticed some slipping just in the last week. > Again , thank you. the damage done to existing neural pathways by dementias are very unpredictable, because you never know when some critical linkage to a major set of abilities or memories will disappear. all the pros at our local care facilities tell me that they've simply learned that they have to go with the flow, and plan assuming the worst will happen. i found the role switching the hardest, in part because my mother had to be pretty ill or out of it to let me or anyone else do things for her that she had been doing herself. she kept on trying to show us how independent she was until the day all 4 of her children told her that independent living was no longer possible. >i found the role switching the hardest, in part because my mother >had to be pretty ill or out of it to let me or anyone else do >things for her that she had been doing herself. she kept on >trying to show us how independent she was until the day all 4 of >her children told her that independent living was no longer >possible. I'm sure those decisions are difficult to make. On the one hand, you still have to deal with what is a person but you also have to make judgements about what is good/bad for them. The truth might be that many of them would prefer you to leave them wandering on the freeway than burdoning you and lengthening their suffering and lack of dignity. For me, I would prefer dignity while I'm mobile. I thing that is contrary to what we learn about looking after our loved ones. We are probably at a turning point given the expected surge in the number of AD patients associated with an ageing population. Hopefully, our current position, is only a temporary transition while suitable pharmaceuticals eradicate such diseases and we can go back to our bad behaviour on the roads to manage the population. Here's hoping :-) - Mod as a hooter! Maggie, you have learned a lot about AD. And remembering the love you two have shared through the years is very important. Also you have learned that it is better not to expect the AD person to live in your reality; they can only live in theirs. That's where the loving deceptions come in. We lived in central Florida when Grayson's AD started; our children were in South Carolina and Alabama. We did okay until I came home once from going somewhere by myself for a while and found him in the floor outside the bathroom, unable to move and he had wet himself and was just lieing there. It was so sad and I never left him alone again. I was very fortunate to have a neighbor volunteer to stay with him one afternoon a week for me to do what I needed to do. Twice when he fell, I had to call someone to come pick him up; I couldn't. I guess it was about 5 or 6 years before we moved to Alabama where our son and family lived (in 2000). He died in March 2001. I well remember the questions that were asked over and over and over. But we still loved each other and I'm so glad that I was able to look after him until he had to go to the Nursing Home. Gwen > I really hadn't thought of it. For months now I have just been asking > questions and trying to learn about alzheimers, but you are right, [quoted text clipped - 56 lines] > > Maggie >Maggie, you have learned a lot about AD. And remembering the love you two >have shared through the years is very important. Also you have learned that [quoted text clipped - 12 lines] >But we still loved each other and I'm so glad that I was able to look after >him until he had to go to the Nursing Home. While this message is directed at Gwen, it is applicable to most of us. The message you sent, above, was only 16 lines. The clutter you included from the earlier post increased it to 86 lines. Usenet conventions suggest posters remove extraneous information from what is being responded to--other than that pertinent to the reply. Doing so, saves all of us re-reading what we have already from the earlier post/s. It also increases the liklihood that others will read all of your message as well as comprehend what you're saying. Given the nature of AD--and this specific newsgroup--most of us here are older than the average for newsgroup postings--and can be forgiven for not being fully briefed about what is polite and impolite convention. regards - Mod as a hooter! > Usenet conventions suggest posters remove > extraneous information from what is being responded to--other than that > pertinent to the reply. which i do. usenet conventions also suggest that you only post what's on topic for a group. i hope that in the future you will also abide by *that* usenet convention. i don't mind killing one off topic thread, but it would make the group useless for those of us that are here for the group topic if off topic posts clogged this group like they do so many others. we just went through a round of that a few months ago, and it took a determined effort for us regulars to hang in there and ignore the off topic stuff until the trolls went away. i don't think that we want to go throught *that* again. > we just went through a round of that a few months ago, and it > took a determined effort for us regulars to hang in there and > ignore the off topic stuff until the trolls went away. i don't > think that we want to go throught *that* again. Trolls? TROLLS? And who is the biggest troll in the history of Usenet? Look in the mirror, loser. Anthony, the previous posts are always below my reply. You don't have to read it all, but sometimes folks like to read what the answer refers to. Feel free not to read mine. Gwen > >Maggie, you have learned a lot about AD. And remembering the love you two > >have shared through the years is very important. Also you have learned that [quoted text clipped - 29 lines] > - > Mod as a hooter! >Anthony, the previous posts are always below my reply. You don't have to >read it all, but sometimes folks like to read what the answer refers to. >Feel free not to read mine. Forgive me, "While this message is directed at Gwen, it is applicable to most of us". With hindsight, "in response to Gwen" would have been a much better choice of phrase than "directed to Gwen". I am very aware sad need for this group and that most of the posters are more likely to be older than average (probably messed up that phrase too). Recognising the value of usenet/newsgroup conventions makes for an easier and less convoluted discourse. - Mod as a hooter! Anthony, yes I'm older. I am now 76. But thankfully my mind is still good and I'm able to learn new things and do the things I want to do; my age has nothing to do with the way I post. I really think though that I will stop posting here since my husband died in March 2001 and my comments are no longer needed. Good luck to you in your future. Gwen > >Anthony, the previous posts are always below my reply. You don't have to > >read it all, but sometimes folks like to read what the answer refers to. [quoted text clipped - 11 lines] > - > Mod as a hooter! >Anthony, yes I'm older. I am now 76. But thankfully my mind is still good >and I'm able to learn new things and do the things I want to do; my age has >nothing to do with the way I post. I really think though that I will stop >posting here since my husband died in March 2001 and my comments are no >longer needed. Good luck to you in your future. Nothing wrong with being old, Gwen--and any others in that position. As for your comments not being needed, that must be a decision for you. I am sure, however, that your experiences with your husband will be useful for new and other posters experiencing what you experienced. Now, if you could only give me the secret to attaining 76. I'll probably get to hell quite a long time before you do--well, if you do--so I'll keep a, cool, spot for you and we can continue the conversation or just reminisce about our differences :-) My comments about age referred--rather--to a more robust dialogue about usenet etiquette that emerged earlier in the life of the internet but which, is now, not familiar to those at either end of the age continuum. One such convention, when replying to a message, is to repost only that part, or parts, of the message being replied to, which is pertinent to the response. The etiquette involved, is to not unnecessarily waste the time of others. - Mod as a hooter! Gwen I hope you will not stop posting here. I have mostly lurked but usually after a particulary bad day you've posted something which helps. Please consider the source that made you come to that decision. Florence > Anthony, yes I'm older. I am now 76. But thankfully my mind is still > good [quoted text clipped - 4 lines] > longer needed. Good luck to you in your future. > Gwen Dear Gwen, Please do not even think of leaving us, Gwen. You are a valued member of this group and I consider you a friend as well. For several years now, I knew I could always count on you for a wise and straight answer. That is an important thing in dealing with this illness or in dealing with life. The most accurate and valued advice here comes from those who have been through it. Consider the source of the criticism. Please stay.  SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >> >Anthony, the previous posts are always below my reply. You don't have >> >to [quoted text clipped - 16 lines] >> - >> Mod as a hooter! >Anthony, yes I'm older. I am now 76. But thankfully my mind is still good >and I'm able to learn new things and do the things I want to do; my age has >nothing to do with the way I post. I really think though that I will stop >posting here since my husband died in March 2001 and my comments are no >longer needed. Good luck to you in your future. I certainly never meant my comments to chase anybody away. I'm sure, Gwen, that many people who have been here longer than me would miss your presence. Given that I initiated this, I'm willing to stop posting here instead of you--but would prefer to remain--if you forgive me. In any event, I apologise and wish you the best. - Mod as a hooter! astech@iinet.net.au wrote: > I certainly never meant my comments to chase anybody away. I'm sure, Gwen, that > many people who have been here longer than me would miss your presence. [quoted text clipped - 3 lines] > - > Mod as a hooter! Thanks! precious7735@duskmail.com Gwen, I am mostly a lurker and have always found your posts helpful. Please reconsider stopping posting. I think your posts are still needed by others. Camille > Anthony, yes I'm older. I am now 76. But thankfully my mind is still good > and I'm able to learn new things and do the things I want to do; my age has > nothing to do with the way I post. I really think though that I will stop > posting here since my husband died in March 2001 and my comments are no > longer needed. Good luck to you in your future. > Gwen Insights to share? Group: alt.support.alzheimers Date: Sat, Feb 19, 2005, 3:26pm (CST-1) From: shiftingsand@webtv.net (Maggie Turner) > I really hadn't thought of it. For > months now I have just been asking [quoted text clipped - 16 lines] > the bills, he made all the major > decisions. I scarcely had to even use my > own mind. We married in 1959 when I > was eighteen. My mother had sheltered > me,she had long been divorced from my > father and I went from her care to my > husbands care ! > When things began to change in such a > mystifying way, I had no idea what the > problem was. But without scarcely > realising it, I began taking on more and > more of the responsibilities. > Things were chaotic until his diagnoisis > of a disease I had heard of and gave > little thought to. Those things never > happen to you...they happen to > others.....'wrong'. Ronny: That's what I thought too or tried to think for a long time. A dear older neighbor lady developed symptions of Alzheimers and Mom even stayed with her a bit at nights as the ladies children hired her to do that. Of course,that was at a time,several years ago,when Mom could still do that. Then just a few years ago Mom's oldest sister started getting real forgetful,etc. And to myself I tried to deny that my dear aunt could be developing Alzheimers or that Mom would ever get such. Then my aunt was diagnosed with Alzhimers and that was bad;but I thought that doesn't mean Mom will ever get such. And several years ago I tried to ignore the slow but steady changes in Mom's behaviour. Ah,the power of denying and ignoring. :-) > Maggie: > I don't want to bore you all with too [quoted text clipped - 14 lines] > down hill since this last year. It is a > struggle. Ronny: It has took me a long while just to learn to be calmer and I'm not completely there yet by any means! LoL I'm not sure exactly when it hit me or why;but I did start to see awhile back that getting too upset about somethings was a waste of my energy that did me or Mom no good. And I realized,as I also get older,that I don't have a lot of energy to spare or foolishly waste! LoL Energy is precious. > Maggie: > Sometimes I just get down to his level [quoted text clipped - 3 lines] > people, children and animals and yet > now...a child himself. Ronny: My Mom will be 85 years old this coming Monday. I like to share things with her that I find online that I know she will find funny also. :-) And sometimes I like to play online music for her that I know she likes. :-) I like sharing those things with her and sometimes it brings up old and good memories she has. > Maggie: > The biggest part of my day is spent > repeating what I just said a minute or > two before. Ronny: Oh boy! I know what you mean! LoL Just last night Mom was determined to go "home" and it didn't matter how many times I told her we were already home. That just didn't sink in with her or else she just denied such could be so. Of course,it didn't help that I was just starting to get over a headache,had the heating pad on my back and was really,really,really just wanting to stay quite and relax! :-) LoL > Maggie: > My question.....when he nose dived in [quoted text clipped - 6 lines] > He would cry uncontrolably when he > asked me about his mom or brothers or > sisters..who have been long passed, for > him the pain was fresh each time he > asked...now I just say I haven't heard > from them but imagine they are fine. > Is it unusual for such a fast down hill > slide, or can I expect it to happen > again? I have noticed some slipping just > in the last week. Again , thank you. > Maggie > --- Ronny: I've not seen such a fast slippage in my Mom. With her it's just been slow and gradual. She also fairly frequently asks me or talks to me about her Mom and Dad and several of her brothers and sisters-all she asks about have passed away. Some a very long time ago. She thinks they are here and I've gotten into the habit of telling her that this or that person has just gone to their own home and or that they are at their own home. So far that works fine with Mom except at times she can get a trifle upset with this or that person because they so suddenly slipped off to their home with out telling her they were going! :-) A couple of months ago a nephew of Mom's was here. She asked about his Mom,her sister-how she was? Nephew said,why she died a couple of months or so ago and don't you remember you were at her funeral? Mom remembered that then and started to cry. I wish my cousin had just told Mom that her sis was doing fine. But of course,it wasn't long until Mom forgot what he had said,so she didn't stay upset too long. I just keep hoping that Mom's Alzheimers will stay very slow and gradual. Right now she's at a place where she can still enjoy a lot of things. She wanted to go outside yesterday and got a few feet out the back door;but quickly went back in because it was so cool,damp and a little windy. Supposed to be much warmer though today,so if all works out I hope to take her out in the yard today so she can see the daffodils flowering. :-) Ronny, when your Mom wants to go home, just tell her you'll go later, or tomorow, or after lunch, etc. instead of telling her she is home. That will be much easier on both of you. Gwen Insights to share? Group: alt.support.alzheimers Date: Sat, Feb 19, 2005, 3:26pm (CST-1) From: shiftingsand@webtv.net (Maggie Turner) > I really hadn't thought of it. For > months now I have just been asking [quoted text clipped - 16 lines] > the bills, he made all the major > decisions. I scarcely had to even use my > own mind. We married in 1959 when I > was eighteen. My mother had sheltered > me,she had long been divorced from my > father and I went from her care to my > husbands care ! > When things began to change in such a > mystifying way, I had no idea what the > problem was. But without scarcely > realising it, I began taking on more and > more of the responsibilities. > Things were chaotic until his diagnoisis > of a disease I had heard of and gave > little thought to. Those things never > happen to you...they happen to > others.....'wrong'. Ronny: That's what I thought too or tried to think for a long time. A dear older neighbor lady developed symptions of Alzheimers and Mom even stayed with her a bit at nights as the ladies children hired her to do that. Of course,that was at a time,several years ago,when Mom could still do that. Then just a few years ago Mom's oldest sister started getting real forgetful,etc. And to myself I tried to deny that my dear aunt could be developing Alzheimers or that Mom would ever get such. Then my aunt was diagnosed with Alzhimers and that was bad;but I thought that doesn't mean Mom will ever get such. And several years ago I tried to ignore the slow but steady changes in Mom's behaviour. Ah,the power of denying and ignoring. :-) > Maggie: > I don't want to bore you all with too [quoted text clipped - 14 lines] > down hill since this last year. It is a > struggle. Ronny: It has took me a long while just to learn to be calmer and I'm not completely there yet by any means! LoL I'm not sure exactly when it hit me or why;but I did start to see awhile back that getting too upset about somethings was a waste of my energy that did me or Mom no good. And I realized,as I also get older,that I don't have a lot of energy to spare or foolishly waste! LoL Energy is precious. > Maggie: > Sometimes I just get down to his level [quoted text clipped - 3 lines] > people, children and animals and yet > now...a child himself. Ronny: My Mom will be 85 years old this coming Monday. I like to share things with her that I find online that I know she will find funny also. :-) And sometimes I like to play online music for her that I know she likes. :-) I like sharing those things with her and sometimes it brings up old and good memories she has. > Maggie: > The biggest part of my day is spent > repeating what I just said a minute or > two before. Ronny: Oh boy! I know what you mean! LoL Just last night Mom was determined to go "home" and it didn't matter how many times I told her we were already home. That just didn't sink in with her or else she just denied such could be so. Of course,it didn't help that I was just starting to get over a headache,had the heating pad on my back and was really,really,really just wanting to stay quite and relax! :-) LoL > Maggie: > My question.....when he nose dived in [quoted text clipped - 6 lines] > He would cry uncontrolably when he > asked me about his mom or brothers or > sisters..who have been long passed, for > him the pain was fresh each time he > asked...now I just say I haven't heard > from them but imagine they are fine. > Is it unusual for such a fast down hill > slide, or can I expect it to happen > again? I have noticed some slipping just > in the last week. Again , thank you. > Maggie > --- Ronny: I've not seen such a fast slippage in my Mom. With her it's just been slow and gradual. She also fairly frequently asks me or talks to me about her Mom and Dad and several of her brothers and sisters-all she asks about have passed away. Some a very long time ago. She thinks they are here and I've gotten into the habit of telling her that this or that person has just gone to their own home and or that they are at their own home. So far that works fine with Mom except at times she can get a trifle upset with this or that person because they so suddenly slipped off to their home with out telling her they were going! :-) A couple of months ago a nephew of Mom's was here. She asked about his Mom,her sister-how she was? Nephew said,why she died a couple of months or so ago and don't you remember you were at her funeral? Mom remembered that then and started to cry. I wish my cousin had just told Mom that her sis was doing fine. But of course,it wasn't long until Mom forgot what he had said,so she didn't stay upset too long. I just keep hoping that Mom's Alzheimers will stay very slow and gradual. Right now she's at a place where she can still enjoy a lot of things. She wanted to go outside yesterday and got a few feet out the back door;but quickly went back in because it was so cool,damp and a little windy. Supposed to be much warmer though today,so if all works out I hope to take her out in the yard today so she can see the daffodils flowering. :-) Gwen, in my case, whatever I say she will ask again in five minutes until she just gets tired or whatever happens and she goes on to something else. I just say whatever comes to mind, sometimes "we are home" and other times "we will go later". As long as I am not really tired out and frustrated it is no big deal anyway. SignatureLesanne > Ronny, when your Mom wants to go home, just tell her you'll go later, or > tomorow, or after lunch, etc. instead of telling her she is home. That [quoted text clipped - 155 lines] > out I hope to take her out in the yard today so she can see the > daffodils flowering. :-) Re: Insights to share? Group: alt.support.alzheimers Date: Fri, Mar 18, 2005, 3:38pm From: cglghl@knology.net (Gwen Love) Ronny, when your Mom wants to go home, just tell her you'll go later, or tomorow, or after lunch, etc. instead of telling her she is home. That will be much easier on both of you. Gwen Ronny: There's a lot of truth in what you say here Gwen. And sometimes I do tell Mom we will go home later,etc. Usually do that at night when she's in bed and needing to get to sleep. So I may tell her it's dark out, to cold or rainy or whatever and that we're staying here tonight and will go in the morning. I don't think she ever remembers those promises? Or at least I hope she doesn't. Re: Insights to share? Group: alt.support.alzheimers Date: Fri, Mar 18, 2005, 3:38pm From: cglghl@knology.net (Gwen Love) Ronny, when your Mom wants to go home, just tell her you'll go later, or tomorow, or after lunch, etc. instead of telling her she is home. That will be much easier on both of you. Gwen Ronny: There's a lot of truth in what you say here Gwen. And sometimes I do tell Mom we will go home later,etc. Usually do that at night when she's in bed and needing to get to sleep. So I may tell her it's dark out, to cold or rainy or whatever and that we're staying here tonight and will go in the morning. I don't think she ever remembers those promises? Or at least I hope she doesn't. Ronny, We used to tell my mother in law that we would take her home "tomorrow" or "on the weekend" or if it was the weekend we would tell her "on Monday" and sometimes we'd say "at the end of the week". Sure she would ask again and again, but that was what we always told her and it worked for a second or two. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Yes, whatever I say works for a few seconds too Evelyn, I think it all comes down to what would make ME feel a bit better at the time. People have been discussing guilt, and the feelings I have about telling stories sometime conflict with the feelings I have about not being able to take her wherever her mind is wanting to go to. One day when she was really wrapped up in this "going home" thing, I put her in the car and drove around town to all the places that she had frequented while living here and asked her "is this it?" She was in a good mood that day, and kind of got a kick out of it. Mom still adores going for rides. When she got tired of riding around she had been so thoroughly distracted that she did not mention going again for several hours. SignatureLesanne > Yes, whatever I say works for a few seconds too Evelyn, I think it all > comes [quoted text clipped - 11 lines] > around she had been so thoroughly distracted that she did not mention > going again for several hours. I think the main idea is to use the fact that their memory is not functioning well to distract them even for just a moment, because that moment is usually enough to allow them to forget whatever it is they are repeatedly asking for. I quickly realized that there was NO way I could bring her into what we know as *reality*.... she had her own reality, and the only thing was to work with that. At first I was dealing with the situation incorrectly, meaning that I would not lie to her. I would always tell her the truth, but she would argue and argue and argue with what SHE perceived to be the truth. So I decided that to avoid the arguments I would tell her something that was in line with her truth in the interest of peace. It worked very well. We can think about it this way; What if someone suddenly told you you cannot trust your own eyes ears and perceptions anymore? This is exactly what they are experiencing...... faulty perceptions. So the next question is; Is it better to keep our loved ones peaceful and happy in whatever way you can, or is it better to argue till you are both exhausted and bad feelings ensue? Strange to say that although they cannot remember what you told them two seconds ago, they can often hold on to an emotion for a while longer. I know it seems like a backwards way to deal with people, but when someone is suffering from alzheimers disease, if you have to change the rules to keep them happy and comfortable, and it harms no one, then go for it. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") I understand what you are saying Evelyn and rather feel envious of people who care for folk who are that easily distracted. Here is a script. Ma. "I want to go home" me. "We will go a little later, right now lets ________" Ma. "NO I want to go home NOW" me. "Your brother is coming for you later, there is no gas in the car" Ma. "I want to go NOW get gas for the car" and so on.... If I tell her she is home and walk her around the house showing her her things she gets confused Enough to not argue about it. SignatureLesanne >> Yes, whatever I say works for a few seconds too Evelyn, I think it all >> comes [quoted text clipped - 40 lines] > is suffering from alzheimers disease, if you have to change the rules to > keep them happy and comfortable, and it harms no one, then go for it. >I understand what you are saying Evelyn and rather feel envious of people >who care for folk who are that easily distracted. Here is a script. [quoted text clipped - 7 lines] > If I tell her she is home and walk her around the house showing her her > things she gets confused Enough to not argue about it. Hi Lesanne, Believe me I do know. They can get pretty much "in your face" when they want to... and I think it is worse if you are caring for a parent. They are used to telling you what to do for all your life! Peter and I used to switch off.... she would get on my case, and he'd take over. If she got on his, I would take over. It was a constant battle dealing with the confusion of the damned illness. It would be so much easier if you could only explain to them once and they could retain it! SignatureRegards, Evelyn (to reply to me personally, remove 'sox") And how. SignatureLesanne . It would be so much easier if you could > only explain to them once and they could retain it! What used to sometimes work for us was to address the underlying anxiety. For example, when my mother in law was asking to go home, if you really stood back and considered what was upsetting her, it was being worried about how she would get somewhere safe, find her bed, how she would get fed, about where family members were, about some unspecified duties she might be neglecting etc. etc. We found that addressing that stuff worked better than arguing about going home - in other words, to put arms around her and reassure her in a positive, loving way that she was safe, that we wouldn't leave her, that we would take care of her, that her parents were okay (even though they were long dead). That often worked, particularly for her if we combined it with some humour and some distractions. If your mom is really getting agitated, I'd be thinking about some medication, since it is not about going home. Its about all the terrors that go with not knowing whats going or what you are supposed to be doing. Mary G. Dave wrote: The posts about "going home" got my attention. My 93 yr old mother has been through a lot, and after breaking her second hip and having a cerebral stroke developed what we believed (and the doc also) to be AZ. She had all the symptoms, including becoming agitated in the afternoon, sundowning, and being afraid because she didn't know where home was or how to get there. (She lives with us) In fact, she had a tough time that turned out to be the stroke and we took her to the ER, combative, etc. After a few days in the hospital, she was placed in a nursing home to try to get her psychotically stabilized. She was on many meds, along with aricept and respirdal, and the combination wasn't working for her at all. Ativan and Haldol had no effect. The nursing home called me in the middle of the night: would I come in and try to calm Mom down? She had choked the nurse (grabbed her by the med key around her neck), spit the meds she tried to give her in her face, kicking and fighting (93 years old... - never in her life like that). She even went over and punched her roomate. They sent her off to the hospital in the ambulance along with the boys in blue. I met with the doctor there after he examined her. Seems she has pneumonia and a mass in one of her lungs, renal failure and in poor shape. He immediately ordered Hospice care for her, which of course means comfort care/meds only. We brought her home, and she is off all of her previous meds (about 12 prescriptions for COPD, CHF, etc.) She is now lucid at any time of the day. Very happy and pleasant. Knows where she is at all times. The change is unbelievable. I know that she is fading, but it's so good to see her ejoying family again in her last weeks/months and not having to deal with psychotic incidents (us too). She has been here two weeks already and every day is a blessing. I have never read of anyone coming back from sundowning, and the "going home" bit, and had to share this. >What used to sometimes work for us was to address the underlying >anxiety. [quoted text clipped - 18 lines] > >Mary G. > Dave wrote: > [quoted text clipped - 29 lines] > I have never read of anyone coming back from sundowning, and the > "going home" bit, and had to share this. Dave, there are certain types of dementia that anti-psychotics seem to make worse. I have been reading here for a couple of years, and a few times this issue has come up. That is why it is a really good idea to get a truly full diagnostic testing done, so you know. We were among the lucky ones, in that they worked well and just as they are supposed to do with minimal side effects. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Dave, I'm happy for all of you that you are able to relax with her at home now, and it is easier for everyone. Every good moment is precious. Gwen > Dave wrote: > [quoted text clipped - 52 lines] > > > >Mary G. >Re: Insights to share? >From: (Gwen Love) [quoted text clipped - 10 lines] >go in the morning. I don't think she ever remembers those promises? Or >at least I hope she doesn't. That's the point - she doesn't remember that she IS home, and she doesn't remember those promises. If she did, you wouldn't need to make them . . . Just a little *may stay in memory, depending how bad the AD has gotten, but I found that this actually helped acceptance of the next promise as it seemed familiar. I have not been in here for a long time.What I am about to share i am sure most will think I am crazy.My mom is getting better in many ways.I believe it to be because i have changed her diet.She has honey everyday.No pork,very little red meat,very little milk,Absolutely NO sugar ,not even splenda.We use honey as a sweetener.Vegetables,fruit,chicken,fish,lots of water,controlled protien,carbs,and only good fats.We use only olive oil.Many other things i could say,But i believe honey has stopped the production or at least slowed it down of bad bacteria.Honey is a miracle food,believe me.My mom has so improved that my little grandchildren have noticed.She is up walking around all the time,makin her own bed,went dancing at a seniors dance,etc.And yes i just recently had full blood work done on her.Her doctor says shes in very good health.Her memory has improved quite a bit.And not just a few days but over a few months.Oh shes not perfect but i and many others see great improvements.Her diabetes has greatly improved,her lasics (sp) has been cut in half.Just wanting to let some who may believe me know.Now on with the crazyness of your replys.Barb You won't get any craziness from me, Barb. If you haven't tried it, don't knock it! Gwen > I have not been in here for a long time.What I am about to share i am > sure most will think I am crazy.My mom is getting better in many ways.I [quoted text clipped - 13 lines] > improved,her lasics (sp) has been cut in half.Just wanting to let some > who may believe me know.Now on with the crazyness of your replys.Barb >My question.....when he nose dived in June it happened within the space >of a couple of hours, he was completely out of touch with any reality at [quoted text clipped - 8 lines] >happen again? I have noticed some slipping just in the last week. >Again , thank you. Well, we haven't cared for my Mom as long, but yes, we saw a very big change in her in just one week. Agitative, combative, very unlike the person she ever was. So, I called the Doc who told me to take her to the ER. Turns out she had a severe UTI, and also some mini-strokes due to cerebral arterioschlerosis, so she has dementia coming from different things. We are now in a short respite while she is at a nursing home where they are trying to get her some meds to keep her controlled a bit. So far they're not doing well. Last night she punched a CNA in the stomach, was kicking and screaming. Thankfully it's a good place and they know how to handle that. We saw her today, and she remembers nothing about last night except that she got in "some kind of trouble", but she says that everyone is bright and cheery towards her this morning.. LOL! I sure am hoping for some stabilization before she comes 'home". Dave Alzheimer's is unpredictable, but tends not to have dramatic sudden drops, which is more characteristic of multi-infarct (from mini-strokes). However, many people with AD ALSO have multi-infarct on top of the AD, so you never know what is going on. When you see a dramatic change over a short period of time, its always worth getting checked out, because it can be due to a hidden infection, a stroke, or other health problems concurrent to the AD. Even a cold can throw someone with AD for a loop. What makes you or I a little dopey and fuzzy headed can completely sink someone with AD. They just don't have any extra capacity to buffer adversity. People with AD can often be sick and not know it, or show now signs outwardly. UTIs are a common culprit. A normal person would be complaining of symptoms but sometimes people with AD don't seem to feel them. I noticed that my late MIL would hurt herself, and the only way you'd find out out was seeing the bruises. I don't know if she didn't feel pain or discomfort the way you or I would, or if she just didn't know what it meant or where it came from, so couldn't articulate that she was hurting somewhere. However, anything like pain, a fever, stress etc. would make her go down mentally, and that was noticable. Mary G. Something that was bothering my MIL was dental work. A filling was crumbling and she never said anything. If we hadn't been eating a meal with her, we wouldn't have noticed her expression when she bit on something and it hurt. When we asked her 5 minutes later if her tooth hurt, she said it was fine. Now we bring her a skim milk chocolate shake from Starbucks every week when we visit and watch her expression. The dentist said between the cold and the sugar, it should make a good checkpoint. The dentist also said it was a common problem because when you think of health issues, you tend to think of medical not dental. Aside from that, she really enjoys the shake. :-) Karen > Alzheimer's is unpredictable, but tends not to have dramatic sudden > drops, which is more characteristic of multi-infarct (from > mini-strokes). However, many people with AD ALSO have multi-infarct on > top of the AD, so you never know what is going on. ---snip--- > People with AD can often be sick and not know it, or show now signs > outwardly. UTIs are a common culprit. A normal person would be [quoted text clipped - 7 lines] > > Mary G. |
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