I would like any input on how quickly the dementia has incresed in their loved ones. My grandma has been telling the same things over and over for years. In the past few months she has had trouble recalling family member names. I have to write every appointment on her calendar or she will ask me every time I see her when they are. She will tell me the same thing two or three times in an hour. I have also noticed that she no longer knows left from right. I can tell of the progession and it seems to be increasing at a faster rate. I suppose that it is different for everyone. Just wanted any feedback that I can find.

It is so great to have found this place.

RGD

lynn, thank you for sharing with us. we can make observations in our lo but only someone who lives with it can give us a real idea of what it is like. are you keeping a personal journal for a reference? i pray the meds help again. take care and keep in touch.

rg. i have found it helpful to cut down on the frustration of forgetting a name i often try to beat daisy to it by announcing.' oh look! your daughter, jane, is here!' i let her make the connection and she can take it from there. she is much more forgetful than early stage but it helps her. i also greet her with something like, 'it's a beautiful warm summer, or cool fall morning day. whatever the situation calls for i try to begin the conversation with information.and then she will comment on things.. her frustration level has lessened. maybe these tips will help.

quote:

Originally posted by SnowyLynne:
I saw my Neuro.yesterday & am back on Razadyne.I have slipped the last 6 months.Asking the same questions alot repeating things over & over.I'm glad I am as aware as I am,this helps the Dr.alot.I expect to regain what I lost.........
I did before hope it does again.........

Lynne I hope it does work out for you what an extraordinary woman you are to keep sharing your journey here with us
Your in my thoughts always Lynne please let us know how it works out when you can

So far she hasn't forgetten my name or face but she has trouble recalling the names of people that she is talking about if they aren't there. You can tell that she can see the face but can't come up with the name. The same thing with tv shows and just everyday items. She also doesn't know left from right anymore. It doesn't matter if you tell her left or right she will go left. It is sad....

hi rg. i worked in an alz,. unit and the only thing i know about alz.for certain that there is no rhyme or reason and is there is no normal progression. everyone is different. daisy has and continues to have a very slow decline over years with no drastic changes ever. just subtle changes that may or may not spring back for a time.the plateaus, then up and then down. one couple that was amazing that i helped care for was a true love. she started forgetting and repeating herself over and over at the same meal. 8 of us sat at the dining table everyday in the indepentdent living facility. her H would fill her in. then he went in the hospital for a blood problem. when he came back he was starting to forget things like which meal he had ordered and when they brought it ot him he would deny ordering that but would eat it anyway. then he started forgetting simple things, like the day, then names, the seasons, etc. they both declined at exactly the same rate, he turned loud and weepy, she so mild and soft spoken and gracious. they ended up in assisted living at the same time and so it went. thankfully they never forgot their children's names or my face but couldn't remember that they any of us had just been there or had steped out to the lobby to get them a juice. no one had ever seen a mutual decline of two lo ones so quickly and completely. they even passed away very closely. so i guess, the only answer to your question is there is no answer. just be aware of the small changes, they may occur and snap back or they may be a gradual decline. sorry i can't give you any answers.

I saw my Neuro.yesterday & am back on Razadyne.I have slipped the last 6 months.Asking the same questions alot repeating things over & over.I'm glad I am as aware as I am,this helps the Dr.alot.I expect to regain what I lost.........
I did before hope it does again.........

With my mom (vascular dementia) she has had ups and downs and plateaus - she has actually improved from time to time. But as others have pointed out, if you look at the total graph line, it slowly, but surely is heading in the downward direction. There isn't much rhyme or reason to an individual's progression through a disease to death, doesn't matter WHAT their affliction. It is wise not to pay too much attention to benchmarks; rather to cherish ever moment you are given together. The ones not worth remembering will fade over time, but the others will be crystal clear in your heart forever.

My mom was on a respirator for a while, and I remember thinking I would never hear her speak again. After that, despite hearing stories over and over and over again, I am so happy simply to hear her voice. None of us knows how much time we have with our loved ones, so drink it up - even if there is repetition.

quote:

Originally posted by Hannah:
I agree that there are peaks and valleys, ups and downs, and plateaus. The only constant is that it is a decline - things don't get better. It seems like once a skill is lost or an ability is gone it is gone and rarely returns. Sometimes this is gradual and sometimes it is overnight. My Mom has been declining faster lately and when I look at the 'stages' information I have, it appears that the middle stage is longest (in general) and the later stages shorter.

I couldn't have said it better myself.

I also echo the middle stage is generally the longest. Think of it as a plateau with cracks here and there. Once the LO drops off the plateau (so to speak), things tend to accelerate. However, each LO is different. Mom, for instance, is considered to be in early late stage, but can still feed herself and use the bathroom, albeit with a lot of prompting.

I agree that there are peaks and valleys, ups and downs, and plateaus. The only constant is that it is a decline - things don't get better. It seems like once a skill is lost or an ability is gone it is gone and rarely returns. Sometimes this is gradual and sometimes it is overnight. My Mom has been declining faster lately and when I look at the 'stages' information I have, it appears that the middle stage is longest (in general) and the later stages shorter.

Dear RG, Welcome!
Happy is right Luv, the only consistency in our LOs is inconsistency. Just as no two snowflakes are alike, so is every human being. When any disease strikes-- every individual responds in their own way. Better to take it as it comes and that's enough of a challenge! Many of our LOs change day to day, moment to moment. Like the weather it is hard to predict. Hang in there Luv.

i rosie's, every situation is different. that's why this stie is such a treasure trove of shared life experiences. the staircase example was perfect. some are like the emergency stair cases on a high rise with many landings, others are like an escalator. keep an eye out for nuances in behavior. these nuances will help you provide the best care possible. for example, after 4 years with daisy i can read so much about where she is at a given time, if she cranes her neck from her chair, she needs to use the bathroom and can't remember where it is, most often she can still find it on her own. when she starts folding afghans i know we are in for a long haul of anxiety, when she opens the door to the spare bedroom and looks in, i know we are going to have an episode of her looking for her family to come to pick her up, will be very confused of how she got here... just little things that no one else knows what they mean. i know the phrases she uses when she is in any particular decade. the list is endless and the changes are often not permanent. she will revert back to her 'normal' schedule. it is difficult to explain these things to various caregivers, it is just something you learn over time. there is no answer to say for sure if each change will be permanent. every day can be the same, everyday can be a buckle up and put on your thinking cap day to figure out what's happening.the only consistency is inconsistency. tune into little signs. they help.

Hi Rosie, my mother has dementia. I go home every month for a few days or longer if needed. My Mom has changed a lot in this last visit. She can't feed herself, you have to remind her to swallow. The cg has her drinking out of a plastic cup because she was biting to hard on glass. She yells at night when the cg gets her ready for bed. It's very hard hearing her call out my name... but was advise to stay away till Mom was ready for bed. These last six months has brought on a large change. She forgets how to walk... still knows who everyone is... and she tells us she wants to die... she wants to be with her parents. Heart breaking. All I can do is comfort her and listen to her tell me how she feels if she can ... I too was wondering how fast her brain is dying. She has had mini strokes and maybe AD. Can't do mri because of pace maker... It's hard watching the person you love change.

Hi RG! Welcome!! My mother went for several years with mild forgetfulness and asking the same questions -- if you didn't know her well you probably wouldn't suspect a problem. Probably 4-5 years. After Dad died she went downhill VERY fast then sort of leveled off. Dad has been gone for two years now and Mom is slowly getting worse. Every once in awhile she is "with us" and I almost convince myself she is getting better. But sometimes a week will go by and she is back to what is now her normal. It's exactly like BC said -- like going down stairs, coming to a landing, going on down the stairs. It's sad, frustrating for both the family, CG and even Mom when she is aware of it.

Good luck and hang in there.

Heres the thing I found RG with my mil there is a big difference between the progression and the actual forgetfulness itself.
Do you really know all the little nuances about Gran? Heres what I mean cause Docs wont know this, what I mean by this is they dont know her like you do they just say shes forgetting but exactly what IS she forgetting see what I mean
One thing that caught me was when MIL was forgetting names I know by looking at her when the changes occurred I could see her forgetting the name but remembering the face but then a few months later I caught her at a complete loss she looked down at the ground and got angered when I asked who this was that came to visit her since I sensed something more than agitation was going on that time.

When your Gran is having memory difficulties it doesnt mean she is going downhill it just means this is a portion of the brain that is affected now with that being said get yourself a notebook and when something like this (or anything for that matter) happens write it down so that the next time it does occur you have a frame of reference to look back on to gauge whether or not its getting worse.
Alot of time they can "plateau" for a period of time so you really shouldnt read too much into it I believe you will know when it gets worse and sweetie right now as sad as this may be for you its really not something you should dwell on it just stresses you out in the end....just enjoy the moments their so precious

RGD, you are right that these things do progress differently. Do you have a diagnosis for her dementia? If not, that would be a starting point. The little that my Mom suffers from seems to have been the results of mini strokes, with stimulation, activities, she seems to have recovered a good bit, but especially if she is overtired (happening more these days), she gets distracted and sorta foggy. It also happens during long cloudy or rainy spells.

If this has come on suddenly (concerned about the left right confusion) a stroke could be the cause. Meds to prevent another one may halt this. Some people are help with B 12. , But if it is AD, and she has run through the available meds, what I have seen here, leads me to believe that for some, it is like going down steps, some flights of stairs have landings, and if so they can level off before declining again , and some flights don't have landings. I know that with my Mom, I often watch her too closely and read too much into something temporary . I have forgotten if you mentioned how long ago you moved her. There can be a lot of stress with a move that causes setbacks.

If you are really seeing some significant changes, you should talk to her doc. Again the possibility of a stroke comes to mind, and they can help prevent those and often some recovery can be achieved.

I know you will get better help than mine soon.