Hi all. My mil is finally in her inlaw apt as of a few nights ago. It is a little better as I do not have to constantly chastise my children into being quiet in the morning so they do not wake her (she is a late sleeper). I do know with a change in environment causes more confusion and I have definitely seen this. She still spends a lot of time in our home but is inviting herself to come along on my outings, the few that I or my children and husband get and that is becoming an issue with me when it is just me and my kids and hubby is at work. He lets it slide better than I and has no guilt in brushing her off and convincing her to stay put. I on the other hand get upset and angry (internally) and get more resentful. I do think this is because prior to her becoming ill she would just take it upon herself to just show up at our home and visit w/o calling or asking if we would be home or had plans and we had to just deal with her inconsiderate behavior, now with her living here and with her dementia it is harder for me to deal with the guilt I feel when not wanting her to come because I don't know what is the illness and what is her baseline (true) personality.

My first question is: How come some days/moments she seems right on and then so off? It is so difficult to know when she is really not aware or totally has forgotten something and when she is just manipulating me/the situation. She was mostly like that pre-dementia so I find it very difficult to know if she is playing games with my head. I know this probably sounds "nitpicky" but it is very difficult when trying to care for her medically (Crohns, diabetes, etc.). My DH said to just keep telling her and if she doesn't do it not to go crazy about it (which I am as I feel responsible for her medical well-being, I am Medical POA), and if she gets in a bad place she will just end up in the hospital and there is nothing more I can do.

Secondly, I am having such a hard time letting all of this really register with me. I am a very intelligent woman and have a pretty strong medical background but I am so confused as to why some things she will remember, some things she does not, some days she remembers something from a week ago and then some days 10 minutes ago is a blank for her. I feel as if I am losing my mind just trying to put this disease in some sort of logical perspective. She is in the process of getting an appt with a neurologist who specializes in Alz and memory disorders but that probably will not be until November and I need a little more insight as to what is the true path of this disease in the early stages. She is pretty good with ADLs for the most part with constant reminders but the day to day functioning and conversation and her adherence to medical advice is where she is really having trouble. We took her ck book away months ago as she was bouncing cks all over and messing it up, husband has financial POA. She does forget phone numbers, sometimes she forgets reading the newspaper, etc. Some days are worse than others...oh I am so not getting the ins and outs of this.

There are definitely ups and downs of AD, like you described with good days and not so good days.
I can't imagine that she would just be content sitting in her own apt most of the time. She likes to be with people and go out and about still. Could she maybe go to adult daycare once in awhile while you go on outings? Or could you get her a home health aide that could take her out while you go out on a separate outing?

I'm sorry you're all having to deal with this.

There are different causes for dementia, and each manifests itself somewhat differently. For example, the symptoms of Alz are quite different from many symptoms of frontal-temporal lobe dementia (FTD). Visiting the specialist neuro will help you know what to educate yourself on.

You'll find that quite a few other posters have very similar situations to yours, with the same questions about why sometimes our LOs (loved ones) seem "on" and sometimes "off", sometimes genuinely confused, sometimes manipulative.

To me, it's a lot like any other medical condition. Symptoms aren't identical among people - and they vary within the individual. If you break an arm, it doesn't hurt exactly the same amount every single day until it heals. And the symptoms of brain damage work much the same way. Plus, our LOs have screwed-up brain chemistry, so that throws another wrench into the works.

Until other folks come along and post, here's a document that might be helpful.
http://www.alzheimer.guelph.or...tia%20Experience.pdf

And another, because I bet she thinks she's just fine and nothing's wrong:
http://alzonline.phhp.ufl.edu/...ding/Anosognosia.pdf

I think many of us (I know I did) go through a phase of trying to make sense out of the changes and their lack of consistency.

Eventually we move out of that phase and into the "it is what it is" phase - i.e., we don't care much WHY the symptoms manifest as they do - we just want to know how to deal with them so we can help our LOs and try and get on with our own lives with as little disruption as possible.

You'll go through a period of trying to "connect" her confused statements to something real...and eventually you'll see that there isn't actually any discernible connection to reality.

quote:

I do think this is because prior to her becoming ill she would just take it upon herself to just show up at our home and visit w/o calling or asking if we would be home or had plans and we had to just deal with her inconsiderate behavior,

We had this all our married life, too, so I know how that feels. Showing up and parking her tush at our house on weekends no matter what plans we had, it was hard.

I think it might be helpful to start kind of dividing things in your mind into 'pre-AD' and 'post-AD', sort of a mental house cleaning. I am not explaining this very well perhaps, but from now on her behavior will become more and more self-centered, and lack logic.

The damage that AD does to our LOs brains just destroys any capability to see things from someone else's point of view. I had a VERY hard time the first year or so dealing with her behavior as I was seeing it as her 'becoming more selfish' when it was the disease removing her inhibitions and emotional brakes, so to speak.

I was tortured by it all, resentful as hell, but time and time again my husband would say 'But she has AD!' and one day I decided to dump everything that happened pre-AD and put it in it's own 'box' and deal with what's happening now, in front of me, kind of pretend I was just meeting her for the first time from an emotional standpoint (which I was meeting THIS person for the first time, affected as she was with AD). Taking off the lenses I'd looked at her with for 27 years, because in many ways she is a different person.

The AD will only bring out the stronger aspects of her personality, many times the facets that drove you crazy all these years, the difference is that it's not free will driving it, but the disease. My MIL certainly does not remember any of her pre-AD pushiness, week-long visits out of the blue, demands and angry phone calls, it does me no good to expend energy remembering them myself :-)

Christine,

I feel for you. I know how I felt when we had to move my mother from her home 700 miles away to be near us so I could watch over her. For 32 years, we had a long-distance relationship, which was generally fine with me. But when she came back into my life, it was extremely frustrating. And then trying to figure out how her brain was working, well you described it very well. You want to "figure it out", but it just doesn't work like that.

Grassflower really nailed it when she talked about moving into the "it is what it is" phase (I use that phrase all the time now). You need to get there for your OWN sanity. You cannot FIX it, you can only do the best you can to adjust your reactions to her behavior. You will find what works for you and her.

As far as the remembering goes, I've sort of seen that Mom will remember something if it either really upset her or really made her happy. She'll remember it for a while (that time frame keeps getting shorter and shorter) and then it, too, will be forgotten. But what she had for a meal is forgotten before she leaves the room. And by the time she gets back to her room, she's forgotten she even ate. But I can remember well when she was at the stage your MIL is in. What of the best things I've heard about dealing with this disease is to remember that they are doing the best they can to try to cope. We just need to help them the best we can. And what works one day may not work the next, so it is a constant battle to adjust to the changes in our LO.

I hope I haven't been a bearer of bad news. Those are just somes of the things I've learned and observed. Hope it helps.

God bless you!

Thanks all for your help in trying to rationalize something that is impossible to rationalize for me. It has been very difficult and I feel as if I am the only one who is really being affected by her behavior and living with us. My husband is hardly home as he works long hours so she is ultimately my responsibility but he says she is not. Now how does that make sense when I am the one here all day with her? I am trying to cope and having such a hard time trying not to resent her or what is happening to her.

I do like the suggestion to forget pre-AD and live post-AD but how do I get there? I wish I could as my anxiety and frustration would lessen so much. I know it is what it is but how come I am so angry about it? I think a lot comes into play as I didn't think it would be this hard, didn't think it would be this intrusive into my life and I didn't think she would be this bad. She is fighting all that I am trying to do when it comes to helping her medically, i.e. diabetes and eating the right things, staying away from the bad things, eating her meals (but will eat if I make it for her and she expects me to do this) and it gets me so angry when she just disregards what she needs to to keep these issues in a healthy place, knowing she cannot really get it but sometimes I think she does and just doesn't care. She has high Chol and they just upped her meds again and she insists on having bacon, etc. Again --anger on my part. As far as her Crohns she is still in a flare and I am well aware of the danger of this, I do realize she cannot grasp this as she has shown me she doesn't get it, but she is so inconsistent with the treatment given to her and some days she will follow orders some days she will not. She is bleeding and having bouts of diarrhea and accidents on a daily basis. I am doing the best I can but I am so frustrated that I cannot get her to just do what is in front of her. I know I cannot fix it and I know it must be so overwhelming for her to comprehend so I in turn feel so guilty in getting angry with her and her lack of responsibility which I know logically she cannot do. How foolish am I?

I awaiting a nurses aide to come in and hopefully this will help but she is fighting me on this too. She basically has no choice as I have to return to work (I work at home) and I cannot take the time out of my schedule for work to stop and make her breakfast, lunch and make sure she takes her meds. I am not sure how it is going to work as she gets up late and then she stays up for about an hour or so and goes back to sleep. Mainly her day is about sleep, reading, sleep...That also gets me so upset as I have enrolled her in the Sr. Ctr. but she has no interest and really does not want to participate outside of this house in anything. So I am just letting her live as she chooses in that realm. Hopefully the aide will get her going although I doubt it as she really hates any outside intervention at all.

Thanks again for everyone's comments and suggestions. Hopefully I make it through these beginning stages before I really lose what ever sanity I have left.

Grassflower, thanks for that reading link, it really hit home and hopefully will give me the insight I need.

Christine, I had very conflicted feelings about my mom and ending up being the person responsible for her. She and I were not particularly close and I had longstanding resentment over several issues towards her.

So when her condition became apparent under very stressful circumstances, I suddenly found myself stuck caring for an "80-year special needs child" (!) at the same time that I discovered a number of very upsetting things about my only other close relative, my brother.

It was pretty much all I thought about 24/7. Just awful.

I found that talking to a family therapist was very helpful. She actually had experience in working with family members of people with dementia so understood the reality of what was happening with my mom.

That might be something for you to consider. My husband's super-supportive, but what really helped me was time talking and thinking with someone who was not part of the mix.

Just a thought.

quote:

I do like the suggestion to forget pre-AD and live post-AD but how do I get there? I wish I could as my anxiety and frustration would lessen so much.

I can't really explain the process to you...it took a good bit of time and effort on my part, sometimes even saying aloud, 'she can't help it' 'it's the disease' to reinforce it, for instance when I'd hang up from an especially nasty phone call.I jumped on my own negative thoughts when they occurred, thinking 'stop that, that's not right' when attributing something to temperament and not AD. Sounds batty, right? But, actually physically "reprimanding" myself, making myself stop and think, focused me every time. I'm alone a good part of the time, my friends are all caring for parents and counseling isn't common here, so that was the solution I came up with, verbalizing a response to what I was thinking. Some people recommend meditation, imagining putting all the things you want to forget in a box, and then putting it on a closet shelf and closing the door. I'm not good at meditation, can't sit still long enough :-D

Well I'm so glad that her apartment is ready,,and that she's in it now. Hopefully the aide that comes to help with her care,,can keep her diverted away from the main house while you do your job,,and also,,,its important that you and your immediate family still get out and do things.

On the next note,,your MIL needs to be "taught" that she has limits within "your part of the house",,and you may have to remind her of it daily,,try hard not to get too angry,,cause I know how it grates on ones nerves to have to be so repetitive about the same old thing all the time.

Yes,,MIL is going thru alot of changes,,and sometimes she very well may be in her "better frame of mind" and then trip over in her mind,,which will make behavior changes and such,,,and as I've always said,,our LO's with AD,,,even when advanced,,can still be dumb like a fox.

Do what you can for as long as you can,,and when you can't,,,start making other living arrangements,,,everyone will benefit from it in the long run. Be strong,,I know how difficult all of this is for you,,but one way or another,,you'll get thru it. Keep us posted on things,,and hang tight. Peace

Grassflower, it sounds as if you have had it really tough, I am so sorry that you have to endure extra stresses besides the AD, maybe caring for your mother will bring you some sort of closure or peace with the past, I wish that for you. You are very special to do what you are doing after having a strained relationship, I know how hard it is to do this with someone you are not that close with, it is not a job that comes with many rewards but remember only someone that is truly special has the ability to do what you are doing.

I actually am seeing a counselor and it does help and sometimes it does not, but either way this is someone I have been seeing for quite a while for other issues and she keeps putting me back into some sort of reality with these issues that come up. I wish you all the best with your tough endeavor, this place is great in that we can cheer each other on when we feel so completely alone. No one knows how tough it can be unless they are actually doing it.

Peace and strength.

Oh I wish I could only meditate but I don't have the time with two young children but I do make some attempt at getting to the gym to get out my frustrations (although it has been affecting my workouts as I cannot stay focused) and I take pilates once a week so hopefully these things will help. I am finding we all need to find out what exactly it is to help us get through this and focus outside of the situation but I guess I still need a lot of practice.

Thanks for all your help and reassurance. Good luck to you also.

Can you believe she actually spent the whole day in her apt today and I actually felt guilty? I went in to give her her pills after she finally got up (11:30 a.m.) and she was making her breakfast! The rest of the day I actually had to myself until it was time to pick up the boys.

Thank you so much for your continuous support, I really am feeling not so alone when speaking with everyone that has been replying. This place is a Godsend.

Thanks so much for the encouragement.