Seriously, now I'm at my wits end. My sister went to visit my mother today in the hospital. She was much more lucid, less agitated, better memory, clear speech, knew what she was talking about, etc... I could have sworn they took her off the AD meds. I was wrong. The difference is that they are actually getting all of her meds into her now. I spoke to the nurse that has worked with her many times since July. He said that she is much less agitated, but still wandering, confused, resistant to eating and care, she checks her food and drink to make sure there are no meds (there are, but if she suspects then she won't eat or drink), still incontinent, etc..., but still much less agitated and irritable.

I am wondering is she is doing slightly better because she didn't want to leave the hospital in the first place. I am wondering if she really can be stabilized. I can't believe the conversations that she was having with my sister today, remembering so much!

Of course she tried to choke my sister at some point, over a Reece's Peanut Butter Cup.

I know there are ups and downs with this disease. I still can't figure out if it's AD or some other form of dementia. I know, I have to step back and let the professionals figure it out. I'm just so confused and frustrated. What do we do with her next?!?!?!?

Hi, i think your idea of stepping back and letting the professionals figure it out is a good one. Regardless of what kind of dementia it is the behavior will be unpredictable and different for each individual.

this morning my hubby said he wanted to go out for lunch, got all ready and he had said why are we going out, let's order in. Both sounded very clear but certainly confusing.

It is such a roller coaster ride. Go with the flow

I actually got the idea to step back a little from these boards. If seeing me makes her more agitated and out of control, then I need to physically step back. It doesn't mean that I'm not calling twice a day or more to check up on her care and her behavior.

I'm trying to just accept that it is what it is with this disease. Trying is the operative word here, trying.

I am new to this way of communicating, but I understand what you are saying. I found a book by Leeza Gibbons called "Take your oxygen first" to be real helpful. I live in CA and my mother lives in PA. It is really hard to not be there. Enjoy her when you can. She is your mother and I visit my mother every 3-4 months. I have learned that if I am relaxed, she relaxes a little more too. She is now having to be moved to another room or possibly a facility as we are running out of her money. What do you suggest?

quote:

Originally posted by Marjk:
I actually got the idea to step back a little from these boards.

I have to do this from time to time. There are days when the pain in my own life makes it impossible for me to witness the pain here, I get agitated and realize I am resenting people posting about what seems like a small issue to me at that moment (but intellectually I know is a big one for them) or I am tempted to respond with a smart remark or a snarky comment. So I put myself in message board timeout until I feel stronger emotionally.

The boards are here to help, and we certainly don't want you to go away for an extended period, but there are times when you need to think about something else. Your mom is in a safe place for right now; this might be a good time for a mini-mental vacation, if you feel you need one.

But remember -- we are still here waiting for you and caring for you. Hurry back.

I wrote it wrong. I meant I got the idea to step back from my mother, NOT stepping back from these boards. These boards are my savior! Between work and school and my mother, I have no time for a face to face support group. I would have a total and complete breakdown if not for the people on here!

Marj,

This latest change is still new. Give it a little time. I'm sure getting her meds into her has actually helped tremendously. Allow a little more time for the blood levels of them to become normal for her.

I think your latest plan for the facility that has the behavioral unit as well as skilled nursing is a good move. Give it some time right now in the hospital and then work with them to get her placed in a facility that can and will deal with her specific issues.

Know that we care.

Marj, I am trying to catch up on old posts here..I am so sorry that happened to your sister..she must have been so scared and confused when that happened..it really does sound like she is better for now to be in the hospital..is she eating any food at all? just fluids so she won;t dehydrate? This really is a roller coaster for both of you...Give yourself a bit of a break i agree..Let them acess your moms situation...I think this is one of those times were you just need to take baby steps...We are always here for you..sorry I missed all of this last week..

We had the family meeting today with the doc, SW, head nurse an dietician. My mother is eating a little, she's more into liquids. Her blood sugar is high, but no higher than it's been for the past 12 or so years and she's never been on medication. They are stopping the artificial sweetener stuff (which my mother never liked). She is still very resistant to care, VERY! They have pretty much done all that they can and her next stop is the behavioral NF. Of course there is a waiting list, but hopefully the hospital can move her ahead.

Everyone agreed that at this point it doesn't matter what type of dementia she has (AD vs. FTD). We know for sure it's not vascular. All the professionals are sure she is pretty advanced with her dementia. They can't tell us if her behavioral issues will ever subside. I think her next stage will be end stage. It just amazes everyone that she can still be so cognitively sharp at times. I think that is her downfall, she sort of knows something is going on and she doesn't want ANYONE to control her (in her mind).

I've actually stepped back and let the professionals take over. As long as they keep me posted and I agree with what they are doing, things are fine. I am learning to relax a bit knowing that she is getting the best care possible right now. We also have a plan (the behavioral NF) so that is relaxing me too. When the money runs out, they will help us apply for Medicaid, which is different for a behavioral place than for a regular SNF.

I can do only what I can do, so much of this is not in my control.

Marjk, It is that old OCD some of us have but at least you are releasing control to professionals you trust and that is important. Sounds as if everyone is doing best they can for your mother and know you are relieved. Take care of yourself as worry is not good for you. Please keep us advised of out come and placement.
Peace my fellow traveler,
Sheryl

Of course I'm fine and relaxed one day and then the next day I'm a maniac again. This time it's different. I think I've actually come to accept that my mother has late stage (although not end stage) dementia and I cannot control what goes on, nor can I take care of her. I've also come to accept that we will most likely run out of money and have to get Medicaid at some point. As long as I know I have attorneys to work with, SW's to work with, etc... and that my sister and I are doing the best that we can, I can sort of relax. I think accepting all of this is what is changing my psyche.

Marjk, thanks so much for the update. I had been trying to decide whether to post and ask or just bide my time. I guess coming to the realization that you can't make it better and that you are doing the best you can is the best one can hope for given the situation. I think of you and Pieberry often and always with amazement and admiration at how well you've done dealing with the rotten hand you've been dealt. Hang in there!!
Marie

quote:

Originally posted by Marjk:
...As long as I know I have attorneys to work with, SW's to work with, etc... and that my sister and I are doing the best that we can, I can sort of relax....

I can relate. When my mom was first diagnosed, the only person in her safety net was...ME.

I realized when I went on vacation last month that I could actually be gone without much worry - because the nurse-practitioner would be checking on her and available if anything new developed, the CGs were reliable so daily stuff was taken care of, worst, worst case I had a geriatric care manager I could call to step in if things really went to hell before I could get back.

It was a surprise and a relief to realize that there were actually other people I could count on to take care of, and they knew what their roles were and what to do.

Having a LO thats been diagnosed with AD,,well lets just say that as a child,,or sister or spouse of the" diagnosee",,,its a constant "ebb and tide" of emotions for us,,and for our LO's.

Sometimes the very best we can do for our LO's is to simply step back and let the pro's do their job,,but as an advocated of our LO's,,,its our job to insist that the "pro's" keep us informed every step of the way.

Then thank goodness for modern technology,,computers,,why there isn't anything that we can't look up to "self educate" ourselves enough to the point of getting our concerns over the the medical pro's,,,and if we can't find it,,we can always ask here,,we have tons of nurses that are our best info givers.

When we stop learning,,we stop living. Peace

So much of this is just understanding and accepting this disease. I truly couldn't comprehend or accept that my mother was later stages and having behavior issues. The fact that she's still quite sharp at times was really throwing me off. I know now that she definitely needs this behavioral NF and that she can't go back to an ALF. If she EVER, and ever is the key word here, gets out of the behavioral unit and can go to a senior residence, then we'll deal. Again, I don't think that's ever going to happen. Her next step if she gets out of here (once she actually gets in) with be an SNF.

Also learning to let others care take and make decisions was a huge step for me, and one that is definitely good for me, so far. I still torture everyone in the hospital with my phone calls, but they don't mind. They actually recognize my voice and seem happy to hear from me. I still go with treats for the staff when I visit.

Oh, Marj, it sounds like you are doing so much better. Acceptance of any of life's circumstances is key to surviving them.

I know for my brother and I, the more "clinical" facilities were really depressing at first. Then we realized that we were looking through our OWN eyes and not the eyes of our dear mother. She wasn't all into the pretty beauty shop, the soaring ceilings, the tile floors and linen tablecloths. She related to more one-on-one care, despite the surrounding. And that is what she is getting at the very-hospital-like NH she is in. Is it beautiful to us...NO! But she is doing much better. So the onus is on us to accept that.

And letting the professionals do their job...YES! Absolutely, but with our input, hopefully.

It sounds to me that you are doing much, much better. And for that, I celebrate with you.

We are here with you, Marj! Never forget it.