Has there been any improvement in your Mom now that it is a little over a week, I am glad she did well with the walker, so many changes for her, she seems to be getting good care which I am sure is a blessing for you !

Some improvement, but she seems to be fluctuating more than before. She'll not only fluctuate from day to day but from hour to hour. A few days ago she seemed to be eating better and even "talked" independently by saying, "Get with the program" to a care taker. It was out of context and didn't make sense but was amusing. Then the next day she was practically camotose again and not eating. Today when dad asked her how she liked the walker she was trying out at the hospital, she said, "I think it's special." Mind you, those may be the only words she says all day. She's normally silent, but she was before her fall, too. She was more alert today while we were at the hospital and the medical supply store, but being in a different environment may have helped with that. As dad was paying for her wheelchair and walker, her eyes were getting heavy, but by then it was 10:00. Usually she eats breakfast around 8:30 and goes back to bed right away, so it was definitely naptime.

I'm glad to hear your Mom is a little better. I think its a good thing she can't remember anyone, or that she worked there - it would make her very sad I think.
Dad is like that now too, fluctuating from hour to hour rather than day to day or week to week. Yesterday, the care team got him out of bed for , a few hours (he hasn't been out of bed for months because he was too weak) and it really upset him. He was extremely confused, didn't know where he was, and wasn't making any sense. He also cried all day to go home, but I think even if he was at home, he would still have been crying to go home - he was just so confused. He broke my heart asking me to take him with me - I felt like I was abandoning him. It was like leaving my baby at the creche for the first time. My only consolation is that the staff are wonderful and were very good to him.

I then had to go up and pretend to Mom that he was in great form - what a day!

Today he is sleeping all the time, just waking to eat, but I nearly prefer that to watching him crying all the time. Imagine that something as simple as moving him from his bed to his chair upset him so much. I just keep telling myself that tomorrow could be a better day (though sometimes an episode llike this can last days).

Ger, I'm sorry to hear about your father's experience. It's very interesting about his response to getting out of bed. My husband can no longer stand but the restorative aide at the SNF tries to 'walk' him on the parallel bars and holding him up with a gait belt once or twice a week. Putting some weight on the legs helps keep his bones and muscles strong. Most days he is unable or unwilling but sometimes he can take a few steps. HOWEVER, the next day is always a bad one--mentally and physically. At first, I thought it was just coincidence but I am convinced the stress adversely affects him. It's difficult to know whether the benefits outweigh the loss. The loss is only temporary. Why must everything be such a trade-off in this disease??

I just want to echo that!

'trade off'…..

what I was talking about in the fluctuating post……

everything that I do…that I know I shouldn't or know I now have trouble doing….

is something that costs me…..

it is measurable……

shouldn't do is a strong word….if I followed that…pretty soon I wouldn't be doing anything….

load……loading…..load balancing…..

I know I can't just do everything anymore….
some things the costs are just too high…now

and the 'things' that cause the problems….sometimes don't seem to be relevant in any kind of way….

…..

I just woke up at midnite…..forced myself to get up…..
I went to bed 16 hours ago….at 8am…..

I haven't been out of bed….of course I haven't had a trip to the bathroom….nor any meds….
all bad stuff….will cost me…
I am trying to normalize my hours to 'normal' people….it only makes things worse…like today….
so…..when I get out of bed…..I forget to go slow…..
I just, in one motion jump out of bed and start moving toward the bathroom…
and….the feeling was as follows….
I was moving smoothly….then rigid….I was being hit repetitively by a jack hammer in my head…..in my motion….
and so…it alternated…in a cycle that at some point balanced out….
of course I held on to the wall at some point….
there were other feelings and sensations…and resistance….and pushes….and just other stuff….
I didn't write it down soon enough…..

this is not anything new…..just thought I would share….

Hi Craig,

Thank you again for sharing with us. Such valuable insight.
Is your daughter with you at this time? Or anyone else?

Prayers,
Marilyn

Marilyn…

I am by myself for the last day and right now…
still….okay to be that way…really….allthough...not by design or wish…

My wife is working with me at the present….
Her Denial of Everything is maybe at a crossroads…
maybe...
Her willingness to work on Her is now present…
this may go somewhere, it may not…
Prayers for it to go somewhere…

I am almost finished emptying my house…
my near future will include me being close to others…
maybe even with my wife…

I know that I can not be alone for much longer…
no desire for that either….
but, I can not be in unsafe relationships either…
unsafe as in anyone who doesn't understand what is going on…
or with anyone who chooses to make things worse…
either through ignorance or malice...
spouse, family, friends, institutions….no matter….
Thank God, I am blessed to be able because of timeing…
to seek out safe places and safe people….
this is where I really feel for all of you caregivers…you are just dumped...placed in this role of figuring all of this out…
I hope that maybe every now and then a post I make can help you…
I pray that the posts that I ultimately will make that won't help….will be easy for you to spot…
and when I should no longer post ...will be….well…taken care of….

SandwichMom…excuse me for sidetracking your thread…
I follow all of you who are taking care of your LO's….
I really don't know how to comment on your experiences….
I am not trying to comment on all threads….
but, I do comment when someone brings up something that I think I experience…
it bothers me when I do this sometimes…
I am glad you are there for your Mother.

It's ok, Craig. It's helpful to read your experiences. I just wish my mom could communicate like you do. We don't know what she experiences or how she feels because she doesn't talk much at all, doesn't make sense when she does, and doesn't show ANY emotion. Her lack of communication with us, even nonverbal, is the loss I feel most keenly.

Craig - What is "normal"? It is a lot easier for us (me, hubby, caregivers) to adjust to Mom-in-law time than it would be for her to adjust to "normal" time. She is a lot less agitated and more content this way. If she sleeps for sixteen hours straight, then so be it. It must be for a reason. And I must say I admire you for not giving up. I let my MIL make her bed and get dressed on her own (even though I am close by). It takes forever and the bed is lumpy and askew, and her clothes might look a little weird, and she might be tired after the exertion, but I know these little things are really important to her. We are studying "Our Town" in my American Lit class. One of the themes is "The little things in life are really the BIG things." You never miss these little things until you don't have them anymore. Example - making the bed. Take care, all.
Donna

SandwichMom,

I fear when I can't communicate at all…among other things I fear…
I do have times when I can't communicate…mostly only moments…sometimes long minutes…

(nothing comes out….or only a sound…or only a word…sometimes the same word….over and over…
while inside…all the wheels are still turning...I know what I want to say...have it all lined up...am actually fighting with the situation...trying my hardest to make the words come out...trying to make the second word come out...trying not to repeat the same word over....conscious of all that I am aware of....surely not of all of it...)

very frustrating…and helpless to help those on the outside deal with it at the time…
and frustrating most times trying to explain to others what I expect them to do…a work in progress…
for as was said….at those times….I am helpless…nothing I can do to alter that moment…
any illusion of control…only exists outside of me at that time...

Donna,

Normal....wasn’t exactly the right word, nor the thought I was trying to portray....

maybe normalization of routine as a goal for dealing for present effects of new drug addictions....yeah....nothing sounds normal there...

my normal would be to sleep when I feel like it and be awake or not as I choose....that would make me happy...well only happy with how I am feeling at that moment....

until I start thinking about what I am not doing....or the fallacy that I can meet many responsibilities with responsible behavior...then I am not happy with that arrangement...unless I don’t care....which I tried for awhile (only after nearly killing myself after years dealing with this, trying to make everything work)....makes all the natives crazy...either way...no win....

so...here we are now....in drug and behavior treatment....normalization to what end? for purpose?
will I ever be normal again? no. its okay...

so....what normalization am I talking about? Now that I am taking drugs that are working against each other....drugs that have bad side effects....drugs that I am depending on them working against each other....drugs with effective lives that are 4 hours, 6 hours...12 hours.....

depending.....on.....?

everything.....else....

so now....

new normal, is drug induced state of equilibrium only achieved on a schedule....
ask me how I know?

I was still trying to wing the drug schedule and the sleep schedule...painful lessons....

and... I am not foolish enough....nor without insight to know that I will not perfect a normal or perfect routine....never will I achieve equilibrium....

but....I have to try.....for a better state of imperfection...with allowances for temporary setbacks with recovery...that is the perfect model....

(so...is there a nugget there?.....)

I felt almost normal when I was at Habit.....I don’t have to wonder why....it was designed to be that way....

they told us we will fail....over and over....thats okay too....

not trying to be normal.....trying to normalize....

one is impossible.....the other is reality...

....I really don’t want to start taking meds on an alarm...
I wanted to retain an illusion that I was still in control....
I fought it....I lost....
now if I miss a dose...of anything...if I miss sleeping....if I mess eating...
it is a major ordeal...not a minor inconvenience, not a little headache, not a little tummy ache, not a dull muscle ache....

NO....

it is a BIG, rotten, stinking...DEAL...

in ways that I can’t literally explain...

I can’t explain how I ‘feel’ so you can understand when I feel normal.....other than....
‘TORTURE’....

so.....let me try to explain how when I mess up.... how I feel.....from normal to messed up....

‘MESSED uP.....Torture’.....on drugs...

....then

I just want to sit right now and not do anything, but think...for awhile...
yes....that is what I really want to do most of the time...

I just want to sit or lay down and think or sleep...

I don’t want to talk, I don’t want to get up, I don’t want to watch TV, I don’t want to....do...

I just want to think.

....
not going to just do that, just yet...

I am going to set those alarms, and follow my calendar....all through the day, every day....and do some of those things that I sit and think about....for as long as I can.

Help me.....

I can say help me...it helps....I am in control again for a moment....for awhile....I decide for now....who...and how....

soon.....

I will sit and think....I fear....

maybe I won’t have to fear....I am comforted by reading about your LO’s who don’t have to fear...I am sure they are comforted...by you...all of you....

thank all of you for giving me hope for then...

Mom fell again this morning. No blood or ER trip this time. She tried to stand on her own after breakfast. The caregiver was 2 feet away but couldn't catch her. She hit her back on her wheelchair (she was getting up from a dining room chair). I suggested that we need to use her wheelchair seatbelt. Dad isn't sure they'll do that, though, because the facility she's in doesn't believe in restraining the residents. I've seen the seatbelt on another resident, but she looked like she would slide out of the chair without it, so that's not really the same as restraining. Dad is finally facing reality. He said, "I have a feeling it's time to write your mom's obituary." I told him I agreed, and that even if it's a year away, I'd rather plan everything now than have to do it in the midst of that intense grief.

Does she have a wheelchair alarm? There are two kinds: One 'beeps' when they lean forward in their chair [which wouldn't work for my husband who is always leaning forward] and the other when pressure on the seat is released. That's the one he has and also one in his bed. Might be a good idea. And most facilities do not allow physical restraints to be used.

Some states allow facilities to have physical restraints with an MD's order and the family's approval.

It's odd that chemical restraints are not governed by the same sorts of rules as physical restraints.

We found that writing our dad's obituary and making funeral arrangements & reception ahead of time really helped us a lot. Our family is so spread out and busy that getting done everything we could before the inevitable made it a lot less stressful once dad died. We had enough to deal with trying to figure out when to have the service, what with people flying in and driving long distances. Having a lot of the other stuff done helped quite a bit. The obituary and photo had been at the funeral home for several months, funeral arrangments and the reception place and food had already been taken care of. It was such a relief not to have to make all sorts of decisions once he died - there is enough that has to be done then. Lynn